Boy, looking back at my last blog, I guess sometimes you really do get what you hope for in life! Believe it or not, I got THAT phone call! My kidney doctor and transplant nurse both called to tell me that I have a live donor who will be giving me her kidney this year. I found out that she is a good friend of my brother and sister-in-law. She's just a 48-year-old average girl with four kids wanting to do something nice for someone else in the world, and something bigger than just a normal cash donation. Wow, whoever thought I could be on the other end of her generosity of her organ?
We are both very excited to meet each other but we don't want to jinx anything. I've been nervous to even mention getting a transplant at all, but I need everyone's help. I really need all my friends and family and neighbors to come together as this next year will probably be a very difficult one for me, at least the first six months. After talking with my brother and hearing about his experience, I learned your body goes through a lot of physical changes, mostly related to the post-op and medication changes. My doctors tell me I'll be taking about 40 pills a day, and that I'm sure is not going to make me feel my best. Until they get me to my right perfect dose for my body size, I'm sure I'll have my ups and downs, and that's what Jeff said is the hardest part.
Secondly, per the protocol at U of C, I will be required to personally travel there three times a week for the first three months after surgery. That will go down to two days a month and then one day a month once my dosages and labs are stable. I'm hoping this comes sooner than later as being blind requires me to get rides to all my doctor appointments. Just in the first three months alone, that's 36 rides. I can't expect my husband to take off 36 days of work, nor can I expect one friend to do it, and Tyler will be at college.
Perhaps I can ask all of you great friends to sign up for one day, and then I'll hire an Uber driver for the rest of the days. Please let me know if you are interested in driving and I will be happy to put you on the schedule or let you know who is in charge of it. This will start probably mid February as my transplant is scheduled for Feb 5 at U of C and I'll stay in the hospital for 10 days. (FYI, my surgery and these follow-up appointments will be at the University of Chicago, which is about a 1-hour drive from my house without traffic, and my appointments will be very brief, about 30 min. I'll just be getting blood drawn and seeing one of the nurses or doctors. I don't know what time my appointments will be yet but I can try to work them around your schedules.)
In addition to driving, I need everyone to come together and say their prayers for me as I've been very nervous about this whole process as it gets closer. As of now, it is 35 days away and I have 15 more dialysis days. As much as I'm excited, I am also nervous because I have a clotting disorder they told me could possibly cause problems during the surgery, which is very vascular.
In addition, I'll have both my kidneys removed the same day before transplanting the new one. That's going to be complicated by the fact that my kidney tumors and cysts are quite large and I have a lot of scar tissue built up from previous surgeries and radiation for the tumors, plus I had a punctured lung in the past that could puncture again. So, the doctors are willing to try to move aside and bag both kidneys laparoscopically. Then, to remove the bags without leaving any cancer cells behind, they will make an incision from my sternum down to my pelvis to remove both organs. If they have any complications, they will not move forward with the transplant. They will not remove the donor's kidney until they know I'm stable and within two hours of getting the new kidney put in.
The removal surgery itself will take 6-8 hours depending on the approach, plus they need two hours to put in the new kidney. If my blood pressure is not stable enough to have the new kidney put in, I'll have to stay in the hospital for a week and remain on dialysis for eight weeks before they can try again. I really need lots of prayers and good wishes for everything to go just perfectly on the first try, including before, during and after the surgery.
The good news is since it's a live kidney, it should immediately start to work, which means I'm immediately done with dialysis (or I may require just one more). They'll also pull the catheter out of my chest, which will be great as I'm so excited about taking a shower again.
The interesting part I find is the location of where they put the new organ: it's in your pelvis, not where your kidneys normally are. That's because there is nothing else in your pelvis that's in its way, so it's the most open area to operate without any complications of hitting another organ.
This transplant is coming at a great time because if there was no kidney to be had, I would be having my kidneys removed regardless because of my tumor growth, which would have meant a separate surgery.
If this girl backs out, or one of us gets sick, or something else happens, I'm also signed up at Madison, WI, and will start working on Plan B.
So, needless to say, my life has been somewhat busy due to the excitement of this news, getting ready for and living through the holidays, and preparing for what I have on my plate for next month before surgery. In addition to my dialysis schedule, I have to see the transplant surgeon twice in January plus I'll see anesthesia, hematology, endocrinology, and pre-op.
And then there are the eye appointments. I had done one cycle of Avastin injection and saw no progress, so I took a month off to see if anything would change. Unfortunately, my vision is still completely gone and I can barely see light perception at all. My retinal doctor decided rather than doing an invasive surgery, he suggests radiation to see if this could bring back some shadows. The problem is I need to go in for five consecutive days of radiation for two straight weeks, but I still also need to do my three days per week of dialysis and I cannot miss any of my pre-op appointments. So, my next month is just going to be critically busy. Good thing we got all the shopping, partying, and baking out of the way!
I am still waiting for that department to call and arrange the radiation to begin, but they would like to start it ASAP. I'm hoping to get it in before the kidney surgery on Feb 5. I have still have yet to see anything since the first week of August, which was two weeks after my dialysis began. I wonder if some vision will come back on its own after I stop dialysis? Hopefully it's not permanent damage.
Between all that has to be done, and the transplant getting closer, I'm getting more nervous and excited. I'm particularly worried about getting all the rides scheduled. I'm waiting to hear my sister Robin's schedule but I know she cannot come out in January at all. My brother Jeff offered to come but his condition right now is very poor with his own medical problems.
Regarding my recent brain scan and spinal cord scan (3.5 hours in the MRI), everything was unchanged and a-ok, which is great news. Once I take care of this kidney, really my only health problem is the blindness right now. Too bad they can't do dual kidney/eye transplants. Wouldn't that be nice?
It was great to see everyone this last month at the many holiday parties/dinners. Christmas Eve was spent with my kids watching all the old Christmas movies, and then Christmas day the kids woke up and got lots of wonderful gifts. They were both very happy with their presents this year. We spent the afternoon and evening at my cousin Curt and Kate's home in Naperville and had a big feast and dessert, played some games, and the kids even enjoyed the Jacuzzi outside in the cold for quite a while. It was really nice to catch up with everyone in a happy setting. The last few times were at funerals or something more depressing.
This break has gone by so quickly. Alyssa goes back to school on Monday and Tyler follows two weeks later. I sure enjoyed having them around again. We just went to the Trans-Siberian Orchestra as a family, probably a once in a lifetime event, and we're going to see Elf the play on New Years Eve followed by a neighborhood New Years Eve party. In addition, Sheila's family is in town from Atlanta for a few days. If all goes well, we plan to go on a ski/snowboard trip with the kids on Sunday. We've had such a warm winter but luckily the resort is making snow. The kids are so excited to go.
Thanksgiving was first spent in dialysis and then followed up with a very large dinner at my cousin Debbie's house in Lisle. No matter what anyone else said, I think I have the most to be thankful for this year. Thank you to all the drivers who have helped me since July to get me through my dialysis appointments three days per week. It really does not go unappreciated. A special thanks to Suzanne who always goes above and beyond getting me to dialysis but my other doctors. In addition to Steve, she is like a mom always checking to make sure I have food and other necessities in my house. I am so blessed to have her as well as everyone else.
My New Year's resolution is to come through the surgery with flying colors, and hopefully without whining and complaining too much to my friends and family. And without pain, of course. Hope you all had a very merry and wish you all a happy happy 2016!
Saturday, January 2, 2016
Friday, October 23, 2015
To pee or not to pee?
Hard to believe, it is now well into fall and nearly Halloween. Since my last blog, it seems like so much has happened. Before I begin, I'm re-posting a recent photo of me and my beautiful children, Tyler and Alyssa:
The kids are off to school. Alyssa is in 7th grade and she is involved in tap, art, and being the usual soon-to-be-teenager. Happy 13th Birthday Alyssa, Oct. 24th! Tyler is now in his junior year at Whitewater studying marketing. He is happy to be taking courses of substance rather than the basics. He played for the school's club soccer team this fall, which is exciting for him as he has always wanted to play soccer. He is also still involved with his girlfriend Lindsey. He'll be flying to Kansas to see her for Halloween. Steve is still working in sales and has been with the company for several years now. He says it's been slow and blames it on Obamacare, which may or may not be true but it gives him something to point at. Chelsea was invited to her first party ("paw-ty") today for Cavaliers only. There were about 20 dogs from puppy to age 14 all in costume. I imagine it was about the cutest thing you could ever see. It makes me want to get another puppy.
I started my dialysis back in late July. My sister Robin and her two girls came out and stayed for a full week, so we got to do a few things prior to my going in the hospital and for a few days afterward. It was great to visit with my nieces, Taylor and Olivia, and as always to see my sister Robin, who is always there for me. Sadly enough, I feel like she always flies in when things are bad, and I told her one time she needs to fly in for something fun rather than in crisis mode.
My first eight weeks of dialysis went rather well, and I was just starting to feel my energy increasing when I ended up in the hospital. Several weeks ago I woke up with a very scary, swollen, and painful port area and a low-grade temperature, which landed me in the emergency room and then the hospital for nine days. They did blood cultures and also cultured out my port, and found out I was septic and it was infected. The infection traveled very quickly through my body in the blood stream because the catheter lays in that area of my heart, and it's very dangerous. Within 12 hours of being admitted, my fever was 103 and I had no blood pressure, so they called one of those codes and transferred me to ICU immediately, where I stayed for three days until I became more stable. Basically, I had to wait until my body was strong enough to get a temporary port put in, and then get it removed to have another permanent catheter inserted. The doctors are now thinking that I need to get some access other than this type of port, and they're hoping to try to insert one in my left upper arm in late November. The reason for delaying this is because they wanted me on heavy duty antibiotics for six weeks to completely clear the infection.
Dialysis isn't a painful thing but it is very physically draining because during your treatment there is a lot of fluid and electrolytes shifting around. Most of my treatments take 3-4 lbs of fluid off me over the four-hour session. I actually feel fine sitting in their chair; it's when I come home that I feel the effects. Also, as dialysis takes over the job of my kidneys, I produce less urine so I pee much less. Now it's maybe twice per day. I'm like a camel. When they remove my kidneys I won't pee at all.
You're probably wondering how I get to dialysis every day. Well, lucky me, I have a great group of friends. I think there are 16 in total who fill in the slots every Tues and Thurs for getting me to and from dialysis, and Steve usually drives me on Saturdays. The real nice thing about it is my friends take turns and it's good for me socially as I get to catch up with all of them. The other four days of the week seem to pass rather quickly. I usually have a doctor appointment or two, and I spend one day with Liz, my social work helper who comes every Wednesday.
I recently went for an MRI of my kidneys so the doctors can plan when to remove those, and found there was more growth but I was told not to worry since we're taking them out anyway. I will be meeting a surgeon on Nov. 2 to discuss when I will get them removed and the approach, which will now not be laparoscopic due to a lot of scar tissue I had developed.
Boy, it would be a great surprise to one day get a phone call saying "We have a donor!" I wait for that day, as then I'll no longer need dialysis. If anyone is interested in donation, it would be so much appreciated. It's all very confidential and I am not told if you call or don't call. It's much easier for a donor as it's a laparoscopic procedure that involves just a one-night stay. You can return to work in 1-2 weeks and all the medical testing, surgery, and follow-up are covered by my insurance. You can call the U of C number if you're interested: 773-702-4500. In the meantime, in two more weeks I go to Madison, WI, to sign up for their transplant program. After four months of waiting, it's finally here; I'll officially be on both the IL and WI transplant lists.
In my last blog, my eye was doing so well. I was actually able to see shadows, some light, and sometimes even color. In fact, for my first two weeks in dialysis I was seeing really good. Since then it has been going back to square one. A month ago the eye doctor said my retina was again detached and the fluid buildup underneath was causing me not to see. He didn't seem to think there was any change to the optic nerve tumor, and recommended that we start eye injections and laser treatments again every month. I had not seen anything in about 10-11 weeks and I was hoping this would work again. So, we had round one then and I went for round two yesterday. This time I walked away so discouraged because he was less hopeful than usual. He said everything looks exactly the same but my vision and ability to see any lights has decreased, which causes him some concern. I asked him about an eye treatment named proton beam therapy I learned about at a conference for VHL last Saturday, but he said no, it will not work with my problem. He's not ready to throw in the towel, so I'll still go back to him every month.
I only hope they can find a way to get any vision back so that I am not always in the dark. It's amazing how much seeing shadows here and there can make me feel so much more oriented, rather than seeing only pitch black or really bright white (even at night when the lights are out and my eyes are closed). When I used to see things like my arm or parts of the couch, it helped me to feel where I was in the world.
I can't believe it has been nearly three years since I lost my vision. I think it was Oct. 20. I'm still not comfortable with it at all. I'm not sure how many years it takes for people to become comfortable with blindness, but there is more than you can imagine to learn and there are so many resources to find that are not spoon-fed to you because of our system being so poorly funded and staffed. The technology for the blind is good but the economy is not, so the State has cut back on things I don't agree with like transportation and all the disability needs. For example, in over three years I've had maybe 7-8 trainings on how to use my blind white cane, which is like two per year, which is nothing.
However, I am feeling more comfortable with some other stuff, like I made a roasted chicken and vegetables dinner the other night and it wasn't hard to make at all. I can also make pancakes and eggs and stuff like that. It's not hard but it all takes so much more time because everything has to be done differently and with many more steps. For example, measuring ingredients is 10 times harder and messier when you're blind.
One last medical note. I don't need to do a followup on my brain and spine until Dec. 2, when I'll have a 3.5 hr. MRI scan. They even sent me an RX for Valium due to the length of the exam. That was awfully nice.
I'm spending lots of time with my wonderful neighbors and friends, including some old college friends recently. And I just went to the best Halloween party. The house was done really scary, the pumpkin martinis were the best martinis I've had in my life (they went down like water), and everyone got a witch hat to wear for the group photo.
Hopefully by my next blog I'll be out of this nightmarish spooky life and into a brighter, shadow-filled holiday season. What would even make it better is if the phone call arrives for my kidney transplant.
Thank you to everyone who has helped me with driving, emotional support, or just getting me out of the house for some good old fun this past month. I really do appreciate all that you do for me.
The kids are off to school. Alyssa is in 7th grade and she is involved in tap, art, and being the usual soon-to-be-teenager. Happy 13th Birthday Alyssa, Oct. 24th! Tyler is now in his junior year at Whitewater studying marketing. He is happy to be taking courses of substance rather than the basics. He played for the school's club soccer team this fall, which is exciting for him as he has always wanted to play soccer. He is also still involved with his girlfriend Lindsey. He'll be flying to Kansas to see her for Halloween. Steve is still working in sales and has been with the company for several years now. He says it's been slow and blames it on Obamacare, which may or may not be true but it gives him something to point at. Chelsea was invited to her first party ("paw-ty") today for Cavaliers only. There were about 20 dogs from puppy to age 14 all in costume. I imagine it was about the cutest thing you could ever see. It makes me want to get another puppy.
I started my dialysis back in late July. My sister Robin and her two girls came out and stayed for a full week, so we got to do a few things prior to my going in the hospital and for a few days afterward. It was great to visit with my nieces, Taylor and Olivia, and as always to see my sister Robin, who is always there for me. Sadly enough, I feel like she always flies in when things are bad, and I told her one time she needs to fly in for something fun rather than in crisis mode.
My first eight weeks of dialysis went rather well, and I was just starting to feel my energy increasing when I ended up in the hospital. Several weeks ago I woke up with a very scary, swollen, and painful port area and a low-grade temperature, which landed me in the emergency room and then the hospital for nine days. They did blood cultures and also cultured out my port, and found out I was septic and it was infected. The infection traveled very quickly through my body in the blood stream because the catheter lays in that area of my heart, and it's very dangerous. Within 12 hours of being admitted, my fever was 103 and I had no blood pressure, so they called one of those codes and transferred me to ICU immediately, where I stayed for three days until I became more stable. Basically, I had to wait until my body was strong enough to get a temporary port put in, and then get it removed to have another permanent catheter inserted. The doctors are now thinking that I need to get some access other than this type of port, and they're hoping to try to insert one in my left upper arm in late November. The reason for delaying this is because they wanted me on heavy duty antibiotics for six weeks to completely clear the infection.
Dialysis isn't a painful thing but it is very physically draining because during your treatment there is a lot of fluid and electrolytes shifting around. Most of my treatments take 3-4 lbs of fluid off me over the four-hour session. I actually feel fine sitting in their chair; it's when I come home that I feel the effects. Also, as dialysis takes over the job of my kidneys, I produce less urine so I pee much less. Now it's maybe twice per day. I'm like a camel. When they remove my kidneys I won't pee at all.
You're probably wondering how I get to dialysis every day. Well, lucky me, I have a great group of friends. I think there are 16 in total who fill in the slots every Tues and Thurs for getting me to and from dialysis, and Steve usually drives me on Saturdays. The real nice thing about it is my friends take turns and it's good for me socially as I get to catch up with all of them. The other four days of the week seem to pass rather quickly. I usually have a doctor appointment or two, and I spend one day with Liz, my social work helper who comes every Wednesday.
I recently went for an MRI of my kidneys so the doctors can plan when to remove those, and found there was more growth but I was told not to worry since we're taking them out anyway. I will be meeting a surgeon on Nov. 2 to discuss when I will get them removed and the approach, which will now not be laparoscopic due to a lot of scar tissue I had developed.
Boy, it would be a great surprise to one day get a phone call saying "We have a donor!" I wait for that day, as then I'll no longer need dialysis. If anyone is interested in donation, it would be so much appreciated. It's all very confidential and I am not told if you call or don't call. It's much easier for a donor as it's a laparoscopic procedure that involves just a one-night stay. You can return to work in 1-2 weeks and all the medical testing, surgery, and follow-up are covered by my insurance. You can call the U of C number if you're interested: 773-702-4500. In the meantime, in two more weeks I go to Madison, WI, to sign up for their transplant program. After four months of waiting, it's finally here; I'll officially be on both the IL and WI transplant lists.
In my last blog, my eye was doing so well. I was actually able to see shadows, some light, and sometimes even color. In fact, for my first two weeks in dialysis I was seeing really good. Since then it has been going back to square one. A month ago the eye doctor said my retina was again detached and the fluid buildup underneath was causing me not to see. He didn't seem to think there was any change to the optic nerve tumor, and recommended that we start eye injections and laser treatments again every month. I had not seen anything in about 10-11 weeks and I was hoping this would work again. So, we had round one then and I went for round two yesterday. This time I walked away so discouraged because he was less hopeful than usual. He said everything looks exactly the same but my vision and ability to see any lights has decreased, which causes him some concern. I asked him about an eye treatment named proton beam therapy I learned about at a conference for VHL last Saturday, but he said no, it will not work with my problem. He's not ready to throw in the towel, so I'll still go back to him every month.
I only hope they can find a way to get any vision back so that I am not always in the dark. It's amazing how much seeing shadows here and there can make me feel so much more oriented, rather than seeing only pitch black or really bright white (even at night when the lights are out and my eyes are closed). When I used to see things like my arm or parts of the couch, it helped me to feel where I was in the world.
I can't believe it has been nearly three years since I lost my vision. I think it was Oct. 20. I'm still not comfortable with it at all. I'm not sure how many years it takes for people to become comfortable with blindness, but there is more than you can imagine to learn and there are so many resources to find that are not spoon-fed to you because of our system being so poorly funded and staffed. The technology for the blind is good but the economy is not, so the State has cut back on things I don't agree with like transportation and all the disability needs. For example, in over three years I've had maybe 7-8 trainings on how to use my blind white cane, which is like two per year, which is nothing.
However, I am feeling more comfortable with some other stuff, like I made a roasted chicken and vegetables dinner the other night and it wasn't hard to make at all. I can also make pancakes and eggs and stuff like that. It's not hard but it all takes so much more time because everything has to be done differently and with many more steps. For example, measuring ingredients is 10 times harder and messier when you're blind.
One last medical note. I don't need to do a followup on my brain and spine until Dec. 2, when I'll have a 3.5 hr. MRI scan. They even sent me an RX for Valium due to the length of the exam. That was awfully nice.
I'm spending lots of time with my wonderful neighbors and friends, including some old college friends recently. And I just went to the best Halloween party. The house was done really scary, the pumpkin martinis were the best martinis I've had in my life (they went down like water), and everyone got a witch hat to wear for the group photo.
Hopefully by my next blog I'll be out of this nightmarish spooky life and into a brighter, shadow-filled holiday season. What would even make it better is if the phone call arrives for my kidney transplant.
Thank you to everyone who has helped me with driving, emotional support, or just getting me out of the house for some good old fun this past month. I really do appreciate all that you do for me.
Friday, October 2, 2015
My beautiful children
A recent photo of me and my kids! Tyler is now a junior at the University of Wisconsin - Whitewater, and Alyssa is in 7th grade.
Friday, July 17, 2015
LISTED AT LAST! Now I'm in search of an O+ Kidney
Bang, boom, pop! The fireworks have gone off and yes, I am finally on the official transplant list at University of Chicago. All my jumping through hoops has finally paid off. I have started to also try to get on the transplant list at University of Wisconsin Hospital's Transplant Center in Madison as the wait in Wisconsin is three years vs. five or six years in Illinois. All my records have been sent to them and I've done all the phone screening. I'm now just waiting to get called for a one-day, six-hour, intensive in-person screening there. The good thing is they told me I would get an answer the same day as my screen as to whether or not I'll be on the list, and my start date will become retroactive to the start date at U of C, which is April 20, which is awesome.
In the process of getting on the lists, we counted how many appointments I had last year in the city at U of C. We counted 93 appointments and I only missed one. They wanted to make sure I was a "compliant" patient, and I think I passed. I certainly hope this year there will not be so many appointments in the city, especially since I will be on dialysis three days per week.
On Monday, July 27, I will be admitted at Advocate Condell Medical Center here in Libertyville to have the Port-a-cath inserted. This is the catheter that goes into your heart. One part of the valve will open to the dialysis machine to allow my blood to flow out into the machine and get filtered, and then it will return in the other side of the port once it's cleaned. Being that these ports are external, there is a high risk of getting infection and it needs to be specially cared for. The doctor told me I cannot go swimming for the next few years or until I get my transplant. That was bad enough, but then he also said I will not be able to shower. I'll have to do a sponge bath and wash my hair in the sink because there is no way to completely cover the catheter and avoid getting it wet. While I am in the hospital, I hope I can find a product to cover it that the doctor will approve so I can take a shower, otherwise I may have no friends at all after three years of no showering or baths.
Therefore, once again, I'm hoping to get a kidney very shortly. I was not meant to be blind or to be on dialysis (ha ha). I'm not enjoying any of the nonsense that I go through every day anymore, and this is certainly not the life I imagined having after age 50. Come on, Oprah said 50 is supposed to feel like the new 40, but my 50s have got me going in the other direction - feeling much older.
As for my weight, it has finally stabilized, but the doctors are concerned that I have lost so much weight (about 25 lbs over six months) that it was significant enough to prove kidney failure was the cause. That, as well as my complaints of itching and severe fatigue, are the reasons they are having me start dialysis in the next week or so. I thought I was just still losing steroid weight.
I saw a hematologist this past week to make sure it was safe to go ahead with dialysis and the insertion of the catheter, since I have a bleeding disorder and I am prone to blood clots. He will order extra platelets so that I don't have bleeding issues during the surgery. As for my clotting issue, he said it could be hereditary. He told me I need to be very careful and not sit too long because I can get them again.
My dialysis will begin at Condell once they put in the Port-a-cath. I'll stay in the hospital for the first treatments (five days maximum), which will take place approximately every other day. After I'm discharged, I'll do outpatient dialysis for three days per week.
About eight weeks after starting dialysis, the doctors will reevaluate me in terms of my weight and energy level, and if it is improved, they want to take out both of my kidneys (what's left of them). The reason for this is because I have kidney cancer in both of them, and you cannot have any cancer in your body when you go to get your transplant. Since we don't know the transplant date, we'll play it safe and just get them out. (Most people who go on dialysis keep their kidneys in and eventually they just shrink away and disintegrate. Space is not an issue because new kidneys are placed in the pelvic area, not in the back.) The nice thing is it's not as major of a surgery. It's actually really cool. They will remove both my kidneys laparoscopically, like they would for any kidney donor, but times two. They will make only a one-inch incision, clamp everything off, wrap the kidney in a bag, and pull the bag out through the hole. No cancer cells can get out because they'll be in the bag.
So if anyone wants to know what it actually feels like to donate a kidney, just ask me, because I'll soon be donating two of mine to science.
When I do the kidney removal surgery, I'll do dialysis in the hospital during my stay. The bad thing is once they take out my kidneys, I will no longer be going to the bathroom and peeing, so I have to watch how much I drink, especially during the longer periods between dialysis. All that fluid has to go somewhere, and usually it's your ankles, face, wrists and hands, just like if you're feeling puffy and bloated. The fluid will be removed in dialysis.
If you are interested in donating a kidney for me, please call U of C hospital at 773-702-4500 and tell them so. I won't know about it unless you tell me because it's all very private due to the HIPAA laws. All surgical procedures as well as the screening are paid for through my insurance.
My vision remains unchanged. I still follow up with my eye doctor every six weeks. I have not had any treatments or therapy in my eye since Jan. 2015, yet I had some scans done, and when my doctor looks in my eye, he says it looks better than it ever has. This must be why I've had several episodes where I can see better shadows. When I tell people I see, I never see straight on, just angled vision. But, on July 4th, I was braiding Alyssa's hair before the fireworks and I was so excited that I could see her hair and braids (shadow-like), and I was able to see the really large fireworks. My plan is to go again to see fireworks in August and sit closer this time, just to see how much my eye perceives the light of the fireworks. I think the brightness is what makes it happen. I don't think I'm imagining it because I can't reproduce it right now, in fact I see nothing right now. Although I'll never have very useful vision, it reminds me that I'm still connected because when you're in the dark all the time, it feels like you're in a black box and there's no signal to the outside. I hate it; it's not for me. But I love going to sleep because everything is in color. Maybe that's why I sleep a lot (ha ha). Still, I would rather have seen than not seen; I feel so bad for those who have never had sight.
Everything else is stable. I'm not due for any brain or spinal scans over the summer, and thankfully I'm having no problems in that area.
Elizabeth, my helper, does a great job of helping me with all my medications, doing all my errands with me, all my computer work, and some local doctor appointments as well. She tried to schedule her classes this fall so she could bring me home on dialysis days, but unfortunately that didn't work out. She's just so thoughtful. She is now planning on going into the blind field of social work because she loves it. I kind of consider her like a second daughter. She, her mother (my cleaning lady) and I all get along so well that we all went to see a Beatles knock-off concert in Chicago. It was a great day and even better as we followed it up at Cheesecake Factory. I not only have good help, but I feel they are my friends.
In addition to her help, of course I have Suzanne, my #1 hand who takes me everywhere Liz doesn't, which is all my Chicago appointments and some local appointments as well. I can never say enough about her; she's been the best of the best friends and she's like an angel with a straight line to Heaven. I guess I'm spoiled. I've got another friend, Angela, who takes me out every week, whether for errands or a mani-pedi or something. She tries to do the feel-good kind of day with me. Everybody else I see when they have time. Everyone's very busy working and with their families now being home, which I understand as my two kids are home now, too. I've had special days with Lori Pritchett, Mindy, Carrie, DiTy, Patti, Darlene, Nancy, Ali, Mary Jo, and Leslie. I hope I'm not missing anyone.
This week, I celebrated my half-birthday with my great group of neighborhood friends: Corrine, Karin, Brenda, Suzanne and Angela, as we have a birthday club in my subdivision. It was at Karin's house rather than going out where it's hard for me to hear. We had all my favorite foods and everyone did a part of the dinner, and then we had cherry cheesecake pie from the Cheesecake Factory. Afterward, we just sat at the fire pit outside chatting and enjoying ourselves until almost midnight. At a restaurant we would have been kicked out. I also got a bunch of presents. How nice is that! Plus, I love the idea that it's not my birthday yet because I don't feel so old. I always wanted a summer birthday and now that I'm 53 and a half, I finally had one. Lol.
Now that we've had rain every day, everything is probably greener than it has ever been. The only thing bad so far this summer is when it's sunny, it's cool, and when it's warm, it's raining. So we haven't had many trips to the pool or beach, or suntanning days. It's been like a long spring.
My son Tyler got home mid-May and started lifeguarding, yet quit that job 3.5 weeks later since he was mostly holding a sign saying it was closed due to chilly weather and rain. Now he is working at Banner Camp, a day camp for kids aged 4-15, and he's having a blast doing different sports, teaching swimming lessons, singing camp songs, etc. He comes home every day with a smile on his face, happy but tired, then works out, cleans up, and goes out with his girlfriend. It's good to see him so happy. He finished his sophomore year with a 3.0 overall GPA. He starts his real classes in marketing this coming fall. He turned 20 on July 5 and he's going to the Country Thunder concert in Wisconsin as our birthday gift to him. His roommate is flying in for it, too. They'll all sleep out in tents but he'll shower at my friend Leslie's house.
Alyssa didn't get out of school until mid-June. She's having a great summer as well. She went to an overnight camp for a week, has seen several movies, has had several sleepovers, and a few trips to the beach and pool. She's very happy and enjoying herself. She decided this year she wants money to buy things, so she's now doing chores for pay and she does them with a smile. It's amazing what a few dollars will do. I should have offered her money years ago.
Steve is just working and still enjoying his job. He just spent the weekend in Michigan to see his parents and brother. Early last month, he went to Las Vegas with his brother and dad. We still live here in Libertyville, so as you can guess, he didn't win big. Lol.
Chelsea just turned eight. We can't believe she's getting a little gray, just like her mother. Poor thing.
My sister Robin from Pennsylvania will be coming on July 21 through August 4 to visit, though unfortunately she's not bringing her little kids/chicklettes with her. This will be a great time for us to have some good quality time together. Hopefully I'll have some energy to do so. It is so sweet of her to offer to take so much time out of her life for me.
My brother Jeff recently had brain radiation. The biggest complication you can have is with swelling either initially or about a year later, and so far he's three weeks out but suffering from worse headaches, so say your prayers that he won't have to go in for open surgery and that the headaches will improve and go away. I was hoping his family would come in this summer for a visit but they're not sure yet.
I saw my extended family on Father's day at my cousin Curt's house and had a great visit. I wish they were able to spend time with me more often, even just one day a month. I really wish things were the way they used to be when I could drive. Now that it's so hard for me to get places, I don't go to all the functions and see people as much as I would like (like my cousin's wedding or my 35th high school reunion), and can't go out when I have a craving for something. It drives me nuts that I can't just get up and go.
Hopefully by my next post I will be full of much-desired energy. I almost forgot what that is. Hopefully this dialysis process, even though I need to do it until I find a transplant, will go by fast. Who knows, maybe someone will want to donate before my next post and my life will be even more changed for the better. Please keep in touch with me because I'm going to be doing a lot of sitting, and I'd love to hear from you as I'll be living vicariously through you. Or, if you ever want to hang with me for a few hours at the clinic during a dialysis session, that would be greatly appreciated as well. Everyone have a great rest of your summer and enjoy the last few weeks with your kids before they are off to school again!
In the process of getting on the lists, we counted how many appointments I had last year in the city at U of C. We counted 93 appointments and I only missed one. They wanted to make sure I was a "compliant" patient, and I think I passed. I certainly hope this year there will not be so many appointments in the city, especially since I will be on dialysis three days per week.
On Monday, July 27, I will be admitted at Advocate Condell Medical Center here in Libertyville to have the Port-a-cath inserted. This is the catheter that goes into your heart. One part of the valve will open to the dialysis machine to allow my blood to flow out into the machine and get filtered, and then it will return in the other side of the port once it's cleaned. Being that these ports are external, there is a high risk of getting infection and it needs to be specially cared for. The doctor told me I cannot go swimming for the next few years or until I get my transplant. That was bad enough, but then he also said I will not be able to shower. I'll have to do a sponge bath and wash my hair in the sink because there is no way to completely cover the catheter and avoid getting it wet. While I am in the hospital, I hope I can find a product to cover it that the doctor will approve so I can take a shower, otherwise I may have no friends at all after three years of no showering or baths.
Therefore, once again, I'm hoping to get a kidney very shortly. I was not meant to be blind or to be on dialysis (ha ha). I'm not enjoying any of the nonsense that I go through every day anymore, and this is certainly not the life I imagined having after age 50. Come on, Oprah said 50 is supposed to feel like the new 40, but my 50s have got me going in the other direction - feeling much older.
As for my weight, it has finally stabilized, but the doctors are concerned that I have lost so much weight (about 25 lbs over six months) that it was significant enough to prove kidney failure was the cause. That, as well as my complaints of itching and severe fatigue, are the reasons they are having me start dialysis in the next week or so. I thought I was just still losing steroid weight.
I saw a hematologist this past week to make sure it was safe to go ahead with dialysis and the insertion of the catheter, since I have a bleeding disorder and I am prone to blood clots. He will order extra platelets so that I don't have bleeding issues during the surgery. As for my clotting issue, he said it could be hereditary. He told me I need to be very careful and not sit too long because I can get them again.
My dialysis will begin at Condell once they put in the Port-a-cath. I'll stay in the hospital for the first treatments (five days maximum), which will take place approximately every other day. After I'm discharged, I'll do outpatient dialysis for three days per week.
About eight weeks after starting dialysis, the doctors will reevaluate me in terms of my weight and energy level, and if it is improved, they want to take out both of my kidneys (what's left of them). The reason for this is because I have kidney cancer in both of them, and you cannot have any cancer in your body when you go to get your transplant. Since we don't know the transplant date, we'll play it safe and just get them out. (Most people who go on dialysis keep their kidneys in and eventually they just shrink away and disintegrate. Space is not an issue because new kidneys are placed in the pelvic area, not in the back.) The nice thing is it's not as major of a surgery. It's actually really cool. They will remove both my kidneys laparoscopically, like they would for any kidney donor, but times two. They will make only a one-inch incision, clamp everything off, wrap the kidney in a bag, and pull the bag out through the hole. No cancer cells can get out because they'll be in the bag.
So if anyone wants to know what it actually feels like to donate a kidney, just ask me, because I'll soon be donating two of mine to science.
When I do the kidney removal surgery, I'll do dialysis in the hospital during my stay. The bad thing is once they take out my kidneys, I will no longer be going to the bathroom and peeing, so I have to watch how much I drink, especially during the longer periods between dialysis. All that fluid has to go somewhere, and usually it's your ankles, face, wrists and hands, just like if you're feeling puffy and bloated. The fluid will be removed in dialysis.
If you are interested in donating a kidney for me, please call U of C hospital at 773-702-4500 and tell them so. I won't know about it unless you tell me because it's all very private due to the HIPAA laws. All surgical procedures as well as the screening are paid for through my insurance.
My vision remains unchanged. I still follow up with my eye doctor every six weeks. I have not had any treatments or therapy in my eye since Jan. 2015, yet I had some scans done, and when my doctor looks in my eye, he says it looks better than it ever has. This must be why I've had several episodes where I can see better shadows. When I tell people I see, I never see straight on, just angled vision. But, on July 4th, I was braiding Alyssa's hair before the fireworks and I was so excited that I could see her hair and braids (shadow-like), and I was able to see the really large fireworks. My plan is to go again to see fireworks in August and sit closer this time, just to see how much my eye perceives the light of the fireworks. I think the brightness is what makes it happen. I don't think I'm imagining it because I can't reproduce it right now, in fact I see nothing right now. Although I'll never have very useful vision, it reminds me that I'm still connected because when you're in the dark all the time, it feels like you're in a black box and there's no signal to the outside. I hate it; it's not for me. But I love going to sleep because everything is in color. Maybe that's why I sleep a lot (ha ha). Still, I would rather have seen than not seen; I feel so bad for those who have never had sight.
Everything else is stable. I'm not due for any brain or spinal scans over the summer, and thankfully I'm having no problems in that area.
Elizabeth, my helper, does a great job of helping me with all my medications, doing all my errands with me, all my computer work, and some local doctor appointments as well. She tried to schedule her classes this fall so she could bring me home on dialysis days, but unfortunately that didn't work out. She's just so thoughtful. She is now planning on going into the blind field of social work because she loves it. I kind of consider her like a second daughter. She, her mother (my cleaning lady) and I all get along so well that we all went to see a Beatles knock-off concert in Chicago. It was a great day and even better as we followed it up at Cheesecake Factory. I not only have good help, but I feel they are my friends.
In addition to her help, of course I have Suzanne, my #1 hand who takes me everywhere Liz doesn't, which is all my Chicago appointments and some local appointments as well. I can never say enough about her; she's been the best of the best friends and she's like an angel with a straight line to Heaven. I guess I'm spoiled. I've got another friend, Angela, who takes me out every week, whether for errands or a mani-pedi or something. She tries to do the feel-good kind of day with me. Everybody else I see when they have time. Everyone's very busy working and with their families now being home, which I understand as my two kids are home now, too. I've had special days with Lori Pritchett, Mindy, Carrie, DiTy, Patti, Darlene, Nancy, Ali, Mary Jo, and Leslie. I hope I'm not missing anyone.
This week, I celebrated my half-birthday with my great group of neighborhood friends: Corrine, Karin, Brenda, Suzanne and Angela, as we have a birthday club in my subdivision. It was at Karin's house rather than going out where it's hard for me to hear. We had all my favorite foods and everyone did a part of the dinner, and then we had cherry cheesecake pie from the Cheesecake Factory. Afterward, we just sat at the fire pit outside chatting and enjoying ourselves until almost midnight. At a restaurant we would have been kicked out. I also got a bunch of presents. How nice is that! Plus, I love the idea that it's not my birthday yet because I don't feel so old. I always wanted a summer birthday and now that I'm 53 and a half, I finally had one. Lol.
Now that we've had rain every day, everything is probably greener than it has ever been. The only thing bad so far this summer is when it's sunny, it's cool, and when it's warm, it's raining. So we haven't had many trips to the pool or beach, or suntanning days. It's been like a long spring.
My son Tyler got home mid-May and started lifeguarding, yet quit that job 3.5 weeks later since he was mostly holding a sign saying it was closed due to chilly weather and rain. Now he is working at Banner Camp, a day camp for kids aged 4-15, and he's having a blast doing different sports, teaching swimming lessons, singing camp songs, etc. He comes home every day with a smile on his face, happy but tired, then works out, cleans up, and goes out with his girlfriend. It's good to see him so happy. He finished his sophomore year with a 3.0 overall GPA. He starts his real classes in marketing this coming fall. He turned 20 on July 5 and he's going to the Country Thunder concert in Wisconsin as our birthday gift to him. His roommate is flying in for it, too. They'll all sleep out in tents but he'll shower at my friend Leslie's house.
Alyssa didn't get out of school until mid-June. She's having a great summer as well. She went to an overnight camp for a week, has seen several movies, has had several sleepovers, and a few trips to the beach and pool. She's very happy and enjoying herself. She decided this year she wants money to buy things, so she's now doing chores for pay and she does them with a smile. It's amazing what a few dollars will do. I should have offered her money years ago.
Steve is just working and still enjoying his job. He just spent the weekend in Michigan to see his parents and brother. Early last month, he went to Las Vegas with his brother and dad. We still live here in Libertyville, so as you can guess, he didn't win big. Lol.
Chelsea just turned eight. We can't believe she's getting a little gray, just like her mother. Poor thing.
My sister Robin from Pennsylvania will be coming on July 21 through August 4 to visit, though unfortunately she's not bringing her little kids/chicklettes with her. This will be a great time for us to have some good quality time together. Hopefully I'll have some energy to do so. It is so sweet of her to offer to take so much time out of her life for me.
My brother Jeff recently had brain radiation. The biggest complication you can have is with swelling either initially or about a year later, and so far he's three weeks out but suffering from worse headaches, so say your prayers that he won't have to go in for open surgery and that the headaches will improve and go away. I was hoping his family would come in this summer for a visit but they're not sure yet.
I saw my extended family on Father's day at my cousin Curt's house and had a great visit. I wish they were able to spend time with me more often, even just one day a month. I really wish things were the way they used to be when I could drive. Now that it's so hard for me to get places, I don't go to all the functions and see people as much as I would like (like my cousin's wedding or my 35th high school reunion), and can't go out when I have a craving for something. It drives me nuts that I can't just get up and go.
Hopefully by my next post I will be full of much-desired energy. I almost forgot what that is. Hopefully this dialysis process, even though I need to do it until I find a transplant, will go by fast. Who knows, maybe someone will want to donate before my next post and my life will be even more changed for the better. Please keep in touch with me because I'm going to be doing a lot of sitting, and I'd love to hear from you as I'll be living vicariously through you. Or, if you ever want to hang with me for a few hours at the clinic during a dialysis session, that would be greatly appreciated as well. Everyone have a great rest of your summer and enjoy the last few weeks with your kids before they are off to school again!
Wednesday, April 8, 2015
Audiology breakthrough changed my life!
After what feels like six months of winter, I think spring has finally sprung. The days are definitely longer, brighter, and warmer. Now all we need is some green grass and colorful flowers.
As for my health, there are just a few updates. Most importantly, I hope to FINALLY get on the kidney transplant list on Monday. I have been jumping through hoops for about six months now seeing doctors, dentists, a psychiatrist, surgeon, attending meetings, etc. Prior to getting a transplant, one needs to be cleared by every entity, and as most of my body parts have been affected by VHL, I had to be cleared by every physician and have every area managed properly. I even had to have a crown and a filling fixed. It's all so petty and frustrating. But, I have made it through everything, even the psychiatrist (LOL), with flying colors and I'm hoping to begin my 5-6 year wait as a transplant candidate ASAP.
My kidney function has been the same, 15-17% of use including both kidneys, and I can avoid going on dialysis so long as it remains above 15%. I hope I can stay above that mark as long as possible as dialysis sounds like no picnic at all. The only type of dialysis that the medical team approved for me is hemodialysis with a port in my chest. I can't use a port in my arm or leg due to my history of blood clots, and they feel my veins are too small to even create a grafted access. The reason it's important to wait is because the risk of infection is very great with the catheter so close to the heart. In addition, it will require me to go to a clinic three times a week for 4-6 hours to rid myself of the toxins. Due to my lack of vision, I am unable to do home dialysis.
An accidental development has me hearing like a teenager again. Suzanne suspected I was experiencing hearing loss in my good ear, so we asked my doctor about that and whether it might be causing my balance issues. Suzanne was right on both counts. My doctor sent me to an ENT doctor and the audiologist found mild hearing loss in my right ear and verified the deaf left ear. A new device came out since I last saw an audiologist and I got it on Good Friday. It's called the CROS, a hearing aid for single-sided deafness, and my model just came out this week. I am now wearing a receiver on my deaf ear and a hearing aid on my hearing ear, with a very small tube laying within my ear canal. Both units are very lightweight and they use watch-like batteries as a power source. Basically, the sounds from my left side come in and get so filtered from my left ear to my right that it makes my brain know that the sounds are coming from my left, even though I hear them on my right. It also distinguishes my normal sound coming from my right side. Though it sounds too good to be true, it works just like they said it would. I'd not heard from my left ear in about 35 years and now I feel like I'm hearing from it again. It is so incredible - I didn't realize how much I had been missing. Now I need to overcome my bad habit of turning my head aside when people talk to me, as I no longer need to point my good ear toward the sound. Once that changes, I'll appear to have better eye contact.
We are setting the CROS at half power strength initially as I have not heard in my left ear for so long, and she is afraid I'll be overwhelmed with the amount of sound, especially without having vision at the same time. In a few weeks they'll increase the sound to normal range. I can wear these devices around the clock except to sleep, shower, and swim. The crazy part is the battery usage. Even though you turn the CROS off when not in use, the batteries still need to be changed every week. I can't fathom how much that will cost. I think I'm going to buy some stock in a battery company.
In addition, I ordered a Bluetooth accessory pack, which is so cool. It allows me the ability to watch TV and turn the volume up in my hearing aid, while letting everyone else watch at a normal volume or even mute it. I will adjust the volume by a control that only I use. In addition, I can use this Bluetooth option rather than earbuds for my iPad, iPhone, ebooks or any WiFi devices, and all the sound will go right into my ear once they are synced. The doctor tried to sell me an older CROS package for $1,000 but I got a newer set for half the price.
My skin is pretty much unchanged but the issues are getting a little better. Hopefully now that spring is coming and it's not as cold out, my skin won't be as dry. GI-wise, I lost another five or so pounds but I think it's kind of leveled off. I'm trying to eat smaller snacks and graze throughout the day because my stomach fills too fast.
Sadly, I'm still very fatigued. That's probably one of the biggest problems that bothers me. I can't stand that I require so much sleep and that I have no energy. It's so not like me. I still look forward to fun plans out with friends, but otherwise I've become more of a homebody than I ever thought would be possible. It's hard for me to get started now, but once I'm out and moving, I get better.
I saved the best health update for last. I really had been thinking about stopping my eye treatments once I start dialysis, as it really hasn't been helping me much lately and it hurts to get the treatments. But, this past week, in the late evening I once again got my vision back so good that I was able to read print on my phone, see myself in the mirror, see my clothes, the slats on the window blinds, little buttons, all the bottles on my bathroom counter, my arms, nail polish, hand, fine details on a leaf - it was so remarkable! If I can see that much, even though it's only now and again, then my eye must still be capable of sight. I'll see my doctor in the next week or two and have him take photos and see if he sees any change. Even today I can see my hand and my nail polish again. I also noticed I'm getting more light into my eye. It's not as dark as it used to be. It's brighter and the shadows have been better. I don't know if something is going on internally and why, or what I am doing differently, if anything. All I know is the pressure on the tumors has lessened enough to let some vision go through. So, at this Easter season, please continue to say your prayers that there can still be a miracle ahead for me and that one day I may get more than just an hour or two of vision here and there, and may be able to actually have usable vision and see my children's faces again.
As for some excitement, I took a trip with Sheila and Barry in February to Hollywood, FL (next to Ft. Lauderdale) for four days of fun in the sun, although one day we had torrential rain and could have swum in the streets. We stayed at the beautiful oceanfront Diplomat Resort & Spa. Our room was nearly as large as the first floor of my house but without a kitchen. We had breakfast buffets every morning and the pools, hot tub, beach, and a choice of five restaurants. In addition, we found an incredible four-story Italian restaurant down the block called Sardelli's and ate the best Italian food I've had in my life. They said they're going to open one in Glenview. It was so good to visit and spend some quality time together. Sheila and I even took a trip to the mall during the rain storm to see 50 Shades of Gray. And what a mall it was - it had six anchor stores and a caviar kiosk, and we almost got stuck there because taxis were so much in demand after the rain.
We just finished spring break. First Tyler had a week off and last week Alyssa was off. As a family, we all went to the Kalahari in Wisconsin Dells for a one-night water park adventure. Everyone had a ball. Believe it or not, I rode the water rides without the vision. It was a little different but quite fun. They even had a roller coaster water slide that was probably my favorite ride, and I don't think you even need vision for that one - there is so much water splashing in the eyes anyway. They have a separate pool for surfing and both kids tried that but neither one got up, unfortunately. Another water ride you stand on, a door in the floor opens, and you fall straight down and eventually brake with your feet. Another has a floor drop into a tube that twists around in the dark, almost upside down, and again you brake with your feet. They also have a live white tiger cub and you can take pictures with him, and there's a movie theater, bowling alley, and five restaurants.
Because I love candy, my kids will always have Easter baskets. For Easter, our kids decorated eggs and then hopped around in search of their baskets on Sunday - even Tyler at age 19 and his college roommate Phillip. It was more like a scavenger hunt because they each gave each other clues to follow. Phillip's mom sent us Maggiano's gift certificates, which we used on Good Friday for dinner, and flowers that are so beautiful. We also had a nice Easter family dinner together.
I have a new hired helper, Liz, who I probably mentioned previously but now she's more regular. She comes every Wednesday for about 5-6 hours depending on my needs. She's been super helpful to me as she is teaching me some typing skills, helping me with computers, organization, odds and ends around the house, and will take me to local doctor appointments and errands. She is a Social Work major and she guarantees she'll stay with me for two years while she completes her degree. She just so happens to be my cleaning lady Maria's daughter.
As usual, hats off to Suzanne because I wouldn't have gotten anywhere without her. As you can see, I've had to go many places in the past few months as I jumped through the hoops for my transplant and my medical needs in general. Lately, Suzanne has been driving me to most of these appointments on her own. We keep thinking it'll slow down but it doesn't. Also, thanks to Delynn for driving Alyssa, and to Angela, who is my nail and movie partner.
Thanks also to all of those who came out or took me out these past few months, which includes DiTy, Patti, Nancy, Missy, Mindy, Lori Pritchett, Carrie, and my blind friends Vanessa, Juan, Christa, and my newest blind friend Judy. I apologize if I'm missing anyone. Every visit is so appreciated.
I hope next time to have news of getting on the transplant list, or better yet, an actual transplant (ha ha). Wish me luck!
As for my health, there are just a few updates. Most importantly, I hope to FINALLY get on the kidney transplant list on Monday. I have been jumping through hoops for about six months now seeing doctors, dentists, a psychiatrist, surgeon, attending meetings, etc. Prior to getting a transplant, one needs to be cleared by every entity, and as most of my body parts have been affected by VHL, I had to be cleared by every physician and have every area managed properly. I even had to have a crown and a filling fixed. It's all so petty and frustrating. But, I have made it through everything, even the psychiatrist (LOL), with flying colors and I'm hoping to begin my 5-6 year wait as a transplant candidate ASAP.
My kidney function has been the same, 15-17% of use including both kidneys, and I can avoid going on dialysis so long as it remains above 15%. I hope I can stay above that mark as long as possible as dialysis sounds like no picnic at all. The only type of dialysis that the medical team approved for me is hemodialysis with a port in my chest. I can't use a port in my arm or leg due to my history of blood clots, and they feel my veins are too small to even create a grafted access. The reason it's important to wait is because the risk of infection is very great with the catheter so close to the heart. In addition, it will require me to go to a clinic three times a week for 4-6 hours to rid myself of the toxins. Due to my lack of vision, I am unable to do home dialysis.
An accidental development has me hearing like a teenager again. Suzanne suspected I was experiencing hearing loss in my good ear, so we asked my doctor about that and whether it might be causing my balance issues. Suzanne was right on both counts. My doctor sent me to an ENT doctor and the audiologist found mild hearing loss in my right ear and verified the deaf left ear. A new device came out since I last saw an audiologist and I got it on Good Friday. It's called the CROS, a hearing aid for single-sided deafness, and my model just came out this week. I am now wearing a receiver on my deaf ear and a hearing aid on my hearing ear, with a very small tube laying within my ear canal. Both units are very lightweight and they use watch-like batteries as a power source. Basically, the sounds from my left side come in and get so filtered from my left ear to my right that it makes my brain know that the sounds are coming from my left, even though I hear them on my right. It also distinguishes my normal sound coming from my right side. Though it sounds too good to be true, it works just like they said it would. I'd not heard from my left ear in about 35 years and now I feel like I'm hearing from it again. It is so incredible - I didn't realize how much I had been missing. Now I need to overcome my bad habit of turning my head aside when people talk to me, as I no longer need to point my good ear toward the sound. Once that changes, I'll appear to have better eye contact.
We are setting the CROS at half power strength initially as I have not heard in my left ear for so long, and she is afraid I'll be overwhelmed with the amount of sound, especially without having vision at the same time. In a few weeks they'll increase the sound to normal range. I can wear these devices around the clock except to sleep, shower, and swim. The crazy part is the battery usage. Even though you turn the CROS off when not in use, the batteries still need to be changed every week. I can't fathom how much that will cost. I think I'm going to buy some stock in a battery company.
In addition, I ordered a Bluetooth accessory pack, which is so cool. It allows me the ability to watch TV and turn the volume up in my hearing aid, while letting everyone else watch at a normal volume or even mute it. I will adjust the volume by a control that only I use. In addition, I can use this Bluetooth option rather than earbuds for my iPad, iPhone, ebooks or any WiFi devices, and all the sound will go right into my ear once they are synced. The doctor tried to sell me an older CROS package for $1,000 but I got a newer set for half the price.
My skin is pretty much unchanged but the issues are getting a little better. Hopefully now that spring is coming and it's not as cold out, my skin won't be as dry. GI-wise, I lost another five or so pounds but I think it's kind of leveled off. I'm trying to eat smaller snacks and graze throughout the day because my stomach fills too fast.
Sadly, I'm still very fatigued. That's probably one of the biggest problems that bothers me. I can't stand that I require so much sleep and that I have no energy. It's so not like me. I still look forward to fun plans out with friends, but otherwise I've become more of a homebody than I ever thought would be possible. It's hard for me to get started now, but once I'm out and moving, I get better.
I saved the best health update for last. I really had been thinking about stopping my eye treatments once I start dialysis, as it really hasn't been helping me much lately and it hurts to get the treatments. But, this past week, in the late evening I once again got my vision back so good that I was able to read print on my phone, see myself in the mirror, see my clothes, the slats on the window blinds, little buttons, all the bottles on my bathroom counter, my arms, nail polish, hand, fine details on a leaf - it was so remarkable! If I can see that much, even though it's only now and again, then my eye must still be capable of sight. I'll see my doctor in the next week or two and have him take photos and see if he sees any change. Even today I can see my hand and my nail polish again. I also noticed I'm getting more light into my eye. It's not as dark as it used to be. It's brighter and the shadows have been better. I don't know if something is going on internally and why, or what I am doing differently, if anything. All I know is the pressure on the tumors has lessened enough to let some vision go through. So, at this Easter season, please continue to say your prayers that there can still be a miracle ahead for me and that one day I may get more than just an hour or two of vision here and there, and may be able to actually have usable vision and see my children's faces again.
As for some excitement, I took a trip with Sheila and Barry in February to Hollywood, FL (next to Ft. Lauderdale) for four days of fun in the sun, although one day we had torrential rain and could have swum in the streets. We stayed at the beautiful oceanfront Diplomat Resort & Spa. Our room was nearly as large as the first floor of my house but without a kitchen. We had breakfast buffets every morning and the pools, hot tub, beach, and a choice of five restaurants. In addition, we found an incredible four-story Italian restaurant down the block called Sardelli's and ate the best Italian food I've had in my life. They said they're going to open one in Glenview. It was so good to visit and spend some quality time together. Sheila and I even took a trip to the mall during the rain storm to see 50 Shades of Gray. And what a mall it was - it had six anchor stores and a caviar kiosk, and we almost got stuck there because taxis were so much in demand after the rain.
We just finished spring break. First Tyler had a week off and last week Alyssa was off. As a family, we all went to the Kalahari in Wisconsin Dells for a one-night water park adventure. Everyone had a ball. Believe it or not, I rode the water rides without the vision. It was a little different but quite fun. They even had a roller coaster water slide that was probably my favorite ride, and I don't think you even need vision for that one - there is so much water splashing in the eyes anyway. They have a separate pool for surfing and both kids tried that but neither one got up, unfortunately. Another water ride you stand on, a door in the floor opens, and you fall straight down and eventually brake with your feet. Another has a floor drop into a tube that twists around in the dark, almost upside down, and again you brake with your feet. They also have a live white tiger cub and you can take pictures with him, and there's a movie theater, bowling alley, and five restaurants.
Because I love candy, my kids will always have Easter baskets. For Easter, our kids decorated eggs and then hopped around in search of their baskets on Sunday - even Tyler at age 19 and his college roommate Phillip. It was more like a scavenger hunt because they each gave each other clues to follow. Phillip's mom sent us Maggiano's gift certificates, which we used on Good Friday for dinner, and flowers that are so beautiful. We also had a nice Easter family dinner together.
I have a new hired helper, Liz, who I probably mentioned previously but now she's more regular. She comes every Wednesday for about 5-6 hours depending on my needs. She's been super helpful to me as she is teaching me some typing skills, helping me with computers, organization, odds and ends around the house, and will take me to local doctor appointments and errands. She is a Social Work major and she guarantees she'll stay with me for two years while she completes her degree. She just so happens to be my cleaning lady Maria's daughter.
As usual, hats off to Suzanne because I wouldn't have gotten anywhere without her. As you can see, I've had to go many places in the past few months as I jumped through the hoops for my transplant and my medical needs in general. Lately, Suzanne has been driving me to most of these appointments on her own. We keep thinking it'll slow down but it doesn't. Also, thanks to Delynn for driving Alyssa, and to Angela, who is my nail and movie partner.
Thanks also to all of those who came out or took me out these past few months, which includes DiTy, Patti, Nancy, Missy, Mindy, Lori Pritchett, Carrie, and my blind friends Vanessa, Juan, Christa, and my newest blind friend Judy. I apologize if I'm missing anyone. Every visit is so appreciated.
I hope next time to have news of getting on the transplant list, or better yet, an actual transplant (ha ha). Wish me luck!
Monday, December 22, 2014
Merry Kidney & Happy New Year!
Whoops, did I say kidney? That shows how much it's on my mind. We just passed Dec. 21st, the first day of winter and the shortest and darkest day of the year, but that means the days ahead are going to be getting longer and brighter. So, welcome winter, and Merry Christmas and Happy New Year to all, as this will not only be my blog but my Christmas card as well.
Mayo Clinic has come and gone and it appears that we have found that I have all the signs of NSF, including a significant level of gadolinium contrast remaining in my tissues. I have not had an MRI with contrast in over 2.5 years so this is really stuck in my tissues, and there's absolutely no reason that it should have happened. Everyone at U of C is treating me as if I have NSF, although they may do one more biopsy just to prove it.
Upon returning from Mayo Clinic, I developed a rather unusual rash. It's my chief complaint and it has traveled everywhere, starting on my chest, and it's still on my arms, my face, and the top of my feet. It is horribly painful and blistering, and possibly viral (but not contagious), yet none of the four doctors I've seen have come up with a diagnosis, which is rather frustrating. In addition to the rash came 16 lbs of weight loss, more fatigue, decreased appetite, joint pain, etc. I am just one miserable soul. I sleep between 11-13 hours per night and can't get myself up until the afternoon. Between that and my face breaking out with the rash, I feel like a teenager again.
Thankfully, I do get remarkable vision every now and then, between the shades of gray. At a party last weekend I saw people's glasses and their sweaters. If I looked at someone directly, I couldn't see their faces, but I could tell who was who. Last night I watched a movie on my iPad because the shadows were so good that I could see people moving on the screen. I didn't want to go to bed while the vision was good; I might as well take advantage of those moments. I still get the eye injections every 4-6 weeks despite no change to that area (no better, no worse).
The majority of my life lately has been focusing on doctors about my combination of issues. The GI doctor feels that due to my severe pancreatic issues, I absorb nothing when I eat, so he put me on an enzyme to help with absorption. Since then, I've been feeling a little more energy. The kidney doctor says my kidney is the problem, and the skin issues, itching, fatigue, achy joints, lack of focus, and lack of appetite are all very much related. He says once I start dialysis, after about a month I'll feel better. In the meantime, he also found that an acid base level in my blood is completely off target, so he put me on a medication that may relieve my symptoms and buy me a couple months while I look for a transplant donor. My internist wants to get at the primary problem of how to fix the joint pain. She recommends getting steroid injections in my hand and wrist joints to relieve the pain and stiffness. There's also an area in my neck where she recommends I get the injection, but I don't feel comfortable doing that one. I also went off Ritalin because that can sometimes react with other drugs and cause skin rashes and weird sensations.
I met with everyone in terms of the transplant and I'm waiting to decide when and where to do dialysis. Is it going to be done as a nightly routine in my home (peritoneal dialysis via the abdomen), or should I get hemodialysis, which is three days per week for four hours at a clinic? The main difference is that your eating and drinking is more compromised with hemodialysis because all fluids are retained until you go back to the clinic. With peritoneal, it's flushed nightly, but I need to be home every night by 10pm. The best option sounds like the kidney transplant, but it's not easy finding a donor. The doctors will tell me at the next meeting everything about what my body can accept in terms of an organ.
Regarding my balance issues, one of the two tumors in my cerebellum might have gotten larger, but my doctor said we shouldn't operate on it because it may not resolve the problem. He thinks it might be an ear problem and suggests I visit an ENT.
For the holidays, the kids got out of school on the 19th and we started off with a birthday celebration for me at my neighbor Suzanne's house. Per our usual birthday routine, the girls will celebrate my birthday again over dinner on Dec. 29. As for the family, we plan to go to the usual Christmas Eve and Christmas Day parties with my cousins and aunts (about 30 people). I truly wish my brother and sister lived closer so we could get together for the holidays. During the break, Tyler will have his girlfriend Candice out for a week to show her the sights of Chicagoland, tour the lights downtown, ski, etc. He will also be getting his workup done over this Christmas break. Alyssa is just enjoying the spirit of the season and already hanging with her friends and seeing movies. I've seen her about an hour since school's gotten out; she's a little social butterfly. I took her to see Annie (the musical) downtown as a surprise for her birthday and she loved it, so I feel like I'm back on the "good mom" list again. We also did some baking and wrapping together.
I do have to say, our house is rather festive looking. The tree is up and lit this year and we get many compliments on it. There's even a train underneath with real smoke, and all of the extra decorations around the house are up and out of their boxes, which hasn't happened in years. My friends keep asking if we're planning a party, because it looks like it, but we're not. My elves and I have been busy, too - all of my gifts are already bought and wrapped and under the tree.
So sorry I'm unable to do Christmas cards this year. I think I'll go on the every other year plan. I do love receiving cards so please keep sending me yours. I will add a picture to this blog site as soon as I can get my children to stop moving for one minute to take their photo by the tree or something.
Suzanne again wins the Doctor Driver Award for the month. She peaked two weeks ago with 21 hours in a week. This week it was 16 hours, and that's more of an average week. I'm really lucky for the help I have from all my friends and Steve. I want to thank Darlene, Mindy, Barb, Angela, and Steve for all your help driving to doctor appointments. To Delynn, a special thank you for driving Alyssa to her needed destinations - tap, school, art club, etc. You truly are a great friend. I'm also so happy to have seen Sheila and rejoined with Cathy from high school over Thanksgiving. I really miss my college friends and I'd love to see you soon as well. Time flies so quickly, and as we all know, unless you put a date on the calendar, the opportunities will fly by.
The perfect time to get together will be between Christmas and New Years, while Steve, Tyler, and Alyssa are in Michigan at my in-laws without me. Like the movie, I'll be "home alone" for four days. Fortunately, my "I've fallen and I can't get up" machine arrived this week, plus I'll have my dog Chelsea to keep me company, but I'd love some visits with friends if you are free.
Thanks as always for all of your thoughts, prayers, and help. Whether it's the smallest of favors, a phone call or a ride across town, somehow everyone pulls through for me. I don't know what I'd do without my friends. I can't express how lucky I am to have all of you angels in my life. Santa is surely watching and hopefully you'll get everything you want for Christmas.
Hoping that you all had a wonderful Thanksgiving and that you are having a safe, merry and healthy Christmas, and your 2015 will be happy and prosperous.
Mayo Clinic has come and gone and it appears that we have found that I have all the signs of NSF, including a significant level of gadolinium contrast remaining in my tissues. I have not had an MRI with contrast in over 2.5 years so this is really stuck in my tissues, and there's absolutely no reason that it should have happened. Everyone at U of C is treating me as if I have NSF, although they may do one more biopsy just to prove it.
Upon returning from Mayo Clinic, I developed a rather unusual rash. It's my chief complaint and it has traveled everywhere, starting on my chest, and it's still on my arms, my face, and the top of my feet. It is horribly painful and blistering, and possibly viral (but not contagious), yet none of the four doctors I've seen have come up with a diagnosis, which is rather frustrating. In addition to the rash came 16 lbs of weight loss, more fatigue, decreased appetite, joint pain, etc. I am just one miserable soul. I sleep between 11-13 hours per night and can't get myself up until the afternoon. Between that and my face breaking out with the rash, I feel like a teenager again.
Thankfully, I do get remarkable vision every now and then, between the shades of gray. At a party last weekend I saw people's glasses and their sweaters. If I looked at someone directly, I couldn't see their faces, but I could tell who was who. Last night I watched a movie on my iPad because the shadows were so good that I could see people moving on the screen. I didn't want to go to bed while the vision was good; I might as well take advantage of those moments. I still get the eye injections every 4-6 weeks despite no change to that area (no better, no worse).
The majority of my life lately has been focusing on doctors about my combination of issues. The GI doctor feels that due to my severe pancreatic issues, I absorb nothing when I eat, so he put me on an enzyme to help with absorption. Since then, I've been feeling a little more energy. The kidney doctor says my kidney is the problem, and the skin issues, itching, fatigue, achy joints, lack of focus, and lack of appetite are all very much related. He says once I start dialysis, after about a month I'll feel better. In the meantime, he also found that an acid base level in my blood is completely off target, so he put me on a medication that may relieve my symptoms and buy me a couple months while I look for a transplant donor. My internist wants to get at the primary problem of how to fix the joint pain. She recommends getting steroid injections in my hand and wrist joints to relieve the pain and stiffness. There's also an area in my neck where she recommends I get the injection, but I don't feel comfortable doing that one. I also went off Ritalin because that can sometimes react with other drugs and cause skin rashes and weird sensations.
I met with everyone in terms of the transplant and I'm waiting to decide when and where to do dialysis. Is it going to be done as a nightly routine in my home (peritoneal dialysis via the abdomen), or should I get hemodialysis, which is three days per week for four hours at a clinic? The main difference is that your eating and drinking is more compromised with hemodialysis because all fluids are retained until you go back to the clinic. With peritoneal, it's flushed nightly, but I need to be home every night by 10pm. The best option sounds like the kidney transplant, but it's not easy finding a donor. The doctors will tell me at the next meeting everything about what my body can accept in terms of an organ.
Regarding my balance issues, one of the two tumors in my cerebellum might have gotten larger, but my doctor said we shouldn't operate on it because it may not resolve the problem. He thinks it might be an ear problem and suggests I visit an ENT.
For the holidays, the kids got out of school on the 19th and we started off with a birthday celebration for me at my neighbor Suzanne's house. Per our usual birthday routine, the girls will celebrate my birthday again over dinner on Dec. 29. As for the family, we plan to go to the usual Christmas Eve and Christmas Day parties with my cousins and aunts (about 30 people). I truly wish my brother and sister lived closer so we could get together for the holidays. During the break, Tyler will have his girlfriend Candice out for a week to show her the sights of Chicagoland, tour the lights downtown, ski, etc. He will also be getting his workup done over this Christmas break. Alyssa is just enjoying the spirit of the season and already hanging with her friends and seeing movies. I've seen her about an hour since school's gotten out; she's a little social butterfly. I took her to see Annie (the musical) downtown as a surprise for her birthday and she loved it, so I feel like I'm back on the "good mom" list again. We also did some baking and wrapping together.
I do have to say, our house is rather festive looking. The tree is up and lit this year and we get many compliments on it. There's even a train underneath with real smoke, and all of the extra decorations around the house are up and out of their boxes, which hasn't happened in years. My friends keep asking if we're planning a party, because it looks like it, but we're not. My elves and I have been busy, too - all of my gifts are already bought and wrapped and under the tree.
So sorry I'm unable to do Christmas cards this year. I think I'll go on the every other year plan. I do love receiving cards so please keep sending me yours. I will add a picture to this blog site as soon as I can get my children to stop moving for one minute to take their photo by the tree or something.
Suzanne again wins the Doctor Driver Award for the month. She peaked two weeks ago with 21 hours in a week. This week it was 16 hours, and that's more of an average week. I'm really lucky for the help I have from all my friends and Steve. I want to thank Darlene, Mindy, Barb, Angela, and Steve for all your help driving to doctor appointments. To Delynn, a special thank you for driving Alyssa to her needed destinations - tap, school, art club, etc. You truly are a great friend. I'm also so happy to have seen Sheila and rejoined with Cathy from high school over Thanksgiving. I really miss my college friends and I'd love to see you soon as well. Time flies so quickly, and as we all know, unless you put a date on the calendar, the opportunities will fly by.
The perfect time to get together will be between Christmas and New Years, while Steve, Tyler, and Alyssa are in Michigan at my in-laws without me. Like the movie, I'll be "home alone" for four days. Fortunately, my "I've fallen and I can't get up" machine arrived this week, plus I'll have my dog Chelsea to keep me company, but I'd love some visits with friends if you are free.
Thanks as always for all of your thoughts, prayers, and help. Whether it's the smallest of favors, a phone call or a ride across town, somehow everyone pulls through for me. I don't know what I'd do without my friends. I can't express how lucky I am to have all of you angels in my life. Santa is surely watching and hopefully you'll get everything you want for Christmas.
Hoping that you all had a wonderful Thanksgiving and that you are having a safe, merry and healthy Christmas, and your 2015 will be happy and prosperous.
Thursday, October 9, 2014
Looking forward (with clearer eyes) to an answer at Mayo
A lot of things have developed recently, some for the good and some for the bad. My eye has had the most remarkable change, so why don't we start with the good.
Since my last blog, I started having better days with longer stretches of vision. At the end of August, I was at a pool across the street with Alyssa and the most remarkable thing happened; all of a sudden I regained my eyesight! I was in shock. It was not perfect but it was a huge improvement for me. I had not seen Alyssa's face in nearly two years and all of a sudden, there it was, looking right at me. I was speechless and so excited and I started eyeing everything so closely. I'd not seen anything like this in so long so I had to call the doctor. Like any sighted person, I grabbed my bag and towel, opened the gate, and walked toward home. Alyssa thought she had to hold on to me but I could really do it. Sure enough, I was able to make it all the way home and called the doctor, and they were as amazed and excited as I was.
I went in the following week and had photos and another treatment done. They were very impressed with what they were seeing. The fluid levels behind my eye had dramatically dissipated, and the vascularity of the tumors and vascular branches to the optic nerve had actually lessened and appear to have gotten smaller. The tumor growth has stabilized and I may not require much more treatment. We'll watch it and if it starts up again, we'll do intermittent treatments.
Unfortunately, I've had a few complications with some intermittent vision changes that are common to people who have had no vision for several years. It is a condition that does not come from your eyes; it is triggered from your brain due to the lack of sight. The brain feels it needs to send signals, so it sends random colors and images. They say these will come and go. It probably occurred to me due to my recent dramatic change in vision. I say my prayers every day that they will go away fast.
Regarding my help from the State, I continue to get assistance. At this time, I decided not to go in as an inpatient for training, which is weeks long and not specific to my needs, so I'm doing more training at home instead. My biggest problem is using the cane, so I need to find out how I can get more training on that here or if my costs will be reimbursed if I hired someone.
I am presently taking my third online course through Hadley School for the Blind, and at age 52, I'm finally learning keyboarding. It's actually kind of fun. I also got a really cool device from the State, which is a UPC code reader that scans all the items in my home that have a UPC label and will tell me what is in the box, can, etc., so I can finally "see" what kind of soup or crackers or frozen food I'm eating, as well as the calories, preparation, recipe ideas, etc. It reads to me everything I wanted to know and then some. Eventually it'll read prescription bottles, which is a great idea because every bottle feels the same.
My kidney continues to be my leading problem. As a matter of fact, I was placed on the kidney transplant list yesterday for the state of IL, where the waiting time for a donor is 4-6 years. I'm considering registering as well for the state of WI, because at the first of many patient educational meetings yesterday, we were told we may do better if we also apply in bordering states.
To avoid waiting, they recommend having someone be a live donor (a good match for me and willing to donate). They also recommend having a "swap" donor (someone who is very highly interested in donating, even if it's not for me), which allows two donors and two recipients to swap kidneys for a better match. Timing is key. If a fresh organ is donated to me and it's out of the body for 20 minutes or less, the rate of viability for that organ is 15-20 years. If it's out for longer but still warm, it's 10-15 years. For standard donations it's generally 5-10 or 5-15 years. For non-standard donations (drunk drivers, etc.), it's under 5 years. I have the option of declining a less desirable kidney but then I'll have to wait another 4-6 years for my next chance. People aged 55 and up are most often given the non-standard kidneys because their odds of living longer are smaller.
If my kidney function drops below 15% (right now I'm between 15-19%), then I'll need to go on dialysis if a kidney donor has not been found. We've learned my veins are too small for dialysis, so I'll need a graft made in order to do it. I'll only qualify for hemodialysis, which is done in a dialysis center 3 days per week, 4-6 hours at a time. With dialysis, if my kidney function gets worse, toxins build up, causing more fatigue, which makes the odds of going through surgery even worse. I also have to worry about my kidney tumor growing over time. So, I'd much rather have a kidney transplant than dialysis. It's a lot easier said than done, though, unless someone jumps in to donate. The process is free for anyone interested in donation, and you can even be out of state. I have all the resources you need. Just ask.
In the interim, I plan to go the Mayo Clinic this Sunday to finally determine the cause of my long-lasting problems with my skin, two prior blood clots, worsening kidney condition, achiness of bones and joints, and the relationship to the MRI contrast dye. Is it NSF? If it is, getting a transplant would definitely improve many or all of these issues. If it's not NSF, is it something that can be treated?
Summer ended up being fun and all too short. My visit with my family and friends was of course wonderful yet too brief. Tyler is back at college again and loving every minute, and appears very happy, which makes me very happy. Alyssa is also very happy and enjoying 6th grade. She has straight As with one B. She's still playing soccer and she's in an art club, tap, and Girl Scouts. She's looking forward to Halloween and her birthday later this month, when she'll turn 12. Steve is going to the Mayo Clinic with me. He works and walks the dog and is still working out. Suzanne has spent some 12-hour days with me downtown at doctors over the last few weeks - just a crazy, ridiculous amount of time, and I so appreciate her help. She is going to give me cooking lessons one day per week. I have no trips planned at the moment but I wish I did.
Have a Happy Halloween and hopefully I'll have good news to report shortly.
Since my last blog, I started having better days with longer stretches of vision. At the end of August, I was at a pool across the street with Alyssa and the most remarkable thing happened; all of a sudden I regained my eyesight! I was in shock. It was not perfect but it was a huge improvement for me. I had not seen Alyssa's face in nearly two years and all of a sudden, there it was, looking right at me. I was speechless and so excited and I started eyeing everything so closely. I'd not seen anything like this in so long so I had to call the doctor. Like any sighted person, I grabbed my bag and towel, opened the gate, and walked toward home. Alyssa thought she had to hold on to me but I could really do it. Sure enough, I was able to make it all the way home and called the doctor, and they were as amazed and excited as I was.
I went in the following week and had photos and another treatment done. They were very impressed with what they were seeing. The fluid levels behind my eye had dramatically dissipated, and the vascularity of the tumors and vascular branches to the optic nerve had actually lessened and appear to have gotten smaller. The tumor growth has stabilized and I may not require much more treatment. We'll watch it and if it starts up again, we'll do intermittent treatments.
Unfortunately, I've had a few complications with some intermittent vision changes that are common to people who have had no vision for several years. It is a condition that does not come from your eyes; it is triggered from your brain due to the lack of sight. The brain feels it needs to send signals, so it sends random colors and images. They say these will come and go. It probably occurred to me due to my recent dramatic change in vision. I say my prayers every day that they will go away fast.
Regarding my help from the State, I continue to get assistance. At this time, I decided not to go in as an inpatient for training, which is weeks long and not specific to my needs, so I'm doing more training at home instead. My biggest problem is using the cane, so I need to find out how I can get more training on that here or if my costs will be reimbursed if I hired someone.
I am presently taking my third online course through Hadley School for the Blind, and at age 52, I'm finally learning keyboarding. It's actually kind of fun. I also got a really cool device from the State, which is a UPC code reader that scans all the items in my home that have a UPC label and will tell me what is in the box, can, etc., so I can finally "see" what kind of soup or crackers or frozen food I'm eating, as well as the calories, preparation, recipe ideas, etc. It reads to me everything I wanted to know and then some. Eventually it'll read prescription bottles, which is a great idea because every bottle feels the same.
My kidney continues to be my leading problem. As a matter of fact, I was placed on the kidney transplant list yesterday for the state of IL, where the waiting time for a donor is 4-6 years. I'm considering registering as well for the state of WI, because at the first of many patient educational meetings yesterday, we were told we may do better if we also apply in bordering states.
To avoid waiting, they recommend having someone be a live donor (a good match for me and willing to donate). They also recommend having a "swap" donor (someone who is very highly interested in donating, even if it's not for me), which allows two donors and two recipients to swap kidneys for a better match. Timing is key. If a fresh organ is donated to me and it's out of the body for 20 minutes or less, the rate of viability for that organ is 15-20 years. If it's out for longer but still warm, it's 10-15 years. For standard donations it's generally 5-10 or 5-15 years. For non-standard donations (drunk drivers, etc.), it's under 5 years. I have the option of declining a less desirable kidney but then I'll have to wait another 4-6 years for my next chance. People aged 55 and up are most often given the non-standard kidneys because their odds of living longer are smaller.
If my kidney function drops below 15% (right now I'm between 15-19%), then I'll need to go on dialysis if a kidney donor has not been found. We've learned my veins are too small for dialysis, so I'll need a graft made in order to do it. I'll only qualify for hemodialysis, which is done in a dialysis center 3 days per week, 4-6 hours at a time. With dialysis, if my kidney function gets worse, toxins build up, causing more fatigue, which makes the odds of going through surgery even worse. I also have to worry about my kidney tumor growing over time. So, I'd much rather have a kidney transplant than dialysis. It's a lot easier said than done, though, unless someone jumps in to donate. The process is free for anyone interested in donation, and you can even be out of state. I have all the resources you need. Just ask.
In the interim, I plan to go the Mayo Clinic this Sunday to finally determine the cause of my long-lasting problems with my skin, two prior blood clots, worsening kidney condition, achiness of bones and joints, and the relationship to the MRI contrast dye. Is it NSF? If it is, getting a transplant would definitely improve many or all of these issues. If it's not NSF, is it something that can be treated?
Summer ended up being fun and all too short. My visit with my family and friends was of course wonderful yet too brief. Tyler is back at college again and loving every minute, and appears very happy, which makes me very happy. Alyssa is also very happy and enjoying 6th grade. She has straight As with one B. She's still playing soccer and she's in an art club, tap, and Girl Scouts. She's looking forward to Halloween and her birthday later this month, when she'll turn 12. Steve is going to the Mayo Clinic with me. He works and walks the dog and is still working out. Suzanne has spent some 12-hour days with me downtown at doctors over the last few weeks - just a crazy, ridiculous amount of time, and I so appreciate her help. She is going to give me cooking lessons one day per week. I have no trips planned at the moment but I wish I did.
Have a Happy Halloween and hopefully I'll have good news to report shortly.
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