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!
