Compared to my Debbie Downer last blog, my life has much improved. These past three months have been so much easier for me and much more tolerable. My kidney is doing great and now I only get labs every other week. I used to go to the doctor every three weeks and now it's every other month. It just makes life overall easier to have fewer doctor visits. My hemoglobin has gone up to 10.2 and so now I am feeling much more energetic and less anemic. I don't just spend the day on the couch anymore. I do take a lot of anti-rejection pills yet I'm probably getting more used to them and don't have as many side effects. My worst ones are itching, insomnia, weird joint pain, hot flashes, and headaches. But what a difference from three months ago. I'm so much better.
I'll find out about the other kidney removal plan when I see the doctor in October. As you can tell, I'm in no rush.
In mid July I was referred to a glaucoma specialist for eye surgery as my eye pressure had still not come down. He performed laser surgery to the back of my eye to create a hole so that fluid would not build up in the eye chamber, which makes the pressure high. It was very painful, good God, but it worked and my pressure is now in the low 20s. Once it goes under 20 they'll look at taking me off some of my eye drops.
Two weeks ago I went my retinal specialist at U of I. Upon seeing my retina, he was shocked that all of my tumors had started to shrink, and the fluid that was causing my retina to be detached was being reabsorbed. He said this was all due to the radiation treatments I received in late January prior to the transplant, which are now starting to work. It took almost seven months to start to work and they say it could work for six years or more, but they just don't know how much vision I'll get back. Only time will tell but this is just the beginning. I'm hopeful that after all the injections and everything I've done to this stupid eye that I'll eventually have enough useful vision to get around. Already I am noticing the change.
In the past 10 days, when I look straight forward, there's an area down low and to the left that has bright light coming in. When I pick something up or view things out of the lower periphery, I can see it, like my toothbrush, phone by my ear, or the floor. The coolest part is if I hold my phone on a certain angle around chest level, I can put on Netflix and see body images and things moving in color. So I'm just hopeful that this will continue and maybe I will still be a miracle yet. We shall see.
I've not had any cane training since last November, which is just par for the course for getting help or education from the State. I did find out that there is a place in Michigan that's an in-house cane training facility where you stay for a week. They start from where you are with your cane training and see how much farther you can progress in a week. They require you to be able to walk a minimum of four miles per day during that week. Depending on how quickly you learn, you may pass cane training and qualify to get a service dog, which is another process. Part of that is you have to be videotaped showing that you can do everything with a cane, because if the dog gets sick or injured, you need to be able to cope without it. I'm going to enroll in this one-week program as soon as possible so I can finish it before the snow falls, because I'm not getting anywhere at home with cane training.
In addition, I'm trying to learn typing with a self-training program on a Mac computer, but the program only works on a laptop or desktop PC. I was just made aware that the state of Texas has a facility called Texas Computers for the Blind where I can get a used laptop for a nominal fee. The ones available now are not as good as the ones due in January, so I'm opting to wait. Beginning this January, they will be more updated computers and come completely loaded with 25 GB of blind software. Mine will have Windows 10, a bill pay service, and tons of different programs that will be made to use with descriptive narration, and I will be taught from a self-learning video or directions for each program. When I last looked, it comes with 140 movies with descriptive narration and 385 books with audio narration.
My final blind area of need is cooking. I will try to learn that at the Illinois Center for Rehabilitation and Education (ICRE) downtown. It's a 13-week in-house program, but if I do my computer training and cane training separately, I probably will not require all 13 weeks to complete the cooking and independent living skills. I could probably do it in three weeks.
Over the summer to pass my time I've probably read 40-45 books and watched four series on Netflix, in addition to listening to many educational blind podcasts. It's funny how different my life is from everyone else's.
Steve arranged to take the family and Lindsey, Tyler's girlfriend, for the day pontoon boating on Lake Geneva for Tyler's 21st birthday. For his actual birthday he went to Tampa to celebrate with friends.
The timing couldn't be better when a friend came in from California. Dee and I have been friends since high school. I was finally feeling good enough to get out and do something fun when she and her daughter came for the day and we went to Independence Grove for lunch. Hopefully I'll get out to California someday to see her and her family. Later that week I went out with DiTy and Patty for lunch. Three weeks later I went to dinner at Bahama Breeze with Lori Pritchett, DiTy, Patty, Nancy, and Jeryl from college. The book club also kept me busy.
I got to celebrate my half birthday with my neighbors, which is always so much fun. There's nothing like "Christmas in July." Since it's hard for me to hear in crowded restaurants, I picked to do it at someone's house. In addition, I got to plan the menu and picked my favorite foods, including my favorite banana cheesecake from the Cheesecake Factory. It is so incredible. After eating we enjoyed a bonfire and I got to open all my presents. It was perfect timing as I received everything right before a trip to Florida - a sundress, sweater, two summer shirts, and a gift card.
The transplant doctors had told me I could go away on vacation after six months if everything was stable and there were no blood clots. As there was so much improvement in my status, I got clearance and on my six month anniversary of the transplant, we left for a trip to Destin, Florida. As a group, there were 16 of us divided into two condos on the beachfront. Our unit had Tyler, Lindsey, Alyssa, myself, Sheila and Barry and their kids Devin and Austin, his girlfriend Carly, and Sheila's sister Sandy. The other unit contained neighborhood friends. It was loads of fun.
The weather started great. We spent our first days going to the beach every day, swimming in the pool, walking the beach, shopping the downtown area, and eating and drinking. The kids also went boogie boarding. What can be better than that? We tried to get a nice family beach photo taken for a possible Christmas card, which you may or may not see later. The last days it mostly rained but we did not let that stop us. The kids did a marathon Netflix day and played laser tag and Heads Up, and we shopped and went to Margaritaville. It got a little wild with Sheila and I trying to dance like the kids with their many little moves. We looked up a video of Jimmy Fallon and Michelle Obama to steal some of their dance moves. In addition, we learned the Dab. There's no chance of us showing up on Dancing with the Stars.
On the final day we were so excited to see the sunshine. We rented a pontoon boat and went to a place to anchor called Crab Island. It is an underwater sandbar on an inlet that is only accessible by boat. This was my kids' favorite place of all as there were many hermit crabs under your feet as you walked in waist-high water to water attractions (inflatable obstacle courses, slides, food vendors, a floating bar, etc.). It was really cool. The kids climbed atop one of the floating restaurants for lunch. It was funny to hear ice cream truck music coming from a boat vendor with big coolers of ice cream channeling through the sandbar area.
We saw the weather was worsening and turned toward the dock, but then dolphins started jumping and swimming right next to our pontoon boat. It was so awesome. The kids were all screaming "They're right there!" Tyler said he could touch a dolphin. When I heard a big splash I thought one of them jumped by my face, but it was Devin who jumped in wearing flippers and a mask to swim alongside the wild dolphin. It was the coolest thing and I can't believe he did that. I don't know how many people would do that without fear, but he had a big smile on his face. These were full size dolphins - I wouldn't do it, not a chance. But we were all excited and happy, and as we were dancing and playing music the sky opened up and it started pouring down rain. We all put towels over our heads for like 25 minutes as we raced back in to return our boat. We were so cold.
For those of you who have never been to Destin, it's in the Panhandle and it's the same time zone as Chicago. The water was so clear you could see down something like 12 ft. The sand is so white that it makes the water a really pretty aqua green. Every day if you looked out in the ocean past where you would be swimming, you'd see dolphins just jumping in the 87 degree water. We also saw jellyfish and found sand dollar pieces. As the storm was approaching, the waves were so big, maybe 4-6 ft. tall. A big thank you to Sheila and Barry for making this all possible.
Labor Day weekend I spent the afternoon with four of my sorority sisters at Arlington Park Race Track. Believe it or not, none of us really knew what we were doing and we bet on names and lucky numbers, but we all came out a winner. It was so fun to see everyone together. It seems like no time has passed even though we've been out of college for 31 years. I can't believe it's been that long.
Alyssa started school on August 19 and Tyler started Sept. 6. Tyler had his first club soccer game of the year on Sunday and we all went to watch him play. I'd never seen him play club soccer before in college and now he's in his fourth year. Next weekend Sheila and Barry will be in town and they'll bring Alyssa and I up to visit Tyler at school. My brother Jeff, Cindy, and the kids are coming for a wedding in a couple weeks and I'll be spending a few days with them. I look forward to it as I don't often get to see their family unless they fly in when I'm sick.
This summer went by so fast. Within the next month or so I'd love to have my donor Maureen and her family out for a barbecue or catered dinner now that I'm feeling better. I'm totally looking forward to spending time and getting to know her and meeting her family. Alyssa is also excited as Maureen has a daughter her age. I had planned to do something earlier this summer but didn't feel better until the end of July.
Again thank you to all who helped me out during my post-transplant days, to the many friends and neighbors who brought over dinners or just stopped over to say hello, to all of the calls from relatives and friends with concern, to Suzanne for always being there to listen to me whine and drive me everywhere in her new Tesla, and to Sheila and Barry for making this summer such a memorable one with the Florida trip and visits as they gave me something to look forward to as I recovered. Also a big thanks to my kids and Lindsey for making this summer bearable and especially for Tyler and Lindsey staying up with me when everyone else went to bed. Thanks also to Robin for being the best sister and getting me through the tough days and enjoying the good ones with me as well.
I hope everyone enjoyed their summer. It was a nice hot one. Let's hope we're in for a warm fall and a nice mild winter as well.
Tuesday, September 13, 2016
Friday, May 6, 2016
I'm one of the lucky ones, but I'm hoping for a second honeymoon (in more ways than one)!
Well, I finally got my date of kidney transplantation and it was done on Feb. 5! I was admitted Feb. 4 and had my final dialysis treatment there in the hospital. That is one thing in my life that I will not miss. As much as dialysis doesn't hurt, it was very time consuming and very draining on the days I had the treatments.
Prior to surgery, my hemoglobin had dropped to 6.8 and my doctors were very worried that I wouldn't be able to get the transplant or have my kidneys out. I did not donate any blood in advance, nor could I receive any blood to build up an antibody to the donor's kidney. But, when I awoke from surgery on Feb. 5, I was so excited to find that the transplant was done. They laparoscopically removed my right kidney, which had six large tumors and multiple cysts in it. They had to make a 10" incision to get it out because it was so large. Because my hemoglobin had dropped, the transplant surgeon decided to give me the donated blood from my donor before the transplant and to keep my left kidney in to be removed later this year. Although my left kidney has cancer, it is not nearly as bad as the right one was.
I must say, the doctor warned me this could probably be the worst, most painful surgery I ever had, but I found it to be one of the easiest surgeries I had to undergo. I was in ICU only one day and my kidney functioned so perfectly that they were saying my donor was like a sister. They thought my hospital stay would last 10-12 days but I was home after six days. Wow. Like I said, this was one of my easiest surgeries. I usually have so many complications. Three days after I went home, they took out the catheter and I finally got to take a shower. It was the first time in seven months, and boy did it feel good.
My sister Robin flew in for my surgery from Pennsylvania and my brother Jeff flew in from Colorado. Then Robin went home to care for her family while Jeff stayed with me for 10 days, and then Robin came back for a few weeks. So, I had constant help at home for the month and Steve was able to work. I felt very good at home, and in week three Robin and I went out and met my kidney donor, Maureen. She is the most giving, wonderful, selfless person. To think someone would actually take time off their full-time job and worry about helping other people, when she has four children of her own, is an amazing fact to me. She went back to work just two weeks after her surgery and said she was feeling incredibly well. We decided we were going to get together over the early summer period and have a barbecue and let our families meet. She even has a daughter Alyssa's age. Funny thing is, when I met her, she said we are like sisters. Robin said she dressed like me, had the same coat as me, ordered the same food as me - it was just so funny. Maureen is so personable that if I had met her on the street, we would have become friends.
Maureen's four children decided to name her kidney before it was taken out so I would have a name for my new organ, and they came up with Gladys. So Gladys is my new "cleaning lady" as kidneys are the filtration system for your blood, so now I have a young, 46-year-old cleaning lady in my body.
Incidentally, have you ever wondered what happens to organs when they are removed? My doctor mentioned that if we want to go visit my kidney, it's waiting for me in a jar in the lab and they said I can visit it as much as I want. Isn't that funny? When Suzanne and I have time after one of my appointments, we plan to go and do a photo shoot with my kidney. They say people visit their organs all the time. It'll be there for 10 years.
After the first month, my honeymoon ended. Six weeks after my surgery, I was admitted for another six days due to the fact that I had a virus, dehydration, and a blood clot in my left leg. I was feeling rather ill as I had suffered from all the side effects of the anti-rejection medications, including severe diarrhea day and night. I noticed I wasn't feeling as well the second month from surgery and the doctor said it was because my high steroid levels for surgery were being lowered back down to my normal dose. I lost my appetite and energy, and felt in a way similar to how I did on dialysis. They said it'll take time to feel better because the first month is the honeymoon phase and it'll take at least six months to a year until I feel like I'm getting used to the anti-rejection medications.
Two weeks later I was readmitted again to the hospital with a temperature of 102.5 and a white count of 29,000. This is extremely high when you're on anti-rejection medication because it masks how bad you really are. I felt like I had been hit by a truck, like the worst flu ever, and I had horrible chills. I shook for two days. The infection was found to be in my right transplanted kidney, which required five days in the hospital and IV antibiotics followed by oral antibiotics when I got home.
I'm not really finding this transplant to be as easy as I thought it would be, and I certainly hope that the way I feel takes a turn for the better. At my last trip to the doctor, they told me I have every side effect associated with one of my anti-rejection drugs, Prograf, and the only way to decrease them is to switch my other anti-rejection drug. Unfortunately, the combination of the two causes renal toxicity, so I really need to keep my level lower so I don't reject the kidney, and hopefully that'll have me feeling better.
Over the past three months I've lost 9-10 lbs (I think I weigh what I weighed in 7th grade, ha ha). Yet, it's not good because I feel very sick every day and have no appetite, horrible insomnia, severe itching, shakiness, the diarrhea is back, and I find myself just sitting on the couch all day long due to extreme fatigue. Another big side effect of the medication is horrible headaches. I've had a migraine or severe headache every day for about a month or six weeks. It doesn't go away and I wake up at night with it. Plus I take about 35 pills daily. It's no wonder I have no appetite and don't feel good.
Another side effect that I'm very unhappy about is hair thinning, and now I have a well-hidden but large bald spot. If anyone knows any good treatments for thinning hair, please let me know.
Thankfully, I have not had to go three times per week downtown to the doctor as originally planned. The first week after surgery I went once, then it was every other week, and now once a month. I also get weekly blood draws locally. They're going to watch my other kidney closely. They want to take it out laparoscopically before the end of the year.
Just prior to the transplant, I underwent the eight treatments of radiation on my eye and was told not to expect any changes for at least three months, so I'm hoping to see a change this month. Sometimes I think I'm seeing some shadows but I'm not sure it's real. I followed up with my U of I eye doctor about two months after my radiation and the photo showed no difference in the eye appearance, but the doctor was very concerned because my glaucoma pressures had gone severely high and my eyeball was hard as a rock and somewhat painful. Basically, my glaucoma is out of control. Continued high eye pressure will damage the optic nerve, which could prevent me from ever getting my vision back. We tried another Avastin injection, but to get my pressure down they had to put in another needle and withdraw fluid to make my eye soft again. I'm due to follow up with him next Wednesday.
The blood clot in my left leg appears to have broken up and moved to my lung, so I've been suffering a lot of shortness of breath with activity. I even have to take a break when walking up my stairs. So far I've been on blood thinner injections for six weeks and I have six more weeks to go. I hope the clot is gone by then because these injections hurt and build up knots under my skin that also hurt. They tell me that's normal. Unfortunately, I got a call from my doctor today and he wants me start taking the injections twice per day instead of once, because now my scans are showing I have two rather large clots in my leg and parts of both are probably moving to the lung.
My hemoglobin is still really low. That and the side effects of the blood clot and medication and anemia are why they don't want me to travel yet. I look so look forward to getting away with my friends Sheila and Barry.
I still can't believe 10 months ago I was starting dialysis and now I'm three months with a new kidney! I'm one of the lucky ones. My dialysis center told me I'm one of the few they've seen ever leave there alive. Most people do dialysis until the end of their life.
Starting in my second month after surgery, my neighbor Suzanne had put together a meal train three days per week as I was (and am) too fatigued to make my own meals. In addition, as a blind person, it takes me 10 times longer than the average person to do anything. It's crazy. The meals have been very helpful and much appreciated, and Alyssa has opened up her eyes to some new foods that she likes. I'm also now buying groceries online from Peapod so I don't have to depend on neighbors to shop for me. I should have done this years ago.
I look forward to feeling better and sitting outside in the fresh air (in the shade due to my skin cancer) as the weather gets warmer, and I know the kids are so excited for school to end. Alyssa is out June 2 and Tyler is out the week of May 8. Alyssa has plans to go to an overnight camp and a week-long bicycle camp, and Tyler recently got hired in a marketing internship working for a chimney business that one of our friends owns. This summer they plan on making a new commercial for the business and doing some work on their social media. He starts on May 15.
Steve is still extremely stressed that I'm blind, but he doesn't try to understand what I'm going through. I challenge him to try what I'm dealing with, but he won't. Like cooking. It's all stupid stuff like trying to put the right amount of mayonnaise in egg salad. It takes me so much time to do everything, and if I mess up, I have to start over. He just doesn't get it. Until you really live the life of a blind person, at least for a day, you don't know how tough it is. It's really unfair to say how easy my life looks sitting home all day and accomplishing little. On the flip side, I've never taken care of anyone who is chronically ill, and I know that is stressful as well. Our family could use some family counseling to deal with this crisis.
I really want to thank my siblings for helping me through this tough time. I know most of my relatives have been preoccupied with helping out Winnie and Lou Warchol, but still I get nearly daily texts or calls from my Aunt Jan from Texas to check on me. In addition, my Aunt Mary, who has her own health issues, has taken me to the doctor downtown three times (a 6-8 hour day in itself) and came over to help make food afterward before going home. Tyler and Alyssa were also there for me through surgery and afterward. Alyssa, as she gets older, has become much more helpful. Steve tries to help when he is able. Recently he went for three days with his father and brother for family bonding time at a casino in Michigan. Unfortunately, he didn't strike it big.
Lastly, I really want to thank my donor, Maureen. Also Sheila and Barry, who check on me from Atlanta to see how I'm doing multiple times a week. And Suzanne and Delynn, who take me for blood work and the doctors. I don't know what we'd do without the meals coming throughout the week, as there are days I don't have enough energy to walk to the kitchen and make even my own food. That may be why I'm losing weight.
If you've never considered organ donation, Maureen said it was one of the most rewarding and easy things she has ever done, and she is even willing to go on TV to tell her story. In addition, it makes for a very lucky, happy recipient.
Prior to surgery, my hemoglobin had dropped to 6.8 and my doctors were very worried that I wouldn't be able to get the transplant or have my kidneys out. I did not donate any blood in advance, nor could I receive any blood to build up an antibody to the donor's kidney. But, when I awoke from surgery on Feb. 5, I was so excited to find that the transplant was done. They laparoscopically removed my right kidney, which had six large tumors and multiple cysts in it. They had to make a 10" incision to get it out because it was so large. Because my hemoglobin had dropped, the transplant surgeon decided to give me the donated blood from my donor before the transplant and to keep my left kidney in to be removed later this year. Although my left kidney has cancer, it is not nearly as bad as the right one was.
I must say, the doctor warned me this could probably be the worst, most painful surgery I ever had, but I found it to be one of the easiest surgeries I had to undergo. I was in ICU only one day and my kidney functioned so perfectly that they were saying my donor was like a sister. They thought my hospital stay would last 10-12 days but I was home after six days. Wow. Like I said, this was one of my easiest surgeries. I usually have so many complications. Three days after I went home, they took out the catheter and I finally got to take a shower. It was the first time in seven months, and boy did it feel good.
My sister Robin flew in for my surgery from Pennsylvania and my brother Jeff flew in from Colorado. Then Robin went home to care for her family while Jeff stayed with me for 10 days, and then Robin came back for a few weeks. So, I had constant help at home for the month and Steve was able to work. I felt very good at home, and in week three Robin and I went out and met my kidney donor, Maureen. She is the most giving, wonderful, selfless person. To think someone would actually take time off their full-time job and worry about helping other people, when she has four children of her own, is an amazing fact to me. She went back to work just two weeks after her surgery and said she was feeling incredibly well. We decided we were going to get together over the early summer period and have a barbecue and let our families meet. She even has a daughter Alyssa's age. Funny thing is, when I met her, she said we are like sisters. Robin said she dressed like me, had the same coat as me, ordered the same food as me - it was just so funny. Maureen is so personable that if I had met her on the street, we would have become friends.
Maureen's four children decided to name her kidney before it was taken out so I would have a name for my new organ, and they came up with Gladys. So Gladys is my new "cleaning lady" as kidneys are the filtration system for your blood, so now I have a young, 46-year-old cleaning lady in my body.
Incidentally, have you ever wondered what happens to organs when they are removed? My doctor mentioned that if we want to go visit my kidney, it's waiting for me in a jar in the lab and they said I can visit it as much as I want. Isn't that funny? When Suzanne and I have time after one of my appointments, we plan to go and do a photo shoot with my kidney. They say people visit their organs all the time. It'll be there for 10 years.
After the first month, my honeymoon ended. Six weeks after my surgery, I was admitted for another six days due to the fact that I had a virus, dehydration, and a blood clot in my left leg. I was feeling rather ill as I had suffered from all the side effects of the anti-rejection medications, including severe diarrhea day and night. I noticed I wasn't feeling as well the second month from surgery and the doctor said it was because my high steroid levels for surgery were being lowered back down to my normal dose. I lost my appetite and energy, and felt in a way similar to how I did on dialysis. They said it'll take time to feel better because the first month is the honeymoon phase and it'll take at least six months to a year until I feel like I'm getting used to the anti-rejection medications.
Two weeks later I was readmitted again to the hospital with a temperature of 102.5 and a white count of 29,000. This is extremely high when you're on anti-rejection medication because it masks how bad you really are. I felt like I had been hit by a truck, like the worst flu ever, and I had horrible chills. I shook for two days. The infection was found to be in my right transplanted kidney, which required five days in the hospital and IV antibiotics followed by oral antibiotics when I got home.
I'm not really finding this transplant to be as easy as I thought it would be, and I certainly hope that the way I feel takes a turn for the better. At my last trip to the doctor, they told me I have every side effect associated with one of my anti-rejection drugs, Prograf, and the only way to decrease them is to switch my other anti-rejection drug. Unfortunately, the combination of the two causes renal toxicity, so I really need to keep my level lower so I don't reject the kidney, and hopefully that'll have me feeling better.
Over the past three months I've lost 9-10 lbs (I think I weigh what I weighed in 7th grade, ha ha). Yet, it's not good because I feel very sick every day and have no appetite, horrible insomnia, severe itching, shakiness, the diarrhea is back, and I find myself just sitting on the couch all day long due to extreme fatigue. Another big side effect of the medication is horrible headaches. I've had a migraine or severe headache every day for about a month or six weeks. It doesn't go away and I wake up at night with it. Plus I take about 35 pills daily. It's no wonder I have no appetite and don't feel good.
Another side effect that I'm very unhappy about is hair thinning, and now I have a well-hidden but large bald spot. If anyone knows any good treatments for thinning hair, please let me know.
Thankfully, I have not had to go three times per week downtown to the doctor as originally planned. The first week after surgery I went once, then it was every other week, and now once a month. I also get weekly blood draws locally. They're going to watch my other kidney closely. They want to take it out laparoscopically before the end of the year.
Just prior to the transplant, I underwent the eight treatments of radiation on my eye and was told not to expect any changes for at least three months, so I'm hoping to see a change this month. Sometimes I think I'm seeing some shadows but I'm not sure it's real. I followed up with my U of I eye doctor about two months after my radiation and the photo showed no difference in the eye appearance, but the doctor was very concerned because my glaucoma pressures had gone severely high and my eyeball was hard as a rock and somewhat painful. Basically, my glaucoma is out of control. Continued high eye pressure will damage the optic nerve, which could prevent me from ever getting my vision back. We tried another Avastin injection, but to get my pressure down they had to put in another needle and withdraw fluid to make my eye soft again. I'm due to follow up with him next Wednesday.
The blood clot in my left leg appears to have broken up and moved to my lung, so I've been suffering a lot of shortness of breath with activity. I even have to take a break when walking up my stairs. So far I've been on blood thinner injections for six weeks and I have six more weeks to go. I hope the clot is gone by then because these injections hurt and build up knots under my skin that also hurt. They tell me that's normal. Unfortunately, I got a call from my doctor today and he wants me start taking the injections twice per day instead of once, because now my scans are showing I have two rather large clots in my leg and parts of both are probably moving to the lung.
My hemoglobin is still really low. That and the side effects of the blood clot and medication and anemia are why they don't want me to travel yet. I look so look forward to getting away with my friends Sheila and Barry.
I still can't believe 10 months ago I was starting dialysis and now I'm three months with a new kidney! I'm one of the lucky ones. My dialysis center told me I'm one of the few they've seen ever leave there alive. Most people do dialysis until the end of their life.
Starting in my second month after surgery, my neighbor Suzanne had put together a meal train three days per week as I was (and am) too fatigued to make my own meals. In addition, as a blind person, it takes me 10 times longer than the average person to do anything. It's crazy. The meals have been very helpful and much appreciated, and Alyssa has opened up her eyes to some new foods that she likes. I'm also now buying groceries online from Peapod so I don't have to depend on neighbors to shop for me. I should have done this years ago.
I look forward to feeling better and sitting outside in the fresh air (in the shade due to my skin cancer) as the weather gets warmer, and I know the kids are so excited for school to end. Alyssa is out June 2 and Tyler is out the week of May 8. Alyssa has plans to go to an overnight camp and a week-long bicycle camp, and Tyler recently got hired in a marketing internship working for a chimney business that one of our friends owns. This summer they plan on making a new commercial for the business and doing some work on their social media. He starts on May 15.
Steve is still extremely stressed that I'm blind, but he doesn't try to understand what I'm going through. I challenge him to try what I'm dealing with, but he won't. Like cooking. It's all stupid stuff like trying to put the right amount of mayonnaise in egg salad. It takes me so much time to do everything, and if I mess up, I have to start over. He just doesn't get it. Until you really live the life of a blind person, at least for a day, you don't know how tough it is. It's really unfair to say how easy my life looks sitting home all day and accomplishing little. On the flip side, I've never taken care of anyone who is chronically ill, and I know that is stressful as well. Our family could use some family counseling to deal with this crisis.
I really want to thank my siblings for helping me through this tough time. I know most of my relatives have been preoccupied with helping out Winnie and Lou Warchol, but still I get nearly daily texts or calls from my Aunt Jan from Texas to check on me. In addition, my Aunt Mary, who has her own health issues, has taken me to the doctor downtown three times (a 6-8 hour day in itself) and came over to help make food afterward before going home. Tyler and Alyssa were also there for me through surgery and afterward. Alyssa, as she gets older, has become much more helpful. Steve tries to help when he is able. Recently he went for three days with his father and brother for family bonding time at a casino in Michigan. Unfortunately, he didn't strike it big.
Lastly, I really want to thank my donor, Maureen. Also Sheila and Barry, who check on me from Atlanta to see how I'm doing multiple times a week. And Suzanne and Delynn, who take me for blood work and the doctors. I don't know what we'd do without the meals coming throughout the week, as there are days I don't have enough energy to walk to the kitchen and make even my own food. That may be why I'm losing weight.
If you've never considered organ donation, Maureen said it was one of the most rewarding and easy things she has ever done, and she is even willing to go on TV to tell her story. In addition, it makes for a very lucky, happy recipient.
Saturday, January 2, 2016
Hope I make a better mom/wife once I get my gift of life
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!
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!
Subscribe to:
Posts (Atom)