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.
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