3:30 AM - awake again. :)
It's been quite the journey. I have Polycystic Kidney Disease (PKD), diagnosed a million years ago, when I was 28. I started transplant testing seven years ago, started dialysis six and a half years ago, went through annual bouts of testing, and finally have reached this point, today.
I have spent the last two weeks having several tests, including an MRI of my brain and neck; endoscopy, ultrasound of my stomach and all the various organs. I will have two more this week, a cystoscopy and a stress echo.
I have kind of dreaded these tests. For the past six plus years, there have been many reasons to put me on hold on the transplant list. (They call it "inactive"). And every time I go through a test, I wonder if THIS is the one that will show something that will cause the beady eyes at the transplant center to put on the brakes. I mean, I have been steamrolling down the track the last year, roaring along towards my goal of a kidney transplant. I had several fund raisers this last summer; several individual donors to my cause. My thank you list is longer than my Christmas list and more than half of my Christmas list are not on my thank you list. But I still am composing an announcement (It's a Kidney!!!) that will include both lists and people that aren't on either list. My neighbors, my pharmacist, my nephrologist, my dialysis center, about ten other doctors I have met along the way, people walking by, people standing in the line at Albertson's, strangers.
The hospital where the transplant center is located has this nifty new records system, called Epic. All tests results go to it and the patient gets an email whenever a test result shows up. So, the test results are starting to come in. Blood work on weird things like clotting abilities, antigens - stuff I have to use a medical dictionary to decipher. Saturday night the results came back from my endoscopy. I have the beginnings of Barrett's Esophagus - a potentially dangerous disease that is pre-cancerous.
Whoa! My eyes bugged out and my hand clutched my throat (probably trying to feel the frayed, scarred lining of my esophagus from all those nights of scorching acid reflux attacks). (This is directly related to my polycystic kidneys growing so huge and pushing my stomach up against my esophagus.)
I started to panic. Mechanic Man said not to worry. The surgeon said not to worry. Today my nephrologist said not to worry.
But that's me. Worry is my middle name. I just can't seem to give my worries over. I can't release them. So, I lay awake at night and don't sleep. Worrying that THIS will be the reason to become "inactive". Now, when I am days away from getting a transplant.
Showing posts with label Transplant. Show all posts
Showing posts with label Transplant. Show all posts
3.22.2013
My Left Kidney
After reading several stories recently about individuals on dialysis and their different methods of seeking a kidney transplant, I have decided to join the growing crowd. So I am modifying my blog, which I started as a series of stories about my kids when they were little. Then, over the last three years, my blog has drifted to focus entirely on me. And my kidneys.
I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney. Eventually, I had both kidneys removed because they were so large (18 pounds total).
I have been on dialysis for three and a half years, starting in September of 2009. I lost my job as a result two months later. Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications. It's a rollercoaster. I will have a couple weeks, where everything is just right. And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash. Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session. And finally, again, I'll reach a point where I think, this is just right. But Murphy's Law prevails. And none of us (my seatmates) is exempt.
So - this blog is slightly revamped now. We'll see how this goes.
I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney. Eventually, I had both kidneys removed because they were so large (18 pounds total).
I have been on dialysis for three and a half years, starting in September of 2009. I lost my job as a result two months later. Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications. It's a rollercoaster. I will have a couple weeks, where everything is just right. And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash. Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session. And finally, again, I'll reach a point where I think, this is just right. But Murphy's Law prevails. And none of us (my seatmates) is exempt.
So - this blog is slightly revamped now. We'll see how this goes.
2.07.2013
To Be, Or Not
Yesterday, my seatmate at dialysis talked to his doctor about planning on NOT coming back to dialysis because the site in his arm is so pitiful and they spend about an hour trying to get it to work and the blood flow to be adequate enough to dialyze. I instantly went back to when my Dad had the same conversation. On the 10th of December, 1993, the docs told him they had fixed all they could fix and this was the last spot on his body that could be stuck with the two needles required in dialysis. That was a Friday and it was my older Army son's 21st birthday, stationed in South Korea.
Dad announced to us on that Friday that he wasn't going back to dialysis. Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid. Coffee. Nuts. Strawberries. Orange juice. All the liquid he wanted to consume. He was happy and actually the healthiest I had ever seen him. Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes. I think it was the right decision. He had little quality left to his life. Sleeping most of the day. Being confused when he was awake - thinking that whatever was on television was happening in reality. Using a walker. Wetting himself. Not being able to eat much of anything and then throwing up when he did.
So - I related to my neighbor but was sad about it too. This one decision (to not come back because our sites quit working) is one we all face eventually. So far for me - I'm doing great. It's been three years (thirteen for my neighbor). Transplant is the only saving grace and for my friend that is not an option. He is too ill, veins too wrecked, to handle a transplant.
Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take. With my insurance, that one particular drug is still $550 out-of-my-pocket a month.
It's daunting to think that maybe I'll have to make this same decision some day. To not go back to dialysis.
Dad announced to us on that Friday that he wasn't going back to dialysis. Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid. Coffee. Nuts. Strawberries. Orange juice. All the liquid he wanted to consume. He was happy and actually the healthiest I had ever seen him. Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes. I think it was the right decision. He had little quality left to his life. Sleeping most of the day. Being confused when he was awake - thinking that whatever was on television was happening in reality. Using a walker. Wetting himself. Not being able to eat much of anything and then throwing up when he did.
So - I related to my neighbor but was sad about it too. This one decision (to not come back because our sites quit working) is one we all face eventually. So far for me - I'm doing great. It's been three years (thirteen for my neighbor). Transplant is the only saving grace and for my friend that is not an option. He is too ill, veins too wrecked, to handle a transplant.
Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take. With my insurance, that one particular drug is still $550 out-of-my-pocket a month.
It's daunting to think that maybe I'll have to make this same decision some day. To not go back to dialysis.
2.20.2011
Desperate Housewives are Desperate!
Oh, let me count the ways I used to be a fan of Desperate Housewives. That's right - past tense. After tonight's episode, I quit.
I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”
And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.
I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.
I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”
I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.
I quit you, DH. Quit!
.
I have watched every episode three or four times. I have bonded to Terry Hatcher, as Susan. I have related to her ever since she locked herself out of her house, stark naked. It’s something I would do. I have followed her every antic thinking how I would handle the same situation, and I have found myself thinking, when I’m in a predicament, “What would Susan do?”
And, shazam! They made Susan go on dialysis - just like me! This has got to be good, I thought. BUT - Susan is NOT doing what I do and I would be embarrassed and mortified if I acted as she is.
I am a dialysis patient. I have dialysis three times a week, for three-and-a-half hours every session. Susan has it for six hours every session and let me tell you that no dialysis patient has dialysis for six hours at a time unless they are 400 pounds, diabetic, retaining water like a fish out of water, and have several other diseases tasking their bodies for some kind of normalcy. Also, I do not enter the dialysis room and “choose” where I will sit. I do not whine to police officers that I have dialysis and therefore they should let me go. I do not complain to restaurant hostesses to move up my reservation because I have dialysis. Not to mention the very restrictive diet I am on, which includes the amount of liquid I drink, and the types of foods I eat. No cola. No oranges. No potassium. No sodium. No chocolate. I do not drink a 32 ounce cola just before I go on to dialysis. We get weighed before and after dialysis and our goal weight is deducted from our starting weight and all that extra liquid is taken off during dialysis. Also, dialysis patients don’t all sit around with a beeper for a potential kidney transplant – in fact the majority of dialysis patients have myriad other ailments that disqualify them for a transplant, which on a good day would take three to six years to get.
I am totally disgusted with the way Desperate Housewives is moving with regard to dialysis. They should be ashamed of themselves. They are giving all dialysis patients a bad name. I pride myself in having an up attitude and see that same gumption in all the patients around me. And, also, I am surrounded by people on dialysis that are far, far worse than I am – most of them are diabetics, the most common reason someone needs dialysis. Most are in wheel chairs. Most use oxygen. Most have other diseases. We are not exempt to other ailments just because we are already “serving time.”
I don't go through my life acting like dialysis is this huge albatross around my neck. It's a routine I do - I get up, brush my teeth, get dressed, bring in the paper, go to dialysis, shop at the store on my way home, and I LIVE LIFE! Susan needs to get a grip.
I quit you, DH. Quit!
.
4.17.2009
Health Report #1
Just wanted all of you to know that I am "good" for a while. I am having tests done to start the process of going on a transplant list but my overall health is very good and that will keep me riding the fence for a while – and I pray for a long, long while. As I told a good friend, I am really good at sitting on fences. I should be a politician.
I feel the good vibes and the prayers. Thank you so much! I'll just keep on keeping on, as they say. Our minds are so powerful and our attitude is magic.
.
3.05.2008
Polycystic Kidney Disease
Polycystic Kidney Disease (PKD) is actually very common but hardly anyone knows about it. It is more common than diabetes. It affects 500,000 people in the United States and is a genetic disease that will affect whole families for generations. My Dad and his brother and sister all died from it. Their mother died from it. I have a brother and sister, as well as me, diagnosed with PKD. Both my siblings have had transplants, my sister from a live donor, my brother from a cadaver. Both have been very successful, particularly for my brother.
I urge you to consider being an organ donor. Having a transplant is a life saver!
I urge you to consider being an organ donor. Having a transplant is a life saver!
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