I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on January 28, 2007, 01:11:45 AM
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This is from The chronicles of a guy afflicted with polycystic kidney disease and how he deals with this disease, dialysis, and his new cadaver transplant.
http://nmccart.blogspot.com/2007/01/letter-to-donor-family.html
Saturday, January 27, 2007
Letter to the Donor Family
My last post described the guidelines for writing to the donor family. I have composed that letter, and am going to share it here with my readers, in its entirety.
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Dear Donor Family,
My name is Nathan, and I received one of the kidneys that you chose to donate on January 11. I am a 28-year old computer engineer. My wife Jenny and I have been married for a little over two years now.
I was diagnosed with Polycystic Kidney Disease in 1998 while I was attending college. The nephrologist at the time said that I would have to watch my blood pressure, and that I would probably not have many problems with my kidneys until much later in life. I found out that I had the kidney disease because of a kidney stone. Polycystic Kidney Disease (or PKD) is a genetic disorder that causes the working cells of the kidneys to be replaced with fluid-filled cysts that gradually decrease the functionality of the kidney over the life of the disease.
In 2005 (at age 26) I got very sick. It turns out that there was an infection in my left kidney that was causing the cysts to bleed into each other. I was in the hospital about a week, during which time my kidney swelled up to about 15 lbs. The doctors had to remove my left kidney to keep it from causing any more problems than it already was. Before this, my kidney function was almost 20% of normal. After the surgery (and the month or so of recovery), it was discovered that my kidney function had dropped to less than 10%. I was terribly sick for most of 2005, barely being able to work or anything.
I started hemodialysis in July of 2005. I have had two fistulas. The fistula is a vein surgically tied to an artery which allows you to receive dialysis. The first one (in my lower left arm) did not work very well, so my dialysis treatments did not seem to help very much. After about ten months, the first fistula quit working and I had to have a temporary chest catheter installed. The surgeon gave me a second fistula in my upper left arm, and we waited for it to be usable (six weeks). This second fistula was tricky to use due to the vein being very twisty, and hurt more than the first one to have needles put in to it, but it worked for dialysis much better. After not feeling well for over a year, I was finally starting to feel slightly better. Of course, it did not help that dialysis was three times a week for four hours at a time. This was definitely not the way to feel normal.
I spent the second half of 2005 trying to get on to the kidney transplant list. I finally got to do my testing in January of 2006 (putting me on the list). I had three people get tested to see if they could donate a kidney, but only one was compatible. We were finishing up the testing with her when we got the call from the hospital. I cannot tell you how excited that I was to know that I could finally get a kidney.
Now that I am back to normal, I am sure that my life will be much better. My wife and I play string instruments for our church orchestra. We will be glad to not have to miss any more special performances for being sick and having dialysis. We will no longer have to skip Sunday School socials because I can not eat any of the foods that dialysis restricted me from. We should not miss nearly as much church this year from being sick, and I am thankful for that.
We are also hoping to get to travel now that I am healthy. My wife's grandmother lives out of state, and I have never met her. We were going to go visit her right before I got sick in 2005, but that had to be canceled. Now that I am well again, we hope to be able to go and see her. We would also like to do some vacationing that lasts more than a day, since that was about as long as we could be away from home while on dialysis. My parents also live out of state, and it will be nice to go and see them. I have only been able to travel home one time since I started dialysis.
Again, I want to thank your family for this gift of life. I have personally been praying for your family since I received the transplant. I know that the grief that you feel must be awful, but I hope that it helps you to know that your choice has dramatically improved my life. I thank God on a daily basis for your family and for your gift. I doubt that it was an easy decision, but it is certainly one that will have a wonderful impact on me for years and years to come.
Thank you again,
Nathan
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Keep in mind that the letter is to remain fairly anonymous. We are going to take it to the hospital with us on Monday and see if we can drop it off there to be delivered to the organ bank and eventually to the donor family.
Please pray that the family will receive this letter well. I do not wish to cause them more pain than they have already had to go through with losing a loved one. I just wanted to express my appreciation for all that they have done to change my life for the better.
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Thanks for posting this! I had several friends that had wanted to know what I was going to write to the donor family (since the donor was a cadaver). So, I posted it to my blog a week or so ago so they could see what I was sending in and how grateful I was to have this gift of life from their tragedy.
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Thanks for posting this! I had several friends that had wanted to know what I was going to write to the donor family (since the donor was a cadaver). So, I posted it to my blog a week or so ago so they could see what I was sending in and how grateful I was to have this gift of life from their tragedy.
This is cool, your friends must be true friends, and became donors, if they should have an accident. My kidneys are shot, but I have a good heart, plus I can see how people suffer. I pray, if I should go fast, someone out there will benefit from my decision to donate.
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Thanks for that, I plan on writing my letter this weekend or week... I am kinda nervous cuz i know there going thru pain. I just want them to know how much I do appreciate it and there family member has saved lives.
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Just remember to be sensitive to their pain ... and let them know how you feel and how your life has changed.
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Check out www.ctdn.org. They can provide with you all kinds of assistances on this matter.