Living Donation Discussion and News > Living Donation Forum
Changes in your recipient's life after the transplant
Aries7:
I donated to my Husband and we were able to do the transplant before he ever had to go on dialysis. He was down to about 12% kidney function so it was close.
Before the surgery, he did not have near the energy he does now. He did remarkably well for someone with only 12% kidney function. He would make it through the work day but fall asleep in the chair every night shortly after he got home. He also was getting leg cramps at night and I would rub his legs to try to make them feel better.
After the transplant, he has a LOT more energy. I tease him and tell him that think he may have more energy than I do now! :)
He also does not get the leg cramps anymore, and I and the rest of the family think his color was a lot better after the surgery too.
I am so glad to see him doing so much better. I thank God that I was able to do this for him, and cherish every day that he is healthy and able to live his life.
Linda
Christine Robinson:
My son received a deceased donor kidney in 2004 when he was 13, which is one reason I became a donor in 2007. Jake was a just a boy during the time he was on dialysis (9-years to 13-years old) and the routine limited him and us in so many ways. The changes in his life after the transplant were unprecedented:
Before:
~ Jake had been on peritoneal dialysis for 4+ years. Where peritoneal offers the convenience of home treatment, it has to be done daily and the treatments take hours and hours. Therefore, Jake was hooked up to the machine every evening before bedtime, then dialyzed all through the night.
~ Neither he nor I slept through the night during that period. He was 9-years old when he started and 13 when he received his new kidney. Kids tend to move around a lot when they sleep, and sometimes several times a night, Jake would kink the tubing, which caused the dialyzer alarm to sound. There were nights when I was up to deal with the alarm 6-8 times. For four years, neither of us knew the meaning of a good night's sleep.
~ Every morning before getting ready for school, he had to be weighed, BP checked, "flow charted", etc. His catheter site dressing (bandage) had to be changed.
~ He had to receive a daily Epogen injection (growth hormone) and weekly Procrit injections. After a time, he learned to give himself these injections.
~ He had to have blood work every two weeks (and sometimes every week). Like the injections, after a time he stopped screaming every time he went through this.
~ We were constantly changing his meds to accommodate the changes in BP. The so-called "rescue" meds he took when his BP got too high made him feel like sh!t.
~ He only had one friend whose Mom was willing to deal with the dialysis hassle overnight, so he missed 99% of the sleepovers and camping trips.
~ Traveling was a nightmare. We're in NY, but my family is down south. If we went on any kind of vacation, it was total stress. We had to plan and order supplies for delivery to our destination, and hope that we had everything we needed for the overnight stop while we were en route. Inevitably, we would leave something crucial behind... a clamp, a piece of tubing or connector... and Jake would miss a dialysis treatment. This wasn't life threatening, but it meant that was the first order of business as soon as we arrived to wherever we were going. We didn't do much visiting during that time.
~ He had no energy. No childish play-till-you-collapse except on rare occasions. Jake's childish activities were quiet ones.
~ He was depressed, a depressed 9-year old. Sometimes he was angry. Sometimes I was angry.
Life after the transplant?
~ None of the above.
shelley:
Oh my goodness Christine, what you went through. What Jake went through. I am SO GLAD he doesn't have that anymore!!!!
If what you've described isn't a convincing reason for anyone to donate a kidney, I don't know what is.
Christine Robinson:
Hi again, Shelley,
Yeah, when I look back at those times, it seems unfathomable. When I saw the title of your post "changes in your recipient's life..." my initial reaction was, "Well, I can shed some light on that AND how it influenced me to become a donor." But it wasn't until I was actually writing the words that I realized how the situation might be perceived by someone who hadn't experienced that. And that my appreciation for Jake's own grace and strength hit me.
There was a lot I left out, too. More hospital stays than I can remember; exit site infections, peritonitis, catheter issues and infections... In 2002 I married my second husband. The day my brother arrived from Alabama to help button up all the week-before details (he was my "man of honor"), Jake had to go in the hospital due to peritonitis. He had surgery to correct a catheter issue two days before my wedding, and we weren't sure he'd be out in time for the wedding, OR if we'd be able to go on a honeymoon. It all worked out (except for the enormous fact that I'm now DIVORCED from my second husband-ha!)... but that was somewhat harrowing for all of us.
This is just MY perspective as his Mom. Jake doesn't talk about those days very often. He's now a young man, soon to be 21 years old. He's physically and, for the most part, emotionally stable. He's compassionate, highly intuitive, and in my opinion, a gifted thinker who has yet to realize the potential within himself. He sticks rather close to home, but I see him becoming more confident in life, more hopeful. I'm inclined to think that the emotional scars he's acquired can be traced back to his diagnosis at age two, and the subsequent tests, treatments, etc.
But that's another story entirely.
I do advocate organ donation - living and deceased. But I'm also pragmatic; there are so many people out there suffering in one form or another. There are risks to being a living organ donor and I hope anyone considering it will be absolutely informed about the possible negative outcomes, and diligent as hell after the fact. Of course, had I been able to donate to Jake, I would have done it in a heartbeat, risks be damned. Of course. And I acknowledge wholeheartedly that it improved his and our lives a thousand percent. My gratitude for the deceased donor family is unsurpassed.
But for anyone considering being a living donor, think it through.
~ Christine
sherri:
My brother was diagnosed acutely with renal failure secondary to Iga nephropathy in the spring of 2007. He had been seeing a neprhologist since 2005 but had not been on any medication or following a renal diet to protect his kidney despite the microscopic hematuria.
We had our surgeries in November 2007 so he did not have to wait too long to get a working kidney and was able to avoid dialysis. Once diagnosed he was prescribed a high dose of steroids and medication for blood pressure. Once transplanted he was able to decreased his dose of steroids to only 5 mg to protect the kidney. His list of medications obviously got longer but he is alot healthier. After 2 years his glucose shot up and he was prescribed metformin for diabetes. I think it was a real wake up call, as if renal failure wasn't enough,that he needed to be more proactive about his health. He started Weight Watchers and has lost 50 lbs. He is now exercising, something he never did on a regular basis. He still has a way to go but is at least going in the right direction. My youngest brother also has microscopic hematuria and is under the care of a nephrologist so this has also been an opportunity for him to keep close tabs on his kidney function and maintain a healthy lifestyle. Our family has learned a lot about not taking one's health for granted.
My brother was fortunate enough to receive a transplant preemptively and avoid dialysis. The transplant hopefully has been an impetus to take charge of his health and make the best choices every day. As a donor, I certainly appreciate the intricacies of our bodies and have made a conscious effort in living a healthy lifestyle.
To continued good health!
Sherri
Navigation
[0] Message Index
[*] Previous page
Go to full version