Changes in your recipient's life after the transplant

[shelley]

This thread is inspired by Sarah's list of the improvements she sees in her sister Kaylah's life since Sarah's kidney went to live with Kaylah.

Would anyone else like to share what your recipient's life was like before, and is now?  I would be inspired by it and would like to encourage my potential recipient with your words.

thanks in advance

[Orchidlady]

What a nice thought, Shelley!

Before:
Tied to a dialysis machine 3 days a week
Stuck with needles (knitting needles is what he used to call them) three days a week
Life revolving around doctor visits, dialysis visits, and bloodwork
Eating the wonderful "REnal Diet" - the worst for him was no potatoes (other than half a cup of overnight leached, mashed potatoes or a thin,thin slice of tomato)
Lack of energy - he would come home from dialysis and not really feel like doing anything other than lay on the couch and watch TV

After:
No dialysis - he can travel and move around at will
No needles other than monthly blood work
He can eat what he wants - but does maintain a healthy diet
Greater appreciation of life in general
fewer pills (really)
Boundless energy - he said immediately after he work up from surgery he felt like he had been shot out of a cannon!

His main comment when we got home was that he always felt he was tolerating dialysis pretty well, but he had no idea how bad he truly felt until he started feeling good again.

[shelley]

Wow, o'lady, that is a mighty list.  And he's had your kidney since 2007, that's a long time.  How about side effects from the anti-rejection meds? 

You see him living his life every day right next to you, what a good feeling it must give you to know you've had a part in that, in a deeper way even than being his wife.

[Scott337]

My recipient was 23 years old when he was diagnosed with stage-4 renal failure with a rather serious blood-pressure issue.  For the next year-and-a-half he was on dialysis 4 hours per day, 3 days per week, was extremely fatigued much of the time, looked sickly and his blood pressure was very difficult to control.  He was also the consummate outdoorsman (hunter, fisherman and generally lived outside).  

We didn't know each other and met the day before surgery.  After the surgery (day after) his blood pressure was under control (without medication), he was eating solid foods, his color returned and he looked much healthier and he said, much as I'm certain is consistent with many other recipients; he didn't realize how truly horrible he felt until after the surgery and experiencing how much better he felt, almost immediately.  The best of all, was seeing the huge smile on his face and the tears of happiness and relief in the eyes of his mother, father and two sisters.  

Within about three weeks of his surgery, he was able to get into his deer stand and shoot a deer (and no...he didn't lift or pull).

I really didn't realize how much this entire experience would mean to his family until his father came to my room one night after the surgery, with tears in his eyes and said he didn't know how to thank me for giving them their son back....

Before the surgery, after becoming educated on the procedure and the potential short and long-term risks and effects to my health and future, I determined I was willing to accept whatever the consequences were in return for a positive outcome for my recipient.  I've prayed for my recipients continued recovery and overall health and have taken responsibility for my own by taking care of myself.  The rest is in God's hand.  

Your discomfort/pain from this surgery my friend will come and go rather quickly, but the awareness that you did something, so selflessly out of a love for someone else, will last forever (the two will not compare).  Be brave, the Lord never burdens you with more than you are able to handle.  

Good luck and rest easy in the knowledge that we are all here for you.  Much love and my prayers for your courage and fortitude.

Scott  

[Orchidlady]

Shelley,
How kind of you to ask after my husband! He is fortunate in that the amount of anti-rejection medication he has to take is pretty low. He has a headache now and then from the prograf, but that is about it. We were an 0/6 match, and that is one of the reasons I tell people not to fret over the match too much. Even at 0/6 he takes less medication that some others he knows who had a much higher match. I think it all depends on the person and other underlying health issues. Be sure to resurrect this thread after your own surgery - we want to hear your story of how your generosity changed the life of another!

[lawphi]

  A 6 antigen mismatch from a living kidney is better than a zero mismatch cadaver.  As spouses, you are constantly exposed to each other and I think it creates an unscientifically proven tolerance.

Antigen matching only decreases longevity by 10-20%.  Other factors can play a role, like steroid free immunosuppression, time on dialysis, overall health ands weight of recipient.

My husband can urinate and has his fertility restored.  We did home hemo prior to transplant and saw a drastic improvement in his quality of life immediately.

[shelley]

For me, there is no greater incentive to donate, than the responses on this thread.  It's one thing to be told you're "giving the gift of life", but when you get specific, like recipients being able to urinate, take part in much-loved activities like deer-hunting, eat what they want, have energy and strength......those are pictures I can see! 

Thank you all for sharing.  I understand not all donors know how their recipient's life has changed as a result of the transplant.  But for those of you who do, I hope you will chime in as well.

[kali]

My recipient (one year ago) has been pretty tired/depressed.  He actually has less energy than before.

[treehugger]

There are lots of little improvements to my husband's (and by extension, mine) life post-transplant (18 months ago), but they all add up to this: our lives used to be ruled by kidney failure and dialysis; now, we just lead a "normal" life with any number of other things to focus on besides poor health. We love normal life!

Life before the transplant:
at-home peritoneal dialysis (hooked up to the machine for 10+ hours every night)
sleeping in separate bedrooms
poor sleep quality
tubes hanging out of his abdomen
worries about port infection
me giving him a weekly injection in the belly
too many food restrictions to list
ER visits
exhaustion
20 pound lifing restriction
weekly blood draws
swolen ankles, general edema
no swimming
constant medication changes
depression

Life now:
sleeping in the same bedroom
freedom to travel
freedom to wake up and go to bed when the body wants to
restful sleep (no alarms!)
can eat (almost) anything
ankle bones appear! shoes fit again
allowed to swim
no lifting restrictions
can go for days without thinking about kidneys at all
Can enjoy an appreciate life much easier

Kara

[treehugger]

My recipient (one year ago) has been pretty tired/depressed.  He actually has less energy than before.

I'm very sorry to hear that. This is a good reminder that a kidney transplant certainly isn't a cure for kidney failure. We all like to focus on the positive outcomes, of course, but not everyone wakes up from surgery and feels wonderful. We had a very rough 5 months post-transplant, but then things suddenly turned a corner and DH felt better than he had in 10 years. I sincerely hope that your recipient can get help from his/her team of doctors and feel better soon.

Kara

[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