Recipient/donor recoveries

[alyfaye]

I've been curious about this for a while- about how long is the hospital stay and home recovery for the recipient? I've talked to my recipient about what she was told to expect, and I know it varies greatly between each person and how the kidney takes. But, can anyone share how the recovery was for your recipient? How was it different from yours? The girl who is getting my kidney is 26 and otherwise completely healthy. This is a preemptive transplant so she has not had to go on dialysis yet. We are optimistic that she will have a quick recovery and the kidney will do well but you just never know until after the surgery. She is excited to have a buddy to practice walking with after surgery and to hang out at our hotel once we are released. However, I'm a little worried that I will be out of the hospital and headed home before she is really even up for the company. I don't want her to think that I don't want to spend the time with her, but I'm afraid that she will be let down if my recovery is much quicker and we aren't going through it together. However, the last time I was under general anesthesia I was very, very sick for about 5 days and couldn't keep anything down (can't even imagine throwing up after this kind of surgery), therefore couldn't get my bowels working again. I wouldn't want her to feel guilty if something like that happened again and my recovery was slower.

I know a lot of you have said that you donated to loved ones who you either live with or stayed with after the transplant. I would love to hear how the recovery time was for you and recipient. Basically, I would just like some reassuring words (or not reassuring, if that's the case) about the donor/recipient relationship during recovery after the transplant.

[sherri]

Alyssa,

I donated to my brother 4 years ago. He lives in NY but decided to come to Hopkins for his transplant because he worked for one of Hopkins' major financial donors and they arranged to have VIP treatment for him. He did his testing on the same day that I did mine. So he also only spent one long day at Hopkins. He also had not gone on dialysis and was otherwise healthy before transplant and was 36 years old at the time. We both went to the hospital the morning of the surgery. My brother's wife took a room at one of the Hopkins lodging places and my husband stayed with me in the room. I opted for Marburg so that my husband could stay with me. I wanted to be assured of a private room and not have to share a bathroom with another patient. My brother was on Nelson with all the other transplant recipients.

The donor surgery is usually harder than the recipient surgery in terms of recovery. If you had a bad reaction to the anasthesia from your previosu surgery you can discuss it with the anaesthesiologist to make sure you are well covered for anti nausea drugs etc. I was not able to eat after the surgery. You have this full feeling from the carbon dioxide they use in laparascopic surgery. My brother actually felt great. Recipients have a longer but more superficial incision where they slip the kidney in and attach it. Nothing is removed so it is a little less traumatic than for the donor. The recipient's big issue is watching for infection and rejection. They will usually go to the ICU overnight and then to the regular floor. It all depends on how they are doing which determines their level of care. Much of their time in the hospital is watching their labs, urine output, and education on taking the antirejection medications. There are sometimes reactions with blood pressure fluctuation or diarrhea which may force them to stay in the hospital a little longer. So recipients usually will stay anywhere from 5 - 7 days. My brother stayed 10 days because of some diarrhea. I had my surgery on Monday and left Friday morning. He stayed in town at a separate apartment so we could each recuperate on our own for another two weeks and then went back to NY. My other brother came to stay with him and took him to clinic appointments for blood work. So total after 3 weeks he was able to go back home. He went back to work at the beginning of January and our surgery was Nov 12. Recipients also need to be careful of germs as their immune system is compromised so they don't recommend being around lots of people and crowds. Physically he healed pretty quickly.

I felt like it was a good idea for each person to have the space and time to recuperate separately. It's not a competition and you each need your own space because you are both real patients. Both donor and recipients have different challenges. I never had any expectations of our relationship changing. We weren't that close as children since I am 8 years older and left the house when he was 10 years old. I share more traits with my sister and other brother than with my kidney brother but I had no expectations of the relationship changing and it didn't. We talk every so often, maybe more than we used to but still only see each other a few times a year. Today is actually his birthday so I will call to wish him a happy 41st.

Try not to have too many expectations that will set you up for disappointments later. You may also want to journal and write things down. Sometimes its nice to look back on it and helps remind you of where you where you started and how far you have come.

Looking forward to seeing you.

Sherri

[CK]

I was up and walking around right after I got out of surgery and was discharged by early afternoon the next day. I recovered quickly with no major issues. I stayed with my parents for 5 days after I was released, and I was tired and sore, but able to go to the hospital every day to visit my recipient and really doing quite well.

My recipient was in the hospital for 5 days. He had a double nephrectomy (due to enlarged kidneys from PKD) as well as the transplant. His first few days were rough (he had an incision about 18 inches long and an NG tube down his nose), but he got better quickly. When he was discharged, we both went to my house as I was feeling pretty good and able to help him. Those next 5 days he laid low, didn't do much, it was hard to walk too far or do much of anything as he was sore and still very bloated from the fluids.

I could have gone back to work after 2 weeks but I took a third one off to help my recipient as he couldn't drive yet, etc. He quickly got better over that third week and returned to work the next week. He is, I would say, an ideal case. It's been 7 weeks since our surgeries and he is only seen in the clinic every 2 weeks whereas most people go twice a week for 3 months. The doctors continue to be amazed and pleased with his recovery. He has lost 25 lbs of fluid, his numbers are all normal and he is getting off of BP meds. He has little to no side effects from meds.

Both he and I are in our 40s and healthy (him other than his kidney disease). We were both pretty active, healthy eaters prior to surgery. I think it depends on a person's overall health, their pain tolerance and ability to tolerate meds, etc.

I'm not sure the donor surgery is worse. That's what historically was true, but now, with the laproscopic procedures, it seems not uncommon for people to be out of the hospital quickly.

[Fr Pat]

     Keep in mind that while the donor "just" has to recover from the surgery (which IS major surgery) the recipient has to recover from the surgery and also at the same time receive large doses of anti-rejection medication (which has side-effects and dangers). The dosage of anti-rejection medication, and even the choice of which anti-rejection medication to choose, requires frequent and careful checking. And, it is the start of a life-time of anti-rejection medication. So the "recovery" of the donor and the recipient are really two quite different things. So, as mentioned in a post above, be careful not to link your recoveries TOO closely, as you will both be on quite different paths.
   best wishes,
      Fr. Pat

[elephant]

Dear alyfaye,

Even if you and your recipient live together, do plan for adequate caregiver support after surgery.  I was released from the hospital on the second morning after surgery, while my Dad stayed two more days.  It would not have been possible for one person to help both of us at that time.  While I was able to stay home alone and care for myself, I wouldn't have been able to help out with him at all for the first two weeks, much less take him to Dr's appointments.  I was sleeping about 16 hours a day at first! 

The average recipient surgery is less traumatic than the donor's.  But the recipient is starting a lot of new mediciations, and this can be a challenge.  When my Dad started his anti-rejection medications after his first transplant, he was hallucinating for a couple of days.  Weird! 

God bless you both.

Love, elephant

[MissFrizz]

Dear Elephant.  Thank you for posting this.  It reminded me that my father often hallucinates in the hospital.  They called it "hospital induced dimentia" last time and it's not fun.  My brother, who will be one of his caretakers, was concerned about that, and it appears we can put that in the "definitely might happen" category.  We can be on our best defense now. 

[smudge]

Hi

My recipient and I both live on our own.  After our transplant I went to stay with friends until my recipient came out of hospital (which was 2 days later).  We stayed there together for a further 10 days until I was back driving and able to look after her.  She came to stay with me for a further 10 days until she felt well enough to look after herself (and I had to go back to work then).

It all worked out fine.  We definitely wouldn't have been able to look after ourselves but were perfectly capable of looking after ourselves and being useful houseguests - we certainly didn't need waiting on and didn't feel we were a burden on our hosts - they said they were surprised at how mobile we both were and they didn't feel like we needed 'looking after', it was just like having a couple of friends staying.

Hope that helps

[alyfaye]

Thank you everyone! I feel much more ready for recovery after hearing so many stories here. My recipient and I both have family that will be here for us and we plan to spend as much time as we can together if our individual recovery plans allow for it. Surgery is tomorrow at 12 for me and 12:30 for my recipient. Please pray that both operations go smoothly and her new kidney gives her years of quality life

[cupid]

Best wishes tomorrow for a successful transplant and a speedy recovery!
Lauri

[SWB]

Please post updates to let us all know how things go.  And, wishing you a safe, successful, and stress free donationo full of positive memories !!!