New Donor, almost.

[kdub]

I started reading through some of the posts here, and all the different perspectives and thoughts really resonate with me.  Thought I'd introduce myself.

I'm getting ready to donate a kidney to my brother a week from today.  He has IGA-N, and has been on dialysis for over a year now.  We're doing a research study, where they give my brother radiation and some of my stem cells.  Apparently this sometimes allow the recipient to be weaned off the anti-rejection medications.

I'm pretty scared and nervous.  I've never had any kind of surgery before, and this seems pretty major.  Anyway, I'm looking forward to reading more of the threads here.  Thanks.

[lawphi]

It is ok to be nervous. So much about the surgery depends on your age, health, size and family support.  Is his IGA-N in "remission"? 

I had a very easy surgery and donation. The pain was mostly soreness, which I do well with.  There are so many great tips on the board to keep in mind. 

Talking about your nerves will help. 

[kdub]

No, my brother's IGA-N is not in remission.  Not sure what the questions are around that, but none of the doctors seem to think that is a consideration.

I still have a lot more to read on the forum, so I will look out for tips on pain management, etc.

Mostly, I think I'm worried that I will not be able to be as active as I have been most of my life.  I'm a 40yo guy with two young boys, and we are always doing fun stuff like bmx, etc.  So, mostly I'm just worried that missing a kidney will effect my ability to be active, etc.

Hopefully in a few weeks, my brother will have a new kidney, and mine will be going strong as well.

[CK]

My surgery was also pretty easy, I was out the next day and I didn't have a lot of pain. I'm 46. I was sore for a while, but I had normal energy levels within 2-3 weeks. I donated 5 months ago and if it weren't for the scars, I wouldn't even know the kidney is gone. You can still be active, just no contact sports like hockey or football.

I don't know what makes it easier on some people than others. I had never had any surgery before either, so I was pretty nervous, mostly about how long it would take to get back to work and normal since I was self-employed at the time. All that worry was for nothing, though, it was pretty easy. I tend towards high pain tolerance, I think, but I didn't feel a ton of it. I felt like I'd done about 500 sit-ups, my abdomen was just sore and stiff. I was back to work in 3 weeks...could have been 2 but I opted to take an extra week to help out my recipient (my boyfriend) who had a double nephrectomy as well as the transplant.

Get out of bed as soon as you can and walk, walk, walk. That helps a ton. I was back to walking my dog after a week and a half or so. My surgeon said as long as I'm not lifting the dog, the walking is great.

You will enjoy watching your brother get well. My BF is like a new man.

[sherri]

I also donated to my brother who has Iga nephropathy. I was 44 when I donated. The surgery for both of us was successful. I stayed in the hospital for 4 days. I wanted to make sure everything was working the same way when I left as when I went in. Immediately post op was very painful. I found it hard to evaluate pain using the verbal 0- 10 scale. I kept thinking everyone said this is such an easy surgery, some even went home the next day but I did not feel that way and my pain wasn't managed well. So think of yourself as a real patient, don't be afraid to use the pain medications as needed and have someone with you in the hospital who is comfortable advocating for you. I am now 4 1/2 years out. The scar is faded pretty much. I physically can't tell that I've had surgery but I had a tough time emotionally. Donating for me came with a lot of ambivalence.

Make sure you leave yourself enough time to recuperate, don't lift over 10 lbs or you may get a hernia, walk around and take it easy. Let others help you out if you need. You will be a real patient who had real surgery with anaesthesia and sharp instruments. Good luck to both you and your brother and let us know how you do.

Where are you having your surgery?

Sherri

[kdub]

Wow, its great to hear both sides of the story... sometimes the surgery is just uncomfortable, and sometimes it is very painful.  Seems like, up until now, the only people telling me it would not be too painful were the people at the donation center, who obviously have a vested interest in making things seem as easy as possible.  Makes me feel better knowing that there are actually people out there that had a less painful recovery.

Sherri, I'm so sorry to hear you're having a hard time still after 4 1/2 years.  I understand what you mean about ambivalence, as my mother was also a match, but was quite insistent that my other brother or I donate to my brother with IGA-N.  I know she regrets acting that way now, but it really left a bad taste in my mouth.  I'm pretty much over it at this point, but I can definitely see how this process could create some very upsetting dynamics within a family!

I am going to have my wife with me in the hospital the whole time, and she is a nurse, so I think she will be particularly helpful.  I am definitely considering myself a real patient, but it does feel like no one else at the donation center considers me to be a real patient.  I'm having my surgery at Stanford, mostly because they are doing the research study that my brother and I wanted to participate in. 

[elephant]

Dear kdub,

It's wonderful that you are hoping to help your brother by donating your kidney.  It is also interesting that you are participating in ground-breaking work.  I pray all goes well for you both.

Donating a kidney is major surgery, so it's normal to be nervous.  There will be a recovery period, during which time you will need to heal from the surgical trauma and also from the loss of an internal organ.  I took 3 1/2 weeks off work, and really could have used another week.  For me the biggest issue was fatigue.    

Many donors are active people.  This makes sense, since only the healthiest people are selected as donors.  Some posters here say they became more active after surgery than before!  I was running again after a couple weeks, and weightlifting a few weeks later.  After four months I was able to complete a 50-mile bike ride with no problems.  The only change I made was to very gradually increase my weightlifting over a period of six months, especially when the adbomen and torso are involved.

Love, elephant.

[Fr Pat]

     Although I have already mentioned it elsewhere, a book that you and your family might find of interest is "The Reluctant Donor" by Suzanne Ruff (can be bought at www.amazon.com or your local bookstore can get it for you.) She narrates in honest detail her struggle over deciding whether or not to donate a kidney to her sister, within the conrext of a family with many cases of hereditary kidney disease. As it is a full book she is able to talk at length about the many emotions and challenges involved.
     best wishes,
          Fr. Pat

[sherri]

Kdub,

Family dynamics play a big part in the donation process especially between siblings. I don't know how much support you have gotten from your transplant team, but I don't think my team understood these issues. My brother's doctors and mine as well just assumed family is an organ bank for their patients and I felt like I was treated as a spare part. I needed more help in coping with the donation process. I have gotten some professional help to come to terms with the feelings of entitlement and lack of support from those who were supposed to care for me. Thankfully, we are doing well physically which helps also. I'm sorry your parents have pressured you into this, even if you want to do it. I know the feeling. Through the testing process I wish someone would have said, "we are concerned about you and your family, if you don't want to do this please don't feel obligated". I would have donated anyway because I think to some extent we are obligated and responsible for family, but it would have made it easier had my parents and brother and family shown some concern. On the other hand, I have to empathize with him and the desperation he must have been feeling going into acute renal failure. His doctors just said, call your family and get someone to give you a kidney, live donation is best, the surgery is no big deal. I know they down play the surgery for the donors because my brother even asked me if my then 18 and 19 year old daughters would donate. When I said no, they haven't even started their own families and can't make a decision like this he said oh, they can still get pregnant with one kidney (as if I thought one kidney caused infertility). Down playing the surgery, the risks medically, emotionally and financially cheapens the gift and is disrespectful to donors. There needs to be a better balance. Hope you are getting the support you need from your team.

Sherri

[kdub]

Sherri,

Your story really resonates with me.  It does feel like the transplant center considers donors to be living kidney incubators.  I can only imagine a worst case scenario where your family is treating you that way also.  I really hope I get to have a donation that is "no big deal", but there are clearly complications for many people, and stepping into risk, knowing it might not turn out the way you want, is tough mentally.  So many though issues in your story, but I can't imagine anyone asking for a donation from one of my kids (well, they're only 4 and 6).  I mean, really, if you need to ask their parents permission, then they aren't old enough to donate imo. 

[audrey12]

kdub, I work in Cupertino.  If you'd like a visitor, send me a message.  I'm happy to come by, either at the hospital or afterward (if you're in this area).  I live on the San Mateo County coast.

I also had a good experience.  I am 4-1/2 years out and just qualified for super-preferred life insurance rates, the best you can get.  Since the surgery I've taken charge of my health, lost 30 lbs. and do more regular walking and elliptical workouts.  You will have a risk of higher (not necessarily high) blood pressure, and anything you can do to keep yourself in good physical condition will help.  My BP rose slightly and my cholesterol too.  The weight loss and exercise brought everything within normal limits.

BTW, I was 51 when I donated.

[PhilHoover]

Here's my advice:

1) Make sure you have a support system in place BEFORE you have surgery...this needs to be more than just your "family."

2) Don't plan to lift anything heavier than a glass of water or a plate of food for at least EIGHT WEEKS....minimum.

3) Don't let the hospital "push you out" too quickly.  If you need to stay a couple of days--INSIST on it.   I am horrified that so many donors are "going home the next day."  I find that whole possibility to be HORRENDOUS...HORRIFYING. 

4) You will have some pain...just expect it, and take your pain medication AND your STOOL SOFTENERS regularly.  Those stool softeners are your BEST FRIENDS for a while.

5) Walk as much as you feel like walking....get up and walk as soon as you possibly can.   I said "walk"--not run...walk...

Praying for a speedy recovery.

[jatopa]

HI Kdub,

I gave a kidney to my brother last December.  We are both in our 60's and have both done really well.  I was walking the hospital hallway at 5 am the next day.  The surgeon had to chase me down to kick me out of the hospital and into a hotel nearby where I could get some good sleep.  I went to Paris on vacation 1 month after surgery, and my brother went to Hawaii 4 months post op.  Ours was a pre-emptive transplant.  He has never gone through dialysis.  I look at my brother now and he looks so much better, while I feel no physical changes, just happy that I could do this for him. 

You are right to mull over all of the negatives and potential risks.  Those of us who have come through this unscathed have a tendency towards euphoria over the experience, but, as you have heard from others, that is not always the case.  There is always some risk to consider, and this is real surgery.
I'm sure they have told you no kick-boxing, sky diving or bungee jumping for the rest of your life.   

Best of luck on your journey.  You will be in excellent hands at Stanford.

Regards,

Jatopa

[kdub]

Hi Everyone,

My brother and I had our surgeries on Monday.  Everything went pretty good, main thing being, I am still alive, and feel pretty OK.  I have a very weak stomach, so the doctors had a pretty tough time figuring out how to control my pain, without making me very ill.  In the end, I left the hospital with percocet and scopalamine, which seem to be working pretty well.  I'm also taking a stool softener called colace.

My brother is still in the hospital, but his creatanine is down to 4, from where he started at 30.  His new kidney is producing huge amounts of urine, so it looks like he's going to be OK!

I had a pretty decent experience, but as other people have noted, it is quite painful, at least it was for me.    Thanks for all your help!

_kdub

[Karol]

Congrats to you both!
I hope your brother comes home soon - take care.