Just donated a kidney on 8/8

[loustar]

Hi everyone.  I just donated a kidney to my uncle on 8/8.  I live in Los Angeles, and I travelled to San Francisco for the transplant.

Surgery was on a Thursday morning, and I was given the green light to leave the hospital on Saturday.  In retrospect, I think I should have stayed one more day.  Hospitals are generally gross and depressing, but I think it would have been better knowing I could have help at any time.  I was discharged to a hotel about 30 minutes south of the hospital. 

My final post-op was one week from the surgery date.  I flew home to Los Angeles that day, and I am at home recuperating.  Physically, I am doing well.  I was able to transition off of the percocet on day 4, and I take regular tylenol every 5 hours or so. 

I have a couple of questions for people who have donated a kidney:
1 - I don't feel like eating much, but when I do get hungry, it comes very quickly.  If I don't eat something within 20 minutes or so, I feel awful.  I usually try to avoid this by keeping a lot of fruit around for a quick snack at the first sign of hunger.
2 - Walking around is fine.  I am able to walk for about 1 mile, 3 times a day.  But sitting and talking with friends leaves me short of breathe rather quickly.  Is this something that eventually goes away?
3 - This has been difficult on me emotionally.  I definitely went through a feeling of abandonment from the medical staff after my post-op visit.  In fact, when I asked the receptionist if they validated my parking, they told me they only do that for pre-op visits!  I also noticed that I am very emotional and cry at small things.  Is this something that will also pass?

Thanks for your help. 

[sherri]

Loustar,

First of all, congratulations and welcome to the club! Glad to see you are on the other side.

Everything you describe sounds very familiar. I donated 5 1/2 (almost 6) years ago and I remember feeling a loss of appetite or rather very full like I couldn't possibly eat. This is normal after surgery, especially laparascopic surgery where they use carbon dioxide to inflate the abdomen to see the organs with the cameras in your belly. Try to eat little bits more often so your stomach isn't empty but also so you don't feel overly full. Some post op donors complain of constipation or not having their bowels regular. This again is related to the surgery. Try yogurt, dried fruit, coffee or anything that makes you go. Some of the narcotic pain medicines are also constipating. Drinking plenty of water and walking will help.

The walking is great. Sounds like you are getting back on track. In terms of short of breath maybe when you're sitting your diaphragm is a little compressed. Try sitting straight up, which is hard because of the incision. Use pillows to prop yourself up if you need. If you continue to have shortness of breath  or any leg swelling, pain in your calf, redness or warmth, do call the transplant center to make sure you do not have a blood clot.

And finally the emotional part, also sounds very familiar. It took me quite a long time to not cry when talking about the donation. This is a very emotional experience. I know the doctors, nurses, and even the recipient make it seem to be a rather mundane transfer of parts as if you were ordering a part from the surgical supply department. But this kidney was attached to you and now it is not. There is a sense of loss. Sometimes during the testing phase we are so concentrated on helping the recipient we tend to put our own feelings aside in a box and now the lid on that box has been opened and all the emotions are pouring out. You may even be saying to yourself "what was I thinking.." I just had a surgery I didn't need, I gave away a perfectly healthy organ that balanced me out and now I feel a little out of whack". Best thing now is be kind to yourself, take care of your body, your mind and your soul. Use this time off, to read, take walks, eat healthy, even journal about your experience. It will be nice to look back next year at this time on your first kidneyversary and see how far you have come.

All the best and keep posting. Would love to hear how you are doing.


Sherri

[dave]

Hi Loustar,

Congratulations on the donation!  You have done a wonderful thing for your uncle.

I donated a kidney this past June and experienced a lot of the same feelings.  The description of your appetite sounds especially familiar.  I felt bloated and constipated at times, but then all of a sudden, I would be ravenous.  I completely agree with Sherri's advice of eating small portions regularly.  Fortunately, for me, the constipation went away after about a week; the bloating was gone after about two weeks.

I didn't get shortness of breath, but I did feel unusually tired for about a month.  I'm not a napper, but I started taking a siesta almost every day after the surgery.  After the first month, my energy level returned pretty much to normal.  Kudos on the walking.  Definitely keep that up!

As for the emotional part, it hit me a bit differently.  My Dad is doing well on his new kidney, but he complains a lot about the recovery, and he's had some minor complications.  He is 71, diabetic, and his blood sugar spikes all over the place.  Hopefully he will live longer on his new kidney, but who knows?  My creatinine is a bit higher than the docs expected, and while it doesn't seem serious, no one is sure what it means.  Occasionally, in my darker moments, I feel something like the regret that Sherri describes - like "What in the world have I done to myself?" or "Was it worth it?"  Fortunately, those moments are fleeting.  Most of the time I feel great that I helped my Dad avoid dialysis and, hopefully, extended his life.  It was a personal sacrifice that I am proud of.

A lot of people on this thread have reported a sense of abandonment by medical staff.  I think the feeling is normal - just keep in mind that these docs see dozens of patients a week.  Being married to a doc, I know their time is consumed by people who are sick _right now_.  One thing that helped me was reaching out to an old, close friend who I hadn't talked to in a while.

Best of luck,
Dave

[elephant]

Dear loustar,

What a wonderful thing you were able to do!  I hope your uncle is recovering well.

Your experience probably sounds familiar to a lot of people here, me included.  You've already gotten some great feedback. 

I finagled (begged) two parking passes at my last visit before surgery, one so my husband could pick me up and the other so I could make my follow-up visit.  I didn't know that those visits wouldn't be covered, but I was afraid that would happen.  And it did to you!  Don't take it personally, I think it's a small thing. 

I think the emotional sensitivity will pass.  Mine did after a couple of weeks.  I thought it was a side-effect from the large amount of anesthesia during surgery.  But if it gets worse and not better, don't be afraid to seek counseling! 

Love, elephant

[logansaunt]

Congrats on your recent donation!  You've done a wonderful thing.   

Just to hit on a few things you asked:

1.  I felt the same thing regarding hunger.  I had no appetite whatsoever and actually felt like I had to force myself to eat something to keep from getting sick.  I found that when the hunger pains hit (sudden and with no warning) it helped to eat peanut butter crackers and sip on Gatorade. 

2.  The shortness of breath will go away.  I could walk my legs off and feel so much better and more energized but after a short conversation with friends, I would be huffing and puffing.  Weird but true.  As you build your strength back up, you will see a huge difference.

3.  As for being emotional and crying over small things, look up my post when I was 3 weeks post-op.  I would cry over everything.  There didn't have to be a reason, I would just sob.  I honestly think it's a combination of what your body has been through combined with your sleep patterns being off combined with your hormones having to re-adjust.   At 3 weeks I really couldn't see myself ever feeling like "me" again.  Trust me, if you give it a few more weeks, you will feel wonderful! 

I have found this board to be outstanding and loaded with tons of helpful information but a word of caution, don't put yourself in a position to compare your recovery with everyone else's.  Even though I have asked for experiences of other donors, I found myself saying, "Well, it's now been 2 weeks and I'm not off the pain medicine like so and so is."  Or "It's now been 3 weeks and I'm not able to walk a complete mile yet".   I had a friend bring this to my attention one day by asking, "Hey, why are you letting everyone else's recovery experience affect YOURS?  Be happy for those that are preparing to run marathons but just sit back from the comfort of your sofa right now and realize that YOU need a little more recovery time."   Once I stopped comparing myself to everyone else, I was fine.  (That's not to discount the wealth of info you can receive here.  You will find tons of support on this website!)

Happy Healing!

[sherri]

logan'saunt,

I couldn't agree with you more about not comparing when it comes to recovery and I am going to extend that to the entire transplant process. I wish I would have allowed myself a little more flexibility when it came to decision making about donation. Over the years, I have learned that some donors are gung ho about donating, some more ambivalent. Whatever your circumstance try to not to compare and try not to be judgmental of others. Surrounding yourself with supporters is probably the most productive and positive way to embark on this journey from pre donation to post donation and beyond.

Enjoy your recovery time.

All the best,

Sherri

[Fr Pat]

Dear "loustar",
      Hi. Congratulations on your donation! Great!
      I would just like to add some thoughts to the excellent postings above, with regard to increased emotional sensitivity that some donors (myself included) experience after donation, especially in the first recovery period.
     Sometimes something can be both a problem and a blessing at the same time. Over the centuries some of the great Christian spiritual writers have referred to the "gift of tears", meaning that they considered it a special blessing to be able to be moved to tears, whether tears of sadness over the sins and sufferings of the world, or tears of joy over the beauty of life and love. When we have emotions too deep for words, only laughter or tears can express them.
    So perhaps (this is just my own theory) in addition to the after-effects of pain meds, surgical trauma, and the let-down of tension once the surgery is over, some donors may be moved by the extraordinary kind action they have just done. Perhaps the world would be a better place if more people were moved to tears of compassion over the evils around us, and to tears of joy over the beauty around us. Perhaps we tend to build up walls to protect ourselves against getting too emotional about things?
     This is not to say that being moved to tears over "nothing" may not be disturbing, embarrassing or even frightening. But perhaps when things settle down more we may find that being a bit more sensitive to the sadness and the beauty around us has been an unexpected "bonus" from organ donation?
     Anyway, those are my thoughts on the subject, for whatever they may be worth. The "roller coaster ride" of organ donation doesn't end when we come out of surgery, so they may be more thrills and chills in store. Enjoy the ride!
    best wishes,
            Fr. Pat

[logansaunt]

Fr. Pat,
What a wonderful way to explain your thoughts of the emotional aspect of organ donation!  In fact, your post moved me to tears once again. Rest assured though, they are happy tears.   

I feel so blessed.  Thank you.

[loustar]

Thanks everyone!

The emotional roller coaster has been just that.  I was never a crier until after the surgery, and it has taken some time to get used to.  I don't fight it, and I have to remind myself that sometimes we all need a good cry.

Coming up on the two week anniversary of the surgery, I find that there are some good days regarding energy and some bad days.  Today was a bad day, but I have learned to just take it easy and not push myself. 

These posts have been great!  Thanks so much for your support.  The posts regarding not comparing yourself to other people have been particularly important today.  I was doing triathlons on a regular basis prior to surgery, and today I started googling "post surgery triathlon training plans".  I found a lot of results of people who completed races 4-6 months post surgery or even 35 mile bike rides 3 weeks post surgery, and I was starting to feel a little depressed about my current state.  I had to remind myself that everyone is different, and it's not a race to see who can get back to race shape the fastest.  I just have to be patient with myself and listen to my body.

Thanks again!  The support here has been great.  The last two weeks have been such a crazy experience, and I have had trouble finding people to relate to what I'm going through...until I found this message board, of course!