My husband is going to be a donor - advice please

[Vickykids]

Hi
My husband is donating a kidney in October.
Everyone we speak to just wants to tell us about the wonderful thing he is doing, not about possible complications, recovery etc. When I bring the subjects up the professionals just seem to answer briefly then jump back to the positives.

Has anyone any advice on what to expect when it comes to recovery time, getting back to a normal life, emotional well being.... We both work full time and have 5 children. I really need to know what to expect so I can prepare.

Thank you 

[Clark]

Best wishes to you all! We have the discussion forums here, and you might find these pages useful:

About Living Kidney Donation
https://livingdonorsonline.org/kidney/kidney.htm

Afterward...
https://livingdonorsonline.org/kidney/kidney6.htm

The Living Donor Experience
https://livingdonorsonline.org/experiences/experiences.htm

Living Donor Buddies™
https://livingdonorsonline.org/buddies/buddies.htm

[KD]

Hi Vickykids,  First of all, let me say that your husband is doing a wonderful thing, but sometimes you need to hear more than that.  As a recent kidney donor myself, I hope my experience will help during your husband's recovery. 

My surgery went like clockwork and I felt the bloating, gas and pain as expected, but the hospital provided meds for all of this.  I was surprised that the upper body gas pain ran across both shoulders, but I was told that was normal post-surgery and it did pass in a few days.  Walking and burping helped. The worst part was waiting for that first bowel movement, but when it finally came I felt so much better.  I walked as much as I could after surgery to pass gas,  but made sure to stop if I felt pain.  After surgery, pack very loose pants for your husband to go home in.  He will be bloated and have incisions that may be sensitive, so the less constricting the better.  And bring slip on shoes or slippers as he will not want to bend over to put them on. Your husband might want to consider a nightshirt for sleeping at home.  I regret that I didn't pack a loose dress instead of jeans. 

At home there will still be bloating, gas and pain as the incisions heal, but it gets better every day, AS LONG AS HE DOESN"T OVERDO IT.  I emphasize this because 2 weeks after surgery I bent down to pull some stuff from under the bed which caused one of my incisions to open and become infected which sent me back to bed for a week.  So tell hubby to stick to walking and avoid strenuous stuff.  Taking safe walks helps gas pass and keeps the organs fit.  Prepare the family for the passing of gas, it's a natural way to heal and is a needed relieving thing to do.

It took me a while to get my appetite back (gas again and the remnants of IV medicine taste) but I tried to eat solids as much as possible to keep the bowels moving.  Also, the pain meds (percocet in my case) can cause constipation so I made sure to take the stool softener that the hospital gave me.  I still get tired during the day, which is expected, so I take a nap mid afternoon.  I was on pain meds for 2 weeks after surgery but now I can get by with tylenol or nothing.

I am now in week 4 post surgery and still have discomfort around the abdomen and find it "crampy" to stretch, push, pull and bend as much as I used to before surgery.  Common belief is that after 3 weeks you can return to normal activities but I think that may be overly optimistic.  I was able to walk 4 miles every morning before surgery, yet I am in no shape to do that yet, so "normal activity" is a relative term.  A good rule of thumb is "If it hurts, don't do it".  Fortunately for me, I am retired so I have no need to return to work, and I hope your husband can have the time he needs.  His doctor would best advise him on returning to work.

My advice to you as a caretaker is to give yourself a break and prepare meals ahead of time, make the home easy to navigate for hubby.  He should be able to take care of his own hygiene and do small tasks himself, like make coffee or sandwiches as long as everything is in reach.  I found that I couldn't lift a gallon of milk so my husband bought milk and other things in small quantities that I could handle.  We also put my favorite foods on the top shelf of the fridge so I could reach them without bending. Likewise we put bread, cereal, snacks on the counter so that I would not have to reach for them. You may also want to  get extra pillows for the bed (sleeping with raised shoulders helps with gas pain).  Forget about   housekeping, and be patient with the patient.   If you can, get someone to take the kids for a while so you can have some time with hubby to relax or maybe for you to take a breather.  And above all, ask for and accept help.  Friends and family brought food for me and my husband and it was a great help to us. 

I never experienced depression but I do get cranky because I am frustrated that I cannot yet do all the things I want to.  I know I will eventually.  But really, the best feeling in the world and the felling that makes it all worthwhile, is that I have given my brother the gift of life.  I have no regrets.  I wish you and husband the best of luck.  If I can guve you any more info, please let me know.

Cheers,
Krysia

[Fr Pat]

     Just to add that a while back a doctor on this site explained that the shoulder pain that sometimes happens after laparoscopic kidney donation surgery is not actually "in" the shoulders. He explained that the CO2 gas that they use to inflate the abdominal cavity can react with the body fluids to produce a mild carbolic acid. It is mild, but can be strong enough to irritate some nerves, including those that give the impression that there is pain in the shoulder(s). Should clear up as the body cleanses itself.
   best wishes,
       Fr. Pat

[Vickykids]

Thanks so much for the reply.

It's good to hear from someone who has been through it. When I only hear the positives from the professionals I get even more nervous than I already am!!!! My husband is fine and calm, leaving the worrying to me  I prefer to know all sides, definitely makes it easier to prepare.

Vicky

[Fr Pat]

My donation and recovery experience was excellent. But if you want to read in much detail about all that COULD go wrong go to www.livingdonor101.com.
   best wishes,
    Fr. Pat

[PastorJeff]

You are married to a great guy.  Of course, you already know that.  I donated just about two years ago.  My wife is an RN so the risks were real to her whereas just on paper to me.  I had a good experience.  The only thing I would do differently if I had it all to do over is take my labs to an independent nephrologist for his/her opinion before donation.  After my donation, my nephrologist asked me if a test was run to determine which was the better kidney.  It appears i gave that one away so my recipient has great labs but mine not so good.  He thinks I'll be fine but need to be extra careful to take care of what I have left.   But I am 62.  If I was younger, it would be more of a concern. 

[Daleguy01]

Good luck.  I can give you some insight from my perspective, as from what I hear, I fit into the 1% club!  That being, I had three arteries going to my donated kidney.  I donated to my sister…she is actually doing perfect.  Surgeon stated during her last checkup, it's as if she never had any issues and this is like the kidney she was born with…so that's great news.

My recovery was a little challenging, no pain though.  Just weak, as I'm sure many donors can relate too.  I think the Transplant occurred on a Monday (now I don't remember!), but was in the hospital for 5 days, probably longer than most.  Left on a Saturday and went home, again…no pain just tired.  I do remember having a really hard time having a bowel movement the first time, this kept me up for several nights in a row with no sleep.  Probably should have taken the pain med now that I think about it.  Anyway, then started having some breathing problems (also should note, my right lung collapsed during surgery).  Again, most likely my fault as I did not adhere strictly to the breathing drills I was instructed to do with the tube.  Started having some breathing problems and got readmitted for one night..it got better so off to home again.  But, not sure if this was a psychological thing as I was really focused on my breathing, or it was actually a physiological thing.

Other things that I remember, finding it really weird that I could only walk a few steps without getting tired!  Not being able to eat, or being hungry to  want to eat.  At a little over two weeks I was driving my car, and at about three to four weeks had my check up with my PCP (I lived in another state than the Transplant Center), and was ok'd to return to work.  Not sure for how long, but I was very limited in what I could lift for quite some time.  I think like 10 lbs was the max.  I'm thinking that at about 2 months, I was feeling nearly 100%. 

At about the 1 year anniversary which was this past May, I started having problems urinating.  Found out I had a urethra stricture…I'm guessing it was from the catheter during the transplant.  Had another surgery to correct that.  Then, unfortunately, about 2 weeks after that surgery started having bouts of shortness of breathe!  Guess it's one thing after another.

But, all in all, I would say no pain, recovery was pretty quick even with my complications.  If I could do it again, I would not think twice!  I would however, stick to doing the breathing drills! 

Happy to answer any specific questions you might have.

Re,
C

[Michelle_PositiveMojo]

I love proactive wife's!  I'm one of those as well.  I cut and pasted this from another post as it seemed relevant to your ?s as well.  Truly, these are exciting (& nerve-wracking) times for your family (& your recipients)!! I donated my kidney on Aug. 6!!!!  I'm a 38 year old, full-time working mom of two daughters and EXCITED to share the surgery/recovery was incredibly easier than described/imagined, with the first 12 hours post surgery being the most uncomfortable (which was modified/controlled with increase in pain meds).  My hospital stay was Wed-Sat, with ability to go home on Fri.  I chose to stay till Sat. to ensure my pain meds were the right mix (I had allergic reaction from the narcotics (common) which I anticipated due to a previous experience).  I strongly suggest getting in and out of bed on the opposite side of your incision, and rolling to your side before sitting up.  Little tricks I learned (& in one instance the hard way...first time out of bed was a doozy!!!!). Post surgery, drink lots of water, take the softeners and Miralax!!!!  Coughing can be a bit painful, so be prepared to hold your belly.  I found comfort in a blanket/pillow to rest on my belly...the pressure provided comfort (& lots of pillows, especially when at home).  I had to sleep on my back for the first week post surgery.  Can't tell you how awesome it felt to finally lay on my side (the left as they took my right kidney)!!!  Three weeks+ post surgery and I'm still sore/tender with movement restrictions, but overall feel good and ALL WORTH IT!!!!  My recipient feels like a million bucks and has accepted my kidney with ease (we are a 50% match)!!!!  I'll be thinking of you and your husband in October, and sending POSITIVE MOJO...it worked for my kidney team (here in WI)!!!!!!  P.S. I used LotsaHelpingHands.com to organize meal donations.  Nice way to communicate with loved ones who offered help.  No need for multiple casseroles in one day.  Ha!!!!