Scheduled for 3-way transplant on 7/10

[dlady64]

We're working with the Alliance for Paired Donations.  My husband will donate his kidney to someone in Buffalo, NY and they have someone who will donate to a recipient in Florida and then they have a donor who will donate to me in Atlanta.

The logistics are frighteningly complicated.

I've been keeping myself from even believing it was actually going to happen, so as not to get excited and then disappointed--again.  However, we just got back from Buffalo yesterday and my husband passed his evaluation with flying colors.  The other two donors have also passed, we're just waiting on the final conference to get the green light.

My mom will be coming from Oklahoma to here (Atlanta) to be with me while I'm in the hospital and I hope to stay in a nearby "Transplant House" the week after surgery so we don't have to commute every other day for tests.

My question is this:

Lots of people are asking how they can help.  I've never done this so I don't know what to ask for.  I've been trying to read transplant stories, but haven't found much on the first few weeks after surgery (except that I should anticipate and warn everyone about the steroid affects).

Any words of wisdom?

[st789]

Drink plenty of fluid and enjoy every moment you have with the transplant.  Best of luck to you and all parties involved.

[vandie]

When you get home, take all of the help that is offered; shopping, cleaning, errands.   
Use your friends while you are healing.

Take loose clothing to the hospital, granny panties and shifts.  Thong undies and a catheter are not compatible. . . .
I learned the hard way.  You need to be comfortable.   

This is a wonderful opportunity.  Please keep us updated on your incredible journey.

[angela515]

Good luck to you and enjoy your transplant. 

Bring some things to do, laptop, books, crosswords... things to pass time, as it can be boring in the hospital. Not everyone is up to doing things afterwards, but I was.

[stauffenberg]

I only spent a few days in the hospital after my transplant, then took a 26-hour plane flight, and was back working full time two weeks later.  Not everyone is able to return to normal activities that quickly, however, and some transplant centers advise patients to take three months off before returning to work.

Warn friends and family that you will be a bit grouchy because of the prednisone levels, especially if you are on the usual induction regimen of 50 to 60 mg/day.  The only good thing is that this dosage is usually tapered off quickly, in most cases just in time before the patient murders someone.

The main irritation post-transplant is the medicalization of your life, since you will have to have lab work done perhaps as often as twice a week, in addition to frequent appointments for x-rays, ultrasound, and meetings with the nephrologists.  Fortunately this only lasts for about three months post-transplant, and then you are pestered progressively less often, until after the first year or so you hardly have to deal with the medical profession more than the average person.

[angela515]

Hmm... My body must like prednisone or something, because for me being on it for over 7+ years, doses so high I had to have Solumedrol (IV prednisone).. and I never once got grouchy... I just got AVN, deterioration of the bones, from lack of blood flow...and moon face, which because of the length I was on prednisone, I have permanently.   I would of rather dealt with mood swings, but never had too.

[monrein]

I'm keeping my fingers crossed for you and all the others involved in this delicate but exciting arrangement.  I look forward to hearing how it all goes.  I agree with what others have said, take any help that's offered, especially shopping, cleaning and other out of the house errands that might involve early unnecessary exposure to germs. 

[Sluff]

Hope all goes well! 

[pelagia]

Sounds like the planets are aligning    I'll be thinking positive thoughts for you!

As far as what to expect - My husband had double nephrectomiestwo months before his transplant and in his words the transplant was "a breeze" compared to the nephrectomies.  The incision was far less painful.  In fact, he only ever had localized pain meds after the transplant.

He was incredibly hungry and as soon as they gave him the go ahead for food, the SICU nurse told me I could bring something in for him.  He wanted Vietnamese tofu and rice noodles from one of our favorite restaurants.  Rarely have I seen anyone enjoy a meal that much.

He read a ton of books while he was there (6 days altogether) and when he got home.  Luckily friends gave us piles of books so we didn't have to buy them or check them out of library.

Hopefully you have family and friends who can give both you and your husband support and help during this experience.  My husband's donor (my brother-in-law) healed quickly, but still they have to take it easy for awhile. 

And when you get home, if your husband is your primary caregiver, he will likely need help.  Caregiving can be tiring even if you haven't had surgery.  I think my major meltdown from the exhaustion of the last few months was about 3 weeks post-transplant.

Here are a few other things I wished I had done before we left for the hospital:

Clean out the fridge, or get someone to do it for you.  Get rid of anything that is older or in any way questionable.  You won't want to use it after the transplant.  Wash the interior and leave it bright and shiny.  That way when you come home you can put fresh food in and not worry about moldy things lurking nearby.  Who is going to go to the grocery store for you when you first get home?

Spray disinfectant, use bleach wipes, etc. on doorknobs, appliance handles, etc.  Or maybe you are a fabulous housekeeper and this is not necessary.  I have a teenager, 1 dog and 3 cats, so no one would never eat off the floors in my house.  But I found that I starting feeling better after all surfaces had been hit once with something antiseptic.

Think now about what else you would like to have when you get home.  I think we mostly focus on what is needed for the hospital.  But, you have some time to plan ahead.

 

[Jill D.]

Wow, this is so exciting - all the best to you and the other recipients and donors!
Everyone has given you good advice. Cleanliness and eliminating exposure to germs is very important right after transplant since that is when you are still on high doses of immunosuppresants. Since both you and your husband will be recovering you might have someone come over and do some housework - especially vacuuming and laundry. Having someone help with shopping is a good idea too. For me personally I preferred making my own food as opposed to having food brought in mainly because I was very particular about food preparation. I avoided crowds and situations where people were sitting close together like movie theaters and sporting events - even church (my church is a very "huggy" church, which normally is very nice, but I stayed away for about 2 months)
I was a bit moody for the first couple of months, but a wasn't a raging bitch  , and things settled down as the prednisone dose tapered down.
All the best to you and your husband!!!!!

[willieandwinnie]

dlady64. You'll be in my thoughts and prayers. This is soooooooooooo exciting.  Let anyone help that offers. Taking out the trash, walking the dog, changing kitty litter, going to the post office, getting prescriptions filled, going to the bank, grocery's are a biggie, driving you and your husband to appointments, laundry, taking care of your yard, changing your bed, or bringing you a meal. Lord, I'm getting tired already. Take a pillow, robe and some socks to the hospital with you. I bleached just about my whole house when Len has his transplant, I carried wipes and sanitizer in my purse and car, I might of gone overboard some. Please keep us updated. 

[Lori1851]

Wonderful news hon! I will keep all of you in my prayers!!!!! Good luck!
Lori/Indiana

[keith]

  i wish u de best of luck

[Sluff]

Please keep us posted. Everyone wants to hear all about this.

[Bajanne]

This is excellent news!!!   You will all be in my caring thoughts and prayers.  Your IHD family is with you all the way.  Of course, you will continue to keep up posted.  Great news!!!

[okarol]

Wow - it's great to hear this - keep the faith and I am thinking really POSITIVE thoughts!!!