Successful Transplant! - One year later!

[pelagia]

It's been a little over two weeks since my husband received his new kidney from our brother-in-law (my sister's husband).  He is healing very well and the kidney is doing a fantastic job  .  My brother-in-law is healing too - said he was 90% back just a few days after the surgery - but now he is home and he is still feeling a little tired and maybe not as strong as he was before the surgery (he's a big strong guy), which probably isn't surprising to those who have been through this.  It has been a bit of a whirlwind coming home and getting everything settled (and disinfected  ) and I have not had a chance to catch up with IHD until this morning.  As always, I started reading to catch up with what is going on with all of you and now the time has flown by (I need to get ready for work as I have a meeting this morning).  I hope to have more time to post some details this weekend. 

Linda

[bolta72]

Great news, keep us up to date.

[willieandwinnie]

  Linda. So glad things are going well. Please keep us posted when you can. 

[paris]

We are so happy for all of you.  When you get a moment, we will enjoy hearing the whole transplant experience.  It is always good to read happy ending stories

[Sluff]

and I have not had a chance to catch up with IHD until this morning. 
Linda

I guess we can forgive you just this once. J/K  Congratulations to your Husband.

[rose1999]

  so happy for you all.

[Romona]

Yahoo for hubby! Glad it went well. Can't wait to hear more.

[monrein]

I got all excited just reading the subject line of your post.  I'm so glad things have gone well and you're home.

[paddbear0000]

Yay!!! I'm so happy for your husband and yourself (of course, you benefit too!) 

[pelagia]

It's been a little over two weeks since my husband received his new kidney from our brother-in-law (my sister's husband).  He is healing very well and the kidney is doing a fantastic job  .  My brother-in-law is healing too - said he was 90% back just a few days after the surgery - but now he is home and he is still feeling a little tired and maybe not as strong as he was before the surgery (he's a big strong guy), which probably isn't surprising to those who have been through this.  It has been a bit of a whirlwind coming home and getting everything settled (and disinfected  ) and I have not had a chance to catch up with IHD until this morning.  As always, I started reading to catch up with what is going on with all of you and now the time has flown by (I need to get ready for work as I have a meeting this morning).  I hope to have more time to post some details this weekend. 

Linda

Well, I'm finally back with a little more of an update...

We first learned that my husband has PKD about 25 years ago, when we were in our 20s.  His creatinine increased steadily over the years as his kidneys grew larger with cysts.  In late 2003 the doctors told him that he would probably need to go on dialysis or have a transplant within a year or two, but in the end, he managed to make it until March 2008.  His kidneys were so large that he had to have a double nephrectomy in order to make room for a transplant.  He lost 30 lbs following that surgery, reflecting the combined weight of the kidneys and weight loss in the hospital from not eating.  He was still in quite a bit of pain and barely eating when I brought him home (incision was vertical through abdominals) and was also dealing with dialysis.  The dialysis in particular was very difficult for him in the beginning.  He would come home and sleep for hours after each session.  At first he had a terrible rash all over (probably a drug reaction) and he actually lost an upper layer of skin from his entire body within a few weeks of the surgery.  I discovered IHD late one night while I was searching for anything that would help me to understand what he was going through mentally and physically.  The site (and all of you) have been a great resource, full of knowledge, experience, caring and humor.

So, as I mentioned in my earlier note, he had his transplant on May 14th, which was about seven weeks after the nephrectomies.  He's doing really, really well.  It's a complete contrast to the first surgery.  The transplant team told us it would be this way - that he would start feeling well as soon as the kidney started working.  We are so thankful for the incredible gift of this healthy kidney.  It started working right away and by the time Stephen left the hospital his creatinine was 0.73 (day 6).   Last week it was 0.69! .  His amazing, courageous, generous donor - my brother-in-law Michael - is healing well, too, although he is still feeling a little tired.  Michael has a wonderful sense of humor and he kept his nurses thoroughly entertained - but not until after he got through day 1 post-surgery, when he says he felt like "Alpo".

Michael and my sister live in NY, so we are having to keep in touch by phone.  Luckily, Michael is going to be able to drive down (with my Mom) for my son's high school graduation in a couple of weeks.  We are all looking forward to spending some time together.

As things settle down we are focusing on trying to get back to some sort of routine around the house.  I resurrected the "bird clock" from the garage to help Stephen remember what time it is and when to take his pills.  Have you ever seen (heard) one of those?  A different bird call sounds on every hour.  It used to drive me crazy, which is why it was in the garage!!!  Now I am enjoying getting those little reminders.  I found a website for watches that have multiple alarms for the folks who need to remember to take pills multiple times each day, but I haven't found a watch that has bird calls! 

P.S. My husband is a guitar player, so I have to use this to say goodnight...

[okarol]

I added Stephen to the list - http://ihatedialysis.com/forum/index.php?topic=4927.0 - thank you for the update - hoping for a speedy recovery! 

[pelagia]

I hadn't seen that list yet.  Thank you for adding Stephen.

[kidney4traci]

How awesome is your family!  Be well, and heal well.  Thanks for sharing your wonderful news.  Now go enjoy your "new" husband!

[Lori1851]

  Linda,
Awesome news! Glad hubby did good!!! And your brother-in-law!!!!!

  Lori/Indiana

[kimcanada]

Oh Linda, how exciting, congrats to you and Stephen

[monrein]

Thanks for all the update details Linda.  What a wonderful gift and I'm so glad that both Stephen and Michael are both doing well.  My sister-in-law is one of my potential donors and we do the first bit of blood testing tomorrow morning.  I hope things go as well for me as it has for Stephen and I wish you all continued kidney success.

[pelagia]

Thanks for all the update details Linda.  What a wonderful gift and I'm so glad that both Stephen and Michael are both doing well.  My sister-in-law is one of my potential donors and we do the first bit of blood testing tomorrow morning.  I hope things go as well for me as it has for Stephen and I wish you all continued kidney success.

You have a wonderful positive attitude Monrein.  Every day we learn how important that is for well-being, so keep it up !  I will be keeping you in my thoughts.

[Psim]

What a wonderful story. I'm so glad your husband and brother in law are both dong so well!

[pelagia]

Week 3 - yahoo   Today I take my husband to the hospital for his last zenapax transfusion.

[monrein]

 

[okarol]

Week 3 - yahoo   Today I take my husband to the hospital for his last zenapax transfusion.

Hi Linda,
I had to look up Zenapax because I wasn't sure what it was. Does he do this just once? I don't know anyone else that received this transfusion after transplant, is it routine at your center?
I hope Stephen is doing great! Best wishes! 

[pelagia]

Everything went well with the infusion today.  It was done at the hospital, which is a 3+ hour round trip, but we're home now.  I never thought to ask about the Zenapax and I don't know how commonly they use it.  It's on the clinic's general list of antirejection meds that was included in Stephen's notebook.  He also takes Prograf, Cellcept and prednisone..  He had three infusions of zenapax, one on the day he was transplanted, one on day 7 (actually was 6 since they let him out early) and the last today, at three weeks. 

I always worry a bit about using wikipedia as a source of information, but find it always so readable.  The entry there states the following:

"Daclizumab (Zenapax) is a therapeutic humanized monoclonal antibody to the alpha subunit of the IL-2 receptor of T cells. It is used to prevent rejection in organ transplantation, especially in kidney transplants."

"Daclizumab usage may also be indicated in place of a calcineurin-inhibitor (ciclosporin or tacrolimus) during the early phase after kidney transplantation, when the kidney is recovering and vulnerable to calcineurin-inhibitor toxicity. This has been shown to be beneficial in non-heart beating donor kidney transplantation."

I will try to learn more when I have an opportunity to talk to the folks at the clinic.

[MyRenalRomance]

    Congratulations on your husband's successful transplant! 

[pelagia]

Today is the one month anniversary of my husband's kidney transplant .  It's a great joy to see him puttering around the house and generally feeling good.  He plays acoustic guitar for a living and is starting to book concert tours again.  Looks like he'll be traveling to the midwest at least twice in September.  This would be a lot more complicated if he had to be on dialysis, so we are incredibly grateful for the gift of the kidney.  Any acoustic guitar fans out there?

[donnia]

I loved reading your posts!!!  Congrats to you and your husband on such a successfull transplant!!!!!!