Transplant According to Cupcake

[Cupcake]

I received a living donor kidney on October 23rd at Barnes-Jewish in St. Louis. Things have been going really well but I thought some discussion of the actual events as they played out might be of interest to anyone getting close to transplant.

As I have 2 inheritable blood clotting disorders in addition to CKD, my siblings were not potential donors. Fortunately a lovely lady who happens to be my brother's wife offered up her kidney.Angels do exist!

I have been listed at Northwestern in Chicago and Barnes-Jewish. I was getting close to cadaver in St. Louis as their list was shorter for my blood type (A-).

During her transplant eval they found a small 'incidentaloma" near her left kidney that looked benign but the transplant couldn't occur until they had removed it and sent it for a quick frozen section. Talk about stress! I'm a planner, and my home is about 2.5 hrs away from St Louis. I leased a corporate apartment across the street from the hospital, and if I had not gotten the transplant, that would have been an expensive mistake. But I was sure I would be more worried about some bad news for my donor than my disappointment over not getting the kidney. I arrived 3 days before surgery to stock up on supplies/get to know the neighborhood. There is a Panera in my building and Whole Foods is 2 blocks so great location for when I have a 10 lb weight restriction.

We were both to arrive at the hospital at 0530am-glad for that condo across the street! Her procedure started at 745, and the medical students and anesthesiologists kept us updated on how her procedure was going/when the little goomba went to pathology. When they came in as a group at 1145 with good news that it was only a benign collection of blood vessels, they whisked me away to the OR next to hers and I was out in a flash. They did let me see 'my' kidney-it was lying in a small stainless steel basin. Kinda cool.

My procedure lasted until 345-first thing I remember was asking what time it was. I had 2 IV's, a drain in my right side, a Foley catheter, and an arterial line in my left wrist. I don't think everyone gets that art line-they were monitoring my heart/pressure since I have coronary disease.

Tomorrow I'll continue the story of Cupcake's new kidney so stay tuned.

[kristina]

Congratulations Cupcake  !!!! 
And .... I wish you all the best and good luck for the future !!!!
Well done !!! And ... I shall stay tuned and I hope it continues well for you !!!
I send you my heartfelt best wishes and good luck from Kristina.

[iolaire]

Congratulations I hope all goes well for you.

[SooMK]

So wonderful! Congrats!

[iolaire]

I received a living donor kidney on October 23rd at Barnes-Jewish in St. Louis. Things have been going really well but I thought some discussion of the actual events as they played out might be of interest to anyone getting close to transplant.

Please do continue to share you "good" transplant story.  I feel its helpful for people to hear the good as well as the bad.  Its much more common for people to post when asking for help or advice, so its great to have good stories to counteract the perception that things go bad.

[cassandra]

      Congratulations Cupcake!!


Get up and running soon to the both of you!!


Love, luck and strength, Cas

[justagirl2325]

Whoo hoo, congratulations and hope your recovery and your donors goes smoothly.

[Cupcake]

The experience continues! The first day of/after surgery I was happy to be flat on my back with all the tubes running here and there. I was in a semi-ICU setting with vitals every hour including urine output thru the foley. And was I making urine! that little bean started peeing like Secretariat right off the bat. Had a lot of work to do as I think they must have given me a lot of fluids in the OR. I wanted up (because of my blood clotting disorders) but those ICU nurses were on me to lay quietly and I was happy to do so, only had pain meds once. Blood pressure machine squeezing every 5 minutes, both legs in compression wraps that squeezed alternatingly all the time. But I slept and remember it only vaguely.

The next morning they pulled the art line and sent me to the regular transplant floor, three doors down from my donor. I was up and down by myself, dragging my lovely foley. My donor had much more pain than I did-the docs said all the steroids I was given blunted my pain. I rolled down the hall to check on her. Talk about feeling guilty! My brother was beside himself to help her and I was a little ashamed I felt so good.

I stayed two more days for a total of three days. They made me keep the blasted foley the whole time and I went home with a drain. When they pulled that foley I peed on my own.

I had a parade of doctors/pharmacists before discharge. Stressing 'take your meds, show up for labs, call for any problems" I was able to meet my new post transplant coordinator who is an RN and a lovely lady. The local Schnucks specialty pharmacy brought my discharge meds up to the room along with a 'goodie bag' of things I already had-stocking stuffers! a scale, bp machine, thermometer, pill sorter, etc. They will call me in 3 weeks to talk about mailing refills-how great is that?? A months worth of those expensive transplant meds and other stuff only cost me $82.

The inpatient transplant coordinator was a young man in his mid 30's who brought up the subject of safe sex. Says I can expect to have an enhanced sex drive since I'll be feeling better. Who knew I was going to become a sex maniac at age 61? So every day when he asked if I had any questions, I asked him how soon I was turning into a fiend. Poor boy!

My donor went home same day as me and stayed locally here in my rental condo as they had a 2 hr drive home. She overall has had much more pain and some muscle spasms in her side. She was slow to pee after they removed her foley, had more trouble moving her bowels, all that lovely stuff. My poor Angel.

[kristina]

Hello Cupcake,
I am so glad for you ! Your set-up with the medics and especially the pharmacist right now sounds very cosy and I do hope that it continues that way!
I send you my best recovery wishes and take good care,
All the best from Kristina.

[gilders]

Thanks for taking the time to write about your transplant experience Cupcake. I'm due in about 2 months (dad donating) and very nervous. Hope my dad isn't going to be in too much pain after the operation.

[MooseMom]

Cupcake, congratulations on your new kidney!!!  I don't know how I missed this thread!!   

I hope all is still going well with you and that you have a fabulous Christmas with your newly restored kidney function!

[Simon Dog]

I stayed two more days for a total of three days. They made me keep the blasted foley the whole time and I went home with a drain. When they pulled that foley I peed on my own.

A neph told me the Foley had to stay in 72 hours since internal bladder pressure could interfere with the healing of the suturing of the ureter to the bladder if removed earlier.

I think I got shorted - I got all the stuff you did but no scale.  No problem, I have a couple left over from D.

[Cupcake]

Thanks Moose Mom. I am doing very well-creatinine is 1.09! I have had a little hiccup-wound is infected with mycobacterium fortuitum-a slow growing bacteria that I probably got from tap water. Takes forever to heal-I'm on 2 antibiotics for at least 4 months. I had to go back in hospital overnight this week for wound debridement/wound vac placement. So now I am connected to a small machine hanging around my neck for another couple of months but its not too bad. I feel great just wishing I could get back to swimming.

[MooseMom]

Thanks Moose Mom. I am doing very well-creatinine is 1.09! I have had a little hiccup-wound is infected with mycobacterium fortuitum-a slow growing bacteria that I probably got from tap water. Takes forever to heal-I'm on 2 antibiotics for at least 4 months. I had to go back in hospital overnight this week for wound debridement/wound vac placement. So now I am connected to a small machine hanging around my neck for another couple of months but its not too bad. I feel great just wishing I could get back to swimming.

That doesn't sound like much fun at all!  But in the grand scheme of things, a couple of months is doable considering the payoff!  The main thing is that you FEEL good, and for that I am very very happy for you!!