I got the call and a new kidney!!!

[andykinney]

Sorry for the length of this, but it's a month's worth of information

We got the call at 3:50 a.m. on May 7th to come to Yale New Haven Hospital, that there was a kidney "offer" for me.  This was the first time that I had an offer; prior to this, I had received calls that I was the first or second backup.  Yale is about 35 miles from us, which is no distance at all in the middle of the night!

Jim (my husband) and I got up, prayed, showered and got dressed.  At that time, I had to call to awaken my neighbor and good friend - the Baxter delivery was scheduled for that morning and, if things did not work out, I was going to need my supplies!  She came over and we headed out.  When we got to Yale, they had a room ready for me (looks like the real deal!).  They started to run additional tests and people began to come into the room.  My pre-transplant coordinator came in to give me a hug and tell me how wonderful it was and that she had told the nurses that I was going to make a great patient!  That was a fun conclusion since she and I had never met, only corresponded via fax and over the phone, but she told me that I had always complied with the necessary testing and she'd never need to chase me down to get test information. The social worked came in and gave me a big hug as well; turned out to be great that she remembered me 'cause we needed her a lot during the 12 days I was in the hospital.

The wheeled me into the OR about 3:45 that afternoon; I got back into my room about 11:30.  I woke up on on Friday in the most euphoric frame of mind ever!  I felt wonderful!  I started to call people and tell them the great news, laughed and giggled my way through Friday; I think I felt better than Jim did since I had had lots of sleep and he had been awake for hours and then back at the hospital first thing in the morning. The kidney was totally on-board and working great! 

On Saturday, another IV was started; it was my second dose of thymoglobulin (the first had been given to me during the surgery).  My reaction was extreme - my temperature rose to 105 degrees, I became incoherent, unable to identify myself or my husband, didn't know where I was or why, fought with those who were trying to help me.  I now know that this is one of the reactions described in the literature, but it was the first time that most of the nurses had seen it.  I was finally moved to the "step-down" unit (one step down from ICU) because they felt I needed closer supervision than they could give me on the transplant floor.  My kidney stopped working and they still needed to give me another dose of thymoglobulin.  Jim stayed overnight in the hospital with me to ensure that my every symptom would get attention.  Of course, since they slowed the delivery of the drug and gave me Tylenol and Benadryl before starting, I had no problems.

But my kidney had stopped working and after a few days, my transplant surgeon decided to do a biopsy to be sure there had not been any damage to the kidney.  The biopsy showed that there was nothing wrong, that the kidney just needed to "wake up".

I was released on Monday the 18th, back to clinic on Tuesday the 19th and have been going there every Tuesday and Friday since.  Keep your fingers (and toes and eyes!) crossed for me - everything seems to be going well.  I'm feeling stronger every day, but they can't seem to get my prograf stable - I'm now up to 7mg in the am and 7mg in the pm, which seems like overkill, but I can't find grounds to fight it.

I wouldn't have been able to get through the 2 1/2 years of dialysis, the transplant, the thymo reaction (which every doc in clinic has heard about and says "oh, you're the one!"), or this aftermath of slow steps and twice-weekly clinic visits without Jim, who has been my rock and became my boulder when my PKD was diagnosed in my 50's and I rapidly moved from CKD to ESRD.

[okarol]

Thank you for all the details - I love transplant stories!

What blood type are you? How long were you on dialysis? What did you ask about the donor?

         Congratulations - I hope it last you for a long long time!!

[Sluff]

Awesome news!  I hope this kidney lasts a lifetime, thanks for sharing your story. 

[willowtreewren]

Yea, yea, yea!

Always brings tears to my eyes.

[Rerun]

   Here is to many many years with your new kidney.   

Prayers going out to the family of the donor.   

[MandaMe1986]

  Lets keep that kidney working for a really long time.  My fingers, legs, arms, toes, eyes and everything else are crossed for ya.  Good luck!

[Hanify]

Thinking of you and your new kiddley.

[Romona]

The yo-yo of Prograf seems to be expected until a nice trough level is established! I am so happy for you and your family!

[donnia]

Fantastic!!!

So they kidney has awaken right?  So, how are ur labs looking?

Mucho prayers for you to have a long lasting relationship with ur new kidney!!!!!!

[jbeany]

 

Go kidney, go!

[Sunny]

I hope things are going well for you now and that your kidney is wide awake at this point. Hope it lasts a long time.

[YLGuy]

Congratulations!  Please keep us posted. 

I see that you are in Norwalk.  I was born at Norwalk Hospital and grew up in Weston.  Small world.

[andykinney]

What blood type are you? How long were you on dialysis? What did you ask about the donor?
 

My blood type is A.  I was on peritoneal dialysis for 2 years and 7 months.  I was told that I had "a strong,sturdy kidney; my husband was told that it came from a young person.  No one would answer any of our other questions!

So they kidney has awaken right?  So, how are ur labs looking?

The kidney is (mostly) awake.  My transplant coordinator has expressed concern that my creatinine seems to be stuck st 3.5 and a decision is to be made this week regarding a needle biopsy to check things out; I almost want them to leave me alone 'cause I don't want Kerry Kidney (since I don't know if it came from a man or a woman I'm spelling it with a "K") to get upset with all the prodding and poking!

[Wenchie58]

   I named mine Kalvin...then later found out he came from a she...so now she is named...well...Kalvin!  Kalvin and I have had three biopsies in 7 months, I was assured my my transplant surgeon and neph that getting some tissue was the only SURE way to know what was going on, my creatinine went from 1.3 at best to 3.3 at worst post transplant.  The biopsies showed rejection that wouldn't have manifested any other way until it was possibly too late to save poor lil Kalvin.  I still have issues, but creat is down to 2.1 and I am feeling great. Finally after all this time, numbers are going down.....ever so slowly.