After five years of waiting

[charee]

fantastic news
 

[Ang]

congratulations

long  may  it  last,have  a  few   for  me.

[cambonesegirl]

I think we need a thread with pictures of transplant patients holding up their bags of pee!    Thanks Tamara for that idea! 

LOL..... I was told I might have to have the catheter in still when I go home since I haven't produced urine in 8 years, but they took it out the day before.

  EVERYONE! I'm still going about every hour when I'm awake and every two throughout the night, but no complaints here!

[okarol]

Great - that's a fierce little kidney! 

[glitter]

I am glad your wait is over!!!

[kelliOR]

What terrific news to read this morning    !

Sending you wishes for continued success,
and
Sending up prayers for your donor's family...

love,
kelli

[cambonesegirl]

Yes, pee is good!!!  Congratualtions!  I loved hearing your story, I too have a high PRA and it gives me hope that there will be a day I get that call too!! Yes, I am excited for you and keep us posted on your continued good health.  And Happy Peeing!!!!

Yeah I got my first and only blood transfusion in January of 2005, I was refusing for a long, long time because I knew it would affect my being on the wait list. Doctors told me I was at risk of going into cardiac arrest. Normal hematocrit is suppose to be above 30%, my was 15 and ever since I got the transfusion my P.R.A. has been in the mid 90 % so the call was so unexpected. Goodluck to you, it can happen, hope you get that call soon!

[Jill D.]

Just read this thread...soooo happy for you!! 

[Lori1851]

Praise the Lord!!!! So happy for you hon!!!!

Lori/Indiana

[thegrammalady]

Yes! YEs! YES!     

[monrein]

  Just came across this thread. For me there is no bigger thrill I can think of than that first post-transplant pee.  Yay you.

[cambonesegirl]

Here's a little update on how I'm doing. It's almost been three months since my transplant and I've been feeling and doing fine. I have been back in the hospital a couple times since my transplant. The first time was because I was having shortness of breath and chest pressure. Everything was fine and I was discharged a couple days later. The second time was because my creatinine kept creeping up. It was at 2.0 when I was admitted to the hospital. They thought I was going into acute rejection since I was highly sensitized when I received my transplant. I had a biopsy done and it showed no signs of rejection, I was just dehydrated. Right now my white blood count is low, it's at 0.8. I know that's not good and I'm very prone to infections. Anybody know why the white blood cells might drop?

[Brightsky69]

You got the transplant.....That is totally awesome!!!      I hope it stays working perfectly.

[pelagia]

How much water are you drinking?  This is the question I am asking my husband 10 times a day (transplant May 14th) and now I am asking you.  Fill the glass and drink it.  Fill the glass again and drink it.  Fill the glass again... you get the idea.  You can do it!

Are you on Valcyte?  Here's a link that might be helpful:

http://doublecheckmd.com/EffectsDetail.do?dname=Valcyte&sid=41385&eid=2237

[cambonesegirl]

How much water are you drinking? 

Are you on Valcyte? 

I'm drinking about 70 to 80 ounces of fluids a day, I actually have to force it down. The doctor told me to drink at least 2 liters. That's more than two liters. And yes I am on Valcyte. Thanks for the link

[okarol]

Hi cambonesegirl,
Which immunosuppressants are you on? Are you taking any other meds?
I have read that too much anti-rejection meds can lower your WBC (whilte blood cell count) as can interactions with other medications.

I found this:

IMURAN:
Precautions:   Certain medications, such as allopurinol, can increase the effects of Imuran and further deplete your white blood cell count. Remember to always contact the transplant team before taking any new medication.
Common Side Effects:   Decreased white blood cell count, decreased platelet count, hair loss.
...........

Did you have Thymoglobulin?

Anti-thymocyte globulin (rabbit) on the white blood cells may also reduce the body's ability to fight infections.
..........


I hope they figure out what to do for you - good luck! 

[cambonesegirl]

okarol,

I'm on....

Prograf 8 mg twice a day
Cellcept 750 mg twice a day
Prednisone 5 mg a day
Bactrim 1 tab a day
Valcyte 450 mg a day
Protonix 40 mg a day
Metoprolol 100 mg twice a day
Norvasc 10 mg a day
Sensipar 30 mg twice a day
Insulin 4 units 3X a day
Latus 8 units a day
Multivitamins 2 tabs a day
Sodium bicarbonate 1300 mg twice a day.

When they found out my WBC was low they had me put my Cellcept, Bactrim, and Valcyte on hold. And today in Clinic they stopped my Bactrim and Valcyte all together since I'm almost three months post transplant.

Thymoglobulin? They didn't mention anything about that, I'll have to ask.

They prescribed me Neupogen injections to up my WBC, but gosh I'm having a hard time getting it, my insurance won't approve it. I've been trying to get it since Monday

[Romona]

I ended up in the hospital because my white blood cell count dropped. I was on Valcyte and had Campath induction. Neupogen will make you feel much better. I had some pain for a few hours after I got it, but it was worth it. I felt better very quicly.

[keith]

congrats and 

[pelagia]

I don't understand why the drug companies do this.  There are probably folks here who know how to deal with drug companies like the best of them, so maybe they will comment.  I hope you get it worked out soon.

[MyRenalRomance]

Thank you for sharing your 3 month update!   
I find it really helpful to read these type of posts, as my new kidney is only 1 week old (as of today!).

I hope you continue to do well, and look forward to hearing continued updates.

All my best to you,
MRR

[pelagia]

Hope you are feeling well!

[G-Ma]

A couple of times a Dr. had to fax info to my insurance co and they then covered certain drugs.  Just my 

[pelagia]

We haven't heard from you in awhile.  Hope all is well! 

[cambonesegirl]

My transplanted kidney will be six months at the end of this week. Everything is still going good. I still have to go see the doctors once a month since I was highly sensitized when I received my transplant. Starting next month I will only have to get labs once a month, yay! My only complaint now is my blood pressure, it's too low and my body is not use to it. I'm not on any sodium restrictions and I take Fludrocortisone, 0.1 mg Monday, Wednesday, Friday and with all that I'm still running low and still getting dizzy. Other than that, I feel great.