1B Rejection...

[wifedonor]

Hello all:  It has been a long time but I am back on the boards....looking for answers and support.  Sorry I have been away so long.   Life has been a whirlwind of ups and downs.  First of all it has been a little over six months since my husband's kidney transplant.  Everything has been going okay until when it was time for him to go back to work.  Suddenly the creatinine started going up little by little.  After surgery he was 1.2, then it was 1.3, 1.4, then 1.5, then 1.6 and suddenly 1.8.  Between that time he had a biopsy and rejection was not found but he was on a careful watch because of what was found.  Anyway, about two weeks ago he had another biopsy because the creatinine went up again and the drs. were alarmed.  He even had a second opinion and everyone was in agreement for another biopsy.  After then he was diagnosed with 1B acute rejection.  He was first treated with steroids through IV and then went the creatinine still didn't return to baseline and went up he was given high dosages of thyroglobulin (sp) in the hospital for four days.  We went back to the dr. and even though he said it might have been too soon my husband took blood tests anyway.  The creatinine was up to 2.3....we have to take the labs again and wait.  The drs. said it is possible he may need more thyroglobulin(hospital stay)....just not sure.  What does all of this mean?  I can't help but be concerned.   Of course during this time his medications have been adjusted....and the side effects are hardly desirable.

Please share if you have had any experiences or know of someone with the same.  Another question how does a transplant patient (never had dialysis) maintain a normal life of making plans for vacation (had to be cancelled) or even work a steady job (career) when at a any given moment you can be placed on disability for at least three months.

Please help..........concerned wife, donor, caregiver, advocate....

WD




EDITED: Fixed bold prompt - Sluff/ Admin

[livecam]

Another question how does a transplant patient (never had dialysis) maintain a normal life of making plans for vacation (had to be cancelled) or even work a steady job (career) when at a any given moment you can be placed on disability for at least three months.

Please help..........concerned wife, donor, caregiver, advocate....

WD

First WD I'm very sorry to hear about the problems you and your husband are having.  The answer to your question is that you make those vacation plans, go to work if you can, and live life to the fullest with the knowledge that some day that kidney is going to fail and that we are all going to face dialysis again. 

For most people these days there is a nice honeymoon period with the new kidney that allows us to do all of those things.  In other cases the kidney rejects on the table and the person is back on dialysis right after the surgery.

It is a fact that there are no guarantees with transplantation.  There are many reasons that a graft can reject, deteriorate over time, or last for years and years.  It is a crapshoot that we all decide to take after having the facts explained at transplant evaluation time.

I hope your husband's situation stabilizes for the better and thank you for doing all you have for him.

[wifedonor]

Thank you....now we just wait for his lab appt. tomorrow.  Waiting is awful.

WD
(Wifedonor)

[st789]

I concur with livecam's explanation.  Rejection is always a major concern for most transplanted patients.  Juggling your career, drs' appt. and family and social life can be overwhelmed at time.

[keefer51]

WD i am sorry for the troubles that you both have to face. When i had my first transplant i went back to work after about a month. I decided to do and plan anything out i wanted to. I knew there was a chance of rejection but i tried not to think about it. Mine lasted over ten years. A person can do allot in ten years. I did. I have no regrets.

[Sluff]

Wifedonor,

I am so sorry that things are not going well. Please keep us posted. I hope the treatments solve the problems, but no matter what happens we are here for you and your husband.

[okarol]

Dear Wifedonor,
I missed this thread while out of town, and am wondering how your husband is doing.
I hope you are okay, please let us know.
{{HUG}}}
 

[kelliOR]

 After then he was diagnosed with 1B acute rejection. 

Hi Wifedonor,

I know just the word rejection can knock you off your feet!  The important word here is "acute".  Acute rejection is treatable. Within the 1st 7 months of my transplant (LNR donor), I had a total of 4 biopsies, due to rising serum creatinine. (as high as 2.7)  I had treatments of Thymoglobulin, mega doses of oral prednisone (made me crazy!), and many times my target levels of prograf were adjusted.   You didn't mention what meds your husband is on.  If biopsy reveals 1B rejection, I am inclined to think it is cellular rejection, or possible toxicity from meds.  Many times this is hard to determine even with biopsy as nephritis is seen with rejection AND medication toxicity.   Often transplant centers will mess with amounts of your meds, recheck labs, and see if there is a resolution.
Sometimes one has to change from prograf (tacrolimus) to rapamune (sirolimus)  or vice versa. 

The first year is quite a ride.  Hang in there,   
Thinking of you,  Hugs....Kelli

[Ohio Buckeye]

Whew, this must be a scary time.
Will keep you in thought and prayer.
Hope the kidney settles down and adjusts to its new home.
I'm sorry you're having these problems.

[stauffenberg]

It is important to distinguish three quite different phenomena.  First there is acute rejection, in which the body can mount a sudden immunological attack on the kidney, causing it to fail if the immunosuppressive dose is not increased.  Then there is the renal damage caused by the anti-rejection medications themselves.  Finally there is chronic allograft nephropathy, which refers to the decline in function of a transplanted kidney entirely independently of rejection by the body's immune defenses.  This third problem is poorly understood and there is still no way of treating it.  Some think it may be the result of gradual dying off of the transplanted kidney due to the trauma of the transplantaiton procedure.  The gradual worsening of creatinine values you describe is characteristic of damage due to the immunosuppressive drugs or due to chronic allograft nephropathy, while sudden, dramatic worsening of the creatinine level is the hallmark of acute rejection.