A little disappointed really

[Hilrose]

I have been waiting since October 2008 for a MRI of my kidney so the doc's can considering removing my rejected kidney. I have been on steroids (prednisolne) and increased tacalimous since September 2008. I have increased in weight my face and stomach are shaped like the moon and I have had so many different problems since, swollen and bruised wrist and doc's don't know why or what, I have developed a leg ulcer which is proving to be difficult to treat, a chest infection and experiencing lots of cramps on dialysis, due to my weight flucutacting weekly... it been a nightmare for me over the months.  I was hoping and actually looking forward to the removal of the kidney with hope that I would come of the most of the horrible life effecting drugs.  After a long discussion last week the docs and consultants have agreed that it would be very complicated to remove the kidney and have advised that they lower my preds and keep me monitored and will do another scan in the summer. I do have a collection of fluid near my transplant and they don't want to trouble it at them moment, and they just say that I'm complicated and they would rather wait until a fews months, and during there discussion they have taken me of he the transplant list until further noticed.

I must say that I am a little disappointed with the decision and feeling pretty low at present!

I really hate this dialysis lark, kidney failure, diabetic crap and all the complications that we have to face day to day

Damn!

[okarol]

I don't have any experience here, just questions. I am sorry you're going through this.
Why do they continue to suppress your immune system if the kidney has already rejected?
Why continue the prednisone? What is their reasoning behind that?
Even if they do not remove the kidney, it seems like your meds could be reduced.
Have they tested the fluid in the abdominal cavity to see what is going on?
Can you go to another surgeon for a 2nd opinion?
I imagine there are risks to removing the kidney as it is connected to an artery, and surgeries are also expensive.
I found a little info here http://www.medscape.com/viewarticle/564297 Nephrectomy After Transplant Failure: Current Practice and Outcomes
  Sending you hugs!

[monrein]

I think I'd try for another opinion.  My transplant no longer works although I had no rejection.  Cyclosporine toxicity was the culprit.  However I now take only 5 mg. of prednisone and am off all anti-rejection meds.  They don't plan to remove it before my next transplant.  Your situation may well be very different but it is important that they explain it to you in a way that is more understandable.
 

[Wenchie58]

No one can understand your situation, but all here can relate to your frustration.  At clinic I am known as the "WHY woman".  Every time something changes or a plan is made I give them no peace until *I* understand why that decision was made.  They get put off at times, but I don't care how put off they are, this is my body and my life and I will know and understand why they are doing what they are doing.
Seek a second opinion and don't ask to know why...DEMAND it!  Stand up for you!
My thoughts are with you in this difficult time.

[Romona]

  I hope things improve for you.

[Chris]

My thoughts have already been said by others, so I won't go on a rant about your center.

[Rerun]

My kidney failed but did not reject until they started taking me off my drugs and then it went bad and I had to have it removed.  It was a relief to get it out of there as well as kind of sad because it had served me 17 years.  But, I would get a second opinion.... in a different Country!

                                   

[nursewratchet]

My thoughts have already been said by others, so I won't go on a rant about your center.

  Yes to all of the above.  Get a second opinion.  Ask questions.  Ask until you get answers.  Make a list of concerns while you are at home.  Keep adding to it until you are at the doctors office, take it with you and go through every one of them while you are there.  You don't want to be leaving the office and have forgotten to ask something.  GOOD LUCK!!!

[paris]

Just sending you hugs      

[jessup]

 

[paddbear0000]

 

[Hilrose]

I don't have any experience here, just questions. I am sorry you're going through this.
Why do they continue to suppress your immune system if the kidney has already rejected?
Why continue the prednisone? What is their reasoning behind that?
Even if they do not remove the kidney, it seems like your meds could be reduced.
Have they tested the fluid in the abdominal cavity to see what is going on?
Can you go to another surgeon for a 2nd opinion?
I imagine there are risks to removing the kidney as it is connected to an artery, and surgeries are also expensive.
I found a little info here http://www.medscape.com/viewarticle/564297 Nephrectomy After Transplant Failure: Current Practice and Outcomes
  Sending you hugs!

I'll try and answer the questions, I'm not sure why I take the immune suppressant to be honest, but I know why I take the pred, I had an infection in the summer, which they thought was a urine infection, I took a high dose of antibiotics for about a month and it didn't clear, I had pain in the kidney which wouldn't go away. My temperature was raised and that too wouldn't go away, so they increased my immune suppressant from 1mg once a day to 1mg twice and day put me on presnisolne, since putting me on the pred, all my symptoms have gone and I felt much better so I guess the pred is suppressing the problems and the doc's think this is the way my failed kidney is rejecting. The doc's have now put me on 5mg of pred a day and have kept me on the tacalimous 1mg twice a day.

The doc's say I'm complicated because I had  DVT in my leg after surgery, then a couple of months later a blood clot in my lungs, so they put me on wafrin to thin my blood. I am steroid induced diabetics, I now have to take insulin and I never had these problems until end stage kidney failure and the transplant op.

They don't want to touch the cyst to test the fluid, all of this I think is down to the problem of having a bleed during surgery or some sort of complication that I just don't understand.  I will however go back to the doc with a list of questions and get the answers.

Perhaps they are scared to do the op, but I don't think they are telling me something, don't you?

Thanks to all for your support, you all make me more determined to get answers to my question or a second opinion

[nursewratchet]

Get your answers.  Please realize, however hard, that every failed transplant goes through it's problems, and can be relisted as they resolve.  TRY to stay positive.   

[kellyt]

 

[jessup]

 
get the answers mate

[deafman]

Persist with the doctors and keep asking them questions until you can understand why they are doing it.

Sometimes they forget that it is your body not their.

 

[Hilrose]

I finally got to see another Neph at the hospital who was willing to answer my questions. Although we only concentrated on two areas of my list of questions... which was why have I been taken of the transplant list and what is the collection of fluid in relation to me complicated and complex.

The Neph answered saying that to his knowledge I have not been taken of the transplant list yet whether my Neph has not got round to taking me of the list or he has decided against it and for the time being he is happy to keep me on it.  So I am happy with that decision for the moment.

Now the big question  - what is the collection of fluid and why won't you do anything about it. He explains the reason for not touching the collection of fluid is that it is very common post transplant and normally it doesn't affect the patient and if it does they would normally drain it but it comes back due to anti-bodies regarding the active transplant and such like. He showed me the results of my MRI and it was very interesting to see. I saw where the collection of fluid sits and where it has pushed my bladder along with other organs to the right of my body, the collection of fluid has decreased since the transplant in 2007 which is a good sign.  I asked so many surgical questions which he was unable to answer so he has decided to have a meeting next week with a surgeon present to discuss the collection of fluid and how it will impact on me having a transplant in the future and if it cause a problem if they take out the transplanted kidney.  He did tell me that he can't see no reason why they shouldn't be able to drain it as the fluid would more than likely not return because I don't have an active kidney, but you can see where the fluid is divided into sections  that may take up to 3/4  different times for draining. He also told me that he thinks it may be lymphatic fluid  just by the imaging of the scan.. we were flicking thru slides from 2007 - Jan 2009 and you can see how its developed. So we will wait until they have there meeting in the coming week and then take the subject further and get answers such as why stay on the immune suppressant and prednisolne meds... I have an appointment with him again in early April.

I must say I feel so much better and at the same time disappointed with my Neph for not providing me with an honest explanation. I'm just happy to get another opinion really...

H

[Romona]

I am glad you got some of your questins answered.

[paris]

Great news that someone listened to you     It sounds like the doctor took time to really explain things.   It is always reassuring to have someone sit down and go over the problems instead of ignoring them.  Let us know how the next meeting goes.