Two questions: Biopsies and casts in transplant

[Deanne]

I had a one-year biopsy a week ago that showed casts in my transplant, leading to a VCUG test to check for reflux (negative). This makes me wonder:

• Is a one-year biopsy standard for everyone? If I hadn't had a biopsy, I never would have known about the casts. Since my lab tests have always shown perfect kidney function and the VCUG test doesn't show a reflux problem, I don't know how much I should care about the casts. If I hadn't had the biopsy, I'd be blissfully ignorant.
• Has anyone else shown casts in their transplant and if so, what, if anything, was done about them?

I'm waiting for the transplant center to call me to tell me more about them and any next steps.

[MooseMom]

No, my center does not have a biopsy as part of it's one year post tx protocol.

I hope someone can answer your questions about casts because I've never heard of them, and when I googled them, nothing was said about what they meant or even if they required treatment.

So you've had the VCUG test and it showed no reflux?  Hmmmmm.....

I'm extremely interested in hearing what your tx team has to say!

Overall, though, how are you feeling?

[Deanne]

Other than this stinkin' cold, which I think is finally on the way out, I'm feeling fine. I've finally started eating again. I can't eat when I have a cold. I've mostly decided that I don't think most TX centers demand a 1-year biopsy, so I'm going to pretend it never happened. My labs have been fine (except for the last ones and maybe the next ones because the cold), and that's what I'm going to pay attention to. They haven't called me yet with any additional information.

[Rerun]

 

[Deanne]

Not a happy camper today. The transplant center called to tell me their real concerns. I have zero signs of rejection right now, but my first biopsy, at 2 months, showed a moderate degree of inflammation and the second biopsy at 1 year showed the inflammation has actually gotten a bit worse. They said this is why they want me to stay on prednisone and that the inflammation means a 30 - 50 % chance of rejection at some point, and the kidney won't likely last as long as initially expected. Prednisone and I are not friends.

[MooseMom]

Well, BOOOO! to that sort of news.

So, are casts a sign of inflammation?

[Deanne]

I think the casts by themselves are a separate thing and not really a concern, but added to to the inflammation, they wanted to make sure there was no reflux.

[MooseMom]

OK, so the sole concern y'all have is "inflammation"?  And the best treatment for that is prednisone?  Is that pretty much the situation?

[Deanne]

That's it in a nutshell. Prednisone causes anxiety attacks and will potentially create a situation where I end up house-bound because I can't drive anymore. If so, is transplant worth it? I doubt it. It would be taking almost everything away from me that I wanted a transplant for. I might have a longer life, but for what? To spend much of it at home? I'm not a homebody. 

Stopping prednisone isn't an option if I want to keep the tranplant. Reducing it to 1/2 dose is a potential option, but *might* shorten the life of my transplant and would likely eliminate the chance of trying to get a new transplant in the future.

I'm stepping up my search for a replacement car to see if I can tolerate staying on prednisone long-term without losing my freedom. My coordinator seemed to understand the anxiety thing. She said her daughter is just learning to drive and is going through the exact same feeling. She asked me to talk to my neph about it when I see her next month and  then call her back.

Hello rock. Meet hard place. You're both squishing me!

[MooseMom]

OK, so, taken together, all of this is pretty overwhelming.  So let's divide and conquer.

It seems to me that the first priority is to keep that kidney going.  If taking prednisone is the best way to ensure reaching that goal, then that is non-negotiable...at least for now.

Prednisone is the rock.

The side effects of prednisone, anxiety, is your hard place.  But we all know that our post tx drugs can cause all sorts of side effects, and these side effects can be treated.  The idea is that a drug that is prescribed for you is judged by your docs to be of more benefit than not.

Are anti-anxiety drugs a no-go area for you?  You mentioned the concern that they will cause you to be sleepy all of the time.  Have you taken such drugs before, and if so, did they cause sleepiness to the point that you weren't able to function?  My son went through a period last year when he was put on an anti-anxiety med for a finite period of time, and he did not experience sleepiness, but of course you are not him. 

How are you living your life right now?  Are you able to function pretty well today?  Your concerns are certainly valid, but they are not necessarily the concrete reality.

I know that you like your neph a lot and that she has come through for you in the past.  I am confident that the two of you will come up with a workable solution.  It may take some time, though, as you may go through a period of trial and error.  I can't imagine that she will let you become homebound.

I'm also glad that your coordinator understands your anxiety.  The whole point of transplant is to allow patients to resume a more normal life, and I am sure that your coordinator would be disappointed if your life is negatively impacted by the meds you take to sustain that transplant.

[Simon Dog]

The side effects of prednisone, anxiety, is your hard place.

Prednisone has also been known to take out hips (Avascular necrosis).  I got a transplant much sooner than expected due to prednisone, however, it was a hip transplant rather than a kidney transplant.

[Deanne]

OK, so, taken together, all of this is pretty overwhelming.  So let's divide and conquer.

It seems to me that the first priority is to keep that kidney going.  If taking prednisone is the best way to ensure reaching that goal, then that is non-negotiable...at least for now.

My first priority is really to live as normal a life as possible. Transplant is/was hopefully a means to that end.

The side effects of prednisone, anxiety, is your hard place.  But we all know that our post tx drugs can cause all sorts of side effects, and these side effects can be treated.  The idea is that a drug that is prescribed for you is judged by your docs to be of more benefit than not.

Are anti-anxiety drugs a no-go area for you?  You mentioned the concern that they will cause you to be sleepy all of the time.  Have you taken such drugs before, and if so, did they cause sleepiness to the point that you weren't able to function?  My son went through a period last year when he was put on an anti-anxiety med for a finite period of time, and he did not experience sleepiness, but of course you are not him.

The transplant center agreed that I'd be trading one bad side effect for another. I think there are limits of which anti-anxiety meds we can take. The TX center and my neph both said I'd end up very sleepy.

How are you living your life right now?  Are you able to function pretty well today?  Your concerns are certainly valid, but they are not necessarily the concrete reality.

I'm functioning reasonably well right now. I still experience anxiety when driving, and I have good days and bad days where sometimes the anxiety is very bothersome, but not to the point of panic attacks right now. However, that's because I reduced prednisone to 1/2 dose without their knowledge. At 5 mg, I was having borderline panic attacks whenever I went anyplace. Even at 2.5 mg, I still don't do many of my normal activities, my friends cater to me because there are many places I just can't go anymore, and I look for alternate, way out of the way, routes to get from point A to point B when possible. Since the inflammation shows progression at my last biopsy, I feel like I have to go back to 5 mg if I want to keep this kidney long-term.

I'm also glad that your coordinator understands your anxiety.  The whole point of transplant is to allow patients to resume a more normal life, and I am sure that your coordinator would be disappointed if your life is negatively impacted by the meds you take to sustain that transplant.

She is disappointed. She's also the one who used the phrase "between a rock and a hard place" because she sees my options as very limited. I think my only win-win choice right now is to get a car with an automatic transmission and hope for the best. My neph suggested meditation, but I don't think it really made a difference. The anxiety was getting progressively worse over the past several months, so for now, I can only be optimistic that changing to an automatic transmission will be a permanent, if expensive, solution.

[MooseMom]

I hope you can find a car that suits you.   

[jeannea]

Can you try therapy? Cognitive behavioral therapy could help with your anxiety without requiring new meds. It takes work but can be helpful. Many therapists have lower fees for those who can't afford it. (Sorry, don't know your situation.) Another good thing to learn is self-hypnosis. It's not like the stage version where you cluck like a chicken. It is a way of dealing with issues. I use it for pain management.

The prednisone is a pain all around. I will never be off it myself. 17 years this year. It is horrible stuff. I don't have anxiety. I have nightmares, dpression, occasional paranoia. I'm really sorry you're having so much trouble. Ask how low a dose you can use.

It can be a real shock when after transplant things turn out to be really tough. I hope you get some good news soon about something.

[MooseMom]

Jeannea, the problems with prednisone that you described...did you have them from the beginning, or did they develop slowly over the 17 years you've been taking it?

[Deanne]

Great question MooseMom! My TX center first tried to tell me that since I didn't have the problem from the beginning that it couldn't be drug related. Then they tried to tell me that the 5 mg dose I'm on is the same as the body produces normally, so it can't possibly be the cause. They stopped that argument pretty quickly though because my next question would have been, if it's the same as my body produces normally, then why use it?

Jeannea, I admire your endurance! You've gone through so much yourself, but still take the time and energy to help others. I want your strength! Has therapy or anything else helped you deal with your prednisone issues? I think I've always been a bit paranoid, just from life-events, so while I can relate to this to a degree, I bet it's 100's of times worse for you. I tried therapy in m college days, but back then, I was too paranoid to trust any therapist. Hopefully I've moved on from this anyway.

I'd be glad to try therapy or anything else. I have a good full-time job with great insurance benefits. I've considered hypnosis, too. I'll add these to the things to ask my nephrologist about. I'm not against taking prednisone in general if it's what I need. My only issue is that I want a lifestyle I can live with. If they can come up with a way to help me overcome the anxiety and still reduce my risk of rejection, I'll be a happy camper.

[MooseMom]

Great question MooseMom! My TX center first tried to tell me that since I didn't have the problem from the beginning that it couldn't be drug related. Then they tried to tell me that the 5 mg dose I'm on is the same as the body produces normally, so it can't possibly be the cause. They stopped that argument pretty quickly though because my next question would have been, if it's the same as my body produces normally, then why use it?

It is my understanding that a transplanted kidney does not come with it's own adrenal gland.  It is also my understanding that when a tx patient takes prednisone to combat inflammation and to do the other things it's supposed to do post-tx, that patient's own native adrenal gland ceases to function.  So the 5mg of prednisone not only makes the native adrenal gland cease producing it's own corticosteroids, it also at the same time replaces it, which when you think about it is pretty tidy.  I'm sure this doesn't make you love prednisone any more, though!

I had to go to the ER last year for a non-kidney issue, and when I mentioned I was a tx patient and was asked about my meds, when I told the doc I was on 5mg prednisone, he was very happy and also said that that is what the body produces on it's own pre-tx, so that seems to be the company line.

[jeannea]

I had some bad issues with prednisone in the beginning. This was 1998 and I was 5'0" and about 125 pounds. Living donor, my mom, matching 4 out of 6. The protocol started me on 120 mg of prednisone a day. That is a huge amount. The taper took a year. At first I enjoyed having an appetite again, enjoying food. (I will say after that I was never that small again.) At night I had terrible nightmares with people trying to kill me and disasters happening. I would wake from a nightmare and scream because someone was standing in my room. No one was in my room. I became scared to go to sleep at times.

I don't hallucinate often any more and I can realize quickly it's unreal. I still have plenty of nightmares. I weigh too much. I have to be a little careful in groups, esp family, of my meltdown point. When I feel myself saying "Leave" I have to find quiet time. I do have osteoporosis but consider that worry lower on the totem pole.

I began therapy July 2001. My company had EAP. I went to the free sessions then asked for referrals. I met with a therapist and liked her so I continued. Cognitive Behavioral Therapy is a way of learning to think about the problems in your life. You tell your therapist what is bothering you. Sometimes your feelings are totally normal reactions. My therapist then works on letting me talk and also how to ask for help when I need it. If my reaction is making my life rougher, then we work on different ways to see what is happening, what will help me, what will harm me. This is a simplistic explanation. But it's all about me making the best choices for my life. I have talked to her often about end of life. I believe that at some point I will want to stop treatment. I believe that is best for me. She and I have worked on how to let my family know that is my wish. That's now. Years ago when I started it was to deal with an abusive boss. It evolves.

You are sweet to say I have strength. I do have faith and that helps. The rest of it is putting one foot in front of the other (the old Santa Claus cartoon song). I don't feel strong most of the time. I think that knowing I can quit helps my mind set. I feel bad that we all have these problems. I want all of us to feel better.

[MooseMom]

  Jeannea.  I'm so glad you are a member here on IHD.

120 mg of pred.  Unimaginable.

[Deanne]

60 mg of prednisone landed me in the hospital in the past and when I got there, they were surprised I wasn't in a coma. It gave me a blood sugar level of over 1500. I can't imagine 120 mg! If the blood sugar level didn't kill me, I'd be in a wheelchair. I could hardly walk at 60 mg. Someone lightly bumped into me once and I landed flat on my back on a concrete floor, whopped my head so hard I was surprised I didn't knock myself out, and then I was like a turtle on my back. There was no way I would have been able to get myself back on my feet.

120 mg. Just wow.

Interesting information about the adrenal gland MooseMom. I knew prednisone shut down our adrenal glands, but it never occurred to me that they would deliberately want to shut them down. I'll have to ask my neph about this.

And MM - You landed in the emergency room!? Since you're here posting, I assume you're ok, but I'm sorry about the scare you must have had!