Rejection after nearly 3 years. Could my polycystic liver hurt my kidney?

[Angiepkd]

Hi all!  After almost two years of problem free transplant life, my creatinine bumped, I have protein in my urine and my donor specific antibodies have increased. I had a biopsy yesterday, and I am experiencing rejection that would normally be treated with pheresis and possibly IVIG therapy. However, because I had cryptococcal meningitis less than a year after transplant that almost killed me, and there are still a few cryptococcal remnants in my blood, I am a special case. If they completely take out my antibodies, the crypto could come back with a vengeance, and I would probably not survive another bout. They are still looking at doing the pheresis only treatment, but are waiting for a consult with my infectious disease doc. I had both of my polycystic kidneys removed prior to transplant, but also have polycystic liver disease. My liver has gotten extremely large and is now protruding into the kidney space. I have resisted the liver resection surgery, because it is a dangerous option, and has a long recovery time. Could the liver be mashing my poor new kidney and causing problems?  Has anyone had the liver resection done?  Mad and scared at the same time.  So tired of this roller coaster. Any help would be greatly appreciated. Thanks!

[kickingandscreaming]

Sorry, I have no experience or wisdom to share.  But I am sending you good thoughts and support.  Sounds scary and  very disappointing. Sorry you have to go through this. 

[LorinnPKD]

Also sending you good thoughts.  I have PLD and PKD and will be following this post.

What advice are you getting, medically?  I have both kidneys and even though they are enormous (both about 9" in length) and taking up so much space, the idea is to keep them if I get a transplant.  Maybe my midsection is like a TARDIS?   

[Angiepkd]

Sorry, I have no experience or wisdom to share.  But I am sending you good thoughts and support.  Sounds scary and  very disappointing. Sorry you have to go through this. 

Thank you!

Also sending you good thoughts.  I have PLD and PKD and will be following this post.

What advice are you getting, medically?  I have both kidneys and even though they are enormous (both about 9" in length) and taking up so much space, the idea is to keep them if I get a transplant.  Maybe my midsection is like a TARDIS?   

I had my kidneys removed as a last resort. They weighed a total of 25 pounds. Both larger than footballs, and my stomach wasn't a TARDIS lol. I was losing weight, had constant pain and was short of breath. The liver was enlarged, but not causing me any problems except shoulder pain, so they did a cyst fenestration when they removed the kidneys. Since the transplant, the liver has tripled in size. It is now visible in my upper abdomen, mostly on the right side. The transplant team have suggested the liver resection several times, but I am not keen on the procedure. However, if it is mashing my new kidney, I will have to reconsider. Guess I will try to get through this rejection episode and go from there.

[justagirl2325]

Also just wanted to pass on my support and hope that in the end everything returns to normal for your transplanted kidney. 

[Rerun]

I will put you in my prayers.  This is awful and stressful for you. 

Maybe take the kidney out.  Dialysis would be a bridge to wait for something better.  I know.... you don't want to do that.

            

[cassandra]

Sending you love and positive vibes. I'll start doing some research into this though.

Love , luck and strength, Cas

[Angiepkd]

Thank you all for your kind responses!  Had my first plasmapheresis and IVIG treatments yesterday. I thought the IVIG was going to kill me. Fever, nausea, vomiting, shaking, chills, you name it, I got it. Tomorrow is round two, so hopefully less side effects. I am going to have the liver looked at after I get through this mess. I may have to bite the bullet and have the resection. Will keep you updated on my progress. Thanks again!

[PrimeTimer]

Sorry to hear this. Sending you good thoughts and pray the IVIG treatments do the trick so surgery will not be needed. 

[Angiepkd]

Thank you all!  Have been in the hospital for several days. Creatinine still climbing (3.7) this morning. Treatments aren't working, so we will see what comes next. I will keep you posted.

[kickingandscreaming]

Sorry about this.  Must be really scary and disappointing.  I'm rooting for you.

[MooseMom]

Gosh, this all sounds so frightening and complicated.  I know so little about PKD and all of the ways in which it can manifest itself, so forgive me if this question is stupid.  Can an enlarged liver that might be pushing on a transplanted kidney in and of itself cause rejection?  It just seems to me that rejection is one issue while a physical mashing of the kidney is an entirely different one.  Does that make sense?  I mean, if, say, tomorrow you were to have a liver resection, would that resolve the rejection problem?

Do please keep us posted, and in the meantime, we all hope you and your medical team can find the solution. 

[Angiepkd]

Gosh, this all sounds so frightening and complicated.  I know so little about PKD and all of the ways in which it can manifest itself, so forgive me if this question is stupid.  Can an enlarged liver that might be pushing on a transplanted kidney in and of itself cause rejection?  It just seems to me that rejection is one issue while a physical mashing of the kidney is an entirely different one.  Does that make sense?  I mean, if, say, tomorrow you were to have a liver resection, would that resolve the rejection problem?

Do please keep us posted, and in the meantime, we all hope you and your medical team can find the solution. 

Thanks, MooseMom.  You are absolutely correct.  The mashing and rejection are two separate issues. I am unsure about whether the smashing could cause a rejection episode. I had a CT scan of my abdomen today showing all of the mess going on inside, but the doc hasn't been able to review the results with me yet. My gut tells me they are two seperate problems. Guess I will find out tomorrow.  I will post the doc's response.

[MooseMom]

I am very curious to find out what your docs have to say once your scan has been studied.

Ugh.  This must be awful for you.  I am so so sorry that you are having to go through this.  It's just not fair.

[cassandra]

   


Thinking of you

Love and strength, Cas

[Kathymac2]

Hi Angiepkd,

So sorry you are going through all of this.  Sending good wishes your way and hoping things turn around for you soon.

Kathy

[Angiepkd]

Well, spent another week in the hospital for biopsy (x3) and apheresis/IVIG/rituximab and UF only dialysis treatments. So far, no improvement. Creatinine up over 5. Tomorrow morning I report back for apheresis/ rituximab and dialysis treatments. I am beginning to lose hope. This kidney is my only chance I will get for transplant, since I got cryptococcal meningitis 8 months after transplant. The cryptococcus is still present in my blood, so I don't get a shot at another kidney. The risk of the meningitis would be too high. I cannot imagine that I will have to dialysis for the rest of my life. So discouraging. The meds are making me sick, tired and useless. Praying that tomorrow's labs show a decrease in creatinine. Thank you all for the kind words and prayers. I definitely need them.   
I will keep you posted. Thanks again!

[kickingandscreaming]

As I was reading your words, I felt this sense of horror for what you've had to go through in the hospital.  And then to have it not work.

In medical situations like that, I always feel forced to surrender my body--this very intimate thing-- to my medical team.  And doing that is hard.  I understand your feeling of hopelessness that this is your only chance. I'm really sorry. I don't even really have the choice of a TX so I get that the alternative of "doing time" in dialysis is daunting. Yet, there may be a chance that something not yet invented or tested could help both of us out at some point.  Who knows?

On the other hand, you sound quite calm and centered about all this.  I just imagine how difficult all this is.  I'm rooting for you.

[MooseMom]

Wait a minute; have I missed something?  Is this a true rejection episode, or is there a problem with your liver?  Is anyone still talking about a resection?  What exactly is happening?

I am so horrified on your behalf.  I don't even want to imagine what you must be feeling.  Every time I read your post, I feel my stomach lurch.  I wish so much that I had the solution, and I am desperately hoping that the treatments prescribed by your docs will be effective.  I am sorry the meds are making you ill; I hope that in the end, it will be worth it.

I hope you are able to get some sleep and some relief from what much be a very anxious time for you and your husband.   

[MooseMom]

Angiepkd, are you doing OK?

[Charlie B53]

I know so little.  However, and this is only my opinion, if the liver enlargement is pressing against the Tx'd kidney with sufficient force to restrict blood flow, then there is very limited capacity for that kidney to function.  Most anything can, and will, go wrong.

Resection may be a necessary evil.   I Pray the Dr's find another treatment first, but when faced with declining labs you may not have much choice.

I am sure we all are Praying for you.

[MooseMom]

Angiepkd hasn't posted here for almost 2 weeks.  She had been good at keeping us up to date with her situation.

I am concerned.

[Angiepkd]

Hi all!  Sorry I haven't been able to post, but the last two weeks have been pretty miserable. After many apheresis treatments, IVIG, dialysis and finally velcade, all of the antibodies are gone from my blood. Unfortunately, my kidney function is not improving.  Creatinine is sticking around 7. The medicines have all but killed me with their side effects, and I somehow got C.diff during all of this. I didn't know much about C.diff, but I sure do now. It is excruciatingly painful. The first round of antibiotics (flagyl sp?) didn't work, so now on vancomycin. The team has decided not to do any more treatments, and I am now on a M-W-F dialysis schedule starting this Friday. Even though I am devastated by this, I feel so lousy that I would give anything just to be able to function again. After 4 biopsies, the doctors still don't know why my kidney isn't recovering.  For now, they are going to keep me on my anti-rejection meds, in case the kidney makes a turn around and starts working. Since I have had my giant native kidneys removed, the docs are hoping I can do PD. Now I can at least have something to research, etc., and it takes off some of the pressure of getting a working fistula. My veins aren't great, and my left arm is out of room to try another one. I think knowing it is probably over is better than praying for recovery and being disappointed each time my labs come back. Kidney failure isn't for the faint of heart, and I will keep going, in hopes that some new form of treatment becomes available. That is currently the only hope I can cling to.

As for the liver, they scanned it and determined it isn't putting pressure on the kidney right now, so that would not have caused any of these rejection issues. They will keep tabs on it and decide whether to do a resection when that time comes. Also, got to see pictures of my enlarged, cystic, spleen and gallbladder. I figure they can just remove those when they decide to work on the liver 😅

Thank you all for worrying about me and checking on me. This, too, shall pass.

[nursey66]

So sorry to hear this , I remember 3 years ago when my husband 's transplant failed after 11 years , I cried and cried. It's just so devastating. He did get a second kidney a year ago, so far it's working well.  I sure hope yours will pick back up again.

[MooseMom]

It sounds like they threw just about everything at you. 

I understand the relief one gets when you just let go of hope, when knowledge of the "inevitable" triumps and you can just go forward.

It's a bit weird encouraging you go "give up hope" because it is anathema to how "brave" or "noble" we're supposed to be.  So, let me do the hoping for you, OK?

I am encouraged by three things.  One, the antibodies are gone.  Two, the doctors don't know why your kidney isn't recovering.  If they knew why, then I'd say the chances of recovery would be slimmer.   Three, you're still getting your anti-rejection meds.  This at least gives your kidney a chance.

Thank you for taking the time to check in with us.

I'm wishing you all the best.  I'll throw lots of Hope in there, too.