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

[kickingandscreaming]

So sorry you're going through all this.  Loss of hope is probably one of the most painful states of mind/heart. It's a huge loss.  But it does lead the way for moving on to whatever the next step is. 

I witnessed C. diff.  in my late husband as he died from Leukemia.  It's horrible.  My heart goes out to you--in more ways than one.

You could do a lot worse than PD.  I'm happy you have this option.  I've been doing PD now since last January.  Of all the D options, it is the least intrusive.  So far it is working well for me and I'd choose it--any day-- over hemo. 

Be well, AngiePKD.

[cassandra]

O woman those treatments sound horrific, and than c-dif on top....... I'm sorry too that you had to go through that. And I'll be joining MM in doing the hoping.
And of course I hope PD will go a treat.


       


Lots of love, luck and strength, Cas

[Angiepkd]

Thank you all so much!  Doing hemo at the hospital 3 times per week right now.  They have finally gotten 90% of the fluid removed, which is a big improvement. My creatinine has been steady at 7.4-7.9. Today's labs came back at 6.0. I am hoping this is a sign of better things to come. The transplant doc said he wasn't sure what to make of it, but reminded me not to get my hopes up. No appointments made to see if I will qualify for PD, and still on all meds, so there must be a smidge of hope.  CDiff is still kicking my butt.  Stomach cramps, etc.  Praying the meds finally get rid of it.

To add a little perspective to my situation...
I met a very nice lady who has treatments scheduled at the same time as me. She is in a wheel chair, on oxygen, and waiting for a heart/lung transplant.  She is having fluid removed so that she can have the transplant if a match comes up.  This woman has been through quite a lot, but always smiles and jokes. Today, while her husband was at the desk signing her in, she told me that this week she had contemplated suicide. Wow.  I didn't know what to say.  She is tired of the appointments, feeling bad, everything that comes with organ failure. I tried to remind her how many people loved and cared about her, and asked her to hold on a little while longer. I told her husband what she said later, because I felt obligated to say something. He said he was aware, and is keeping a close eye on her. 

I left there today, walking to the garage and driving myself home, and I realized that things I have going on could be much worse.  I think God sends people to me who show me how lucky I am just to wake up every day.  It's time to stop whining and get back to dialysis. Still praying for a miracle, but ready to accept the inevitable if need be. 

Thanks for listening.  If you could find the time to say a little prayer for my sweet friend, I would greatly appreciate it. She needs all the help she can get.

[kickingandscreaming]

So good that you are out of the hospital and could leave on your own steam.  Carry on.  Have you or your team considered a fecal implant to deal with the C. diff?  It's a "gross" concept, but I have heard that it works well in this kind of situation.  Best of continuing luck.

http://www.hopkinsmedicine.org/gastroenterology_hepatology/clinical_services/advanced_endoscopy/fecal_transplantation.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365524/

[Xplantdad]

Hi Angie-I just read through all of what you are going through. We are hoping for the best for you-and we WILL say prayers for you and your friend. I can't imagine the feelings that you are having-I can only relate that my 26 year old daughter now routinely says that she HATES everything to do with dialysis-and all that goes with it. My heart breaks a little more every time I hear her say that...

This disease totally sucks. FWIW, I am the caregiver for my daughter who is waiting for a transplant-and she's had to deal with 5 of her older friends from the Fresenius clinic pass away for various reasons due to ESRD. We do home hemo...so we're not at the clinic any more except for the once a month visits.

We sincerely hope that your kidney rebounds and starts functioning well again-and that 2017 starts off with good news as well. Please continue to keep us updated 

[MooseMom]

I'm praying for you and your friend. 

I'm pleased that you are out of the hospital.  At least there's that.

If there is anything we can do you help you or to make your life that just little bit more bearable, please do let us know.

I'm still holding on to hope for your kidney.  Hope can be a scary thing, but that doesn't mean it has to be avoided at all costs.  Sometimes life really does offer up a surprise or two.

Please keep us updated.  I for one check IHD each day hoping to see a post from you. 

[PrimeTimer]

Like a guardian angel, perhaps you were at the right place at the right time for your new friend.   

I found this on wiki.

A guardian angel is an angel that is assigned to protect and guide a particular person, group, kingdom, or country. Belief in guardian angels can be traced throughout all antiquity. The concept of tutelary angels and their hierarchy was extensively developed in Christianity in the 5th century by Pseudo-Dionysius the Areopagite.

The theology of angels and tutelary spirits has undergone many refinements since the 5th century. Belief in both the East and the West is that guardian angels serve to protect whichever person God assigns them to,[1] and present prayer to God on that person's behalf.

[Angiepkd]

Thank you all so much!  Kickingandscreaming, I haven't heard about fecal implants before, but it does sound gross!  I will have to ask about that. My symptoms seem to be subsiding a little.  I just finished my 14 days of oral vancomycin, after 10 days of flagyl (sp?) and have now had 2 doses of IV vancomycin. I am hoping this will take care of it. They did give me some pain meds to help me sleep, which is wonderful.
PrimeTimer, I very much believe in guardian angels!  And I think she may have been sent to me for a little reality check. Even though I am devastated at the thought of going through dialysis again, I am still doing so much better than many others. I am trying to stay positive!
The transplant doc told me to schedule an appointment with my surgeon to be evaluated for PD and have the catheter placed if I am a good candidate.  Still on the anti-rejection meds, but their hope is dwindling.  I am still praying for that miracle every time I have labs drawn. 
Thank you all for listening and offering support!  It means a lot!
Tomorrow is another dialysis day, and a chance for that miracle to lower my numbers!

[MooseMom]

Angie, I've heard of fecal transplants and actually saw a documentary about them.  (What does that say about my viewing habits?   )  I found this that may be of interest to you.

http://www.hopkinsmedicine.org/gastroenterology_hepatology/clinical_services/advanced_endoscopy/fecal_transplantation.html

How is your husband handling all of this?  It must be tough on him, too.  I'm sure you are able to support each other.

Since the docs have been able to rid you of antibodies, do they have any educated guesses as to what is actually happening to your kidney?

I'm still holding onto lots of hope for you.

Thanks so much for keeping us posted.  If it becomes too much of a burden to post about your situation, then please stop.  You don't owe us anything.   

[kristina]

Dear Angie I am sending you my best wishes and I am thinking of you
and send you my good-luck-wishes,
Kristina

[Angiepkd]

Hubby and I are still holding out for a miracle. He has been great through this whole thing, and aside from being too overprotective, has kept a positive attitude. 
Since the Cdiff seems to be gone, I am going to hold off on any fecal implants 😂 
The kidney doc's are confused by my kidney's lack of recovery after removing the antibodies. I have had 4 biopsies, and none of them have given any clear insight as to what's going on.  They are as disappointed as I am.  My creatinine on Friday was 5.9, down from 6.7.  I was pretty excited about any decrease, but the docs didn't really share my enthusiasm. I guess Monday's labs will tell me more, as my numbers always increase after having 2 days off. They have lowered my dry weight to see if it will reduce my swelling and blood pressure, and I am trying not to be fluid overloaded. It's hard not to drink after being pushed to drink more for almost 3 years! 

It helps me to be able to post about all of this, and I appreciate you all taking time to respond.  I am slowly wrapping my head around the fact that dialysis may be my future. It just really stinks that I didn't even get 3 years out of my transplant. I was banking on at least 10.

Thank you all, again!  When that miracle happens, I will be sure to let you know!