Billy, I have the same things going on with my kidneys. My Creatinine readings have been between 2.0 and 1.3 - high readings. And my GFR is runing between 24 - 40 - low readings. Both of these tests indicate chronic kidney disease. The lower I get with the fluid pills, the better those readings are. Right now, I'm off the fluid pills, except when I start having slight build-up of ascites or swelling in the ankles and legs. I was also told that the Cyclosporine can cause kidney problems, but we HAVE to take it for the rest of our lives. Like you, I'm bummed out about it.
And I am also anemic - low red count, white count, and hemoglobin.
Since our immune systems are suppressed because of the anti-rejection meds, we are at risk of other problems. I'm starting to accept that I will never be completely well again, but then I'm almost 70. We just have to make sure the transplant center checks our cyclosporine level every couple of months, keep fluid pills as low as possible, drink plenty of water, and I have also made a list of foods that are good for the kidney's and put the list on my kitchen cabinet. Please keep me up on what is being done for you since we have the same doctors. Marilyn

My MIL has the same issues after a Liver transplant 13 years ago. Good news is it has been 13 years since her transplant and she's still with us, so it may not be life threatening. Also, they have slowly decreased her rejection medication over the years which no doubt helps.
Hope this helps. Hang in there =).

Talk to your Liver Transplant team and ask if your meds can be reduced. I'd def ask for a dietary consult too. Restricting protein can help but you need some quality protein so get professional advice re: your specifics. It does help. Also keep hydrated of course. That's good for everything.

Your kidneys can be stable for years to come so don't panic. I work in Nephrology abc we rarely see kidney failure from liver transplant immunosuppressants. Very rare. We see it more from heart and lung transplants as those require much higher doses of nephrotoxic immunosuppressants or with people in severe liver failure. Def ask your transplant team. They are there for you 24/7.

Hi Marilyn, Billy!

I know what you're going through. My PCP has me on "Phos-lo" which is calcium acetate and I take 2-667mg capsules twice a day. I used to be on the Phos-lo 1334mg 3 times daily so I'm grateful that they reduced it.

For the anemia, I take 75 mg iron twice daily and so far it has worked well for me. it does take a considerable amount of time before the feeling of being bummed out starts to fade somewhat and it is common for post transplant survivors to get periods of depression from the realization that your life is now more restricted than before.

The way I handle it now is whenever those feelings of sadness and frustration rent too much space in between my ears, I try my best to remember as quickly as possible that it's miracle that I'm still alive. Because realistically, all 3 of us should be dead now and instead we have been given the gift of life. In other words, we tend to think less and less about what we actually went through in order to be still living our lives.

Mainly because we're physically feeling better than just before the transplant, or even afterwards but have experienced a variety of illnesses since our transplants and we're focused on the now instead of keeping our selves busy and playing catch up with this or that.

This is normal for us to be less focused on being grateful to still be alive for another day. We tend to have more activities. We revert to some of our old habits by convincing ourselves that we deserve it. And I know that for myself I would rationalize why I could do something that normally would be an innocent act such as eating some very rich foods even though in the back of my mind I know how bad that food is for me to eat.

The way I learned to accept the changes in my lifestyle is not something I would recommend because I was basically in denial that certain foods which are considered normally healthy yet for myself were harmful. I was in denial that the food wouldn't affect me at all until I was diagnosed with type 2 diabetes which is fairly common for post transplant survivors to inherit. So instead of changing my lifestyle, I instead chose not to adjust and change my eating habits.

The result was a visit to the University hospital and putting up with those daily visits of tadpole interns all crowding into my room and gawking at me as if I were some strange being from another planet. And even after I was discharged and I returned back home only to continue my bad eating habits which at the time I convinced myself as long as I ate this food in moderation i would be fine and I could avoid another visit to the hospital.

6 months later I had a return visit to the hospital and I experienced a couple of mini strokes which after going through that finally convinced me that I had to change my eating habits in a radical manner or else look forward to continuing visits to the hospital because of my diabetes and how the combination with the immuno-suppressant drug Tacrolimus, my kidneys were being adversely affected and every hospital visit resulted with my kidneys becoming more damaged each time.

I was bummed out for quite some time afterwards with the realization that I could only eat certain vegetables as well as only some fruits in order to protect my kidneys. I was bummed out because I couldn't walk up a flight of stairs any longer and I could hardly weld for more than 2 or 3 minutes at a time, that I couldn't enjoy sweets any longer, no more ice cream. I had to severely limit my protein intake which meant that I could no longer enjoy barbequed meat and I had to watch my carbs also. I wnet through the same routine prior to my transplant and I hated living like that too. and Now I got to live this way for the rest of my life?

I was pizzed off at everyone who was associated with my transplant team because I felt that they misled me into believing that after the transplant I would no longer have any food restrictions and they all lied to me! I was mad & angry, disappointed, frustrated. I wanted revenge! I mean this was really depressing me badly, and then I had an epiphany which basically told me that as long as I always remember what could have happened to me had I not chosen to go through a liver transplant and to be grateful to be alive even though being on a restricted diet wasn't the only problem I had to face head on.

I think the coping skills I developed over time with accepting that I still had been HCV positive before I met Harvoni, was helpful in transitioning my thought processes of how I approached food and was instrumental in changing my eating habits. In other words I let my conscience have a greater voice in keeping me reminded just how fragile my life is now and that I shouldn't be alive today but from the grace of God - I am.

This didn't happen overnight but, eventually it has become accepted changes that I finally got used to and the gratitude in my attitude certainly has played a major role in how I have adapted my life to new limits that were nearly impossible for me to live with. Why? Because I never gave up and never will no matter how many times I may have fallen before that becomes a memory also. I hope both of you understand where I'm coming from. Thanks for letting me share this with you. ;>)~

Billy,

I don't have CONFIRMED issues with kidneys, but pain is in my kidneys and I stopped my diuretic BP meds........

I know how easily it is to "flip out" when something else acts up as my first thought was "great, I will beat the Hep C, but my kidneys are shot now from all the darn meds"......

It is an awful mental and emotional mind game.....We will NEVER be 100%, I finally have surrendered to that.....Heck, I don't even know if I have SVR's yet.....Have doubts on that still.

Rhuematoid Arthritis is kicking in big time, the pain is awful.
Back to my reason for post:

When I was on tx, I lost my taste for red meat.....I found that I would go weeks without eating it, not realizing I was ordering other choices or just giving my Hubby my meat....I even was getting veggie taco's!!
When I figured that out, and then forced myself to eat red meat, thinking my body needed the iron and protein, I felt worse. I think my mind was having a taste for what my body needed....

After 30 years with this, sometimes I have to not even talk about Hep C and give my mind and brain a rest.

Best of luck with the kidneys.....FYI: You know that the kidneys help the liver to filter out all stuff in our blood and it will take over where the liver fails.

By switching my diuretic BP med to different Blood pressure med, my kidneys stopped hurting.....My labs did show a slight increase in some levels that had my PCP concerned.

As much as I pray you can go on and be "normal", sometimes we hve to thank God it is not worse and you are NOT getting your stomach drained....
I know this is not what you wanted to hear....Good luck and God Bless!!