Monday, May 25, 2015


My Transplant Team keeps telling me how great I am doing. And, most important, my lung function is excellent and I have no rejection issues at this point. All good stuff.

However, the immunosuppressants I must take for the rest of my life are giving my kidney function fits. The most recent kidney function test was the second highest number I have recorded since January. But my Coordinator tells me there is nothing to be done about it and I am nowhere near the stage where we have to worry or send me to see the nephrologist. It's hard not to worry, but they keep reassuring me and so I must trust my team. They saved my life and they know what they are doing. I need to work on trusting them and not worrying when they tell me it's not time to do so yet.

They want me drinking LOTS of water. All the lab results show that I am dehydrated even though I am drinking over 90 oz. of water every day! They said, drink more. Drink more! There aren't enough hours in the day to drink over 100 oz. of water in the day! But I'm pushing fluids as best I can.

And this is where my IC hates my transplant & kidneys. My poor IC bladder does not like me drinking THIS much water. Of course, I always made sure since getting IC to stay well hydrated, but not to flood myself. I feel like this is flooding and my bladder is screaming at me. And with my retention, that means even more catheterizing. The labs showing that I am dehydrated are because my kidneys are not functioning properly so my body is asking for more water. 

This is hard. It's hard to drink as much water as they want me to.  It's hard not to worry about my kidney function, especially since it's one of the most common problems transplant patients must deal with, often needing dialysis and ultimately a kidney transplant. They tell me I'm not there yet. I'm anxious to see the next set of test results. I go in two weeks for another Complete Metabolic Panel which will show what my kidney function is. I am hoping it stays level and doesn't go up. That would be a good thing.

Then my next appointment with my Transplant Team is July 6 and they will check it again then. So they are monitoring me.  My Coordinator keeps telling me, no news is good news. If she has something serious or important that I need to know, she WILL call me. Otherwise, I can assume all is well. This is hard for me; I want info. It helps me and I cope better knowing no matter if it's good or bad. So I must get used to this way that they work. It's hard for me.

But this is a real challenge and they warn you before your transplant that it will be like this. They warn you of potential medical issues from all your medications. So I expected this. But no one wants to hear the words renal failure. So here's to my test results holding steady the next two times we test them.

In the meantime, my IC is making it even more challenging than it would already be. It's interrupting my sleep as I am getting up constantly to pee (even more than before, if that's possible). I was already on Disability for my IC, so it was pretty bad. All this water isn't helping. But I have no choice and I will do my best to follow my instructions and be a compliant patient. I've been given the greatest gift, so I will do what I am told and everything I can to insure a successful outcome.

I already had IC when I came down with this mysterious lung disease. Seriously?! I didn't have enough medical woes (IC, Epilepsy, Cardiac Issues to name a few) that I needed another! And of course it had to be life threatening; if I didn't get a transplant, I would die. Gee, I wasn't having enough fun already, I needed this too!

Well, I never imagined I could get through a major operation as big as a Lung Transplant, the post surgery Rehab and all that goes with being a transplant patient. But I am doing it. So my IC will just have to take a back seat while I try to keep my kidneys functioning. I'll cope; my psychologist is a big help.

Sometimes I feel my body has turned on me and I just want to give up. But once I asked and was granted acceptance to being a transplant recipient, giving up was not an option. So I fight on; every day. I take my meds on schedule, I work on my exercise and my diet. And, yes, I drink all that water! I think I'm going to float away. 

I envision my bladder cursing at my lung and my kidneys. My poor IC bladder is not happy. Well, that's life. I'll have to cope with it.

My Water Bottle!


  1. Still following your recovery. Thanks for posting details.
    Congratulations on reaching the six month post transplant mark.
    You have shown amazing strength and determination.

    1. Thank you for kind words of support and encouragement!