Wednesday, May 16, 2018

Crazy tummy and brilliant lung function surprise!

Since my last blog post I've pretty much been spending all of my time battling an upset stomach. At first I thought it was a tummy bug. I went for bloods anyway which didn't show anything significant apart from my kidneys battling with the Advagraf (Tacrolimus - anti-rejection med which I've been on for 10.5 years now, at differing doses), which is nothing new... seemingly a little bit more than usual due to dehydration. I saw my Dr on the 4th of May and he gave me a script for stopping the Advagraf and changing to Certican (Everolimus - I was on this for 5 years prior to my second transplant) and Neoral (Cyclosporine). This was very late on a Friday, so I managed to get the new pills by Tuesday, and started it on Wednesday. During this time my stomach situation had worsened quite a bit, so much so that I ended up going to casualty on Wednesday morning, feeling nauseous, unable to vomit (due to my Nissen Funduplication operation) and seriously dehydrated. My kidney function and other levels were way worse, except for my CRP (infection count) which was only 2, confirming that this must be viral.

It was also the day that I'd finally started the Certican and Neoral, so I was hoping the kidneys would start to love me a bit more again finally. Sidebar: it was always the plan to take me off Advagraf at 6 months post transplant and get me back on Certican, as the side effects are just way less for me personally, but because it "prevents healing" you can't take it straight after transplant. This drug was also the reason my drains drained for longer post second transplant, as it was still in my system so those drains were a bit slow to heal. Nevertheless I really like this med... my kidney function is usually normal on this, blood sugar better, I don't tremble the whole time... hair doesn't fall out... (Disclaimer: this is MY experience... don't go running to your Dr wanting to change your meds because I prefer this one).

Back to my digestive problems... none of the meds they gave me in casualty did ANYTHING to make it better. My Dr, who was away on holiday for a few days messaged me to let me know I must go for bloods again on Monday. I saw the Dr again yesterday. Luckily the results were back to "reasonable" compared to the casualty results, so I'm getting better. He thinks it's been a reaction between the Advagraf and the Cellcept (ANOTHER immune suppressant I'm on), which can apparently happen sometimes. I guess being on super high doses of both like me didn't help either. It seems like those extra 4 days that I was still on Advagraf while waiting for the new meds to arrive pushed my stomach over the edge basically. I've lost about 6kg in total in the last 2.5 weeks, which is a lot. Of course then I also get a cold... probably from being weak after 2 weeks of diarrhea! Just great!

So there's the Mauritius trip that's happening on Sunday afternoon... Clearly I can't go if I'm not in pretty good shape. So I'll be going for bloods again on Friday, and until then it's JUST rest and REHYDRATION. Working so hard on this now and drinking gross meds that make me gag for minutes after taking it because it's so gross! Hoping and praying I'm right as rain by Saturday!

The highlight of May so far, and especially of this week, was my lung function test results yesterday. Since my retransplant, and even for a while before that, I've never posted lung function figures anymore, as I've realised some patients almost get obsessed with comparing numbers, when you absolutely cannot compare... They measure lungs that AREN'T yours, essentially, to the predicted value for your age, weight, height etc... so there are SO MANY variables and some people with a personal best lung function of 60% can end up living for over 10 years with those stable figures, whereas I've known people who blew over 100% and died within 2 years. So STABILITY is the key factor, not how high your stats are. That being said... Yesterday all my focus was on my misbehaving tummy, so I didn't put that much thought into the lung function... I just wanted it to be stable, as always. however I was SUPER surprised when it had gone up by 5% in the last 10 DAYS to my record high with these new beauties of FEV1% of 94%! I haven't seen those kinds of numbers since 2012! How insane... and amazing.

Had a great Mother's Day and saw Adriaan quite a bit this past weekend, so that was great. No other news.... just trying to sort this body out for the Island Week of a lifetime!



2 comments:

LeeYax said...

hello my name is lee, I have a heart transplant blog , would you like to link blogs, thx lee
http://www.lees-heart-transplant-journey.com/

Anonymous said...

Praying you get to go on the trip, Alice. Awesome lung function numbers!!!
Sherry Boyle