Some of you may be Facebook friends and might have noticed over the past few days that I have been keeping you up to date about what has been going on health wise, but for those of you that don't know this is just a quick blog to let you know how things are going.
On Wednesday I went for routine blood tests, to check all the usual things including my Tacrolimus levels, Tacrolimus is one of my imuno-suppressant (anti-rejection) drugs. The normal levels are between 7-10 and I have never really had any major problems regarding this before. To check the Tac levels you have to have your blood taken before you take your morning dose, so for me this is before 10 o clock, this is to check how much tac is left in your system from the dose taken the night (12hours) before.
I had my blood test and never really thought anything of it, nothing has ever come back majorly wrong before, I went out for the day and returned home to an answerphone message from the doctor. I usually don't even bother ringing up for my results (maybe a bit lazy) because I always think that if there is something dodgy happening, someone will ring me although I had never actually thought about it before. My heart sank a bit when I heard something was up, this is my first proper blip since transplant, my tac level was 30! I have heard of people having major shakes, sickness, diarrhoea, and even hallucinations from readings much lower than this so I immediately thought that it was a rogue result.
Phonecalls back and to, to the hospital took place and I was told not to take my Tacrolimus that night and to go for bloods the next morning (again before tac) I kept telling myself that the result must have been a mistake, but it did play on my mind quite a bit. I rang up after 6pm this is when the levels are usually back only to find that the level was still high but had come down a bit and was now 20. At this time my Creatinine was also playing up a bit which was also a bit worrying, well worrying to me anyway, doctors and nurses I spoke to didn't seem concerned so that reassured me a bit. Again I was told not to take my Tacrolimus and to return again the following morning! I went out for the day again and tried not to think about it too much, I rang up after 6pm again and found out that my level was now 10 and back within its normal range, to say I was relieved was an understatement. My creatinine was on its way down as well which was a good sign!
I was told I could start taking my normal dose of Tacrolimus again and I am due in clinic on Monday afternoon anyway. Before my main clinic appointments I have to do a 24 hour urine collection, I can't believe I am actually writing this, but hey this is what you get when you have a kidney transplant, its all talk about wee! I then have to give a small urine sample and also get my blood tests done as well. My tacrolimus levels can't be checked at these clinic appointments as they are in the afternoon and I will have already taken my tablets by then so the levels won't be accurate, this is why I usually go for my levels a couple of days before (hence going on Wednesday). So I will have to have a blood test when I go to clinic on Monday to check my clearence in correlation with my 24hour sample and also may have to go back on Tuesday or sometime next week to check my Tacrolimus levels are back on track and my creatinine has settled down too!
So there you go! I am totally fine, I haven't been feeling ill whatsoever! It has been a bit of a pain having to go back every day for bloods, but its for my own good (and the good of Ivy, My kidney). It just puts things into perspective a bit more, maybe I was taking for granted that everything was going so well, not taking for granted the things I am doing or enjoying, But just taking advantage of feeling so well and healthy again.
It just shows you that things can change so quickly, I am not about to take this chance for granted and will be thankful for every minute.
Glad to hear that your Tac level soon came down Holly. I know nothing about creatinine (apart from that it's something to do with the kidneys), but I'm glad that is stabilising too. Pleased to hear that you're still feeling well and I hope all goes ok at your clinic tomorrow.
ReplyDeleteTake care,
Moll x x
So glad to hear you are ok and fingers crossed that it was a random thing that won't cause you any more problems. Must have been very worrying for you though! Sending hugs xxx
ReplyDeleteHi Holly,
ReplyDeleteBumped into your site while looking for something else and it's nice to find someone who is doing well after their transplant.
Your tac level was quite surprising. Good to know that everything turned out ok. I actually have the opposite, low levels, which require me to take higher doses than others.