First of all - through computer problems I have lost all my e-mails and contacts today - so if you know me I can't get back to you unless you contact me first with your address.
The month of March has been truly awful for us - I have been taken to hospital 3 times by ambulance and Matthew has also needed an ambulance to be called. My problems escalated from one thing to another - and at my worst I really thought I could die - scarily confirmed by my consultant this week!
Although am not at all well, I am a lot better than I was, but tests this week revealed that my main anti rejection drug is at too high a level (a truly toxic drug - SIROLIMUS - which may be adding to my problems.
Really, the computer problems are so unimportant - but it just added to my distress.I live in such a scary place - always walking the tightrope between life and death - I think that people who know me seem to forget that reality. Unfortunately, I can't!
UPDATE still trying to get the prescribed dose of medication!!!!! where are these drugs?
12th April - finally received my drugs today - production problems - scary! Still unwell though and continuing to lose weight. My gastric reflux (caused by the massive size of my own PKD kidneys and liver) is getting worse and I now dread going to bed each night in view of the cardiac arrhythmia which mainly comes on at that time - and now often lasts for over 30 hours at a time.
3 comments:
Elizabeth here, been thinking about you, came on here to see what you've been writing about lately and see that you're not doing so good. Sorry to hear that. I'll give you a ring sometime this week - if you're not up to a phone call, just tell me. Ian's sister's computer had a similar virus on it a couple of weeks ago. I fixed it using Malwarebytes, a trojan remover, free and downloadable from cnetdownloads.com. I had to download it in safemode, then run it. It cleared it completely in no time. Take care, Elizabethxx
I do hope that things get better for you.You said about walking a tightrope. Other people do forget the reality of living with long term illness unless they are also living live with it they have no idea what it is like.How can they?. It is not their fault,but a little compassion from others goes a long way.
Irene
Thanks Elizabeth and Irene - but please e-mail me so I have your address'! Today is the best I have felt for the last month, even though my drugs still haven't been altered.
Meant to be seeing retinal surgeon tomorrow but I've cancelled as I was there 4 hours last time!
Might even manage to stay up today - even though anything other than a nightie now seems HEAVY! XXX
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