persephone Posted August 5, 2005 Report Share Posted August 5, 2005 Hi all, Sorry I've been away for a bit...was away at a friend's for a few days, taking it easy.Well--news:Today I found out I got FULL funding for Oxford from the AHRC )Arts and Humanities Research Council)--they will cover ALL my fees and living costs for the year. WOOHOO! However, everything has its price. My Papa fell on Monday and broke his hip (remember in June he was given Florinef and it led to a heart attack as his potassium levels fell?) He had an operation on Wednesday but is totally unable to stay conscious or hold a conversation I can't bear to go in and see him- he's in the same ward of the SAME hospital that was almost responsible for his death The nurses don't show any compassion or care; he's had one meal since he went in on Monday. They haven't cleaned his mouth, cared for him or been kind at all. And whenever we try and tell anyone they just don't care....including Doctors. They have him on Kapake for the pain- which I took at age 12 for period cramp! Jeez, the guy's broken his HIP! I could really KILL people who are so callous. I had a letter from Professor Mathias today saying that he thinks I would be better off having 'locally based' care under a cardiologist. But he's the expert- my cardiologist has never treated POTS before! So in other words, no one is going to treat me before I start at Oxford. And the POTS is more unpredictable now than ever--Last week I got the train to Hereford to visit a friend and it was awful- I fainted on the train and got taken to hospital by paramedics. My pulse was down to 39 and up to 244 but as usual, because the doctors didn't know what to do they sent me out. Which was useless. I went to see my GP a couple days before that, and tipped over in his office--my mum had to come over with my wheelchair because I just couldn't stand up How can doctors leave me in this state? A young woman in her twenties. The mind boggles.My mum and dad are starting to wonder if they should try and get me to Dr Grubb in Ohio (that is where he's based, isn't it?) But we have NO IDEA of what to expect-- what if I get blown out at the last minute, like Ernie, after booking flights etc? We also relaly don't have that kind of money--the treatments must be SO expensive.It's just that Midodrine is NOT cutting it for me. Nor are the betablockersI don't understand why someone who is an expert is not interested in helping me get better and see this through- why am I being passed to someone who's never come across or treated POTS before? It's SILLY, it makes no sense. I just feel let down- another doctor refuses to help. I guess as the saying goes, another one bites the dust.I just have to hope the POTS magically disappears before term starts in October! Quote Link to comment Share on other sites More sharing options...
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