Haemachromatosis Hell
Just been for my 22nd venesection after a 11 week break and am now nervously awaiting the result of the ferritin analysis. Wolverhampton Hostpital Trust do not, in their wisdom, use the Transferritin Saturation Ratio so it's difficult to know exactly where one is in the treatment. All the more stress!
Mike.
Mike.
Replies
Mike, I have read a few of your comments and am sorry to hear that you have had such a rough time. I hope 2015 is a better year for you. Christine
Thank you Christine, in fact I went for my 24th. Venesection on Thursday Jan.8 and this time it was not too bad. My main problem is psychological, for some reason I am phobic about going for the sessions as some are about snakes or spiders, there\'s no logic, it just happens!
The result is that they have to stop venesection as I become so ill my body won\'t take it. they give me a rest which helps me psychologically, but of course my ferritin levels go back up. It\'s like catch 22!
It\'s been 2 years and 24 sessions now. I thought I would be onto a maintenance regime by now, but no.
Ferritin today should be in the 350 region, so the next session should drop it to around 250, so if I can stand another in a month we may get there!
Anyway, I assume you have the same problems as you found me on the HH+ website, how is your treatment going any ill effects?
I don\'t tend to get on this site very often as I use Facebook on my phone. If you wish we can chat there, My FB page is Mike Kenmir, my email is mikekenmir@gmail.com
Best wishes and look forward to hearing from you again,
Mike.
Just found your profile and had a read. I was 3900 for ferritin when I was diagnosed so you are lucky they caught you early. It seems to affect every one differently. The first thing I did after receiving the diagnosis was ring my sister. She got tested and was also HH+, all alleles, but she went though the regime without turning a hair!
She cannot understand why I make a fuss!
Hope you feel better and that I hear of your progress soon,
Mike Kenmir.
Mike, Yes, it was caught relatively early and I do feel lucky that we are living in a time where there is good medical diagnosis and treatment, although I don\'t feel so lucky when I am having the venesections. About a year ago I had a gallstone attack then had an ultrasound scan. It seemed they were spending more time scanning my liver than my gall bladder. The liver showed inflammation so I was sent firstly for blood tests then secondly a genetic test and the homozygous HH showed up. If I had not had the gallstone problem I would have become progressively more ill - and looking back, I was not well with this by easter. I have problems with one hip and my feet which have too much degeneration to mend, but all other joint pains and many other symptoms have gone. My ferritin levels are around 150 now and the liver inflammation has reduced. I have just been put on a three-weekly venesection regime until easter. A lot of my hair has fallen out since I started treatment and I get breathless going upstairs or walking quickly. Otherwise I am quite well - much better than before treatment. Some of the venesections are very painful despite the use of anaesthetic cream. I get a bit tired afterwards but I try not to do too much in the same evening and drink plenty. I get quite hungry too - I never snack much, but I crave toast and jam late in the evening after venesections (and I have it too as it is a bit of a miserable evening). Once after treatment I went back to work and managed to lock myself out of my office, my car and my house and my partner\'s mobile number was on my mobile - locked in my office. He was in the middle of a golf course in Kent. I had to ring a colleague who happened to have his number for her to ring him. So now I don\'t go back to work afterwards. I am on Facebook but I rarely use it so I\'ll email you. .
Hi, going for V next Thurs., last ferretin 610. Getting cheesed now. email is
mikekenmir@gmail.com,but FB is better. Try it.
Miker.