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Old 06-08-2006, 06:08 AM   #6
joglynne
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Join Date: May 2005
Location: manchester, uk
Posts: 14
Re: London Calling ..............!

I too face the prospect of a spleenectomy as a result of AIHA (in remission for 14 months).

My father was the first person in England to survive the removal of his spleen. This was in the1920s. He was never given any form of drugs following the operation and led a totally normal life. He didn't suffer any more illness than seemed normal and was always the first to get over the effects of any colds etc. He had major surgery for stomach cancer at 82 and had a pacemaker fitted at 85. Sadly he died last October at age 93 as the result of compications following a fall nothing that having a sleen could have prevented.

I realise that we are all different but my father's unfailing sense of humour helped get me through my black days of early AIHA, and I am hoping that our shared genetics will get me through a spleenectomy.

Good luck and love to everybody out there, I don't post much but the reasurance and information I get from reading all your posts has been incredible.

Jo



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Old 06-08-2006, 09:50 AM   #7
belindabea
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Join Date: May 2006
Location: London
Posts: 8
Smile Re: London Calling ..............!

Hi Joglynne,

I found your reply very interesting. The fact that your father had a speenectomy and lived a full and active life without drugs is very reassuring. He sounds like a wonderful father who I am sure is sadly missed.
Did your father suffer with AIHA too?
How long have you had the condition and are you on any medication?
At what level is your Hb normally at?
I hope you don`t mind me asking all these questions, but I have yet to meet someone with the condition!
Many thanks,

Belindabea
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Old 06-11-2006, 11:23 AM   #8
joglynne
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Join Date: May 2005
Location: manchester, uk
Posts: 14
Re: London Calling ..............!

Hi Belindabea,

In order of your asking, No Dad never had AIHA,. Following his fall he was admitted to hospital. It took weeks but eventually it was established that he was having a series of minute strokes that were most probably responsible for all his symptoms (dementia & Parkinson’s). There was nothing we could do, Dad had made a living will, he did not want to be bedridden or a living vegetable or to be kept alive for the sake of it. In one lucid moment he asked me and his Consultant to let him go. He died quietly and with dignity. I miss him.

I developed AIHA, I think after a throat infection, some 2 ˝ years ago. The throat infection left me feeling tired and lethargic, my son pointed out that people normally only got out of breath going up stairs not down as was happening to me and that maybe seeing the GP would be sensible. I have never really been ill before and my worry must have made the receptionist listen to me because I was given an immediate appointment (at 9am).
To cut along story short, the GP sent me straight to hospital for blood tests (9.30am) and by the time I returned home at 10.30am the GP ‘phoned me to get back to hospital as they wanted to admit me . My RBC was 5 and it was decided to give me a blood transfusion, as I am AB Rh (D) neg this took 3 days to arrive and by then my Consultant was trying me on a cocktail of drugs which he hoped would work. He decided hold off giving me the transfusion for 48 hours, unfortunately by then my RBC was down to 3 I was unable to stand on my own and had developed a heart murmur. One week down the line it still was not established what was wrong but I was given a blood transfusion. I could have fought Mohammed Ali with a hand tied behind my back. I had soooo much energy. I was discharged from hospital but retuned as a day patient for a full body scan (cancer) and repeated blood tests. When everything else was ruled out I was told I had AIHA.

I think I started on PPREDNISONE at 20mg a day with a side order of 5mg FOLIC ACID. The steroids were gradually reduced over a period of 14 months. About 3 months after I had started on the steroids I was prescribed ALENDRONIC ACID (FOSAMAX) and I took a 70mg tablet once a week. This was to counteract the effect steroids can have on bone density… I think.

From what I have read I got off lightly with both the AIHA and the steroids. I have been off all meds for 14 months, I had blood tests every 4 weeks for about 6 months and now they are about every 2 months. My RBC averages at 12/13 and I am pretty much back to normal although I have been told that I will have AIHA for the rest of my life.

This has been a right screed, I hope some of it may have helped. There are more of us out there than you think. Let us know how you are doing, we may never actually meet another AIHA victim in person but hugs and love can be sent over the net.

Jo
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Old 06-13-2006, 04:58 AM   #9
belindabea
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Join Date: May 2006
Location: London
Posts: 8
Re: London Calling ..............!

Hi Jolynne,

Thank you for taking the time to write such a detailed and very useful reply.
My AIHA began after I contracted glandular fever, so it was interesting to know yours began after a throat infection.
It would be great to understand why the immune system suddenly starts acting up and what are the exact reasons for it doing so.
Thanks for all your help and good wishes.

Belindabea
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Old 09-20-2006, 03:26 AM   #10
jbee6
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Join Date: Mar 2004
Location: Australia QLD
Posts: 41
Re: London Calling ..............!

I had my spleen removed in 97 after discovering my aIHA earlier that year. The removal of my spleen did nothing to help my AIHA however my doctors assured me it does fix 2 in 3 people. I was just that unlucky one. I now have get a flu shot every year and i still catch every flu/wog/bug that is going round. However it's a process of elimination and that was the first to go after prednisone alone doesn't work for me. A combo of it seems to be working though and I have been much better since getting my gall out touch wood. I had throat infection at the very beginning too and extreme pain to the belly. Have been in remission for under a year now on meds and counting with bloods around 11 they don't hospitalise or tranfuse unless I drop below 8. Nice to meet you. Just letting you know my experiences, have also been on the threads AIHA how long as les44 suggests, great reading and everybody is different and has different needs and wants but there is some comfort in knowing you're not the only one.

My doctor calls me his star patient cos I was bloody sick and have gotten 'better'. Just the mental side of me needs to stay strong and hopefully soon I can get back to work full time and one day hopefully have children. I'm only 25. I just hope all of this stuff doesn't effect that dream. I'm not ready to discuss this with my doctor as my mother still comes to every doctors session. I know this is an idiopathic disease but does anybody have anyone in their family who also has it? i.e. may be hereditary, I want my brother to get his twin girls checked for the antibodies but he said he'd rather not know. I also want to go overseas again, was lucky enough to travel through Europe and visit london whilst on meds this way i knew i wasn't going to crash whilst away. Sorry if i ramble but after sort of being kinda well blood wise for year people forget my everyday struggles and the daily 18-23 tablets i must take. I just need to vent. Thanks for listening.
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