Anyone out there got any experience of Haemolytic Anaemia? NOT autoimmune haemolytic anaemia (AIHA).
Had 4 bags of blood last weekend (made me feel much better - vampire!) but the numerous causes for this rare condition are causing a bit of head scratching. All I know is that it is not due to an autoimmune response.
Hi Bp,
So sorry you are going through this. I'm just here to try to offer support ... and to hope fervently that someone can answer with up-to-the-minute info.
I'm afraid I have not heard of this, and cannot contribute much. I'll search around, but as you are so good at doing that yourself I will probably just be teaching you to suck eggs.
Have you tried asking your hospital PBC person? (Mine was always okay with emails). Or even try the 'PBC F' people???
Hope you get some answers and feel safe and well soon.
Gritty xx
Hi Gritty,
Thank you so much!
I knew the post was a long shot as I'd already searched HU and come up with very little.
Consultant (and me!) are hopeful that it's an enzyme based reaction and it can be sorted/coped with.
Feel so much better every day. But my heart was a bit wobbly for a few days. I know what mountain climbers feel with oxygen depletion now!
I was at home and knew I had to do something quickly so first I called 111/ambulance, then I called hubby - in that order!
I too am so sorry that you are going through this. Are you sure about your diagnosis? Have you considered going for another opinion/consultation?
Hi Fran,
Thank you for your kind words. The diagnosis of HA based on blood tests and physical symptoms is fortunately an easy and solid diagnosis. The diagnosis of the cause of the HA is a little harder and slower. Many of the more specialist blood tests can only be carried out at certain laboratories in the UK and some some tests take days, not hours to complete. Just a question of working through the tests and elimination. Hopefully, eventually (may take a month) I may get a firm answer. There may be head scratching if all the tests are inconclusive but this possibility and all the tests happen for so many people in so many illnesses.
I’m quite happy with my consultant (he is very switched on) - especially as at this stage, it’s just looking at plain facts; the results of the tests.
I know it is while since you posted this, but I have just come across it and see no one replying has experience of haemolytic anaemia. I too have it (and think of myself as a vampire!). I had a mitral valve replacement nearly 3 years ago and then due to an allergic reaction to a drug, burst a hole in one of my stitches in the valve. This hole chews red blood cells, but the cardiologists don't think the hole is big enough to explain my level of anaemia. The gastro-enterologists have probed me from both ends to see if I am losing blood through my digestive system and reckon it is not their fault either although I am still waiting for more blood test results from them. Next step the haematologist.
Meanwhile, I am permanently tired and trying to balance an interesting life against exhaustion. No doubt you understand. Hoping for another transfusion this week, but the time I was given 4 units at a time, I peed a lot of it straight out!
Hi FMW62,
Waited to reply as I was waiting for test results and it's come back as G6PD deficient. So hopefully I should be OK now as long as I avoid fava beans and a whole load of drugs! My heart is still very thumpy though. Hoping that will gradually settle down and my urine's still a frothy, so kidneys haven't quite recovered yet.
Have you seen a haemotologist yet?
The lack of energy / oxygen was staggering. Makes you understand what high-altitude climbers go through. Lying in bed and trying to calculate if I could physically walk to the bathroom...
What colour was your pee? When I said the colour of a Scottish stream to the doctor they laughed.
The haematologist should get to the bottom of your anaemia; I've been so impressed by my local department. Let me know!
Hi Badpiglet
Its good to heart that your problem may have been diagnosed.
My (Scottish) heart surgeon said he was only interested in the colour of my pee if it was like claret or burgundy, not interested in rose!
I've not seen the haematologist, but it seems they have all had a multi-disciplinary team meeting about me and decided that my problem is that the artificial heart valve doesn't suit me, apparently this is very rare. The alternatives are re-operating and replacing it with a pig's valve (not recommended!) or giving me a procedure to block the hole I blew in the valve stitch. This procedure is like an angiogram where they inset a probe through your groin and work it up from there. It seems I am producing red blood cells at twice the normal rate and so they reckon solving one problem should be enough.
My lack of energy is probably not nearly as bad as yours. I generally lead a relatively normal life for a limited part of each day and never go out in the evening, but I know that if I overdo things, not only tiredness but also depression and bad temper set in. I am more likely to drop things and the sweary words that pop out are worse!
When I first had medical problems, I suppose I had the naïve assumption that just as you take a car to the mechanic to fix, you can take your body to the doctor. We are all so different!
Good luck
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New to the group
