Update on my pure red cell aplasia

[triumphe64]

That is really great. It is so important to go to the best doctors around because this is so complicated. It sounds like you are on the right track.

[Lbrown]

Yeah, the trick is finding the best doctors. How is a mere mortal supposed to know where to look?

Deb

[Neil Cuadra]

Originally Posted by Lbrown

Yeah, the trick is finding the best doctors. How is a mere mortal supposed to know where to look?

Deb

Deb,

It's hard enough for aplastic anemia patients to know when they have the best doctor, but even tougher for pure red cell aplasia patients. I'm glad you got to meet with Dr. Wells, who is one of the medical advisors to the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC).

To answer your question, new patients in Canada can ask AAMAC for help finding a doctor. I think it's smart for patients to go to a major treatment center, especially one known for AA treatment and research. Among the best known in Canada are Sunnybrook Health Sciences Centre (where Dr. Wells is) and Princess Margaret Hospital, both in Toronto. If patients need a doctor in their own province, AAMAC and its provincial chapters are again a good resource.

I don't know if everyone would agree, but I think the focus should be on finding the right treatment center, because once you are at the right treatment center you'll have the benefit of their joint expertise, and probably get a doctor with specific expertise as well.

[Lbrown]

Thanks for the link Neil. I looked at the website and it doesn't make any mention of major treatment centers. I only found that out through your website here. I didn't even know to look for that. It just goes to show you really need to do your own research and be your own advocate, which is not always easy when you are sick.

Deb

[Neil Cuadra]

Originally Posted by Lbrown

Thanks for the link Neil. I looked at the website and it doesn't make any mention of major treatment centers. I only found that out through your website here. I didn't even know to look for that. It just goes to show you really need to do your own research and be your own advocate, which is not always easy when you are sick.

Deb

The best way to get help from AAMAC is directly from their volunteers by phone or email. They are very friendly and helpful. Here is the contact info.

[Lbrown]

I went in yesterday for a BMB. He didn't have a problem getting a good sample and aspirate. Hopefully that will give some answers.

I am starting back to work on Monday, now that I planned a whole bunch of stuff for next week.

Deb

[Lbrown]

Well seems like I don't technically have aplastic anemia, but given another year or two it probably would be. My platelets were low in the last test, but at 125k it's not bad. My WBC is still holding at 1.7, ANC .7, and HGB continuing to plummet 10 points+ a week. He said there were almost no red cell precursors.

Dr Wells recommended ATG. I will also get tacrolimus instead of cyclosporine due to all the bad reactions I had on cyclosporine. He said there's a very good chance all 3 cell lines will recover. So I'm not waiting anymore, except for allergy tests for horse & rabbit before proceeding with ATG, and I don't know how long it will be for that. Otherwise, I'll be going to Toronto for treatment ASAP.

Now to explain this to my manager at work tomorrow, who doesn't speak English very well. Wish me luck - I just started back to work Apr 26 on a new project. I am a term employee hoping to switch to full time permanent soon, but I'm a little worried, especially to try to explain I need 2 weeks off but I am not sure if it will be next week or next month.

Deb

[Lbrown]

bump?

I am now awaiting allergy testing. I went to an allergist in Toronto who said they can only do allergy testing for ATG at a hospital - Sunnybrook. Apparently Dr Wells has been arguing with the drug safety clinic there to test me,, they said I had to go to an allergist. Luckily the allergist is affiliated with Sunnybrook, and this gives Dr Wells more ammo to get me in. But I feel like a pawn.