U of M (Michigan) Aplastic Anemia Specialist??

[prayingrbc]

Anyone know of any specialists in Aplastic Anemia at U of M Hospital in Ann Arbor Michigan? or anywhere else in that vicinity?

[sues]

Hi I'm Susan and am currently being treated for severe aplastic anemia at karmanos in Detroit. My doctors name is Abhinav Deol M.D. He is a assistant professor of Oncology. He tries to explain everything well. Treatment is not easy, but hopefully it works.

[prayingrbc]

Thanks Susan. From what I have found he seems to specialize in Oncology rather than a focus on Aplastic Anemia. I have found a specialist for AA in Cleveland, OH and NIH in Maryland, but am looking for a doc closer to home if at all possible. It's such a rare blood disorder I know, but hoping to find a doc with more focus in AA specifically.

[triumphe64]

All hematologists are oncologists.
The ones at NIH work mostly with AA or related diseases. - And it's FREE.

[sues]

Your right I just went through the atg treatment at karmanos and I think they do not do it very much. I'm currently on cyclosporine and going 3 times a week for blood checks and transfusions. I think they are giving me the standard treatments and are taking good care of me. Looks like the only real cure is bone marrow transplant and they have me in the registry to find me a donor since I have no sibling donor.

[Margaret W]

Hi! After my counts crashed last fall, I was advised by my DMC hematologist to go to the NIH, but I really didn't have the energy to do that. My records had already been reviewed there, anyway. This doctor then referred me to Dr. Dale Bixby at U-M and I've been seeing him since January. Dr. Bixby has an amazing brain! He may be the smartest hematologist I've ever seen, and to go with that, he has a tremendous bedside manner as well. I've been having a lot of fatigue, shortness of breath and dizziness and Dr. Bixby has sent me for evaluation for pulmonary edema (I had two blood clots, one in each lung, due to being heavily transfused during the C-section delivery of my son back in the '70s). He is able to "connect dots" very quickly and see the big picture of every patient during the evaluation of their aplastic anemia.

It should be noted that there is a whole new culture of "niceness" at the University of Michigan Medical Center that was notably absent when I first started going there as an aplastic anemia patient in the early '70s.

A HUGE problem I'm having lately is that despite the way I feel, most people (family and friends) think I'm a hypochondriac and a faker. I wonder if anyone else deals with that. I am SO TIRED of being told that all I need to do is take iron pills, eat beets, exercise more (avascular necrosis in all major joints from the 16 days of ATG that I had in 1987 is a bar to that). I'm tired of being told to just get off my rear and "get busy." I don't know if anyone else has that problem, but I'm extremely frustrated with it. I'm a caretaker to my ill husband (Parkinson's, Asperger's and ileitis) and his doctors expect me to help him out -- because they don't know what aplastic anemia is. This is approaching the breaking point for me, and all people can say is, "We all knew she was faking those blood problems she claimed she had."

Anyway, thanks just for reading this, and I did want to give people a heads-up as to Dr. Dale Bixby.

Margaret

[Marlene]

Sorry that your SAA is back. It is difficult for people to wrap their head around something that sounds like benign condition. Our family and friends understood mostly because they visited John when he was in the hospital knocking on death's door. They saw how serious this disease is.

For everyone else, instead of trying to explain what SAA is, we would just say he was diagnosed with a catastrophic bone marrow failure disease which means his bone marrow is not making any blood. They understood that better than SAA even if you explained what it was.

Are you able to get any help to care for your husband?

[Margaret W]

Marlene, thanks so much for your reply. He's being evaluated right now... He's a Vietnam veteran with ties to veterans' organizations - but sometimes those things are more of a pain than a help. His Asperger's causes him to say and do odd things sometimes. (Like, often. ) I also think he was badly affected by Agent Orange.

You certainly did and explained things the right way to your family and friends...

Only two people visited me in the hospital during my ATG treatment because my sister had told people that I "didn't need visitors." When you live with something for 40+ years and people say, "You're fine. You hardly ever get a cold. Why don't you see a psychiatrist instead of a hematologist?" then you get a bit discouraged. I'll pull out of this power dive, somehow. This year has been very, very rough.

Again, thank you SO MUCH.

[RichardM]

Originally Posted by Margaret W

Hi! After my counts crashed last fall, I was advised by my DMC hematologist to go to the NIH, but I really didn't have the energy to do that. My records had already been reviewed there, anyway. This doctor then referred me to Dr. Dale Bixby at U-M and I've been seeing him since January. Dr. Bixby has an amazing brain! He may be the smartest hematologist I've ever seen, and to go with that, he has a tremendous bedside manner as well. I've been having a lot of fatigue, shortness of breath and dizziness and Dr. Bixby has sent me for evaluation for pulmonary edema (I had two blood clots, one in each lung, due to being heavily transfused during the C-section delivery of my son back in the '70s). He is able to "connect dots" very quickly and see the big picture of every patient during the evaluation of their aplastic anemia.

It should be noted that there is a whole new culture of "niceness" at the University of Michigan Medical Center that was notably absent when I first started going there as an aplastic anemia patient in the early '70s.

A HUGE problem I'm having lately is that despite the way I feel, most people (family and friends) think I'm a hypochondriac and a faker. I wonder if anyone else deals with that. I am SO TIRED of being told that all I need to do is take iron pills, eat beets, exercise more (avascular necrosis in all major joints from the 16 days of ATG that I had in 1987 is a bar to that). I'm tired of being told to just get off my rear and "get busy." I don't know if anyone else has that problem, but I'm extremely frustrated with it. I'm a caretaker to my ill husband (Parkinson's, Asperger's and ileitis) and his doctors expect me to help him out -- because they don't know what aplastic anemia is. This is approaching the breaking point for me, and all people can say is, "We all knew she was faking those blood problems she claimed she had."

Anyway, thanks just for reading this, and I did want to give people a heads-up as to Dr. Dale Bixby.

Margaret

I agree on Dr. Bixby and C.S. Mott.