[ellebeegrace]

Well we got a call from UAB today to schedule a consultation for a BMT. Apparently the hematologist didn’t listen when I told him we wanted to see an MDS specialist for a second opinion and instead he just scheduled a BMT consult.

So I just spoke with one of his nurses and she is checking with the Dr about what the referral is supposed to be. I don’t think I like this hematologist very much. I am not sure if he is inexperienced, stupid, or money hungry. But if we see a specialist at UAB maybe we won’t have to deal with the local hematologist much. Or we might have to ask to switch to a different local hematologist.

Right now I am kind of thankful for my general distrust of doctors and my love of research. My husband wouldn’t have questioned any of this, and neither would his sister who used to help him with his medical stuff. He would have gotten a BMT whether he needed it or not.

We will check out those presentations soon. Thanks for telling me about them! I will wait for a calmer day though! 😉

[ellebeegrace]

Hi Kathie, thank you for sharing y’all’s experience! That’s great that your husband responded so well to treatment! It gives me hope to read about others getting better.

I know every case is so different, and everyone responds to treatments differently. Illnesses like that are the most frustrating! I have Ehlers Danlos Syndrome myself, which isn’t life threatening with the type I have, but it is one of those illnesses where every one of us is different and there’s no one single treatment that helps everyone. I guess the plus side is that because of that I am already used to researching medical stuff.

I am sure we’ll feel better with seeing a doctor at UAB. Although even with experts I still do my own research and not blindly trust them.

This has been a stressful couple of months, first being told that the anemia was probably nothing, to being told it’s MDS but not given much info and feeling pretty lost, to the Dr seeming to downplay things but suggesting BMT. I guess everyone here can probably relate to the stressed, anxious, lost feeling though. I hate that anyone has to go through this, but I am glad to know we are not alone!

[ellebeegrace]

Thank you all for your responses, and I apologize for taking awhile to respond. This has all been a bit overwhelming, to say the least.

My husband had an appointment with our PCP this week, whom we love and trust. She said my husband’s hematologist is good and is very thorough. She suggested rescheduling the next appointment and specifically asking for the hematologist and not his nurse. So we did that, even though we’ll have to wait an extra week to get in.

Our PCP also told me to ask the hematologist for a copy of the pathology report and said if he tries to avoid giving me one, to insist on it. She said doctors here aren’t used to patients who study the test results and the disease like I do (I have a “rare” disease myself and have had to do my own research because my doctors don’t know enough about it).

I agree with y’all about going to a Center of Excellence. Our PCP did too. So we are going to ask for a referral. Our PCP said the hematologist won’t be offended and that care will be coordinated with the local hematologist.

So we feel a little better about it all. I think I just need to try to stop stressing over it all. My husband prefers knowing the bare minimum, and looks to me to tell him anything important, while I prefer to research and understand as much as I can. But I can stress myself out a lot if I don’t watch it. I don’t like unanswered questions.

Thanks again to all of you. It is good to know we’re not alone in this.

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