dealing with doctors!

[Grifmat]

So I went to the doctor with my mom yesterday. He is not a specialist but is consulting with the doctor at Yale, who my mom has only seen once. He is the doctor who first dx my mom with CLL and then switched it to AA and then the Yale doctor said he didn't think it was either. I had a lot of questions and he was annoyed that I had so many. They were legitimate questions and educated questions. I had a feeling my mom was taking a very high dose of Gengraf and sure enough her levels (I think they are called troughs) were high. They are supposed to be between 200 - 400 and they were at 580. I'm not sure how high that is but he did lower her dosage. When I asked him about taking magnesium and limiting potassium he literally blew me off and said "we check her magnesium levels and there are no restrictions on her diet"...then he walked out! I do not feel comfortable with him at all. I haven't met the other doctor at Yale yet but I'm not sure the team of doctors that are caring for my mother are what is best for her. I'm researching The Dana Farber Institute in Boston which is the same distance as Yale. About an hour away. Has anyone ever dealt with this sort of treatment from their doctors? Have you had to switch? Worked with the Dana Farber Institute?? I just want to make sure she is getting all that she needs and that these doctors aren't doing more harm than good.

[triumphe64]

The PRCA that I have is very rare. My first oncologist was doing her best and she was consulting with a doctor at the medical school. I didn't know any better.

Once I found a good doctor (actually two) things were so much better. Those mistakes with the meds etc. no longer existed and I started to improve.

These are rare diseases. Don't be someone for the doctor to learn on.

Try this guy
http://doctors.dana-farber.org/direc...ict_id=0000298

or this guy
http://doctors.dana-farber.org/direc...ict_id=2178766

at Dana Farber.

[Grifmat]

Thank you! You said a mouth full...dont be someone for the doctor to learn on. A doctor who knows what he's doing and has your best interest at heart should not get defensive when you ask questions about your very terrifying condition. It made me very uncomfortable that he was the man who would be saving my mother's life....not good. Thank you for the links to doctors at Dana Farber. I appreciate it.

[Hopeful]

Grifmet,

Here is a handy Cyclosporine guidebook. It was written for another autoimmune condition but is a very thorough source of information on dosage and side effects. Note that it recommends that trough measurement be between 50-200ug/L. Hopefully, they lowered her dosage considerably. 580 is too high for a trough.

http://www.argbc.ca/files/Cyclospori...Physicians.pdf

Dana Farber is a recognized MDS center of Excellence. So, in that respect, it could be a better choice over Yale.

As triumph said, life is so much easier when you have a doctor that is an expert in the field. I wouldn't go back to her current one.

With regards to magnesium...it took a few years for my deficiency to show up. Everyone is different and as long as they are monitoring her, there is no need to worry. Make sure she avoids grapefruit. That is a known restriction for her diet!

[Grifmat]

Thank you hopeful. I'm not even sure what he was talking about when he said her "levels" were too high. He just said they should be between 200 and 400 and her's were at 580. I'm not even sure if they were troughs...he just called them levels and wasn't very forth coming with information. It was as if he didn't want me to know too much...which I think is ridiculous! Thank you for the link...I will definately check it out and pass on the info to my mom. We will see the doctor at Yale...he is a specialist in hematology and myelodysplasia syndromes and blood disorders but there is no reason why we shouldn't be consulting or getting a second opinion at Dana Farber. Yesterday when we left the doctor's office my mom said he was in a hurry because he had other patients he needed to get to....but, I told her, we only have one you.

[Chirley]

Hi, my current haematologist (who readily admits he knows nothing about my disease), is like that too. If I ask a question he doesn't know the answer to, I can almost see him stamping his foot and having a tantrum on the inside. Externally, he simply walks off without answering. I really don't like him at all but he is the ONLY haematologist at the hospital and the daycare treatment centre is wonderful.

Regards

Chirley

[Grifmat]

These doctors DO know that they are making decisions that affect the lives of many people...don't they? UGH...it's so frustrating. We did have some promising news though today. The doctor at Yale called the other doctor and told him that we are on the right track and that we need to keep doing exactly what we are doing. They also lowered my mom's gengraf dosage by another 200mg. I am feeling much better about things. I did some research on the Yale doctor and he's pretty impressive. He's from Russia and he specializes in just bone marrow failure diseases and blood disorders. I will meet him on Tuesday and I will 'hopefully' feel even better about things.

[NLJabbari]

Hi Grifmat,

Yes, I think you're on the right track now. Of course, it would be better if your mom had a definite diagnosis. Has her doctor ordered a bone marrow biopsy? To the best of my understanding, this is how patients are diagnosed.

Never be afraid to ask questions as a good doctor will be able to answer you most of the time and will not disregard your concerns. Just recently when my son had to switch from Pedi Hematology to Adult Medicine, we too had to search for a good Hematologist. What we found out was that just because a doctor has a degree in Hematology does not make them qualified to treat bone marrow disorders. Both my son and I were very uncomfortable with his new Hematologist. She only has been practicing for about 7 years which in my opinion isn't enough. When I asked her how many AA patients she had dealt with/treated, her answer was vague to say the least. She repeatedly kept making mistakes on routine stuff like ordering blood products and premeds. This scared me because this is the minor stuff in the whole scenario. I shuttered to think how she would deal with the bigger stuff. So, we searched until I found a qualified Hematologist who specialized in Bone Marrow disease and has many years behind her. We like that she answers all of our questions and concerns in detail and whenever she's unsure of something she consults with various colleagues around the country. We work as a team...

So, I do hope your mom gets a diagnosis soon and that she may be on her way to recovering.

A couple of things I'd like to share with you is 1) Always go prepared with a list of all your questions and concerns so that you may maximize your "Time Slot" with the doctor. 2) A medical professional shared this advice with me sometime ago and it has worked wonders He told me that whenever I had a concern about something and I felt like the Physician was ignoring me, to ask him/her to please document my concern for the record. This method really does help as the Dr. usually will address the concern right away!!! Who knew...

[Grifmat]

Thank you for the advice. I do always bring a list of questions but asking them to document our concerns is a very good tip. I will be sure to do that next time.

They did do a bone marrow biopsy. The local doctor did the biopsy but by the time he consulted with the doctor at Yale he had already started prednisone and then cyclosporine which had "affected" the results. The Yale doctor said he wished he had blood "slides" or "smears" that hadn't been "affected" by the cyclosporine since it would have given him a better understanding of what was going on. The local doctor dx her the first time with CLL and then changed it to AA and then the Yale doctor wasn't positive that it was AA. We do know it is auto immune and I'm sure we will know more when we talk to Yale. He does specialize in MDS,AA and bone marrow failure diseases....I researched him.

It is scary, we trust our loved ones with these doctors and we hope that they are doing whats best and we hope that if they aren't able to that they will put us in the care of someone who does. We aren't doctors and we have a lot of questions...some seem obviouse and some may even be silly but it is their job to help us know what they know so that we can be a good and better informed patient. They should treat us as if we were their mother or their son. To me it's a no brainer...you may be a doctor but you are a human being, I hope.

I'm glad you and your son were able to find a good doctor. Thanks again for the information!