On 1/25/2008 John Flash wrote:
check with dr.ravandi @ m.d.anderson cancer ctr.,houston,texas he specializes in t-cell leukemia.
Thank-you.
I did write an email and he kindly responded. He said to get a second opinion from a hematologist-oncologist who has more speciality in this rare form of leukemia. I wondered where I would start...
Daily saunas have helped with the pain for me. In the sauna a few weeks ago, I met a childhood survivor of leukemia. She suggested SCCA. (I do not know why I did not think of this.) SCCA has united with John's Hopkins, UW and Childrens. I feel this is the best I can get nearest to me here.
I contacted a doctor through "find a physician" on the website. Again, right away, a physician contacted me via email and she forwarded to her admissions director. My PCP is in the the process of following through with the referral -- compiling over 3 years of records. (I would hate to have to go through all that...) So, I will be heading to Seattle in the next 2 - 3 weeks as communicaed to me via new patient admissions there. There, I will give the name of Dr. Ravandi if the new doctor has not heard of him already.
On aside... I wonder how this all would be played out if I was not a nurse -- familiar with the way "the system" works -- and did not know how to access information via the internet. I think and wonder how many people may have symptoms of this "rare" illness, but no tests are done, and doctors tell them, "It is stress or depression." For example, I have neuropathies... earlier on, my neurologist told me: "Depression hurts." Maybe she helped write the drug commercial?) I told her, "I am not depressed -- this is physical." This is my experience... and I see this SO often. What might it be like to be told over and over again, "CBC is normal so there is no evidence of physical illness."? I have to wonder too what kind of hold anit-depression drug companies have on physicians today. In essence, all physical symptoms can be related to depression?
How important it is to obtain a physician who keeps updated, continues his or her education, and researches on behalf of their patients. A physician that knows looks at the whole picture -- sees the body as a whole and connects the dots. That said, in and out 5 - 10 minute appointments where patients report "vague symptoms" has got to be the most difficult for physicians and patients -- "caught" in the the medical system as it now stands.
Another example I think of... (while on a little soap box) is a 20 year old patient with sever neurological symptoms more pronounced with heat, incuding headaches and dizziness and vision difficulty -- blurring and blacking out bilateral on each side. Sleep disorders, RLS and extreme fatigue. She wrote all her symptoms on a symptoms complaint form provided with her packet of paperwork as a new patient. That said, the patient's visit to a community health center (due to no insurance) resulted in "Have you been sexually abused as a child? Are you under any stress at this time?" At the end of her "appointment" the PCP told the patient, "Drink more water". No order for any blood work...
Noteworthy, the patient's vitals were: BP 100/60, T. 97.4, and HR 52. (Okay... I now write with a little gumption) IF that PCP was "on her game" she could rule out dehydration based on the patient's presentation at time of visit -- skin, eyes, etc., vitals (low HR) and the patient reporting adiquate intake. Can we not expect more from health care providers? Simple blood work would rule out or confirm hypothyroid, autoimmune process, enemia, etc. Her visit was a complete and total waste of time and money in the long run. Why? Because the PCP required a "follow-up" in 2 weeks (after the PCP gets back from vacation.) It is my belief that patient appointment clutter is problematic and can be contributed to "status quo" and a lack of reasonable ability to "connect the dots". Imagine... if a follow-up is required, the PCP could have had basic blood test results as data. Not a good use of time, in my soapie-foot-opinion.
Venting in the midst of Peace.
m