Catching up a bit

I went to meet with a nutritionist on Thursday. He had me in for a pretty big test (full body bone density test) immediately, but then told me that it "never happened" because my insurance won't cover it. He said that he can tell my body fat percentage by my bone density, but it came back as 51%. Now, I don't know what the "normal" percentage is, but I am thinking that in my case, this test is not all that accurate. I am NOT saying that I am not fat, what I am saying is that this is not ALL fat. 100lbs in about 3 days, remember. 100lbs of fluid. Anyway, I don't really know what to think right now, but I am trying to keep an open mind becuase he seems like he wants to know what is going on and help me. He was not given any medical history on me, so I stopped him and filled him in a bit before anything else. I have an appointment with him in a month, and he asked "How much do you think you can lose in a month?" and I said "I really don't know, I could lose 20 in a week and gain 30 in an hour- there is no rhyme or reason to any of this." We shall see, I guess. (I think my weigh-in at that appointment was 244lbs.)


Later that day, I got a call DIRECTLY from my endocrinologist regarding some blood work that "should have been flagged a couple of weeks ago" and got some good advice for the follow-up with my PCP. What she said was that my white count is high. It has been consistently high for a while. She understands why some doctors would blow this off as being nothing to worry, but given the circumstances, she feels it needs to be investigated. She also said that I should not discuss my diabetes with my PCP at my appointment, because I need to focus on why I was hospitalized and such. She said to bring up the white count, and that we'd deal with moving forward with diabetes things the next time I see her (which is relatively soon).

Also later that day, I was at a rehearsal and I was overcome with extreme sharp pain again. I could not hold back the tears. It was brutal. I hadn't been taking my pain medicine (I tend to try to not take anything extra on top of the huge cocktail of stuff I am required to take..) and I didn't have any with me. Luckily, one of my friends gave me a ride home. I took pain medicine and slept for a short while before it was time to get going to see the PCP.

The PCP took blood for a potassium level check, since it had been low at the hospital. She also wants me to see a hematologist. I have to check with her and see if that will be set up through her office or if she has someone that she wants me to call.

More...

So continuing on...
When this all began, I went to one ER and was told that it was in my head, given an ativan and sent on my way. Two days later, I was taken to a different ER, more blood was taken and oxygen was given but I was told that I was not going to die that very night, so I had to go.
I was seen at a hematologist's office, but was seen only by a nurse practitioner, never actually seen by the hematologist. Many blood tests were done.
Many outside tests were ordered:
Stress echo- I was told this was normal, even though I felt like I was going to die.
Abdominal CT- normal
Bilateral leg ultrasound- normal
Abdominal MRI- a hepatic adenoma was found- a (at that time) benign) tumor that was presumably caused by LoEstrin24. This was told to me on July 28th, 2008 and I was told to come off of the pill immediately and that the MRI would be repeated after a brief time off of the hormones. As of this date, I can't get anyone to order the repeat of the MRI.
Pelvic Ultrasound- normal
The nurse practitioner put me on Lisinopril.

I have seen my gyn and been cleared of anything on his end.
My first "new" Primary Care Physician told me that he would not be my doctor because I have too many previous diagnosis. This was before I even swelled up. I got a new PCP and he ran a bunch of blood tests and sent me to a kidney specialist.
I had a terrible cough that would not go away, and the PCP determined (after months of antibiotics) that it was the Lisinopril causing an upper respiratory infection. I was taken off of it and eventually, the cough got a bit better. I still have left-over effects from it.

The kidney specialist first said (without doing ANYTHING, I kid you not) that there is nothing wrong and sent me home. Then she called and said that there was protein in a previous urine (not done in her office, because again, she did NOTHING) so I needed to come back to do a 24 hour urine. I did that, and she decided that being on Lasix and Triemterene was dehydrating me, so I needed to come off of it. She also said that my potassium was low.

My PCP put me back on the Triemterene, but on a lower level- Maxzide, which I am on now. I was off and on the Lasix a couple of times too. Nothing has actually shown any results, diuretic-wise though.

I have gotten weaker and weaker and my mobility has gotten severey impaired. I still have no answers. I will write more later. I am too tired.