Yesterday afternoon I went and picked up copies of my medical records from my primary care physician and my cardiologist. Interestingly enough, the head of the primary care was working on some report and so I did not get a copy of whatever that was/is. Since I’m seeing him Monday, I will ask for a copy then.
The moral to the “story”? Always, always ask for a copy of all records, lab reports, test results, etc. Always.
Back on May 19, I had blood drawn. That test shows low hemoglobin, low MCH, and low MCHC. In the follow-up blood work on May 26, my iron level was low, my TIBC was high, and my iron saturation was low (5%).
On June 1, iron pills were prescribed. 325 mg three times a day of ferrous sulfate, which not only did I not digest, but which also made my stomach burn.
No follow-up.
When I went to ER (sent by primary) on August 4 the lab (non-fasting) showed similar results.
No follow-up when I saw primary the day after. Even when I told her I still was not digesting the ferrous sulfate an dthat it was hurting my stomach. I was referred to ENT.
In November, my neurologist ordered labs that showed a significant drop in the already too-low levels. In December, the neurologist did more labs which showed the low serum ferritin level.
Now I saw primary in September and twice in October for recurring sinus infection and a sore on my leg that wasn’t healing. No follow up labs. No comments when I shared I was still having trouble with the ferrous sulfate.
On December 21, I saw primary for another sinus infection and to talk about iron and my leg. I was told my leg looked like it was healing (it wasn’t) and that neurologist could handle iron.
On December 30, the neurologist halted everything based on the labs he’d drawn until the underlying issues were resolved.
On January 4, primary referred me to hematologist and gastroenterologist because of neurologist’s comment that he had never seen a ferritin serum level so low.
On January 8, I saw the hematologist/oncologist. On January 12 I had my first round of chemo.
The purpose of the timeline? If I had known my lab results in May I would have insisted on something being done, followed-up on, etc. Because I didn’t, I trusted my primary care doctor, and subsequent specialists, to do the right thing. Obviously I’m not convinced that happened in my case (at all), although I honestly don’t feel anything was done out of malice.
But I’m so disappointed, and so distrustful of all of them now. I hope that fades because I need for everyone (including me) to work together on getting me healthy.
IF they had treated me when the lab results first indicated, I probably (according to oncologist) would have still had to go through treatments; however, in May my body wasn’t as run down as it is now, nor did I have multi-system complications (neurological and cardiac).
PLEASE be smarter than I was, and insist on seeing lab and test results.
It was an eventful weather-week, especially for here. The weather people said we got around 4 inches of rain, and so there are puddles and newly-formed temporary ponds everywhere because, quite simply, drainage leaves a great deal to be desired. I suspect it would be worse except the town had the foresight (!) to empty the canals, which gave the over-abundance of water somewhere to go.
