Updates
I essentially fired my hematologist/oncologist. In a nutshell, he:
1. Insisted I had iron-deficiency anemia when I knew I had anemia of chronic disease. He ordered 5 rounds of iron infusions when my ferritin was already 470.
2. Told me I would get 1 administration/ month of chemo for 4 months. This is WRONG. Standard treatment is 2 administrations/ month for 6 - 8 months. When I told him that, he agreed with me & insisted I had simply heard wrong (not).
3. He falsified my medical record by stating that I told him that due to the DS, I was unable to absorb ANY vitamins or nutrients. The next sentence then states that before my surgery, my hemoglobin was normal, but now I'm anemic . . . to further support why, despite the fact that my iron panel was consistent with anemia of chronic disease, he felt compelled to order 5 rounds of iron infusions anyway - just to be on the safe side, but that he really felt all along that it was anemia of chronic disease. Note that he got that baseline hemoglobin from my spreadsheet of labs in which the next column over had my 6 month post-op AND 10 month post-op of ALSO normal levels of hemoglobin, hence he selectively chose the lab values to support his note. In addition, I had given him my vitamin labs AND TOLD HIM that aside from Vit A & zinc, all of my vitamin labs were in the normal to high range. Obviously, I am NOT nutritionally deficient as he is trying to state - one, through an outright lie and two through selective use of my labs. When I called to state that my medical record was wrong & I wanted to correct it, the receptionist told me I needed to speak with the dr.'s nurse about it. Her reply was, "Well, you started seeing him for anemia and now you're seeing him for cancer, so what does your nutritional status have to do with it anyway? What's the big deal?"
4. I had a CBC last week Tue, which gave me my red blood cells & hemoglobin, which he did for my bone marrow biopsy. After all those iron infusions, my hemoglobin dropped from 10.3 to 9.9. Why? Because I have anemia of chronic disease, of course. THEN, I tell his nurse that same day that I still want my scheduled lab on Fri to do my iron panel (which initially included a CBC). This was scheduled at the outset of the iron infusions to determine how my iron levels & hemoglobin were after the infusions. THAT ****** CANCELLED THE TEST ANWAY. Why? So I wouldn't have proof of how high my ferritin was, of course.
Drumroll, please . . . . my Ferritin is 1,262
I know this because I got a second opinion in Springfield. The new oncologist is FREAKING AWESOME. Everything that I want in a dr. The other (old) dr never even told me my stage of cancer!!! I figured it out myself, but that's not how it should be. The new dr agreed with me that I should have the ferritin level run & checked it for me. He also wanted a copy of my bone marrow biopsy & MUGA (heart) scan and I told him that I had tried to get a copy of it and the old office had refused to release it to me (even with a release of info), stating that I would have to meet with the dr first (that's what the dr's nurse told the receptionist). I then spoke with the office manager & she agreed that it was feasible for me to fill out a release form directly to the new oncologist, another medical professional obviously trained to give me an accurate interpretation. The new oncologist's nurse filled out their request for medical records & had me sign it :)
I start chemo on Fri, August 26th!!!!!!!!!!!!!
Bad news . . . I've been at my job for less than one year. HR told me today that my job is therefore not protected and that if I'm unable to meet the minimum requirements of my job (if I miss too much work), that I will lose my job. That's EXTREMELY stressful when I don't have anyone else to rely on, but my first and foremost objective must be to complete treatment. If I don't get sick or have any complications and if I am physically able to get my ass to work and do a decent job, I will be fine. I accrue just enough paid time off each month to cover treatments and the follow-up appointments (not too much now). Please pray that I don't get sick!!!!!!!!!!!!!!
My workday is over now . . . I'll be back tomorrow & will check emails :)
1. Insisted I had iron-deficiency anemia when I knew I had anemia of chronic disease. He ordered 5 rounds of iron infusions when my ferritin was already 470.
2. Told me I would get 1 administration/ month of chemo for 4 months. This is WRONG. Standard treatment is 2 administrations/ month for 6 - 8 months. When I told him that, he agreed with me & insisted I had simply heard wrong (not).
3. He falsified my medical record by stating that I told him that due to the DS, I was unable to absorb ANY vitamins or nutrients. The next sentence then states that before my surgery, my hemoglobin was normal, but now I'm anemic . . . to further support why, despite the fact that my iron panel was consistent with anemia of chronic disease, he felt compelled to order 5 rounds of iron infusions anyway - just to be on the safe side, but that he really felt all along that it was anemia of chronic disease. Note that he got that baseline hemoglobin from my spreadsheet of labs in which the next column over had my 6 month post-op AND 10 month post-op of ALSO normal levels of hemoglobin, hence he selectively chose the lab values to support his note. In addition, I had given him my vitamin labs AND TOLD HIM that aside from Vit A & zinc, all of my vitamin labs were in the normal to high range. Obviously, I am NOT nutritionally deficient as he is trying to state - one, through an outright lie and two through selective use of my labs. When I called to state that my medical record was wrong & I wanted to correct it, the receptionist told me I needed to speak with the dr.'s nurse about it. Her reply was, "Well, you started seeing him for anemia and now you're seeing him for cancer, so what does your nutritional status have to do with it anyway? What's the big deal?"
4. I had a CBC last week Tue, which gave me my red blood cells & hemoglobin, which he did for my bone marrow biopsy. After all those iron infusions, my hemoglobin dropped from 10.3 to 9.9. Why? Because I have anemia of chronic disease, of course. THEN, I tell his nurse that same day that I still want my scheduled lab on Fri to do my iron panel (which initially included a CBC). This was scheduled at the outset of the iron infusions to determine how my iron levels & hemoglobin were after the infusions. THAT ****** CANCELLED THE TEST ANWAY. Why? So I wouldn't have proof of how high my ferritin was, of course.
Drumroll, please . . . . my Ferritin is 1,262
I know this because I got a second opinion in Springfield. The new oncologist is FREAKING AWESOME. Everything that I want in a dr. The other (old) dr never even told me my stage of cancer!!! I figured it out myself, but that's not how it should be. The new dr agreed with me that I should have the ferritin level run & checked it for me. He also wanted a copy of my bone marrow biopsy & MUGA (heart) scan and I told him that I had tried to get a copy of it and the old office had refused to release it to me (even with a release of info), stating that I would have to meet with the dr first (that's what the dr's nurse told the receptionist). I then spoke with the office manager & she agreed that it was feasible for me to fill out a release form directly to the new oncologist, another medical professional obviously trained to give me an accurate interpretation. The new oncologist's nurse filled out their request for medical records & had me sign it :)
I start chemo on Fri, August 26th!!!!!!!!!!!!!
Bad news . . . I've been at my job for less than one year. HR told me today that my job is therefore not protected and that if I'm unable to meet the minimum requirements of my job (if I miss too much work), that I will lose my job. That's EXTREMELY stressful when I don't have anyone else to rely on, but my first and foremost objective must be to complete treatment. If I don't get sick or have any complications and if I am physically able to get my ass to work and do a decent job, I will be fine. I accrue just enough paid time off each month to cover treatments and the follow-up appointments (not too much now). Please pray that I don't get sick!!!!!!!!!!!!!!
My workday is over now . . . I'll be back tomorrow & will check emails :)
HW / SW / CW / GW 299 / 287 / 160 / 140 Feb '09 / Mar '09 / Dec '13 /Aug '10
Appendicitis/Bowel Obstruction Surgery 8/21/10
Beat Hodgkin's Lymphoma! 7/15/2011 - 1/26/2012 
Ran Half-Marathon 10/14/2012
First Pregnancy, Due 8/12/14 I LOVE MY DS!!!
Lisa,
Kudos for standing up for yourself and changing hem/onc's. We are all our own best advocates when it comes to our health and well-being. You are a shining example of not taking everything a physician says as gospel and doing your own research. No amount of "Provider Charisma" should replace common sense and entice us to become blind followers. Trust but verify. Because of your proactive nature, I am certain you are going to do well. I REALLY hope others see how your hard work, determination, and tenacity have altered your treatment course and increased your likelihood of an excellent outcome.
You are truly inspiring!
Kudos for standing up for yourself and changing hem/onc's. We are all our own best advocates when it comes to our health and well-being. You are a shining example of not taking everything a physician says as gospel and doing your own research. No amount of "Provider Charisma" should replace common sense and entice us to become blind followers. Trust but verify. Because of your proactive nature, I am certain you are going to do well. I REALLY hope others see how your hard work, determination, and tenacity have altered your treatment course and increased your likelihood of an excellent outcome.
You are truly inspiring!
I'm glad you've found a good doc in Springfield and let that old dude go. Keeping you close to heart through this process and praying you're able to hang with your job schedule too. Keep us posted.
((hugs))
--gina
5'1" -- HW 195/SW 187/GW 115 July 08/CW 121 Dec 2012
******GOAL*******
Starting BMI between 35 and 40ish?
Join us on the Lightweights Board!
DS on Aug 9, 2007 with Dr. Hazem Elariny
-
I'm so glad to hear from you. I was just thinking about you today and was wondering how all of this was working out for you.
This is proof that we are truly the ones in control of our medical care and that we must advocate for ourselves. Way to go on sticking to your guns about everything and trusting your gut.
PS> My birthday is Aug 26th! You're going to ROCK this!
This is proof that we are truly the ones in control of our medical care and that we must advocate for ourselves. Way to go on sticking to your guns about everything and trusting your gut.
PS> My birthday is Aug 26th! You're going to ROCK this!
Congratulations on being your own advocate. I've been wondering how you're doing and it sounds like you've got everything under control (everything that you CAN control that is). I'll be sending positive thoughts and prayers for smooth treatments with no sickness attached to it. Be well.
Virtual hugs from,
Sher-
Virtual hugs from,
Sher-
Sher--the bear mama
Atta girl!!!
I was worried that I might have to go all the way out there and kick someone's ass, LOL.
I still might have to, if that employer of yours doesn't turn that attitude around.
It's funny, I was just telling my mom about you like 15 minutes ago, LOL.
I was worried that I might have to go all the way out there and kick someone's ass, LOL.
I still might have to, if that employer of yours doesn't turn that attitude around.
It's funny, I was just telling my mom about you like 15 minutes ago, LOL.
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125
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