For over nine months now I have been in a medical struggle, an abdominal pain that started in January that grew into a type of fatigue I had never known. You see, I am not a sit down kind of girl. My feet hit the floor running and I go like a perpetual two year old until I hit the bed like a brick. Well, that was before…

Now, I struggle to get through a day without pain and even worse, I struggle with the lack of knowledge, compassion and empathy that is left in our medical system. I go back to hearing my Momma say, “the one who graduated first in the class and the one who graduated last, both have M.D. behind their name”. She could not have been more right. We roll the dice when we choose a doctor especially when we are dealing with something they know little about. This has been my case.

That abdominal pain was my first inkling I had something going on so off to the doctor, in this case a nurse practitioner who ordered labs and an ultrasound and a CT. These labs did not dive deep enough and I was told the scans were “negative”. Pain persists, so do I. You find that if you are not advocating for yourself, you will be pushed to the wayside. It is more like a harrowing fight as it began to tire me more than what was rapidly taking over my body.

Doctor Number 2 is a Gastro that explains on Endoscopy might solve the mystery. This is February and I am told September. This is not Canada, so I am awestruck by the timing, but am told The Gulf Coast lacks the amount of doctors to handle the population. I go back to my former town in Georgia where over the following two months I receive an endoscopy and colonoscopy–both negative for everything except an abundance of scar tissue in my abdomen from the seven, yes, seven abdominal surgeries I have endured. We are now in the month of April.

I find out that NP is leaving the town practice and I am on the search for a new doctor. In May, I find an amazing GP in Pensacola. She is thorough, compassionate and not content with doors being left open. She meets me the first time and orders an abundance of bloodwork after our talking. (Yes, talking. She actually took the time to find out who I was and what my history was.) It is now the end of May. The initial abdominal pain has turned into a pain I can only describe as something inside of my rib cage trying to claw out. My days of popping out of bed and going, going, going have turned into going back to bed. I am exhausted.

My blood work comes back wonky, really wonky. I have had enlarged red blood cells for over 23 years along with high MCH. The enlarged cells are associate with what is a condition called macrocytosis where your red blood cells are larger than normal. It shows on a complete blood count and over 100 gets you the prize. Mean corpuscular hemoglobin (MCH) refers to the amount of hemoglobin in the red blood cells. Many times associated with anemia, liver, thyroid–mine has been elevated along with my MCV and has never come back normal although so many doctors in three states have said “NORMAL”. My previous doctor in Charleston was the first to say as I was moving to Alabama “you need to get this checked by a hematologist”.

Flash back to seven years under the care of a hematologist/oncologist in Birmingham who was alarmed by my numbers enough to do a bone marrow biopsy. Negative, but I remained under her care until I moved to Georgia. What was lurking beneath the surface was a high iron level and a ferritin level that began at 30–not my age, the scale. The doctors in both states never addressed it and one was even bold enough to say in print that there was nothing to substantiate the need for more testing. He never followed up on the tests where my iron was thirty points higher than the norm and that my ferritin was now triple the number from Alabama. Add to this a UIBC which showed a high overload of iron in my body. His notes said “at this time I would not further consider workup on this elevated iron level”.

I wish I knew then what I do now…

You see, the new GP ran the tests needed to see what was happening with my iron levels and was not satisfied with that open door as she knew the high iron could start affecting my organs. She ordered an ultrasound and CT, even though I said I had these ran in January. My tests came back with an enlarged liver and made me go back to the original practice in Alabama to find out what happened in six months. I found out I was lied to. That ultrasound was positive which led me to have the original CT reread and they amended it to say there was a single calcified granuloma in the right lobe of the liver. Genetic tests for hereditary hemochromatosis followed. I had all the symptoms, but I did not carry the gene. Now, off to a new hematologist…

Welcome to last of the class…My next two medical encounters had me in a constant state of anxiety. I am NOT an anxious person, but the level of ignorance and the lack of compassion & knowledge really threw me into one hell of a spin. The hematologist said there was zero wrong with me and suggested I go to a gastroenterologist. He was consumed with the previous reports from the Birmingham oncologist about my enlarged red blood cells and refused to talk to me about the iron levels. I was told since I tested negative to the gene, it was impossible for me t have iron overload. I never walked back into his doors again, but I did see the gastro NP who was a nightmare. She was intent on proving herself right and did not want to know my history. She just wanted to be right even though she was way past wrong on so many levels.

The tipping point was when I waited six weeks for a MRI with and without contrast. The results came in that iron was storing in my liver and in my spleen. This is where the scale tipped to not allowing idiots to control my life any longer. I got an emergency appointment with her only to have her NOT discuss the MRI which clearly, along with a high iron level, high saturation, low UIBC and ferritin that has gone from 30 to 230 (High should not be over 100.), but to have her say I now needed a liver biopsy to confirm iron overload. First of all, this is not true nor necessary. When I voiced concern about it being invasive and a bad history of bleeds she spoke is a horrible condescending tone of ” all biopsies are invasive, it uses a NEEDLE!” I bit the inside of my lip because I felt the tears coming.

I am not a crier.

I have cried more in the last nine months than I have in the last ten years.

I walked out knowing I was going to have another fight on my hands so I left a message in the portal to her. It contained all of the questions I had with me at the appointment that she brushed off. She never answered, but instead had the practice patient advocate call me. She was kind and patient which threw me for a loop. I had not experienced this outside of my new GP. She gave the NP’s answers (which were ignorant and incorrect) to my questions. To the question of what can I take for the pain since I cannot take Tylenol (liver) and I cannot take ibuprofen due to it being an NSAID (bleed history) I was told “there is no pain in iron overload”. I guess she missed the fact that people experiencing high levels of iron deal with horrible inflammation and pain. Even worse, the NP’s notes on the visit were not even reflected of the visit. I have come to get used to the lying. Fired her.

Two weeks ago my blood showed my overactive thyroid had gone from .48 to .033. Add now brain fog, confusion and bigger fear to the mix, but my GP was not giving up. She got me into a new hematologist who I will see tomorrow in Pensacola.

I am tired of so many things at this point and although my faith in God is strong, my faith in the medical field is small. No one should have to fight so hard when there is a known issue, but when it is rare ego steps in from the doctor and they would rather brush you off than help find the bottom line issue.

My nights are consumed with finding answers. The book, The Iron Curse by Dr. Christy Sutton, has been a great navigator in what I need to know. I have been blessed to have a great GP, a family member who is a great doctor who reads my labs and tests and an old family friend from childhood who has eased my mind by being my ‘mental cane’ as I approach this appointment tomorrow. He went over my labs with me and the MRI. He is the top doctor in his field, but is states away although his phone call placed him directly next to me. He told me it is possible I have a mutated gene that they have not tested for and no matter what, I need to have ongoing phlebotomies to reduce this overload of iron. Letting this go without the taking of my blood will eventually lead to further organ damage especially my heart and my brain.

I have too much to give to let the last in the class take me down when I have been surrounded personally by the first in the class…

Too much.