Fat Patient's Obituary Calls Out Medical Bias

From her obituary:

“Her brief time diagnosed with inoperable cancer gave her mere days to live... A final message Ellen wanted to share was about the fat shaming she endured from the medical profession. Over the past few years of feeling unwell she sought out medical intervention and no one offered any support or suggestions beyond weight loss. Ellen's dying wish was that women of size make her death matter by advocating strongly for their health and not accepting that fat is the only relevant health issue.”


And then her death is added to statistics that fat people die earlier etc. Let's see what the statistics would show if we ever get comparable health care to that of thinner people. I'm not saying fat doesn't adversely affect my health--just that unbiased health care would improve the situation and not add deadly insult to injury. (Though without fat bias I wouldn't have spent my teens and twenties on a series of diets that also had a negative effect on my health.)

It's difficult enough to deal with illness without second guessing my health care.

Liver Disease Diagnosis

I've modified my diet as much as possible to reduce inflammation, can't tolerate the level of Vit E suggested below but can tolerate 200 IU with food. I still have pain in the vicinity of my liver nearly every day, sometimes severe, and the area of my spleen sometimes has pain and is always tender. (When I went in to Urgent Care last summer with bladder infection symptoms the doc noticed tenderness in both areas. I should note that it had been years since I received a thorough abdominal exam like that. How many things could be caught earlier if doctors weren't afraid to touch fat patients or didn't convince themselves our fat is in the way so it's useless? We still feel pain and tenderness when examined and that tells you something!)

The referral to nutrition mentioned below is useless to me since Medicare (and therefore my secondary insurance) doesn't pay for individual consult. I may pay for one myself at some point, but basically I'm treating this as a stricter version of a heart healthy diet crossed with a modified diabetic diet with the hope of reducing inflammation generally. For my sanity I am not making weight loss a goal though some modest weight loss has resulted.

Gastroenterologist regarding trans-jugular liver biopsy results:

"As discussed on the phone, you have NASH (non-alcoholic steatohepatitis) which is inflammation of your liver from fat cells. There was a little bit of scarring (fibrosis, stage II) but good news is that there is not cirrhosis (complete scarring). Of course, we are trying to prevent cirrhosis so that would entail weight loss in a slow and steady manner. I have referred you to nutrition.
Also, vitamin E supplementation at 800 international units per day may decrease the inflammation and hopefully decrease fibrosis but that needs more studies to prove the latter."

Most recent liver panel:

Total Protein 6.8 g/dL 6.4 - 8.2 g/dL
Albumin 3.2 g/dL 3.2 - 4.7 g/dL
Total Bilirubin 0.4 mg/dL <1.1 mg/dL
Direct Bilirubin 0.1 mg/dL 0.0 - 0.30 mg/dL
Alkaline Phosphatase 131 U/L 26 - 137 U/L
AST 15 U/L 0 - 37 U/L
ALT 18 U/L 0 - 60 U/L

Last C-reactive protein test was 2015

C-Reactive Protein 40.2 mg/L

Recent cardiac cath showed no new blockages so that's great news! Even if nuclear scan showed a lowered ejection fraction.

Stranded in India With Children

Years ago when my grandsons clothes and possessions were kept by their dad after their visit, my friend Emma sent $300.00 as soon as she heard about it. That's the kind of person she is.

Back then her marriage seemed solid and her husband had moved her to India so their children could be near his parents while he traveled for work. He had a house built. At first he visited fairly often. Gradually those visits were less frequent and for less time.

Even from America I noticed a distinct chill in their online interactions when she was dealing with vandalism and home invasion robbery at this rural home while he was in Australia. He seemed to feel that she was exaggerating the circumstances and her fear. The thief entered her home again and they drove him off. He was later caught. We publicly shamed him into visiting and shoring up security.

Recently he moved his parents into the home and Emma and their children into an apartment. I'm sure he had some kind of reasonable sounding rationale...

Then she found out that he has a girlfriend. Then he cut off all financial support. Their religion had mandated that she stay home and raise children so she hasn't been working outside the home (it's a rural area anyway) and has no nest egg. Nor has he offered to divide assets in a divorce (she's not sure what he has and doesn't have enough money for a lawyer) or pay their way back to New Zealand where she grew up and has friends and family.

When I left my husband I could hop on a train and travel the 2000 miles back to my family. I feel for Emma being so much further away and needing to take a plane with twice as many children as I had.

Her friends are trying to spread the word and raise funds so she can move, get a job and support her children. Hopefully she can get a good divorce lawyer and receive her share of the community property. I know he thinks he earned it all but her contribution to the marriage has a dollar value too. Imagine the cost to him of paying someone to raise four children while he worked!

Here is the link to her fundraiser: https://www.impactguru.com/fundraiser/help-emma-dey

Stomach Pain

I finally went into Urgent Care for the upper R quadrant stomach pain after a prolonged episode at 7/10 and had an abdominal CT. I saw the excellent doctor who did not allow bias to stop him from taking me seriously years ago when I presented to Urgent Care having had cardiac symptoms over the weekend--and sent me directly up to the cardiologist I still see to this day. I got a referral to a gastroenterologist for a colonoscopy which I had yesterday.

Liver: There are signs of hepatic cirrhosis, including atrophy of the left
lobe, hypertrophy of the caudate lobe, and micronodular surface contour. The
liver is mildly enlarged. There is mild diffuse hepatic steatosis.
Gallbladder and bile ducts: The gallbladder is surgically absent.

Spleen: The spleen is mildly enlarged measuring 12 x 11 cm.

Adrenals: The adrenal glands are normal.

Kidneys and ureters: The kidneys are normal in size and attenuation, with no
focal masses or collections. No renal parenchymal or collecting system
calcifications are seen. There is no hydronephrosis bilaterally.

Stomach and bowel: Mild colonic diverticulosis is present primarily in the
sigmoid and descending colon, with no signs of acute diverticulitis. The
stomach is within normal limits. Radiopaque enteric contrast proceeds from the
stomach to the distal ileum, with no evidence of small bowel obstruction. The
small bowel is normal in appearance.

Appendix: A normal appendix is identified.

Bones/joints: Sternotomy residuals. Degenerative disc disease at the lower
lumbar levels. No acute fracture. No dislocation.
Soft tissues: Unremarkable.

Vasculature: Mild aortoiliac atherosclerotic calcification is seen. No
abdominal aortic aneurysm.

I was worried about my pancreas but it appeared to be normal and enzyme test results were fine. My colonoscopy showed nothing that would explain the pain which is very reminiscent of my former gallbladder pain especially in location (without that squeezing feeling from the spasms). Yet my new gastroenterologist insists that the liver, the only thing in the region that shows damage, can't be responsible for this pain because the liver has no nerve endings. This is true--internally. But my reading (such as Mayoclinic, not some junk science site) indicates you can have liver pain and that there are nerve endings on the surface. When the liver is swollen you can apparently have pain. It also seems likely that a patient with fibromyalgia would have pain if anyone would. I'm happy to suspect another culprit if anyone can identify it. Otherwise I feel like I'm being gas-lighted.

I don't even know what to do when I have pain at this point. I don't have any medication that helps it and I'm completely freaked out over having the same kind of pain that I thought I would never have to feel again after getting rid of my gallbladder. Mind you, I had **22 years** of gallbladder pain during which I was told it couldn't be my gallbladder and maybe I should "talk to someone." So my patience for being told my pain can't be there or be what it seems obvious it is from is nonexistent.

I almost didn't have the colonoscopy after all that prep because they forgot to clear it with my cardiologist even though I'd indicated I'd recently had a nuclear scan. There was a troubling finding in that scan that made them worry about how I'd hold up under the procedure. So we waited while they contacted my doc, complicated a bit by the early time of my appointment. Then they were surprised he knew me by name alone. My cardiologist met me way back in 2001 and I have an unusual name.

Bias Strikes Physicians Also

Don’t Suspend Doctors for Fighting White Supremacy

Unbeknownst to me, since my notifications were flooded from my tweet against White supremacy, the mother of a hospital patient started cyberbullying me on Facebook as a result of the uproar. She posted a screenshot of my tweet, claimed that I was pushing my political agenda at work, and invited all her friends to make disparaging remarks about me. I hadn’t met her at that point. When I did meet her weeks later after being assigned to care for her son, she rudely told me to leave the room in front of my whole team. Flustered and confused, I backed away.

...I soon found public Facebook posts in which the mother proudly stated that she was talking with administration officials at VUMC about having me fired or placed on leave and revoking my access to her son’s medical records. They have followed her advice to the letter.

Unfortunately, my experience is in no way unique. A 2009 study in the Journal of the National Medical Association found that almost a quarter of physicians of Asian ethnicity left at least one job because of workplace discrimination, compared with just 9% of White physicians. Right after the Charlottesville clashes last year, emergency room doctor Esther Choo detailed her own experiences attempting to treat White nationalists. She was often kicked out of the room when trying to save their lives. While leaving her heartbroken and confused, her story sparked a national conversation about bias and racism in the hospital setting.

So weary

Given my stomach pain I decided to give Dave's doc a try.

He was apparently unhappy that I left another doc and wanted to spend a substantial time discussing old doc and defending both old doc and orthopedic doc's lengthy weight loss lectures. When I tried to bring up stomach pain he said we were out of time and to make a new appointment and seemed to blame me for his next patient being seen late. Oh and he wants to order a thigh bp cuff to get a bp on my upper arm, saying the large cuff is not sufficient and that it's not possible to get an accurate bp on my forearm which he tried to do manually rather than by machine. None of my cardiologists have challenged a forearm bp reading. NO ONE HAS EVER SAID THIS.

Usually I'd try to stick it out and hope the doctor would eventually see the person behind the fat, I don't feel up to that right now. But I don't know what to do about my stomach pain and what I google seems potentially alarming. (This is what it's come to, googling because docs only want to talk about fat.)

I've wondered if I should just go to urgent care. Sitting there during flu season doesn't appeal to me but if it gets worse I may go in.

Somehow I need to find another doctor and now I will have left two primary care physicians in a row so that doesn't look good. It's like going to a job interview after quickly leaving two jobs in a row. Yet I've had PCPs that I've gotten along well with for years. It's not impossible! Just difficult to find them. Nothing about a doc's profile online with their HMO discusses how they approach fat patients--but maybe it should.

@yrfatfriend on Twitter Asks an Important Question

Your Fat Friend asked a simple but important question:

Fellow fats: what has happened during your WORST experiences with health care providers? (Later in a separate tweet she asked for positive experiences, to be fair.)

The resulting thread is stunning.


A few:

"I was maybe 9 or 10 when a MALE doctor who wasn't even my normal dr just a substitute told me that I would need to loose 30+ pounds to be like the "pretty " girls my age. He told me if i didn't loose weight I would die by the time I was 16. In reality i was 6 pounds over weight."


"I was twelve and had to go to a different doctor than my regular because he was out of town. Also had to go with my dad to the appointment since my mom was working. I told the doctor I was tired all the time and she told me the reason I was “always sick” was because I was fat. I hadn’t been to the doctor in over a year. For anything. I left crying. Two weeks later we found out I was tired all the time because I had mono."


"Told to get stomach-stapling surgery by a dermatologist, to treat my dermatitis..."

and wtf?

"1. I was given info for weight watchers when I actually had a dangerous blood infection that causes drastic weight loss/ weight gain- both of which I've experienced.
2. Therapist said my weight was the cause of my major depressive disorder and then fell asleep during the appt."

I want to print them all and send to every med school. Final one (many more at link, above)

"Was in the ER for an MS flare up. Which was causing temporary blindness in my right eye. The attending neuro-ophthalmologist went about trying to talk me into gastric by-pass. Clearly my fat was pressing down on my optic nerve and it wasn't my chronic illness. /sarcasm"

That one gave me flashbacks. Seriously no matter what I'm seen for, most docs wants me to have a gastric bypass.

Nuclear scan results

Note that any nuclear scan will see the damaged area of my heart where I had a heart attack following my 2001 bypass surgery.

"Ejection fraction is a measurement of the percentage of blood leaving your heart each time it contracts." Even after my heart attack my EF was in the high 50s but it has gradually declined and I was told that was to be expected after a heart attack and that the force of my heart beating causes further deterioration of the damaged area.

However, the difference in these two results and their conclusions is cause for alarm along with my symptoms and having just lived through one of the most stressful years of my life. The chest pain I've had, the shortness of breath and that stress level is what made me ask for the test in the first place. I have an appointment with my cardiologist in early March but I wish it were in February.

Current results:

PROTOCOL: The patient received 6.3 mCi of Tech-99 Cardiolite and was imaged in the supine position. The patient then received a 4-minute infusion of adenosine without walking. At 2 minutes into the protocol, the patient received 20.2 mCi of Tech-99 Cardiolite and at the end of the procedure was reimaged in the supine position. The total dose of adenosine infused was 80.1 mg.
Tc-99m Sestamibi also known as Cardiolite, Rest. Tc-99m Sestamibi also known as Cardiolite, Stress. The total amount of radiation that the patient received in this study is estimated at 7.84 mSv or 784 mrem.
1. Hemodynamics: The Initial heart rate was 94 bpm; the blood pressure was 142/94. The heart rate rose to 100 bpm; the blood pressure peaked at 141/86.
2. EKG Portion: The baseline EKG revealed NSR LBBB LAD.
3. Adenosine Portion: No ischemic EKG changes were observed. No significant arrhythmias were provoked. Occasional PVCs. Nonspecific ST depression during adenosine noted
4. Perfusion Portion: Revealed a large fixed anteroapical/inferoapical defect with peri infarction ischemia involving the mid anterolateral wall. The summed stress score was 30, the summed rest score was 25, and the summed difference score was 5. The TID ratio was 1.10. Gated wall motion revealed mid anteroapical/inferoapical akinesis with an estimated EF of 35%.
Abnormal study with large anteroapical fixed defect c/w previous MI . Small region of peri infarction ischemia mid anterolateral wall with reduced EF 35%.

vs 2015 (after which I had a stent)

1. Hemodynamics: Initial heart rate 56; blood pressure 156/92. Heart
rate rose to 77; blood pressure rose to 165/94.
2. EKG Portion: Baseline EKG revealed sinus rhythm and evidence of an
anteroseptal myocardial infarction, age indeterminate.
3. Adenosine Portion: No ischemic EKG changes were seen. No significant
arrhythmias were provoked.
4. Perfusion Portion: Revealed a large region of decreased activity
involving the mid to distal anteroapical, inferoapical, and anterolateral
walls, with what appeared to be a small region of possible peri-infarction
ischemia involving the mid anterior wall. Quantitatively the summed
stress score was 23, summed rest score 16, and summed difference score 6.
TID ratio was 0.86. Gated wall motion revealed a reduced EF of 40% with
hypokinesia involving the distal anteroapical, inferior, inferoapical, and
inferolateral walls.
Abnormal study demonstrating a previous anterior myocardial infarction
involving the anteroapical and inferoapical segments with what appears to
be some mild reversibility in the mid anterior wall.