It’s not about the weight

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That’s me.  It’s an old photo, but I assure you that I haven’t changed much at all.  My weight has been very, very stable for a year now– within 2-3 lbs.  Keeping with my I-don’t-do-anything-the-way-everyone-else-does-things way, I’m going to come out and tell you that I weigh 200 lbs on the dot.  I’m 5’5.5″.   My BMI is just over 30 (31? 32?), making me clinically obese, by a hair.  Knowing that I don’t chow down on bacon double cheeseburgers and that I try to get as much activity as a nursing home lifestyle allows, I’m quite content with my body.

Yesterday, I had a much-anticipated appointment at the UPMC Transplant Center.  I have had type I diabetes for 22 years now, and basically, I’m experiencing severe complications… in my case, my GI tract is pretty much not functioning.  All those contractions that move things through it (peristalsis) have stopped due to nerve damage.  Doctors have started to do pancreas transplants in type I patients who have a profile similar to my own, specifically in those who have hypoglycemia (low blood sugar) unawareness.  I love to go take walks, but it’s dangerous, because I’ll pause to test my blood sugar and it will be, oh, 39.  And I’m on the curb, hanging out, sometimes waiting for an hour or more for it to come up.

The appointment started at 7:30 AM, so I was up at 5 and met my mom there bright and early.  They took my vitals… they measured me an inch short, and I was 207 on the scale (with several layers and shoes on).  I mentioned it to the nurse and she said to tell the doctor, that it would be fine.  The whole morning went very well.  We did a class as a bit of an intro to transplants, then my mom and I met with the pharmacist, two kidney docs (nephrologists), the social worker, the behavioral health specialist, and finally, the surgeon came in.

He said that he was going to cut to the chase.  My weight was a huge issue.  My BMI was 34 (again… measured short and weighed with shoes and such), and it had to be 30 or lower to do the surgery.  I said, well, I only get about 1000 calories a day, and I do exercise, so can you give me some guidance on what I could do to lose weight?  He said no, he couldn’t, that I would meet with nutrition though, and they’d basically magically figure something out.  Except, I’ve met with dozens of dietitians in my lifetime and no one has ever figured out the weight issue.  I’m solid, I’ve always been solid.  Despite my high BMI, I actually wear a size large or 14… I’m muscular and dense, and I always have been.  I told the doctor that my prealbumin (the best blood marker for nutrition levels) is only 11-12, and he said, “That’s actually quite good.”  Except, it’s not.  At all.  A normal prealbumin (ask any doctor) is above 18 and preferably above 20.  “Severe malnutrition” is below 9 or 10.  Mine is 11 or 12.  I am not well nourished.  He insinuated then that, if I were malnourished, I would be thin.  Of course.

My mom said, okay, okay.  So say it’s a perfect world and she loses the weight.  Then we can proceed?  Well, he went on, these surgeries do not make life better.  She will have to take medications forever, her immune system will be suppressed.  Yes, but right now, I live in a constant state of hyper-awareness because my blood sugars are SO brittle.  I was 534 last night and 41 and losing consciousness two days beforehand.  It’s never-ending.  He said that something in my story just didn’t add up– that he’s never heard of a diabetic who has unawareness of low blood sugars as well as very high blood sugars (seriously– any type one EVER.  Not even kidding!).  He asked why I live in a nursing home, saying that it doesn’t make any sense for a young girl to live there.  My mom asked, “Have you ever lived with diabetes and all her other issues?”  Basically, my parents were the go-to’s.  They were on call, 24/7, for assistance and ER rides… broken tubes, and pain, and GI issues, and bleeding, and DKA, and… they need to have a life too, and I needed round-the-clock-care.  He answered my mom (and this is when I started to get upset), “Ma’am, no I don’t, but frankly, neither do you.”  I told him that my mom took minute-to-minute care of me for ten years and that I did not appreciate that remark.  At all.

He moved on.  “These pancreas transplants only last ten years at best.”  My mom asked, “Oh, so you only do them on the elderly?”  “No, that is not what I’m saying.  Don’t put words in my mouth.”  Then what are you saying?  He was saying that they do pancreas transplants with kidney transplants.  Which is not at all true– they have a whole program for pancreas transplants alone!  Well, those are only for a very small subset of the population.  WHO?!  People who have hypoglycemia unawareness (HELLO?!) and… and what, doctor?  Whose BMIs are lower than yours.

So, we’re back to that.  Full circle.

The nurse, to say the least, was livid.  She has specifically cleared my height/weight with the doctor and he said to bring me in.  Funny thing… he had my chart all day, but he waited until the very last minute to decline me… only thing we can figure is that, this way, the center could bill for the whole day’s assessment.

We figure one of two thing: First, it’s a fact that UPMC is a non-profit who is anything but.  They had 20 executives who make over a million per year.  Their president made $6.6 million.  I don’t want to give information from the people within the company who have heard things directly, because I don’t want to “out” them… but believe me, it’s about the money.  I am a Medicaid patient, and when I receive care, Medicaid has a contract with the care providers and pays a certain amount, which is less than the actual charge.  A lot less.  Basically?  I don’t pay well.  What’s the point in caring for me?

The other possibility is that the surgeon may have read stuff in my chart.  One of my previous UPMC docs came out and said he thinks I”m feigning my illness.  Also, I have butted heads with two others within the UPMC system… one was really on their end in terms of responsibility, and the other kind of came down to social issues on my end.  You know how Aspies struggle with things like boundaries and either communicating too much or not enough?  No one had ever told me how much is too much to bug the doctor.  Now I know, and now I don’t do it.  I am very, very well-read about my health stuff.  Very.  And, if a doctor offers an idea that is either harmful (i.e., they want to give me WAY too much or WAY not enough insulin, or they want to double my pain medication doses when my pain doctor has explicitly said not to), then yes, I refuse.  If they offer an idea that I have already tried and has already not worked, I speak up.  The problem is that I do it in my super-direct Asperger’s way, and as I said, I butt heads.  All of this has lead to more accusations of mental health instability… when it’s truly a combo of Aspie communication style, Aspie social differences, and Aspie intensity of interests about a subject.

THIS is why awareness and acceptance matters.  I may have to find a way to speak to some medical students or health professionals or something in order to combat this whole issue, because it’s really unacceptable.  It’s a pancreas transplant for me, which would add years to my life (or at least add healthy years)… but it could be a life-saving heart transplant for someone else.  I’ve seen instances where people are denied transplants due to things like autism and intellectual disabilities.  In my case, it wasn’t a direct result of my autism but rather an indirect result.  

The plan, on my mind, is that we will wait for my genetics results over the coming months/year or so.  If I have mitochondrial disease, then we cannot transplant (it would kill me).  But, if I am cleared by genetics, then my mom thinks we should go to Cleveland Clinic (recommended to us by a UPMC employee who knows their stuff).

Oh.  As I left the Transplant Center, the nurse stopped me.  “By the way, honey, I weighed 207 on the scale this morning, and if I look like you, I’m doing just fine!”  I told her “right back at you!”  Bodies are beautiful, functional, and can be HEALTHY in every shape and size.  

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