Skip to main content

Confusing Doctors

This year, FINALLY, I had a few months appointment free over the summer.  I took the summer off because constantly using days off for appointments and trying to figure out what's going on inside my body is exhausting.  It takes up my mind every free moment.  It's just hard to do for 9 years without a break.

This fall, things were kind of quiet.  A few appointments here and there, but mostly good things were happening, weight loss, researching growth hormone replacement (more on that later), and trying to improve quality of life, instead of fixing problems.

That changed big time this winter.  I started having this dull, intermittent abdominal pain.  I was falling asleep every afternoon, even after sleeping 10 hours each night.  Something just felt off.  

Then, I turned yellow.  I noticed it a month or two ago, but no one else seemed to notice.  I mentioned it to a few people, and then one of my coworkers mentioned that the whites of my eyes were yellow.  I saw a nurse practitioner at my PCP's office, who seemed more concerned than I expected.  She looked at the size of my belly (bigger than usual), and the color of my skin and eyes.  Definitely jaundiced, and definitely swollen.  Labs were done, and of course, my liver function tests were high, and my bilirubin was high.  

I saw my endocrinologist a few days later, but the yellowness seemed to disappear.  I didn't think much of it but still had the achey abdominal pain.  I think at this point these doctors are a little afraid to find another thing, I mean, I made me favorite one cry when talking about the saga at Harvard Medical School.  

At my endocrine appointment last week, I mentioned it again.  She examined me closely, then got on the phone.  What if I was hemolyzing?  (BTW - hemolysis is the break down of red blood cells)  After a bunch of questions (most of the answers were a strong YES!), off to the lab I went.  Some tests did show hemolysis (low haptogloblin), and some didn't, (normal RBC).  And some were just off (lymphocytes, neutrophils).  No active infections or explanation for the unexpected.  The most worrying thing about all of this is that usually hemolysis is caused by something else. It doesn't usually happen by itself for no reason.

Off to hematology I go.

I hope you are all having a wonderful week, more later!


Comments

Post a Comment

Popular posts from this blog

2 Years Since my Adrenalectomy...would I do it again?

On September 2nd, 2010, I spent the day in one of the many operating rooms at MGH.  I had spent the night before talking and texting to friends and family, after seeing Wicked and going back to the hotel across the street from the hospital.  I cried a lot, because of the scary and fairly dangerous surgery ahead, because of the hope that this disease would FINALLY be behind me, and because of the long recovery ahead.  I woke up early and walked across the street with my mom, and my dad met us there.

The wait that morning was incredibly long, my 2 other surgeries in the 9 months prior had been very early and a pretty short wait.  I cried some more (no one should be surprised by this), and finally headed into the prep room.  I met with my surgeon one last time, and kissed my parents one last time.  As I waited in the cold, dark, cement hallway outside the numerous operating suites, a surgical resident marked the incision sites.  I knew there would be many small incisions, but having the…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 29