Skip to main content

10 days at MGH

It's been 10 days, and I am still in the hospital.  I walk two or three (very short) laps around this floor and my heart rate is upwards of 130, my lips, fingers, and toes are increasingly blue-tinged.  My oxygen saturation levels are even lower now, after sitting here for over a week.  So what have we accomplished so far?  Let me tell you.

I had the arterial blood gas sampling done on Sunday.  It took a couple more tries but success!  It was of course, painful but nothing that I couldn't handle, especially if it meant an answer and an easy fix.  My arterial blood looked very dark as she was drawing it out, not the bright red oxygenated blood you usually see from arteries.  The doctor commented on this, and said that it was very interesting. Unfortunately, I did not have an abnormal level of methemoglobin.  So that ruled out methemoglobinemia

The plan was to have an echocardiogram on Monday.  After waiting most of the day, I got pushed to the next day's schedule because they had too many patients on Monday.  So, I sat around all day while they monitored my heart and oxygen saturation. 

Tuesday, I had a regular echo.  It was totally normal. I think this was when I started to get frustrated.  The doctor I had liked and trusted so much the last few days was at the end of her shift, and would not be back before I expected to leave.  The doctor covering for her seemed nice, and competent, but wasn't searching for abnormal things.  I ended up getting a private room for the night with a great view of the city, and slept well for the first time in a few weeks. 

Wednesday, I saw the rheumatology and pulmonary teams.  The rheumatologist didn't have a lot to add, but the pulmonary team ( I think it was either a resident or fellow and the attending) thought it was worth it to do a stress echo with a bubble test to rule out any shunting, or holes in my heart or arteries in my lungs. This was a really interesting test.  I was laying down on an exam table, because they were a little concerned about me fainting, and peddled a bike while they took measurements and injected saline contrast.  Of course, I did not last long on that bike before having to call it quits.  Luckily, my symptoms resurfaced pretty quickly and I hit my peak heart rate within minutes.  The radiology fellow said she saw a shunt even at rest, but they would repeat the agitated saline while I was exerting myself to see if there was any change.  

I was so happy to have an answer.  A hole would be easy to fix, and would explain all of my symptoms, maybe including the stroke I had in 2012.  I researched more about this, and waited for the confirmation that this was the problem.  The general medicine doctor confirmed that I had an intrapulmonary shunt, and we would wait for pulmonary to guide us to the next step.  It seemed like a great fit for what I was experiencing, and a pretty straightforward fix.  Maybe it would improve my quality of life, maybe this is why I am always so tired, and can't walk up a flight of stairs without feeling like I climbed a mountain. 

But of course, as all things go - it could never be that easy.  Friday, before a holiday weekend, at 4:30pm, the pulmonary people came in and said they don't think the hole is significant enough to cause these symptoms, so on Tuesday, they would like me to have a stress cardiac catheterization.  I lost it a little bit at this point - why would the radiologist AND the medicine doctor tell me it was there if it wasn't significant? Especially when it made so much sense.  

I asked why this test would be different and their answer was to double check for pulmonary hypertension.  That was not a good enough answer for me.  They didn't have any ideas of what else could be going on, and didn't think it would be helpful to involve cardiology, or even endocrine, to see if they had any ideas.  I couldn't grasp how two doctors said this was the problem and the person who read the test thought it was insignificant.  

Unfortunately, here, at MGH, one of the biggest and most advanced hospitals in the world, they do not do any involved testing over the weekend.  They can do imaging though, so I asked if I could have my abdominal MRI as part of my yearly MEN-1/4 screening.  That happened yesterday, and took up a good 2 hours of my time between transport and the MRI itself.  I was pretty resistant to have the right heart catheterization with stress test but no one has come up with any better ideas.  The new doctor on my floor was able to explain in more detail what information they would get from this test that they wouldn't from any others.  So that is scheduled to take up most of my day tomorrow.  It doesn't help that I've had 3 days to think about it, and compare it to my inferior petrosal sinus sampling (IPSS), which was a more stressful procedure than brain surgery itself.

I'm crossing my fingers that I will not have pulmonary hypertension, because it sounds like they can't reverse any symptoms, they can only prevent (or try to prevent) further complications.  So this level of activity is the best it gets?  I am having a hard time grasping that. I'm really hoping that is not what they find.  Maybe they will see nothing and move on to disorders of the muscles that could be affecting my lungs and heart.  It's hard to go through the "what ifs".

I'll let you know what they find, but probably won't know until Wednesday.  Cross your fingers this test points everyone in the right direction, and is at least useful. 



Comments

  1. Bless your heart! Its so tough that you have to almost become a doctor yourself to get the answers you're searching for. Will be praying for you and an end to this mess of medical procedures.

    I've followed your blog for a while as I battled (still battle?) Cushings Disease myself. I don't want to be weird, but my heart goes out to you and I'd like to send you a care package. Please get in contact with me, if this is ok. If it is not, no hard feelings. :) cphillips1010 at gmail dot com

    ReplyDelete
    Replies
    1. You are so sweet! I am home now (working on an update now). I'll email you and we'll chat!

      Delete

Post a Comment

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

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 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…