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Showing posts from 2015

5 Years Post-BLA

It's crazy to think that it's only been 5 years.  I feel like I've lived without adrenal glands for a whole lifetime!

As you may know, from reading my blog, seeing me, or talking to me at any point in the last year, this has been the most challenging year of my entire life.  I cannot believe I survived it.  Let's go back to last September.

I remember making a comment to my mom that I couldn't believe I had not been hospitalized once in 2014!  I could not believe it.  What an accomplishment that I had stayed healthy and dealt with minor issues on my own without needing an admission!  It seemed like the moment I said that, the universe changed it's plans.  After a few weeks of mentioning to my mom, sister, and maybe even coworkers that I thought my appendix was acting up, one morning before work I drove myself to the ER to get it checked.  Sure enough, appendicitis it was.  The surgery was pretty easy, and back to my life I went.

In December, right before Chri…


This past weekend, I got a much needed emotional boost.  All of last week, I was terrified of getting sick, and every chill, cough, or headache made me nervous about having to cancel last minute.  A friend of mine was getting married, and I took a long weekend so I could spend an extra day with my BFF.  In the end, it all worked out well, despite a nagging headache the night of the wedding.

I have not been doing well lately, as you could probably gather from my last post, and the change of scenery combined with some alone time driving, and seeing a few of my favorite people was a much overdue ray of sunshine in my life. The wedding was beautiful, and it couldn't have been a more perfect afternoon, despite the threat of storms earlier on Saturday.  I got to see a friend from college that I hadn't seen in many years, which was great, and made a couple new friends too!

In other news, my favorite hospital of all time, Mass General, was rated #1 in the nation by US News!  My expe…


I have stopped blogging recently because I feel like I don't know what to say.  I have run out of optimism (and I never had much to begin with).  I know not everyone wants to hear or read about my problems.  A lot of people have much bigger problems.  I get that.  But it's hard not to feel down when I can't catch a break.

I was wishing I had a stronger faith, that all of this is for some greater purpose, but it's hard to have faith that things will be better when I just keep getting knocked down.  Aside from all of the recent health problems keeping me down, my job is now in jeopardy because of my health.  Although it's not my dream job, it occupies my time, keeps my mind off of my own issues.  I have little hope that things will ever be "better".  It seems like every time  I think I've hit the bottom, it's only just the beginning.

I hate having to say no to things because of my health.  I feel like I miss out on so much because I am not able to …

MGH Round 2

Hi all,

I've been pretty absent from blogging/life activities over the last month or two because my whole life seems to be consumed again by illness and complications from Adrenal Insufficiency.  Right now, I'm typing from my private room at Mass General, where I have been since Saturday.  Before that, I was at a local hospital for a few nights.

After being discharged with no answers for my shortness of breath in January, and then refusing further treatment for Lupus related hemolytic anemia, I went back to work and tried to continue on as normal.  This worked for a while, but then enlarged lymph nodes started popping up all over my neck.  I was seen a few times at my PCP's office, and at first thought it might be the start of a virus, but when they didn't disappear after a few weeks, I had an ultrasound to see if we could find a cause.  It turns out, aside from multiple slightly enlarged lymph nodes, I had one whopper lymph node on the left side of my neck, which we …

Endocrine and Rheumatology Follow Up Visits

I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up happening a few weeks earlier than I was scheduled to see them. 
My endocrinologist was stumped about all that had gone on at the hospital - so many tests and such severe symptoms that it seemed impossible that they found nothing that would explain what was going on.  My hemolysis seemed to get a lot worse while I was off dapsone, my hemoglobin dropping below 10.  Because of all this, she thought it was reasonable to stop the dapsone all together, as it may be a cause of the symptoms I have had, but wanted me to check with rheumatology first to see if they agreed.  I also had labs to check that my ACTH came down, and my electrolytes were normal.  
I emailed my rheumatologist to see if he thought it was okay to stop the dapsone, and he asked me to come in the next day to discuss options.  Immediately I knew I didn't have a lot of o…

Home, but Still Sick

I was discharged from MGH on January 21st, after I had the cardio-pulmonary exercise testing with the right heart catheterization.  We still don't know exactly what is causing the shortness of breath, tachycardia, and hypoxia.

The cardiac catheterization part of the test I had Tuesday was so easy. No anesthesia, just some local lidocaine to numb my neck, where they would put the catheter in.  I was really nervous, but one of the nurses stood right next to my head, and instructed me on when not to move, and when to hold my breath.  When I had my IPSS, they had a lot of trouble getting through one of my jugular veins, because it had never fully formed.  They made note of that and went on the other side. They had it positioned through my heart and into my pulmonary artery in about 20 minutes.  Then, the hard part started.  I had to sit up, get in a wheelchair, and be wheeled to the pulmonary lab all while this big contraption is sticking out of my neck.  Usually, if you were laying …

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 …

Another Day, Another Hospital Stay

This week, my heart rate has been over 100 since Monday.  I saw my PCP's office twice, once for labs and a vitals check, and the next for a visit, EKG, and 24 hour monitor.  Everything but the EKG looked fine, the monitor showed a normal, but fast, rhythm, averaging at 100, but peaking at 150.  Usually, my heart rate is in the 50's.

Friday, after having not a lot of answers from anyone, I had worsening shortness of breath, and couldn't walk the shortest distance without sitting down or taking a break.  I left work to go to the ER at MGH after talking to my endocrinologist.  I have had lab abnormalities for about 3 weeks, and this would be a good opportunity to investigate more.

So, I spent 1 night on the ER observation floor, got lots of monitoring, some walks which showed that my oxygen levels went down significantly with activity, a chest CT to rule out a blood clot in my lungs despite a normal D-Dimer, and some sugar and insulin to attempt to draw potassium out of my …

Happy New Year!

Happy 2015!  With a new year, lots of people make resolutions.  The most common resolution?  To exercise more, to get back to the gym.  As many of my friends and family members know, I am not one to jump at the chance of physical activity.  There are very few active things that I find enjoyable.  I grew up skiing every weekend, and was an active kid, participating in dance classes, cheerleading, and even trying soccer.  
Even though I was an active child, I dreaded gym class, and used to look for excuses when it came time for fitness tests like running a mile, doing pull ups, or climbing that rope to the ceiling.  Despite all of this, I think most of my fear came from not being able to keep up with friends and classmates, or not being able to complete the task.  In college, this lead to getting a doctor's excuse so I wouldn't have to complete my physical education requirements, something that most of my friends looked forward too.  Getting school credit for skiing, bowling or …

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