Skip to main content

4 YEARS SINCE MY ADRENALECTOMY

Four years ago, I had a bilateral adrenalectomy.  When talking to other Cushing's patients who are contemplating surgery, I often tell them I would choose this 100 times over, I wouldn't ever make a different decision, but that's easy for me to say because I didn't have another option.  I was probably 300lbs, or close to it. The last weight I recorded was 285 at my last endocrine appointment, I knew I did not want to see 300, so I did not weigh myself for the weeks before my surgery. I was close to having a stroke, or heart attack, and either would be hard to recover from in my fragile state. My blood pressure was always very high, the morning of my surgery it was 160/100.  The radiation oncologist who I had a consult with mentioned that he didn't think I would live long enough to wait for radiation therapy to work (3-5 years).  I failed the test to get into some last minute medication trials to buy more time.  I literally had no choice but to have this surgery.  So, it was an easy choice.

In the year after my BLA, as I saw more friends and family, people would comment on how my legs were already less swollen, and my "trick" of having pitting edema was already gone. Although my swelling diminished, my weight did not.  I stayed at about 250 pounds for most of that year after losing much fluid.  The thought crossed my mind that I was not cured.  I must still be producing cortisol, because it seemed like every other treatment had failed me.  

So, I stopped taking steroids.  We all know this story.  Today, I weigh 150 pounds, less than I did in high school.  I finally have a solidly normal BMI.  My face is still rounder, and I still have that Cushing's double chin.  I have far too much extra skin on my abdomen, back, arms, and legs.  Really, it's everywhere.  Someday, I would like to fix that but I cannot trust that I will not go through this all again. I am quite sure that I still have adrenal tissue producing cortisol.  I have not needed Florinef, a mineral corticoid, for most of the summer, a time of year that most people need it most.  

I have had a longer journey with Cushing's Disease than most, but I am a better, stronger, more empathetic person because of it.  I learned who will always be there for me, despite the mood swings, crying, crying, crying, and the way I looked.  I have had the chance to teach people about Cushing's, by meeting new physicians while in the hospital, and talking to medical students and PA students. Of course, I thought having a bilateral adrenalectomy would quickly solve all health issues and I would go on to live a healthy, normal life, but that has been anything but the truth.  Medication trouble, vocal cord dysfunction, hemolytic jaundice, Lupus, parathyroid tumor, and possibly MEN-1, I still have lots to think about and watch for, and my life is still dominated by my lack of health.  

Comments

  1. Bless you Danielle. I am still awaiting a cure from Cushing's after two pituitary surgeries and one adrenal out. Your blogging about your experiences has helped so many of us to hang in there. I wish better health for you. You are in my prayers.

    ReplyDelete
  2. This comment has been removed by the author.

    ReplyDelete
  3. Hello Dainelle, I had Cushing's and had a bilateral adrenalectomy two years ago. I understand the pain and confusion you are going through. Trust me, I felt the same way many many times. After surgery I too thought things will go back to normal right away...but I come to found out that especially these thing takes time. I was reading your blog and thought to myself that you are a super strong person. Congrats on your recovery.

    ReplyDelete

Post a Comment

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood.

Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post.

To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer.

In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after return…

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland.

I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha…

Keeping in Touch

I have found it harder and harder to keep in touch with friends lately. I feel like it should be the opposite, with these smartphones in our hands 24/7, but I just feel more isolated.

A big part of the problem it is that I live at least an hour away from most of my friends, if not more.  There's not a lot of friends that I can call last minute to say "Hey, want to do something?".  Any activity takes more planning, more effort on both sides.  I often hesitate to plan something too far in advance because I'm worried I might have to cancel if I don't feel up to it.

I tend to plan more group events where I have the control, like yearly trips to Martha's Vineyard (which is so so soon!), where I usually have my own car, and it tends to be a slower paced weekend.  I won't inconvenience anyone when I need to take a break.

I need to make more of an effort, I know that.  And if I cancel on you once or twice, don't take it personally.  It's probably just be…