Life with Chronic Illness

I feel like I've been pretty lucky the last week and a half. No horrible post-op symptoms. Until today. I had previously said that the worst headache of my life was the day after surgery. I take it back. Today I had the worst headache of my life.

Yesterday I started feeling a little bit different. It's hard to put my finger on what was different exactly, but my legs started swelling up again, my face got puffy, and I magically gained 3lbs overnight. I had a mini panic attack thinking that the Cushing's was coming back, but after some deep breaths I had a new theory. Low sodium. It is another very common complication after any kind of pituitary surgery, and I had been warned MANY times about the signs to look for. My sodium levels were initially high after surgery, then dipped to the lowest of the normal range and have been hanging out there for the past week. It is typical to experience a sodium drop 7-10 days after surgery. Here we are! An 8am stat lab draw …

1 week post-op today! I decided to make this blog public because I do not want to bore everyone with the same updates over and over (I could talk about this stuff for days) but want to keep anyone who wants to know informed. So, here it goes!

Surgery was last Wednesday, the 16th. All signs pointed to pituitary Cushing's, so the plan was to remove the suspected tumor from the right side of my pituitary gland. This is done by going through my nose. It is a 3 hour surgery and most people spend just 1 night in the hospital. Some people have referred to it as the "Drive-Thru" version of brain surgery. The actual operation went well, I was moved up to a floor by Wednesday night, and had a few issues. My sodium levels were off, which led to peeing every 30 minutes for almost 36 hours after surgery! Thankfully, they fixed that problem with some anti-diuretic so I could get some sleep. I also had some fluid leakage, which they thought might be cerebral spinal fluid (CSF …

Someone on the Cushing's Help website wrote this letter and I thought this was a great way of explaining this disease to friends and family - the link to the original letter can be found here:
http://www.cushings-help.com/family-letter.htm

Dear friends and family:

I am writing this letter to share with you some basic
facts about Cushing's Disease/Syndrome and the
recovery process so that you will have sufficient
information to form realistic expectations about me
and my ability to engage in certain activities in
light of this disease and its aftermath.

As you know, Cushing's is a rare endocrine disorder
characterized by hypercortisolism. Cortisol is a
hormone produced by the adrenal glands and is vital to
regulate the body's cardivoascular functions and
metabolism, to boost the immune system and to fight
inflammation. But its most important job is to help
the body to respond to stress.

The adrenal glands release cortisol in response to
stress, so atheletes, women experiencing pregnanc…

Tomorrow morning I go in for my IPSS. So much is riding on this one procedure! An Inferior Petrosal Sinus Sampling (IPSS) is when they take two catheters, run them up each femoral vein, through your heart, to your pituitary gland to collect blood. At the same time, they collect blood from your arm and use the ratio of ACTH to determine that it is in fact the tumor that is causing Cushing's syndrome. The tricky thing is, is if the tumor is not "active" when they go in, the test is useless.

I am very anxious to get this part over with. It is allegedly more uncomfortable than the surgery process, so once I get through this it should be all downhill. More news tomorrow night :)

Today was not a good day. I cried. A lot. At work, at home, in front of almost everyone I know. I am mad that I have this disease. I am so relieved to have an answer, but now I am starting to grieve for the first time in almost 5 years. All of this energy up until this point was going towards figuring out what was wrong, and now that we found it I am realizing how different my life might've been without it. I feel like I missed out on a lot the last few years, and there's nothing I can do to get those times back.

I realize that there's nothing I can do to change my past - but I hope that I will be back to normal soon (I don't even remember what normal feels like!) and ready to move on.

So today I got my first high 24hr urine cortisol! All of my salivary tests were abnormally low, which my doctor is very interested in. I heard someone say "You have Cushing's" for the first time! Very exciting to know that I AM NOT CRAZY and all of this is real. The next step is going to be to do a few more 24 hour urine tests. Once those come back high again (fingers crossed) I will have a Petrosal Sinus Sampling, where they will insert a catheter from my leg up to my pituitary gland to determine that the Cushing's is being caused by the tumor there. If all goes well with that, I will have surgery! Hopefully by the end of the year this will be over and I will be cured.