It's been a while since I've posted anything up here, which actually is good news. For the first time in years, things have been pretty stable. Every three weeks, I go in for my lovely treatment (hint - lovely is definitely an insert for another word) and every six weeks or so, I visit with my oncologist to make sure everything is working correctly. So far, the treatment has definitely kept things from visibly growing on the CT scans and given that that's all they can do for metastatic carcinoids, I'll happily accept those results.
Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.
The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.
So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.
Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.
So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.
The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.
As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.
