skip to main |
skip to sidebar
I was miserable on Monday, Tuesday and Wednesday last week. I felt like my body weight had doubled by the time I finished my first cup of coffee. I closed my eyes and rested my head in my hands when I went to the bathroom. I felt emotionally overwhelmed by the idea of carrying on this way for the rest of my life. I could barely keep my body upright during meetings and didn't even try at my desk. I avoided unnecessary conversations with coworkers. I can't quite articulate how weak and fragile my body felt by the time I arrived home each evening. I felt like I was dying.
In the preceding week or two, when I was trying a new medicine called Nuvigil, I had somehow managed to forget how miserable I had been every single day for nearly three years.
My new and beloved sleep doctor prescribed Nuvigil a few weeks ago as the first of several ideas he had proposed. I tried taking it at different times of the day as advised and didn't notice any improvements, but I did start feeling more heart palpitations than usual. With no noticeable change except the psychological discomfort that comes with frequent palpitations, I decided to stop taking the medication at the end of last week. It was only when I reverted to my previous level of agonizing fatigue that I understood the difference that Nuvigil was making. I decided I would start taking it again on Thursday morning and closely monitor how I felt.
I was near tears by the time of my Thursday evening commute, as I finally allowed myself to accept and celebrate the impact of this new medication. Finally, after being truly miserable and near despair for years, FINALLY, something was helping. After being told time and time again that I might not ever improve, I have seen evidence of tangible improvement. I am elated and encouraged and triumphant.
I still ran out of gas at the end of each day on Thursday and Friday. I still avoided people. I still rested my head in my hands whenever possible. I still crawled into bed exhausted at 9 o'clock each night. I still rested most of the weekend. I am not well, to be sure. And I am far from cured. But words cannot describe the gratitude and relief I feel for this measurable improvement. I'm certain I will forget about this win soon, when I become accustomed to and frustrated by my new normal, but I write this as my reminder. There is now not only hope, but reason to hope.
My dear friends Marguerite and Chris gave me a plaque not long after my transplant that read "fluctuat nec mergitur". Not only is it the motto of Paris (this francophile's favorite place on earth!) but its meaning couldn't be more appropriate for my situation: she is tossed by the waves but does not sink.
Thanks for the outpouring of support after my last post, I really appreciated all of the emails and texts. It turns out my cortisol level is actually a little bit high, so that is most definitely not the cause of my fatigue. I am now spending an even unhealthier amount of time on webMD diagnosing myself with all sorts of mysterious diseases. I’m trying not to make myself completely crazy, but I will have plenty of ideas to discuss with my hematologist when I see him again early next month. If nothing comes out of that, I will likely see if I can get a full evaluation at the Mayo Clinic. I hear it’s a great time of year to visit Minnesota.
REALLY?!
• I was totally wiped out after 15 minutes of playing fetch this morning. And I wasn’t even the one doing the fetching.
• Marguerite walked into my office the other day and said, “You look exhausted.” Uh, what’s your point?
• Amanda saw that I elected to put the maximum amount of money in my pre-tax health fund and said, “You put THAT much in your health account?” Um, have we met? I tend to have a few medical bills from time to time…
• Someone is clearly trying to sabotage my new diet plan by bringing leftover Halloween candy into the office every day. I successfully abstained from [amazingly mouth-watering delicious-looking] cupcakes TWICE last week, but those itty bitty teeny tiny candies can’t hurt me, right?
• I never thought taking pills four times a day would feel anything but cumbersome, but after a couple of months of taking meds six times a day, four feels like nothing. It’s all about perspective, I guess.
• I was going to write a post called “Beating the Odds – Part Deux” a few weeks ago but lost steam. Here’s the punchline: I got bed bugs in a hotel on a recent business trip. This was my SECOND encounter with these tiny creatures. Are you &%#@ing kidding me??!
Switching gears, a friend wrote me a note this morning and said, “I hope you find something in each day to be grateful for, whether big or small.” What a great charge for all of us, especially as Thanksgiving draws near.
As grateful as I am to have survived two years with heart disease and to have a healthy heart that allows me to be here today, I continue to struggle with debilitating fatigue. As I recently told a friend, surviving isn’t enough anymore – I want to actually live again. It becomes pretty depressing to spend each day looking forward to an early bedtime, to sleep away most weekends and to see no light at the end of the tunnel. My energy level has been low for two years now, and I’m sick of it!
Everyone has been blaming my fatigue on anemia even though I have continued to feel bad during times with pretty normal hemoglobin levels. When I went to see my hematologist last week, I was delighted to find that he believes there is something causing this exhaustion beyond anemia. I felt like I was on the show ‘House’ as I watched him and his fellow brainstorm about what might be wrong. Finally, after muttering in terms I didn’t understand, his eyes lit up. He thinks I may have a cortisol deficiency that would have been caused by my adrenal glands being damaged when my organs failed two years ago.
I’ll find out early this week whether or not my cortisol level is abnormal. I really hope it is because it would apparently be a relatively simple fix. However, I’m recommitting to being hopeful and optimistic about finding a solution to this exhaustion – whatever it is.
Most people make New Year’s Resolutions, but after feeling a glimmer of hope and reflecting on my recent mental state, I don’t want to wait another two months. So here’s my November Resolution:
Anemia Be Gone
My hematologist still believes some of my fatigue is being driven by anemia, and we have a plan. Every Friday morning at 7:30 I will have my blood drawn for a hemoglobin level. If it's below a certain point, I'll get a shot of Procrit, which helps stimulate red blood cell production, which treats anemia. My commitment to feeling better is stronger than the physiological inertia that shivers at the sound of a 7:30 appointment in New Brunswick. So far so good – I got my first shot this past Friday.
Battle On
I really hope cortisol is the answer to my nagging exhaustion, but I am committed to finding and fixing whatever else is wrong with me. I do not accept feeling this way. There is a solution.
Choose Happiness
Having an upbeat attitude and optimistic outlook served me well for a year and a half, but I have allowed myself to sink into a spiral of negativity for the last few months. Feeling sad and sorry for myself will only make me feel worse, so I choose instead to be happy. I’m going to believe in a better future – knowing that the occasional pity party is inevitable and normal.
Diet For Good
The less I have believed I can feel good again, the more I have ignored my diet. But I know I can be better. I stuck to a painstaking diet of very low sodium for eight months before my transplant. I effectively stopped eating sweets for the first couple of months after my diabetes diagnosis. But in the last six or eight months, I have almost completely ignored my diet. It started with cheating occasionally but has developed into bad eating habits that I justify with an “I’m not going to live forever so I want to enjoy myself” mentality. While I still wholeheartedly embrace the mentality in general, I know that small improvements in my diet can contribute to a healthier – and happier – lifestyle.
People naturally ask me how I feel a lot. I typically give the shortest answer possible because I don’t know how much information people really want. I figured I would post my feelings here for you to read or not read as you wish. I’m no poet, but the post seemed boring when I wrote it out in prose. So, below is my attempt at a poem that is hopefully slightly better than my previous work, Ode to the Bedside Commode, if not as entertaining.
I feel thankful for the strength of the heartbeat that keeps me up at night.
Every strange sensation in my body causes me to feel fright.
I feel joyful knowing I recently laughed hard enough to leave my chest sore for days.
I feel grateful for the sympathy and support you’ve shown in so many ways.
I feel compelled to drive organ donation and the fight against heart disease.
I feel fearful and frustrated about my newly developed diabetes.
My legs already feel stronger than they’ve felt in well over a year;
I feel motivated and ready now to get my upper body in gear.
I feel most comfortable with a good book in a nice warm bath
And least so on the freezing cold table in the cath lab.
I feel less and less plagued by my medications’ many side effects,
Though I’m always a bit on edge, wondering what might hit me next.
I feel inspired by transplant recipients who go on to do great things
Like run marathons, climb tall mountains and start families.
I feel energetic most of the time, something that used to be so rare,
But I occasionally feel exhausted by the overwhelming nature of my care.
I feel frustrated by the pain in my foot that prevents a long walk or hike,
But I’m glad I can get some good exercise on the stationary bike.
I feel relieved each time I remember I’m no longer tethered to medical equipment.
I feel fulfilled when I can answer a question for a fellow heart patient.
Hand tremors make me feel decrepit but shouldn’t last too many more weeks.
My newfound fear of germs makes me feel like a bit of a freak.
I feel optimistic about the future and grateful for the opportunity to plan for distant dates.
I feel eager to hit the six month mark, when I should return to a pretty normal state.
I feel haunted by what could have happened to me, the “what ifs” play on repeat in my mind.
But mostly, I feel fortunate for the good providence that’s kept me alive since October 2009.
