It has been an eventful couple of months since I last wrote. I am usually more than happy to talk about my health, but lately I have sort of gotten tired of that. It is the same sad story, and I'm so ready for this chapter to be over.
Brief (and I mean brief) of the last couple of months:
- I recovered well from my IV antibiotics in December and felt good until mid-January. Immediately upon return from a long weekend in Cleveland to visit my dad, I developed what turned out to be the flu. I went to clinic looking pretty much the worse they'd ever seen me and end up in the hospital for four nights. (We missed a planned overnight to Charlotte.)
- My last day in the hospital, I decide to take the plunge and get the much discussed and pondered port-a-cath instead of another picc line. (It will make the IV process easier and it will allow me to stick more to my normal routine during that time as well.) The procedure goes really well!
- A week later, I start having radiating pains into my wrist and shoulder. Turns out to be a blood clot. I am hospitalized again after a fairly traumatic night in the ER, and put on anti-coagulants. I am scared I will lose my port but that turns out to not be an issue at that time. I make a deal with the doc that if he lets me out, I will not get on the plane the next day for Vegas. I miss our much-anticipated vacation to Las Vegas - pretty much the icing on the cake of shittyness.
- The treatment for a blood clot is a pain in the ass. Well, literally it begins as a pain in the abdomen with these horrible shots I had to give twice a day until my coumadin levels were stabilized. (Coumadin is a very tricky medicine to regulate and has a very narrow range of effectiveness.) I start a series of appointments to the coumadin clinic at UNC where I will be monitored (i.e. on coumadin) for at least three months.
For those of you who know nothing about blood clots (which was me three weeks ago), the big danger is a pulmonary embolism - where a piece of the clot breaks off and gets into your lung causing major problems. Major as in, possibly over half the people that get them are dead within 2 hours of the event. My doctor guesses the odds would be even higher for me.
The signs of a pulmonary embolism, it turns out, are extremely close to many things that are common for people with CF, especially if there is a history of anxiety: Sharp pains that increase when you inhale, sudden shortness of breath, rapid heart rate, an unexplained cough sometimes accompanied with blood. The bottom line is, are you freakin' kidding me?!? I have pain in my lungs all the time, I cough all day long, and shortness of breath and rapid heart rate are really common with heightened anxiety. So in addition to being anxious the PE might happen, I worry that the anxiety symptoms themselves could be the start of a PE!
But back to the anxiety in a minute. Being on coumadin is tricky for me for a couple of reasons. One, I have been known to have lung bleeds from time to time, and if that were to happen now it would be greatly exacerbated. I have had to cut out herbal meds and supplements because so many things can react with coumadin. I have cut one of my inhaled meds that can increase the chances of bleeding to once a day. I cannot take any OTC meds besides Tylenol without explicitly asking them. And lastly, I have to try to be consistent in the amount of green leafy vegetables that I consume, because Vitamin K in those interferes with it as well. Other than that, I'm to carry on with life as normal! (Haha.)
So, while my lung bleeds are often tied to something (i.e. sickness or being around smoke), they have sometimes - like on the night of my 30th birthday dinner - been perfectly random. I went to the bathroom. Cough, cough. Oh my! It even happened in yoga one time after I bent over quickly. Fortunately it has never been a lot, but man, it is one of the scariest things I have ever experienced. A tiny bit of blood like that makes a big impression. So I have been extremely paranoid and watchful for this to happen since I was released from the hospital.
In addition to that, every ache, pain, etc. is cause for alarm. If it is in my arms or legs - is that a sign of another clot? (In my defense for not sounding totally looney right now, my coumadin levels dipped dangerously low last week so that I had basically no protection. They could have been low for as much as a week, so I thought it plausible that something new could have cropped up.) If it happened when I exercised - could that be an irritant to cause bleeding? (Exercise is a trigger for some people with CF.) Which brings me to last Friday.
I was driving to work and had some sharp (although mild) pains in my lung. I spent the next couple of hours agonizing (i.e. completely freaking out on the inside) on whether or not to page the doctor. I felt surely they would send me to the ER for a CT scan to be cautious I wasn't having a pulmonary embolism. (Side note: we had a surprise 70th birthday party planned for my mom that night with family coming in from four states - I did not want to sit needlessly in the ER and miss that.) But, a pleasant surprise, they did not.
I developed another nagging pain in my lung Saturday night. It seemed similarly mild, but when it came back again this morning in the same place I was concerned enough to page the doctor again. Again, they reassured me, if this was a life-threatening PE, I would definitely know that something was majorly wrong. Whew!
So yes, I have been somewhat down, also angry about the blood clot, and sad to have yet another thing to deal with for my entire life. (More on that in another post, if I think of it.) My anxiety has been pretty bad - I've regularly had mini-panic attacks or the start of a panic attack that I was able to divert. I am proud that I have gotten through all of this with approximately 2 Xanex. But, as I told Todd, I have been a frequent user of the mental Xanex. It works pretty well, but I'm hoping my need for it will soon be over.
