Eighteen Months

Eighteen months.

Eighteen. I just caught myself humming the Alice Cooper song. I got distracted.

I've been distracted a lot the last few months but over all, I've been relatively well enough. There seems to be transplant patients who do better than I do, who come out of the hospital without any issues what-so-ever, feel great, and their blood-work and kidney and liver functions are wonderful. Then, there are transplant patients who are constantly ill and always in the hospital with infections, breathing issues, fungus or bacteria growing in their lungs, low white blood counts, and/or low kidney functions. I have discovered it's not unusual for some lung transplant patients to need kidney transplants some time after their lung transplant because the medications can destroy the kidneys. Also, the medications transplant patients take can destroy bone and weaken muscle. Some patients have problems with osteoporosis. And not life-threatening, but certainly inconvenient, are the other usual side effects of the medicine, like tremors and forgetfulness.

Anyway, I seem to be somewhere in the middle. Nothing majorly wrong, thankfully, but enough to limit me. I've adjusted my days and weeks accordingly. It does frustrate me but I think I'm getting somewhat used to it. Perhaps I'm dealing with it more efficiently. Or at least I am trying. Transplant life is different. But it's my life now and I don't complain.

My latest trip to Cleveland revealed that my pulmonary function is wonderful. My meningioma (brain tumor) has not grown. Good! We are still working on controlling the migraines. I have pretty much run the gamut of migraine medications so my doctor has switched up some of my other medications to see if we can have any success that way. I cannot take some migraine medications because they will interact with what I'm already taking, or they will be too hard on my kidneys (which are not functioning all too well due to the harsh medications I am taking). I was also allergic to a migraine medication I tried recently, adding to the already limited list of options. I also completed my third round of Botox injections into my head and neck and my neurologist raised the dosage on one of the preventatives I am on.

At this point we will see where this takes me. I am having blood-work done weekly until my levels stabilize. And, I am focused on reducing my migraine triggers and trying my best to stay out of the ER. I also ordered new prescription glasses that have rose-colored lenses. A rose tint is supposed to help reduce light sensitivity, which many migraine sufferers have. Maybe in a few weeks I'll be humming a John Conlee tune. I'll let you know.

No Whining

There was a time I was too busy. Too tired. So sore. I complained about the daily hurdles of life--grocery shopping, cooking, cleaning, etc. I kept thinking that I had to push through it so these things would get done. Because, well, you know, who is going to do them if I don't do them? If I didn't sacrifice my time and energy, I would have piles of stuff, unopened mail, dusty corners, un-returned library books, and dirty dishes. I'd have no groceries and nothing to cook and my family would suffer.

I complained. Yet, now I realize there were very few times I had ever really felt pain I couldn't work through. And, I never knew what fatigue really was. See, if I had really known what pain and fatigue was, there would have been no working through anything. If I was truly in pain and that tired I wouldn't have been able to cook, clean, or go grocery shopping.  Because, when it gets down to it, true pain and fatigue stops you in your tracks. You cannot do what you want to do. And, you cannot do what you need to do. Things pile up and don't get done. Meetings go unattended. Events and holidays never make it on the calendar. And, even though one's brain knows these things have to be done, or should be getting done, there is no time or energy to sacrifice. All time and energy has to be focused on just surviving the day, trying to accomplish the basics like brushing one's teeth, eating, showering, and breathing.

When I am well enough I never want to catch myself whining about the daily hurdles of life again. Please stop me if I ever exclaim, "Oh, I'm just so busy." And, remind me that if I'm that busy, the universe is probably trying to tell me something.

Distractions

My friends are great. They pay attention. In fact, I've been reminded by those who don't live on Facebook (and are not close enough to check in on me) that I haven't posted since the 14th. I really should do a better job.

But, at times, I cannot focus and have no idea what to write about. Or, I'm just too tired to write... or think. The medicines and lack of oxygen to my brain have certainly made me less cerebral. I surprise myself at times. Some of it is just... well, so random. (I risk sounding like my daughter.) For example, I started watching the Ellen DeGeneres Show. Me watch TV? And it's not a documentary. I know! And, yesterday morning, I actually clicked an internet link to take me to Tiny Adorable Animals That Will Make You Squee. (Apparently squee is a word. Where have I been the last few years?) Then I was lured to click on another link: 32 Reasons Robert Downey Jr. Is The Most Perfect Man In The Universe. How could I not click that?

That Iron Man and me, we have something in common. We both need to be hooked up to devices that keep us alive. Tony Stark, the Iron Man character played by Robert Downey Jr., was hooked up to an electromagnet in his chest that kept shrapnel that was in his body from an explosion from reaching his heart. He invented an implantable version that made him more mobile. (Comic book nerds are welcome to correct me on any of the technical details.) In some ways, it's like the Hickman catheter implanted in my chest. But, in shape and style, it reminds me of the pendant-style oxymizer that is used to maximize oxygen concentration. I think I could have a terrific Halloween costume in the works. I'm just not sure an oxygen tank would fit in the Iron Man suit. Perhaps Stark Industries could come up with something. Hey Tony, can you work on that?

But I realize that even though Robert Downey Jr. is certainly a worthy distraction, an update is overdue. After returning from Cleveland we tried titrating up on the Flolan again. I didn't do well... again. I felt sick and agitated. My oxygen level was dropping more frequently and recovery time was longer. So, last Thursday I came back down to the same amount of nanograms I left the hospital on in January. Needless to say, there were a couple weeks in there that seemed more rough than usual.

Also, I'm getting better about being open to accepting help and allowing my life to be more transparent. I can no longer hide behind this nasal cannula or my super hero persona.