My problems started over a week ago when I began to feel like I was succumbing to an upper respiratory infection.
To everybody else, all you readers, an upper respiratory infection or URI is probably sounding pretty scary.
Don't be scared. In your world, it's called getting a cold.
I start getting my colds like everyone else, from an exposure to someone who is sick, by not taking my proper precautions such as frequent hand washing and wearing a mask.
The onset is similar too.
I started with a head cold and a case of the miserables. I always get sinus infections. In fact, I have a big glob of snot in my left sinus.
I'm a permanent snot head.
I tried to rest. I tried to lay low, hide, watch tv, eat chicken soup, miso soup, and drink lots of fluids, but when I started developing a cough and then the cough started coming with spit, it was time to call the doc for some standard orders.
I received my blood cultures, chest x-ray and levaquin in hopes this URI would not cause a setback like pneumonia that would have me in the hospital and bed ridden for 6 weeks.
I continued on my merry way down to my sister's house independently only to be surprised midway through the trip by my nephew's sudden respiratory infection with fever and retractions of his own.
At that point I figured, "I'm either screwed or safe. I've been exposed. I'm taking an antibiotic. There is no going back now."
Again, I continued on my merry way until I could no longer deny the shortness of breath that was beginning to interfere with the easiest of everyday activities again, such as walking.
My lungs began to taunt me with their wheezes and squeeking. I started to use my oxygen to compensate and continue being a house wife, but I can feel the mental changes, the fatigue, the cloudiness starting to set in.
This is what happens to a person an immunocompromised person with bronchiolitis obliterans that contracts a cold, a simple, run-of-the-mill cold.
One week, I'm fine, running around, coaching basketball, the next I'm carrying my oxygen tank, huffing and puffing, and getting wheeled in a wheelchair after lectures from multiple providers telling me I am, in fact, SICK, VERY VERY SICK.
I really couldn't tell. I was busy babying my babies and trying to keep life where it was, where I want it.
At that point, reality hit, I decided it was time to call in the team. It's important that I make my decision with as clear a mind as possible, and luckily, the team called back quickly.
Yesterday's appointment actually went well.
I think they gave me a little of that emotion, I forgot what it's called, I almost didn't recognize it, I think it's HOPE.
Not that I've been entirely HOPELESS these past couple months, but I can't say I was envisioning any picture of health for my future.
My gvhd specialist at Dana Farber is agreeing with my pulmonologist and recommending ECP (extra corporeal photo-immune) or photopheresis as treatment for my GVHD.
This would entail several clinic visits for the first few weeks to remove my blood and have it processed through a cell manipulation machine where the white cells manipulated.
The Cleveland Clinic explains the process well: When your blood first enters the machine, it is mixed with an anticoagulant medicine to prevent it from clotting. Then, the cell separation machine collects the lymphocytes from your blood and mixes them with the drug 8-methoxypsoralen or UVADEX. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The lymphocytes and UVADEX are next exposed to ultraviolet A light inside the machine. Lastly, the lymphocytes and the rest of your blood are re-infused to you through another lumen in your catheter.
Apparently, the side effects are minimal (but I'm suspicious. I've heard this before). There could be a drop in blood pressure or the possibility of infection. I will need some sort of ACCESS, such as a central line, medi-port etc., which is now becoming a problem because I have had so many in the past.
As some of you may remember my body rejected my last mediport, refused to heal after the surgery to place it and pushed it right out of my body by deteriorating the skin.
I wouldn't want that to happen again, but that doesn't change the fact I will need venous access for 6 months.
Yes, this procedure, which takes 3-4 hours at a time will occur a minimum of once weekly for 6 full months.
We are unsure if the procedure is even offered at Dartmouth. I am also unsure that even if it is offered there if that is the route I will choose.
Convenience is an important factor; however, if I have to factor in setbacks from lack of experience or anxiety and fear on my part, the travel and expenses are worth the time.
We are talking about my lungs, life, and livelihood here.
But everyone in my life seems to have a different opinion on that one.
None of those people spent the time in the hospital this past fall begging for pain control and oxygen while simultaneously undergoing so many procedures that they'd wake up to find new incision that they could not explain.
However, those people will be the ones who are affected by my decision. They'll be the ones driving, coordinating, grocery shopping and babysitting while I'm indisposed.
Luckily, whatever the decision, I have help. We've done it before, and we can do it again, hopefully, this time, for the final, successful time.