Chapter 5 - Testing Continued

Yes, I was decidedly hungry after the Glofil (I had been misspelling it), but there was no time- I finished just in time to make it over to the Imaging Center for a Mammogram & a Bone Density test. I believe this is when I sent Bettie to eat- it really doesn't matter- the point is, there was absolutely no time on my schedule on any day for lunch! At this point, I have very little appetite as a rule, but after several hours (like 6), I do get hungry. We solved it by packing snacks like cheese crackers & fruit in my bag on the other days. I had to carry my nebulizer around with me (that is what I use for breathing treatments, and it is portable, meaning it has a battery, but of course the battery has to be charged! There are always problems with that.) so I used a really great tote bag that was a Christmas gift several years ago, and I put my life in it. There was nothing unusual or dramatic about the two tests at the Imaging Center- so it was on to the Pulmonary lab, where things really got interesting. I have now had what is referred to as "Pulmonary Function Tests" about 5 times in various locations. It has been one way that I can judge the disease's progress- and it has been progressing exponentially since Christmas. A full-fledged PFT series takes place in a clear plexiglass chamber. The technician always asks if you are claustrophobic, and I am not, and besides, since the box is clear, I don't see how it would bother anyone, but I guess it does. You sit on the seat, which is like a bicycle seat, and put your mouth on the mouthpiece which is designed to completely fill your mouth- you have to "smile" to get around it. You clamp your teeth into the rubber mouthpiece and form a tight seal. There is a good-size hole in the gizmo, and they can measure various things because you are hooked up to a computer. Basically, it checks to see how deeply you can breathe, how long you can hold your breath, and they give you various tests that are a combination of different commands, including "pant like a puppy", and "blow out as hard as you can, & then keep on forcing the air out until your lungs are empty." Well, back when I first saw Dr. Gonzalez, in early 2008, I passed the PFTs with flying colors. At that point, my only symptom was the chronic & very annoying cough, and it was a non-productive cough. So I know how a "normal" set of lungs is supposed to operate. Of course my lungs weren't normal, but they hadn't scarred so badly by early 2008 that it interfered with my ability to breathe. Suffice it to say that I have gone way downhill in the past 2 years, to the extent that I cannot pass any of the tests. The difficult thing about it is that there are 3 trials on each test. They want to capture your very best effort- well, mine is "dismal, dismal & more dismal" as I tire from one iteration to the next. So it is depressing, to say the least. And of course I had the full battery of PFTs the week before, in my "preliminary evaluation". But after all, no one expects the patients who are there for a lung transplant to have good pulmonary function- I'm just afraid that at some point I will become "too sick"- but the Transplant Coordinator, Wendy Peavy, told me the next morning that I wasn't there yet. After the PFTs, I had my second Arterial Blood Gas. I had my first one the week before. I remember when my mother & my grandmother had to have that test, prior to the kidney transplant in 1964 where "Mom" gave my mother a kidney in a last-ditch effort to save her life. Whenever you have blood drawn for routine tests, like a CBC, or a lipid panel, or whatever, it is veinous blood. Your veins are the blue things that you can see through your skin. Once you have been around for a while, you have had enough of those that it doesn't really bother you- unless you get a phlebotomist who should still be practicing on fruit or other students! But when they want to know how much oxygen your arteries are carrying, you have to have an arterial blood draw. Arteries are deep- a skilled nurse can feel them, but you can't see where they are. Back when they did it to my mother, they applied cold packs to her arm to act as a kind of anesthetic, but they apparently don't do that anymore. Suffice it to say that it hurts- lots. And both times, the week before and the "big week", the phlebotomist had to stick me twice. So once that little chore was behind me, they wanted a sputum sample. Now, for the past year at least, my cough is no longer "non-productive", and thus I now have to carry something to use as a spitoon everywhere I go. I know, it's downright yucky, but that's just the way it is. When I cough up that stuff, I have to get it out- the more the better, and in my current state, that's a lot. So the nurse said "I can give you something to drink that will promote coughing, if you need it." I wanted to laugh- except that laughing makes me cough- I just told her no, that's not necessary- just wait a few minutes. So, in short order, she had that nasty little sample. And that, ladies & gentlemen, took us up to about 5:30 on Monday- back in the middle of the day, my portable oxygen was getting low, but to keep Bettie from having to go to her car & re-fill it, I was given a hospital canister to push around until I was ready to go "home", meaning the apartment. We had taken a few items with us, but another thing that Stratton did for us Sunday evening was to go to the grocery store- in fact, I had emailed him my list and he was actually at Kroger finishing up when we arrived in Dallas. So we were able to have what meals we had there is the apartment, making it logistically much easier than if it had been necessary for us to go out. We learned that even though the big flat-screened TV had an abundance of channels, that there was no cable- I think I mentioned that- so we "made do" with the local news when we were in the room at news time. We each called home- Bettie's mother is in assisted living at Calder Woods, and she hasn't been completely well lately, but Bettie's daughter Robin lives here, and she took "grandmother duty" while Bettie was gone. Nevertheless, Bettie called her mom just to see how she was, and of course I called Steve. And that was the end of Monday! More next sitting. I am going to try & pick a few of the people I had notified about this blog to see if they are, in fact, following it. But if you are reading this, then obviously you are following it, and I would appreciate it if you would drop me a short message at trilbyeileen@gmail.com just to let me know that. From what I see, there are only 5 "followers", but I have heard from several other people who are indeed following it, but they are not showing up on my "dashboard". As I said in the beginning, this is the very first time I have ever done anything like this- I am doing it so that people who are interested can read it, and ask questions if there are things I haven't explained, but I am also writing it as a legacy of sorts- eventually to be printed so that my children can have it as a record- no matter what happens to me. I sincerely hope that it means that I do get listed, and then that I do get transplanted, and that it is a success. All of that, like so much, is completely unknown at this time. And I do appreciate all your prayers.