The Tests

I want to begin by telling you what Lainey said to me when I asked about the difference between my "evaluation" on Thursday of the week before, and my "evaluation" which lasted 5 days. She said "It's kind of like when you go buy a used car. You find one that you like- but all you are looking at is the appearance & the price. If you are smart, you won't buy it until you have had an expert look under the hood. Well, we liked what we saw last Thursday, meaning you could potentially be a good transplant recipient, so now we need to look under your hood!" And boy, did they ever. It began, as I have said, at the ungodly hour 0f 6:30 am. But in order to be at the lab (after we had used our detailed map of the campus in order to locate said lab) by 6:30, we decided to get up at 5:00. I took my bath on Sunday night- I know how slow I am. Everything now takes me two or three times as long as it used to. So while Bettie was doing her morning ablutions, I was waking up with a cup of coffee & trying to convince myself that I was going to make it without food. My instructions were nothing to eat or drink after midnight, but once I woke up Monday morning, I could have clear liquids. And black coffee was OK. And I learned why they allowed clear liquid in the am. They needed you to be able to pee in a cup first thing.

There was a free shuttle that ran every 15 minutes, but we couldn't take advantage of it because of my oxygen needs. See, the liquid oxygen tank, as I said, is too heavy for any one normal person to lift- even the "small" one which is for travel. Thus, when we plan any out-of-town trips, even a day trip to Houston, we have to co-ordinate with Walson, my oxygen supplier. They are just the greatest kids- I call them kids because I don't think I've dealt with anyone over 40 yet, but they sure know their stuff when it comes to respiratory needs. We got to know the ins & outs of supplementary oxygen several years ago, when Steve's dad "Bottle" was diagnosed with CHF and had to be on oxygen. At first, one is given the standard: a concentrator, which is a relatively lightweight box on wheels, which extracts pure O-2 from the room air & delivers it via a nozzle into which you plug your cannula. That's what you use at home, when you are "staying put", and you can have up to 50' of cord, and I needed 47' to reach from the den to our master bedroom & bath. We put the concentrator in the den because it is in the center of the house- in the other direction, I can easily reach the kitchen, living room, breakfast room & utility room, and I can go into the carport to get the mail or out onto the back deck to admire the landscaping that has been done recently. The oxygen coming from the concentrator is, of course, "dry", or "gaseous". The problem with dry oxygen is when you need to go portable- the smallest cartridge (one of those bullet-shaped things that looks like a rocket) is about the same height as my upper body, and it weighs what feels like a ton, but is only about 10 lbs. and gives me about 2.5 hours of oxygen. I don't know if everyone else who uses oxygen experiences this, but in my case, carrying anything depletes my O-2 saturation, which is supposed to be between 95 and 100 (and it is in most healthy people- I have checked!). So when I was doing 2 months of pulmonary rehab here, I joked with the Physical Therapist that I only had to have oxygen to enable me to carry it! And so, after about 2 weeks, I requested a trial of liquid O-2. I knew about it, of course, because it is what Bottle eventually used. About the liquid stuff, I'll just repeat what the respiratory therapist told me- it's not a perfect solution- but it works best for some people. The pluses for going liquid are (1) the tank does not plug in and therefore it is totally silent, whereas the concentrator has a motor and uses electricity (enough to be noticeable on the bill), and (2) the portable container is small and light-weight, holding enough for about 4 hours at the rate I need it now. If I were using just the dry, I could be pushing around one of those cartridges on wheels- that's supposed to be about a day's worth for out in the field. Anyway, I like the liquid, but the drawback here in this climate is that when it is hot outside, the portable can "freeze up", and all you can do is wait it out. That happens, for the most part, when you are filling it, so you just use it from the tank until the portable decides to thaw. Since I am so dependent upon it, it's kind of a big deal for me, and I am constantly thinking my way through the day in terms of where I will be, how long, when will my oxygen run out and when will I need another breathing treatment. What this ends up being is STRESS. Everyone's body reacts to stress differently- what happens to me is that I get mouth ulcers. My whole mouth was one big ulcer as I was preparing for the trip to Dallas (the second one). Back when the ulcers began, I asked my dentist, who is an old South Park High School grad, Tommy Gautreaux, if he had heard of Miracle Mouthwash. That was because when I was taking care of dear Bea in Dallas before she was hospitalized, she had mouth ulcers from that horrible Xeloda, which is the chemo that killed her. It causes the lining of the digestive tract to slough, and that includes the mouth. She had a bottle of Miracle Mouthwash and it deadened the skin for a little while- about the most you can hope for. Tommy had not heard of it, but he called one of the few remaining compounding pharmacists in Beaumont, Mr. Lovoi, and he knew about it. So I had a bottle made then, but I was about to run out when I got to Dallas & had a whole new crop of ulcers. It would have been relatively simple had it been either over-the-counter or an Rx that a pharmacist could fill from a supply- the way 99% of prescriptions are done now. But this was compounded. So Stratton had his friend Clayton, who is an M.D., call Mr. Lovoi in Beaumont, and then they talked to a compounding pharmacist in Dallas, and by George, I had my Miracle Mouthwash! And quite an education when it comes to compounded drugs! This is what was, in earlier times, referred to as "alchemy", I think. All Miracle Mouthwash is- it is equal parts of Maalox or Magnesia, your choice, and pediatric (liquid) Benadryl, and then the "miracle" part is liquid lidocaine- the deadener, and that's why it's not OTC. O my Goodness- such digression- but see, it's a blog, and I don't have to talk! Well, I managed to put on a bit of make-up, some comfortable loose clothing (that was the suggestion- hell, everything I own is loose now- I have lost the 30 pounds I have been needing to lose for several years) and Bettie was all prettied up, bathed & fed- she did get breakfast- so we left the apartment & filled my portable tank from the reservoir in her back seat, and we set out to report to the lab. Baylor is a huge campus, but the map is very good, and after all, I had been there in September & October of 2008 with Bea, and it started coming back to me. So Bettie let me out at the door and went to park, and I eventually found the lab. First job (after you pee in the cup): produce 21 vials of blood. When the phlebotomist came in with a box and all those vials, I started counting. She said "I can make it easy for you, hon. There's 21 of them suckers." Well, it's a good thing that I was a regular blood donor when I was healthy- I had a 3-gallon mug to show for it, but I dropped & broke it- so having blood drawn does not bother me, but 21 vials??? I think I was a bit anemic for the rest of that day, anyway!

Following the blood draw, I walked across the hall to have something called a "Glowfil" test. I soon learned that this checked kidney function. It was, of course, quite sophisticated- all of these tests just blew my mind, because they were things I had never heard of. Basically, the technician alternates giving you stuff to drink & drawing blood, and upon demand, you provide a urine sample. At some point there was an injection, and I suppose the little isotopes that are in that shot "glow" or someting like that- I don't know- anyway, it tracks how well your kidneys filter out the isotope. I may be wrong, but it's my guess that among my Schnautz cousins who have either donated or received kidneys, one or more of them has experienced the "Glowfil" tests. By the time I was done with Glowfil, it was about 11:00 and I was extremely hungry. I will need my notes in order to continue, so I think I'll post this & pick it up tomorrow- Independence Day!!! That is what I pray for- a return of my own personal independence.