Murphy's Law

Is it Murphy's Law that says "if anything can go wrong, it will"? Well, I was so certain that the problem had been solved- it should never have been a problem in the first place, you know. If someone works in Medical Records, then he or she knows that there are frequent requests for transfer of records- and it should not be looked upon as rocket science. When Kelley Fry called me from Methodist Hospital, it was to report that she had gotten a 26-page report covering my heart catheterization- period. ONE TEST. Of course when Stratton heard that is was a 26-page document, and they gave him a paper copy, he didn't read it- he was just going to send it, along with the CD, to me. Neither one of us would have expected one report to be 26 pages long! Sooooooooo, back he went yesterday to Medical Records, still working with the same man who helped him before. This time he had my entire schedule- I sent him what Baylor sent me in June, prior to my visit, showing the date & time & location of each test for the entire 5 days. Blood chemistry alone accounted for 21 tests- remember all those vials? And there must have been at least 25 x-rays; I don't know how they send that information except to send a report that it was normal or abnormal, because they certainly don't fax the film. I had many tests in the imaging department, one in nuclear medicine, plus an EKG thrown in for grins. Why the person helping Stratton didn't see the rest of my tests is a mystery, because even though he didn't have the schedule, he had my letter saying that I was there for 5 days of tests and wanted my entire file sent to Methodist. So yesterday, they tried again, and this morning, Stratton called me from Baylor, and he said that the 32 pages (all the rest of the tests) had been faxed to Houston last night. I called Kelley, got her voice mail, and asked her to call me when she returns from wherever she was. I checked yesterday to make sure she was working today, and she said that she was- so I guess I'll know something by this evening. I am really having to learn patience in this process, and I am having to practice staying calm. When I get news like I have had twice this week- that things didn't go the way I planned, I get angry inside, and I hyperventilate, and it is all VERY counterproductive in terms of my blood oxygen level. I think of those hormones and enzymes that get released into the bloodstream when you are upset, or in a panic, or just mad- things like cortisol and adrenaline, and I wonder what all happens in terms of the oxygen, because even normal, healthy people hyperventilate when they are angry or upset. It's really difficult to stay in neutral- really. Breaking News- I just received a call-back from Houston. Kelley did not receive the fax. So I called Stratton, who was en route to Fed-ex to send it all to me, and I told him to fax it to Kelley first. Then one of them will call me. And here's the funny part- he has a confirmation from the Baylor fax machine! On the Houston side, it is an e-fax, meaning it goes to a computer file, but Kelley has that file under her name, and while she did receive the first one (the heart cath), she received nothing from Baylor last night. Go figure. As I always told my customers- "Technology is wonderful when it works." More later- probably after I have an appointment to return to Methodist.

Small Success - But Success, Nevertheless

I wrote last on Thursday- I think. I fully expected that having my records transferred to Methodist Hospital's Transplant Department would be a done deal by Friday. Wrong. So Monday (yesterday) I tried again- I asked the receptionist who the Head of Medical Records was- she gave me a woman's name but said she wasn't there, so I asked to give me her voice mail. I was put on Eternal Hold. After 5 minutes, I ended the call & called back. This time, I just asked for the Supervisor by name, saying that Voice Mail was fine. So I was transferred- to someone else's Voice Mail! At this point, I just became frustrated almost to the point of tears- and I believe I said once that Pulmonary Fibrosis does not allow one to be emotional: if you laugh, or if you cry, you start coughing and can't quit. It has been quite an effort for me- I tend to be pretty emotional. So I sent Stratton a text & told him that I needed for him to be my feet on the ground. I said I was going to write a letter to the Baylor Medical Records Dept., and I ended up scanning it before emailing it to him because I wanted to sign it- and I instructed him to take his Birth Certificate (which I knew he had, because not too long ago, he needed one & I ordered it from Bexar County & got a copy for myself as well) with him because it says who his mother is. Of course I had a different last name then, but I explained that in the letter also. I simply told them that I had tried for over a week to get my test results faxed to another hospital, and that it was urgent, and that I still hadn't been able to reach anyone who could help. I told them that the letter was being hand-delivered by my son & that he could prove who he was & that I gave my permission for him to have my full medical record. This morning, before I was even up, I had a text message from him- he was on the way to Baylor. It took all day, but he got it done. It's very different to be confronted by a real live person saying that this is a matter of life & death than just talking to someone on the phone. Plus, I was still being nice- I try never to alienate someone from whom I want or need something if I can possibly help it- it is so counterproductive. Anyway, he said that they couldn't have been nicer, and they promised that the entire job would be done today. It took until almost 6:00, but they called him to come pick up my copy- I had requested a paper copy for myself of all results, PLUS a CD of my heart catheterization, which is something the Houston people need. And they wanted me to hand-carry it to them, and not risk having it go astray in the mail. So now Stratton has everything, which he will Fed-ex to me tomorrow, and when Kelley gets to work in the morning in Houston, she should have everything via fax as well. Just knowing that we have moved that little bit towards some kind of action has given me the proverbial "new lease on life". (Since my old one is about to expire, I really needed it!) What I will find out tomorrow is when Kelley can get me in to see Dr. Kesavan again. He will have reviewed all my tests and will be able to send me for whatever it is they need that isn't there. Kelley did say that they have a couple of different things they test for that Dallas does not, and vice versa. So far as I know, there is no "stopper"- I read what several of the doctors said in the narrative that each one writes after having seen a patient, and there was nothing pointed out that was felt to be a hindrance to a successful transplant. According to my friend Kay Johnson, the Methodist pastor who just retired in June, Methodist Hospital has already done 71 lung transplants this year! They are on their way to beating last year's number, which I think was right at 100 for the year.







I have good days and those that are not-so-good. Sunday was a wonderful day, while yesterday I felt total malaise- in fact, after failing to make contact with Medical Records at Baylor, and before I decided to get my rear in gear & send Stratton forth, I slept in my recliner for 3 hours! Like a total sloth- and that happens a lot. In the beginning, and I think I mentioned this, I was given this Rx for .25mg of Xanax, and told to take it 3 times a day. Well, WHOA- I was sleeping around the clock, and was very fuzzy when awake. I'm not into that stuff, so I quit the Xanax except for bedtime, and I have been a bit more able to stay awake. But then there are times like yesterday- and it is a mental thing, I know. And there is a name for it- it is called DEPRESSION. Since I have a pretty good reason to be depressed, I'm not surprised, but I do fight it. If there were anything worth watching on TV, I might turn it on- suggestions are welcome. I do enjoy the news, but we record the 5:30 National News every night & watch it together when Steve gets home- that satisfies my need to know what's going on in the world, and as I have said, I read both the Beaumont & Houston papers daily. The only time I got interested in minute-to-minute news was when that Tropical Storm Bonnie started looming- I do pray daily that the hurricane season skips this area this year. I can't imagine having to evacuate, nor can I stand not having power for the A/C. So I was very grateful when Bonnie petered out. Anyway, I read- and I work crossword puzzles. But I need people! So today, that prayer was answered in the form of one of my oldest friends: Suzanne Carlisle Ryan and I attended school together & were in many of the same classes from the 7th grade on, plus we were members of the same church & both very active in the Youth group. She & her husband David had lived in Austin for most of their marriage, but following her mother's death, they decided to sell their big house there & move into her mother's townhouse here. At the time they were planning the move, their daughter, her husband & their 3 grandchildren lived in Houston, so it meant there could be frequent indulgences in Grandparenting. And then their son-in-law was offered a job in Australia & they moved to Brisbane! Bless her heart- that was such a blow. I know how I would feel if Trilby moved to Australia, even though we haven't been able to see them as much as we would wish this year. Most of the time, it was several times a year, and I just adore seeing those children. But Suzanne is coming to terms with it- and she & David are about to embark on a month-long trip to that place "down under" in September, so she is busy planning for that. Anyway, we had the best visit- it was actually our second time to get together- and getting together means that people come to see me- and I just love it. So the rest of you old friends out there, just pick up the phone & tell me when you can come. Until I have to go to Houston again, which I hope is next week, I really don't go anywhere. I manage to go to our Investment Club meetings, but that's about all. I can no longer be sure that I won't have a coughing fit during church, and so I am not attending worship, and I miss that enormously. Our pastor is wonderful- he comes to see me also. And this weekend, I think my friend Kathy Richardson & her beautiful daughter Alexandra are coming to see us! They have been once before- on Steve's birthday, which was January 29, so it's been while, but we did go to the Alley Theater a couple of weeks ago & met them for Agatha Christie's Mousetrap. I had a hard time, ate a bunch of candy & cough drops & took more cough syrup than I was supposed to, but I sat through it without disturbing the public.







OK- that's all- I think I'm done for tonight. I will try to be more faithful and write more often. Shorter entries but more frequent- I shall try!!

Just Musings

Now it is Thursday night and I think it is July the 22nd. I am amazed at how fast the time seems to go. I have a lot of thinking time- which is probably good, but I have to be careful, because I tend to get a bit weepy when I think about the very real fact that I might not live a lot longer. Most of the time, so long as I sit still or lie down, I am OK. But my dependence on oxygen is getting greater daily- now, when I remove it to clean my face or clean out my sinuses (important- tell you why in a minute), I get breathless in a very short time. I've started wearing the oxygen in the shower for part of the time. I throw it over the shower rod so it will be right there- knowing that is like a security blanket, and it seems to give me the ability to be without it long enough to wash my face & hair (if I have to do that). Then I usually put it on, because I have finally started getting a little dizzy when my O-2 saturation is low, and dizzy is something you don't want to be in the shower! I've tried taking tub baths- and I find that getting up & out of the tub is quite an effort, so I don't do that much. It is so maddening because this is SO "NOT ME". I have always been strong and physically capable- I have always done the small home repair chores that most of the time a man does, but Steve's own limitations make that an impossibility, so I would routinely get on the ladder, change light bulbs, get up in the attic, mow the yard, or get my toolkit (Bea gave me one that is called the "Do it Herself kit" because it is for women) and adjust something with my pliers or tighten screws in cabinet hardware, you name it. Now I have to ask Steve to open jars for me. It is difficult to adjust to being so limited. But it is also a time of Grace- when you hear "Let go & let God"- that is what I do on a daily basis. I pray a lot. I read the newspapers, usually 2 of them cover-to-cover every day, plus I enjoy several magazines I subscribe to, and I still have 4 or 5 hard back books that I have had for over a year and haven't read, plus there is my Nook, which is Barnes & Noble's answer to the Kindle. And invariably, no matter the time of day, I will begin reading & fall asleep! Steve worries that I don't get enough sleep, because he is aware that sometimes I don't sleep much at night- in order to allow him to, I will leave the bedroom & go to the den & get in my recliner & read. I absolutely LIVE in that recliner, and it carries a funny history. Years ago- like at least 10 or even 15, we were at a Sunday School Class party on the 4th of July at Cathy & David Woods' house. I said something about needing to buy a new recliner, and our friend Joyce Fancher piped up & said "Do you want a brand new recliner? You can have it if you'll come after it." It turns out that her husband Leonard had bought this light green velour recliner and hated it when he got it home. He said it didn't fit him right. Well, I'm not one to refuse something being offered for free when it is something I need, and our leather furniture is a complementary shade of green, so we went after it. We had it up in our big master bedroom on Rosine- the one that was 30' long & 15' wide. It was generally only used by Steve when he was home sick (not often), because he could see the TV from it. I had thought I'd use it more, but I didn't, and over the years, it became the holder of our bedspread, throw pillows & pillow shams at night. (And since our room was the only thing upstairs and not seen by anyone unless I asked them to come up, guess what- I didn't make the bed on a regular basis- I just spread it up & the recliner sat patiently, holding all the stuff. ) Jump to this year, in January, when we moved in here. Steve had his green leather chair (which has since been replaced- he had worn the old one out), and I inherited the green recliner, and it fit me just fine- in fact I spend more hours in it now than in our bed or anywhere else. So Joyce, my dear, a thousand thank yous, once again. It is being VERY well-used!



About the sinus cleaning- it's just downright funny- even though it's a bit icky like everything else to do with this disease. But I bought a thing called a Nettie Pot. My friend Bettie Nixon had one when we were traveling together back in the fall to San Antonio to see Elise compete in cheerleading. She said it was wonderful for cleaning out your head. And it is! And the reason it is important is that what with all the mucus that is part of IPF, my head gets very full, and my nose runs quite unpredictably. Now of course this in itself is not pleasant, but then you factor in my oxygen cannula- the little headgear with the two prongs that fit just inside my nose- imagine what happens when your nose runs down & hits the cannula- a clog! No air! Panic! And then you have to remove it & wash it out, and during this time you are without air- so anyway, you get the picture. The Nettie Pot is my new BFF.



Today my cousin Cullen came over & we harassed hospitals. Actually, we didn't, but I had emailed Lainey in Dallas over the weekend, and she received my request to transfer (or send copies of) my records to Methodist Hospital in Houston. I had provided her with Kelley's fax & phone number. Kelley is the main admin to the transplant team at Methodist, and Lainey has that same job at Baylor in Dallas. When I received a reply from Lainey on Tuesday, she indicated that she would indeed comply and I knew that she understood that I meant I would like to have it done quickly. She told me then that it would take at least 24 hours before the Medical Records department there at Baylor would have them- she had spent the morning pulling everything together. She was instructing them (Medical Records) to fax everything to Methodist, so she said, and I'm sure she did- Lainey is very conscientious. So I waited 48 hours, and when Cullen came over today, we called Medical Records- Lainey had given us that phone number. The woman who answered had no clue what I was talking about- she put me on hold while she called Lainey, and of course she got Lainey's Voice Mail, so she left her a message. She also tried to reach her boss, the head of Medical Records, but she was out as well. So she took down my phone number and said that as soon as Lainey called her back, she would call me. So now I have to try again tomorrow- it will be Friday, and of course if I don't find out anything tomorrow, I won't be able to check again until Monday. I guess it's good that time seems to fly. Sometimes I want to stop it- I am getting weaker and things aren't moving, and I am not listed anywhere yet, although I was told on Tuesday by Lainey's boss that she was working with the Drs. there to get me listed, whatever that means. My boss John Hawa had a phrase that comes to mind. When telling me why he had fired a salesperson, he said "He just had no sense of urgency." And that is what I feel and what I wish I could adequately convey- I have a real desperate sense of urgency. But I know that it will work out- I trust. When I get in a dither and start feeling hopeless, I look back at all of the things that have fallen into place so beautifully along the way. I must be on 20 prayer lists- and I am deeply grateful for every single prayer. I just know that I am not alone, even though sometimes I feel very alone. As my pastor Robert put it- God did not promise us that we would not suffer and die, but He did promise to be with us both in Life & in Death." Amen. I'm going to bed. I'll try not to wait 4 days next time.

Back to "Real Time"

Once more, I apologize- I said I would get back by Friday and here it is Sunday. Oh well- I think I have finished the important parts of the ''Week That Was". Bettie and I were treated to a wonderful grilled turkey burger dinner at Stratton & Brian's house Friday evening, and one by one, all of his friends whom we had taken out earlier in the week returned to grab a bite & give me a "good-bye" hug. Then we got up Saturday and had a short surprise visit from Donna (Chesser) Chenowith, who still lives in Duncanville. For those of you who don't know, Donna is my step-sister, and I last saw her about 5 years ago when she let me know that she was bringing her 2 girls and 5 grandchildren to a beach cabin on Bolivar. Before that, we never could agree on when we had been together, but it wasn't too long after my dad died which was 1986! My mother died (following the kidney transplant) in 1964. My dad said then that he no intention of ever marrying again- for one thing, he was very, very tired! His Caregiver role with my mother lasted almost their entire marriage (20 years), although in order to run his business & support the family, he had help from my grandmother from 1954 on. "Mom" Schnautz stayed in Beaumont with him following mother's death because she was still recouperating from the nephrectomy- in those days (and perhaps still), the kidney donor had a more painful recovery than the recipient. But she still had her homestead in New Braunfels- it had been rented out for 10 years- and she was planning to move back there in the summer of 1965. I had made what felt like a big sacrifice- I had stayed home and attended Lamar for the fall semester of my Junior year- Southwestern University was such a small school back then (700 students) that it was a big deal to be gone for a semester- I lost my spot in the a capella choir, for instance- because the auditions are held only in the fall, and even if you had been in the choir the previous year, you had to audition every fall. Anyway, I guess my point is that I really didn't need to stay home- I was guilty of taking myself & my role way too seriously! I thought Daddy needed me to cook & clean house, & I did relieve "Mom" of a lot of that work, but my dad accepted a blind date in October 1964 to attend a dance - and his head was in the clouds from then on! It was set up by his good friends and fellow church members Marge & Wilton Cox. And his blind date was Ruth Chesser. She lived, along with her 2 children, with her parents on the corner of Mazzu & Iowa, 3 blocks from my dad! She had been divorced for a long time, and she had dated from time to time, so when the Coxes asked her to double-date with them & my dad, she was happy to do it. Getting my dad to go was a bit more challenging, but Marge Cox wasn't known for taking "no" for an answer. Dancing is one thing my mother loved to do and my dad put up with until she could no longer do it! And in the process, he got pretty good at it- old-fashioned ballroom dancing. Well, they just had a wonderful evening, and before Christmas, Daddy had asked Ruth to marry him! A lot of people, including me, worried that he was moving too fast- that he shouldn't have made that commitment after such a short courtship- they did feel like they needed to wait until my mother had been gone for a year- and they did, marrying in August 1965. And it turned out to be a true love match, and they had 9 years of a relatively normal marriage before Ruth was diagnosed with brain cancer. After that, my dad nursed her for 5 years, during which she lost her vision entirely, and slowly but surely, she lost her ability to process thought. It was so sad- and when you add the time he spent taking care of my mother to the time he cared for Ruth- he was an absolute angel. He had a 20 year marriage and a 15 year marriage, and in all that time, he had 12 years without a chronically ill wife. Those of you who were privileged to know him are aware of how special he was.

Oh well- I was talking about the last time I saw Donna- right? OK- so we really never saw a lot of each other once our parents were gone, plus she had an older brother who was just about a year or two younger than I was- his name was Glenn. Glenn was a handsome guy, a nice guy, but he had difficulty keeping a job and that was primarily because he had a prescription drug problem. He died in his sleep a year after my dad, and is buried here along with my dad & Ruth. He & his wife did have a little boy who was 5 when Glenn died, and Donna told me that Brian has turned out to be a fine young man who is currently in the service & serving in Iraq. (Or possibly he is back- I'm not sure about that). So- I caught up with Donna, and then at noon, Bettie & I checked out & hit the road. We came home via Jacksonville, stopping to see Trilby, Michael & Ethan. Trilby's girls were with their dad for the weekend, so we didn't get to see them.

Since returning from Dallas 3 weeks ago yesterday, I have been waking up in a different world every week it seems. I am referring to the constantly changing picture of where I am going to have the surgery, if I qualify, and as of right now it is HOUSTON!!!! Yes, my Blue Cross Case Manager called me this week, and she told me that (on her own) she had appealed to the higher-ups within the organization, and wonder of wonders, they gave me special permission to have the surgery (with full coverage) at Methodist Hospital in Houston. Do you realize that had they allowed it the first time that I might have already had the surgery?? Dr. Frost told me when I saw her last that were I to have the transplant at Methodist, it would probably happen within 6 weeks. That was just based on how long it usually takes to procure a match for someone with A+ blood and white skin. (I think you have probably heard about the push to get black people to be organ donors- this is because skin color is one of the tissue types- not skin color per se, but "ethnic origin". The lungs can come from a man or a woman, so long as the donor is approximately my size, has A+ blood, and matches a few other "tissue types".)

So I have already been in touch with Houston and Dallas, and Dallas has agreed to send all my test results to Methodist post haste. The program administrator in Houston is Kelley Fry, and she is the very person who called me on March 22, following my visit with Dr. Kesavan, and began by saying "I'm sorry, Mrs. Garrett, but Blue Cross will not approve an organ transplant at this facility", thus blowing away my hope in 10 seconds. She & I have talked twice since I got the news this week- and she is so genuinely happy for me that she feels bad for having to tell me that I couldn't have it there unless I wanted to pay for it myself- HA. I told her not to worry- she was passing on bad information, but she had no way of knowing that it was bad, and in fact, I still do not know exactly what happened when. It is all very strange, but I'm not going to ask any questions at this point!

Today, Steve & I drove to Houston to the Alley Theater to meet Kathy & Alex Richardson. We saw their wonderful professional actors in Agatha Christie's Mousetrap. I can't hold my eyes open, so I will pick it up here next time (whenever that happens to be!)

Returning- After a break

I really do intend to write something every day, but then it just doesn't get done. Many people think that because I am somewhat disabled that I have all kinds of time on my hands- you know what? I thought I'd have lots of time on my hands, too. That was when I just retired- not allowing for having my disease progress so quickly. And I know that if you are retired, you all have the same thought about your own schedule, which is "How did I EVER work fulltime?" I am thrilled for my friends and relatives who are able to do neat things in retirement- I know a couple of people who are literally "working", at some task or another, for 20-30 hours per week- doing things they could never do when fully employed, like volunteering, or remodeling a house, or taking up a hobby/talent such as art- things that there just weren't the hours for during "the grind". And those are the people that I am guilty of envying. But I am determined not to complain. I am far from the first person who had an entire agenda planned for the next 5 years and then suddenly became disabled, such as from a heart attack or stroke. I just hope & pray that I will eventually come out on the other side. My life will never be the same- I know that, just from talking to the few transplant patients whom I have met- in the Schnautz family (my mother's relatives), there are several people currently living with a transplanted kidney (due to the Polycystic Kidney Disease gene which is firmly embedded in the DNA of many of my cousins). The primary thing that is different, and this is what I was told by the doctors in Dallas during my testing, is that your immune system is forever compromised by the anti-rejection drugs you must take forever. I will find out more about this if & when I am actually being considered for the surgery- because I know people who have transplanted organs who do everything that everyone else does- but I know that you have to be ever mindful of the fact that you are vulnerable to bacteria & viruses that your body would ordinarily fight off, were it not being "squelched" by the medication. In my particular case, the doctors have said that it is particularly important to avoid picking up something like a "simple cold". That is because there is always a chance that it will develop into pneumonia, and that is not something that a lung transplant patient can easily survive. (For that matter, if I contracted pneumonia now, today- in my condition, it would be lethal.)



Well, I did sort of wander off the subject, didn't I? I am learning that I really do digress much more than I intend to- someone told me that I need a better filter. Anyway, I was getting around to saying that I really AM "busy", in that there is something I have to do almost every moment, even though these things include items like "nap", "rest", and "recover" (meaning my O-2 saturation). Managing Pulmonary Fibrosis is a fulltime job- make no mistake. My breathing treatments take at least 20 minutes each, and there are 4 per day. But the 20 minutes does not include washing the nebulizer parts, pulling the right meds from the boxes and setting up a day's supply at a time (because you are not supposed to remove more than a day's supply from their foil pouches), and periodically changing the tubing & cleaning the filter! Then there is the small amount of housework that I am capable of doing- I had to hire a housekeeper simply because it is beyond my limitations to vacuum, mop or clean out bathtubs. So I have a wonderful helper named Betty Bass who comes for a half-day once a week. Betty had just started working for Bea and had worked twice for me when Ike hit. Upon our return to "normality", if we ever actually did, of course Bea was no longer with us and I decided to do my own housework on Rosine- Steve helped of course. Nevertheless, as I became shorter and shorter of breath, the house was increasingly "less clean". While I was still working, I did what most other working women do- I blitzed part of the house every weekend, and I probably got to most things at least once a month. Anyway, a little over a month ago, we were expecting company overnight, and I wanted my new house to be clean & straight, so I called Betty & we got reacquainted. However, even with her help, there are things that I have to do, and the thing is, each chore takes about 3 times as long now as it did, say one year ago, when I was sick but not THIS sick. When I do a load of clothes, it is a major project to get them to the utility room and into the machine. Transferring them to the dryer takes awhile because I can't bend over very easily without dropping my O-2 sat. Folding them once they are dry probably takes 30 minutes- that's just one load. So you get the picture. Many times I will make a "to-do" list, both to try & stay organized and also because I really do have short-term memory lapses. I'm not worried about that- if it's serious, so be it, but it seems to me to be stress-related. Anyway, I will have "work on blog" on that list, but most of the time I don't get that far down. So this morning, I made up my mind that I would stay awake after Steve left for work & write this post before doing anything else.



On Thursday of the week in Dallas, which would have been the 24th of June, I believe, I had only one appointment. Bettie noticed that right away- and I'm here to tell you that we both needed it! The appointment was not until 2:30 pm, which made it even better! Well, I had just the thing to fill in this time- a visit from my Spiritual Director. I really feel like I have 2 of those: one is certainly our Pastor, Robert Besser. He has been like a rock for me, as well as for Steve. Believe me, I am not for a moment discounting the stress that this is creating for Steve- it is true that Caregivers are all-too-seldom recognized as people who, if they work outside the home, really have two jobs. So Robert is one of my Spiritual Directors. The other one is Kay Johnson, whom I have known and stayed in touch with since September 1962 when we met at Southwestern University in Georgetown as Freshmen. We pledged the same Sorority and eventually roomed together. Kay is a United Methodist clergywoman, and for 16 years I felt so lucky to have her in this geographic area. Her home was Ft. Worth, but after a divorce, she met & fell in love with a man who was visiting 1st Methodist where she worked. Tim was in Ft. Worth for an extended time, but it was temporary- his home & business were in Lake Jackson. In the United Methodist Church, there are geographic divisions called Conferences, and the one that includes Dallas & Ft. Worth is not the same one as the one that includes Houston & Beaumont. So, as Kay & Tim decided to marry, she had to begin looking for a job, as it were, in the Texas Conference. It is very different from churches who "call" pastors- the Bishop & his/her cabinet make the appointments every June. When you want to move within your conference, it is a little easier than when you want to change conferences, but eventually a position came up in Matagorda of all places, and Kay became a member of this conference. So for 16 years, she has been in the Houston area- most recently in Tomball. But she has three sons, all married with children, all living in Ft. Worth. When it came time to retire, it was a no-brainer. She said leaving this conference was very difficult because of all the friends she has made here in 16 years, but of course in the grand scheme of things, can anything compete with grandchildren? So- she lives in Ft. Worth once again- in fact, she and her husband were camping out in their new house, still waiting for the furniture, because they were still awaiting some flooring (I think) before they moved the furniture in. And that meant that she had some free time- so she came over Thursday, had lunch with us in our apartment (sandwiches- really fancy!), and stayed until I had my 2:30 appointment. It was just so GOOD to see her- Kay, I hope you read all of this- because you have helped me on this journey just by being there.



The appointment was just a consultation- meaning I really did get off light for the day- I had to see a Gastroenterologist (no wonder they call them "GI guys"), and the one I saw was, like the other 4 doctors I had met since arriving, very personable & understanding. As I said earlier, the purpose of all this testing is to uncover any hidden disease or condition that could possibly prevent a transplant from being successful, and I have had "issues" in the GI area over the years. I have had GERD- (that's reflux disease)- in fact, for awhile my cousin/doctor John was going down that path, because my primary symptom was a cough (it was my only symptom for a long time), and GERD is known to cause coughing. I even visited Dr. Richard Stasney, the Head of the Texas Voice Center (and known as "the doctor to the Opera stars"). He stuck a tiny camera farther down my throat than I thought was possible (after spraying it with some vile-tasting medication that paralyzed the gag reflex). That enabled him to photograph my vocal cords, all of which had lesions (ulcers) on them. Again, there is always the possibility of cancer there, but again, I lucked out on that score. The ulcers on my vocal cords explained my chronic hoarseness- that condition is pretty stable now- I'm always hoarse, but not AS hoarse as I was initially. Then I have a family history (both sides) of colon cancer, so I have had colonoscopies every 3 years since I was 50. Fortunately, the last one was in 2009, so Dr. Conner just needed to see that it came out "clean", plus I had an upper GI barium swallow in January, and he needed that also. Somehow in the transferring of my records from Houston and Beaumont to Dallas, things got left out, or paper stuck together or whatever. In this case, both the tests were done here, but at 2 different facilities. So he sent me on my way and said that if both of those tests were negative for GERD, hiatal hernia and polyps, then he would "pass" on me. The way they decide whom to list and where they are to be placed on the list is by collecting letters from each physician who has overseen the various tests. The doctors, including the psychiatrist, the Transplant Co-ordinator (who is a nurse-practitioner, I think), the Dietician & the Social Worker compose the Transplant Team, and the team meets weekly to review the patients who are on the list as well as those wanting to be listed. As soon as I was able after returning to Beaumont, I went to the 2 places holding my records of the tests Dr. Conner in Dallas needed, and picked up copies of those reports myself, so that I could see exactly what they contained and so that I could verify that they were complete. (Dr. Conner had already asked one facility to re-fax him page 2 of one report TWICE to no avail). I was embarrassed for the Beaumont medical community. Anyway, after I was satisfied that I was holding what Dr. Conner needed, I created a cover letter & sent it all with Steve to his office where he has a fax machine.



I was called on the first Tuesday after returning- of course the reports were not all in, plus I had to go over to Quest lab here & have a lab test re-done. I was told that they do not automatically list everyone as soon as they have been evaluated- I should be prepared to wait. Well, I'm not exactly in a waiting mood, but I had a plan - now I needed to get myself enrolled in Part B of Medicare if that were possible, and as soon as that got done, I would be eligible to be considered in Houston, which has always been my first choice. As great as the Dallas facility is, and having Stratton living there, plus Trilby just a couple of hours away, able & willing to put me up, it still would be very difficult for Steve. We need to have this done in Houston if at all possible. So to that end, I emailed Dr. Frost (my current Pulmonologist) and Dr. Kesavan (the man who interviewed me in March about having a transplant, only to be told by Blue Cross that it wouldn't be covered), and I informed them that (1) I am now covered by Medicare, Parts A & B, and (2) I had been through the full evaluation in Dallas. I sent them the schedule so that they could see the tests I was given, and I asked them if I would have to go through them all again or not. Dr. Frost answered immediately to say that she was forwarding my request to the head of the Transplant Committee, so we will see what he says.



The only other test I had was a heart catheterization on Friday. Some of you know it as an angiogram or an arteriogram- it is usually only given to people who have had a heart attack or who have had symptoms of heart disease. It was the only procedure on Friday, and it took nearly all day even though the actual procedure takes less than an hour. I had to go through the actual admission procedure at the Hospital, because none of the other tests were actually performed in the hospital proper. It was an "Outpatient" procedure, but I still had to be admitted, and I had to be there at 6:30. Then they put me in a room where I twiddled my thumbs and read (of course I was NPO, which means I was thirsty and a little hungry), and Bettie sat there with me, then I think she went to get some coffee, and at some point she went out to her car & re-filled my portable O2 container- that woman was constantly looking for something to do- when I said "Just rest", she would say "My job is to be your Caregiver. Now what do you need?" Let me tell you, folks- if she were my Caregiver full-time, I would be very spoiled in a very short time! And Bettie, you know how I feel- I can never express my gratitude for the unconditional nature of your friendship, and I just hope that someday I can do something momentous for you in return.

This was a case of something that was supposed to happen at 8:00, but didn't actually get underway until 12:30. When they finally gave word that they were ready for me, the nurse gave me a Valium and 50mg. Benadryl. I don't know how strong the Valium was, but I take 100mg Benadryl every night and have been doing so for a long time, both to help me sleep and to keep my sinuses clear. Whatever it was, on an empty stomach, I fell asleep, and I am NOT kidding or exaggerating, I do not recall another thing until I woke up back in my room and Bettie & the nurse were telling me to get with it, it was over & we could "go home". Now the meds they gave me in the room were just preliminary. They put something in my IV before the doctor started making the incision in my leg. But I don't remember ANYTHING! Susan Ramsey, my cousin (on the Paxton side) who has had a number of "issues" with her heart, including surgery more than once, told me that it was an interesting procedure to watch- in her case, she said she was sedated but quite conscious, and she enjoyed watching the progress as the catheter inched its way up from her groin to her heart. Well, I felt cheated! I wanted to see mine, too! Then I was told by a nurse that I had indeed been conscious, and had in fact spoken to the Dr. both before & after getting the "cocktail"! As I said, I have had many colonoscopies plus 3 other procedures requiring that kind of "Twilight Sleep", plus 2 bronchoscopies, also involving sedation, and I have only the vaguest of memory of part of the most recent bronchoscopy- it was performed by Dr. Safdar, who is Dr. Frost's partner, and what I recall is that I was fighting her attempt to get the tube in place, and she sternly instructed her nurse to "hit her again!" because I was apparently too alert. After that, nothing. I close for now- more tomorrow or Friday.

The Rest of the Tests - CH. 6

OK- I think you get the idea- these tests were complex, some were invasive (meaning they included being stuck), others not, but all were a bit stressful. After Tuesday, however, I now see that I got a bit of a break, although we were over there all day Wednesday beginning at 9:00. The first item of the agenda was actually a meeting. Everyone who was at Baylor that week undergoing tests for transplantation was required to attend this meeting, so there were probably about 15 people there. It was all about the money. It was very informative- and since everyone's situation is different, all scenarios were discussed. Each transplant has a price tag on it- just for the surgery. Double-lung is $350,000 I believe. It was in this meeting, on Wednesday June 23, that I realized that if I could get Part B of Medicare, that I needed to do it immediately, because when it comes to transplants, believe it or not, Medicare pays better than private insurance! Anyway, since I got home, I have been to the Social Security office, and there is a "loophole" that allows me to be immediately enrolled - it is because I am currently insured via my spouse who is still working full-time. Anyway, I'm getting a little ahead- but that was when the light went off- because if Medicare pays for it, I can have it in Houston!!





After the meeting, which by the way, took place on the top (17th) floor of Roberts Hospital, and when you get off the elevator on that floor, you actually do a double-take, because it's just NOT a hospital anymore. It is a penthouse! It was all full of rich, dark wood- lovely & quite costly sofas & chairs throughout the main room, and then there was a hall and there were many separate classrooms and meeting rooms. But while we were sitting there on one of those sofas feeling a little like Alice when she fell through the hole, we took in the view- all of the west side of Dallas lay before us out of solid plate glass windows. We decided that private hospitals have to have places like this in which to entertain prospective donors. It wasn't long after we arrived that we discovered that our meeting was in one of those classrooms.





Back down the elevator to the reality of a hospital- after the Financial meeting, I had a date with Radiology. Once again, I didn't realize that there were so many ways to X-ray someone. I used to feel like we should all be very conservative about our exposure to radiation- in other words, not get unnecessary x-rays. However, at this point I feel like my life is on the line, and if I have to have a huge number of rads in order to clear me for surgery, so be it. Just to name a few: they did standard X-rays of my chest & then of my entire skeleton! I had to get into some ballet positions- I kid you not- in order to have my leg x-rayed at just the right angle! Then I had a CT Scan of my chest & head, a sonogram of my abdomen & pelvis, a "sniff test" and finally- the worst- nuclear VQ Scan (and I don't know what the VQ stands for, but I can describe the test. First, I would imagine everyone is curious about the sniff test. I thought "SNIFF" was going to be some kind of acronym for a long name. But no- this is a test to see if the two halves your diaphragm move symmetrically. I didn't realize that we have TWO diaphragms- a left & a right, as it were. So you stand in front of the white plate with your arms extended, and at the doctor's command, you "sniff" three times without taking a breath. Well, I could only muster 2 sniffs, but I did that about 3 times, and the doc was satisfied. (This was one of two tests in my entire week which had to be administered by a physician. The other one was the heart catheterization.) The last test that day was the worst of the entire week. I'm not sure what it was called, but it was designed to give the doctors more information about my lungs. It is given in the "Nuclear Medicine" department, and like so many other test, it involves a combination of cameras, computers and (I'm sure) very high-end software. The technician had me lie down on the table on my back. Above my face was this huge contraption that looked like it belonged on the space shuttle or inside a control module. Emanating from this was a hose- about 3" in diameter, and the hose ends in a mask. The mask was the problem. It was designed to fit very tightly, covering my mouth and nose, and not only was it tight with a vacuum seal, it also had to be "buttoned" on to make certain it didn't slip. The tech explained to me that many people had trouble with this test for the first 2 minutes. After that, apparently, most of them are able to settle down. The actual test involves more of those radioactive isotopes- like with the Glofil- except this time the isotopes enter your body via your lungs, in that you inhales them. So the way iot is supposed to act is this: patient is wearing mask, patient is breathing "normally", (I wish I had $1 f!or every time someone told me to "breathe normally", because the fact of the matter is- I can't!) The tech begins injecting the isotopes through the plastic hose above the mask, so that by the time they reach the patient's nose & mouth, they hare vaporized and can enter. I made it past the first two minutes- in fact I was going into the 4th minute3 when I guess I had a panic attack. Anyway, I could not breathe. Now she had 100% oxygen flowing into me via that same mask, and she kept reassuring me that my saturation was 100%, but I felt like my breathing apparatus was paralyzed. She had told me in the beginning that if I ever needed her to stop, to just let her know. After she freed me from the confines of the mask, I heaved like I had runa marathon. Just plain old panic- now I know that if I have to take that test again, I will take a Xanax 30 minutes prior to it. I asked her if we had to repeat it all, and she said no, because she had everything on film that she needed. The second half of the test involved no mask, so I had no problem with it. This time, I think she injected me before she ran the camera by.

Tomorrow & will summarize Thursday & Friday & try & bring this entire thing up to real time.

Testing Continued - We're on Wednesday

I recall when I woke up Wednesday morning (two weeks ago, now), I thanked God as I do every morning for another day, and I decided that I was going to try to complain less. I haven't been too whiny, but you know, Bettie is such a sweet and patient listener, and I'm sure I took advantage of that to tell her about each & every indignity and how uncomfortable some things were. I should be grateful that I am having this opportunity, and I am, and I tried to show it by being a better patient.

Chapter 5.5 Testing Continued.....

On Tuesday morning, I got to go have an interview with a shrink at 7:00AM! Much as I'm sure I have needed it, I have never been a psychiatric patient. Quiet, you guys- I can hear the snickers already. Anyway, in order to be considered for a transplant, one has to be considered sane & in touch with reality. Dr. Vobach was 5 minutes late to our appointment, but he was so cute & friendly, and excused his tardiness by blaming it on one of his childrens' toys being in the driveway (I could relate, although it's been a few years), that I forgave him on the spot. He was the friendliest doctor I met, all in all. Not at all what I was expecting. When he basically told me that all he needed to do was establish that I was "within the normal parameters of sanity", I asked him if perhaps anyone who opts to have his heart, or lungs removed & changed out for someone else's with no real guarantees might not be "within those normal parameters". He laughed and agreed. We went back over my physical & mental history. It is only at times like these that I remember the assault and think to mention it- and then when I do, the person who is listening is so genuinely horrified that I almost wish I hadn't said anything. But he wanted to know about each & every "significant life event", so I could hardly leave that one out. As I left, he asked me if I thought I needed any drugs- and I recalled that I was getting low on my "baby Xanax" (.25mg per pill). They were prescribed to counteract some of my stress, and I was put on 3 per day. That turned me into such a zombie that I dropped the first 2 doses and just take one at night. But Stratton & Brian have found that if they give their dog Lucy one or two before traveling from Dallas to Beaumont, it definitely helps her calm down & sleep, so I've doled out a few that way- anyway, I needed some more, and he cheerfully gave me a script. I told him how surprised I was that all my doctors accept my taking that drug without a second thought- because I hear it mentioned in the "Holy Trinity" of drugs that are routinely abused. Dr. Vorbach said the same thing Dr. Holland did- yes, but we are talking about multiple milligrams- not one-quarter of one. Anyway, it does help me put all this out of my mind at the end of a day & I think I sleep better. So that was the uneventfully pleasant visit to my mental health professional. After that, the rest of the day until about 4:00 was spent in the building that is specifically devoted to the transplant program. Bettie & I met with Wendy Peavy, the Director, and her assistant Lainey. Following that, I met & was interviewed & examined by Dr. Ring, the surgeon. I really liked him- again, I've not met many surgeons with a good "bedside manner", and I chalk it up to the fact that they do what they do best when you are unconscious, so developing a bedside manner isn't high on their priority list. This guy had it, though. He also had a poster-size photograph of a professional flutist whose heart he had replaced, enabling her to play again. I told him that I hadn't played professionally since I was in high school & was paid $50 per rehearsal and $100 per concert to play with the Beaumont Symphony Orchestra, but that giving up my flute-playing had been a big loss. I guess it is possible that I might play again with new lungs that work- at one time, when I was both singing & playing the flute, I had very good breath control, but sadly, it is completely gone now.

After we saw Dr. Ring, we visited with the Social Worker. They really don't leave any bases uncovered! In retrospect, I'm not sure what the Social Worker does, aside from the fact that she offered me a contract to sign that said I would follow the rules of the program. I signed. I am compliant. Then we matriculated on to the Dietician. She was interested in the fact that I have had a rapid weight loss- I wouldn't call it extremely rapid, but it is definitely in response to my stress and depression and not the result of trying. However, I guess the good part is that I needed to lose the weight. And so now, I am back where I truly thought I'd never be again- size 10 slacks with no elastic!! I'm a true "apple" in that deal about apples & pears. All my extra weight goes straight to my middle, so that when I'm carrying around 20 or 25 extra pounds, my measurements are approximately 36-36-36. I am fortunatel, I guess, that when I do shed weight, it comes off my belly- because I have read all about how dangerous belly fat is. Oh well, that's one thing I don't have to worry about now. As strange as it seems, I forget to eat. I have no appetite except for first thing in the morning. Therefore, I usually eat twice per day, and I am trying to add some healthy snacks in between and at bedtime to keep my weight about where it is & not lose much more.

The final tests on Tuesday were an EKG and an echocardiogram, and for that I had to go all the way back to another building- with Bettie's expert help, I made it, and that took us up til 5:30 once again. This time, however, we had food with us, so between tests or consults I could eat a banana or a protein bar or whatever. And always, always, I have my big blue glass of water on ice. The oxygen dries out my nose & throat so badly that I just drink non-stop, which means I am on the lookout for a ladies room whenever I change buildings. We made our way back to our little nest at Twice Blessed House & said our prayers of gratitude for another safe day. And here I will stop until tomorrow.

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.

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.

Chapter 3.5 (LOL)

I didn't feel like I wrote enough last night to qualify as an entire chapter, so this is just a continuation of it. I'm really trying to get to the "exciting" part of the testing procedure, but I also need to continue to fill in some history here & there. One very important item is Twice Blessed House. This is where we stayed- both when Steve & I went for 2 days and again when Bettie & I went for the week. Right on the fringe of the Baylor Medical campus, along Gaston Avenue, is a huge apartment complex called the Marquis. These are nice apartments, quite up-to-date, and are very handy for dental students, as the Baylor College of Dentistry is right there, as well as employees of the medical center, or just anyone. The Junior League of Dallas has done a wonderful thing. They have a non-profit named Twice Blessed House which they underwrite & support. There is a block of apartments rented at all times to them, which they make available to organ transplant patients and caregivers, both before & after the actual transplant. In the case of pre-surgery, like me, the patients would rightfully be called "potential transplant patients", since obviously there are many who are evaluated but not all are deemed suitable for the program. Again, I believe it is the selectivity that Baylor employs that caught the eye of Blue Cross, but also, as my case manager told me, frankly they had no coverage in Texas until very recently, and they selected the Baylor program in Dallas as their "Blue Center of Distinction" in Texas. As to why the program in Houston is not also listed, it is anybody's guess, but Dr. Frost says that Blue Cross has always been very partial to the Dallas hospital. Even Dr. Ausloos said that he feels like Dallas is too conservative. And that is why I am doing everything in my power to be able to be listed in Houston as well, because I think I will be accepted there, and will probably get a call much sooner because of their volume. But I digress. Twice Blessed House has its own office, there at the apartments, with an administrator & an assistant and volunteers to help keep up with the work. The rooms are made available on the basis of availability, and just to give you an example of a "God thing" as my friend Patty Edwardsen calls it, Bettie & I got the last available room that Friday afternoon for Sunday arrival. There can be one caregiver per patient during the testing phase- I don't know how they handle it afterwards, because our neighbor last week was a family of at least 3 people- we met the teen-age son, and he told us that his dad had a liver transplant and they had been there 3 months! That is the other thing- the Dallas program requires the patients to stay very close for 12 weeks following the surgery, although they do dismiss some people earlier if they are doing very well. Anyway, these are entire apartments, complete with a washer/dryer, a full kitchen including dishwasher, a nice living area with a flat-screen TV (large), a bedroom (or two, depending on need) and a bath. Therefore, it is not necessary to eat out or bring in take-out unless that is your choice- it is a home away from home. All of this costs the patient $40 per night- that is the big bonus. Baylor also has a hotel on campus that is a full-service hotel, and it is made available for any family members of patients in any of the hospitals, and those rooms are $89 per night, still considered quite a discount. But Twice Blessed House is just for transplant people, and we definitely felt doubly blessed! Not only does the Junior League financially underwrite the program, but they also have something special almost every day. Every Wednesday someone goes to the grocery store and shops for the patients. All you have to do is give them your list on Tuesday & you can pick up & pay for your groceries on Wednesday evening. Every Thursday an entire evening meal is furnished there in the "office" of TBH, which has a nice, roomy lobby. We saw a flyer for a crafts program, and there are other things that they do as well. So I take back any catty remark I may have ever made in the past about Junior Leaguers- I was just jealous because I had to work and was never a candidate to be a member anywhere I lived.

One thing that we did not have was any kind of Internet connectivity. Apparently, this was outside the budget- other people who rent the apartments can put in DSL or cable routers, but the rules of TBH say that "any attempt to set up an Internet connection using the telephone line will result in eviction". They don't have to worry about the cable, because the TBH apartments don't have cable either! They really don't need it- I think we counted 17 stations that somehow make it through the air to the sets there - all the networks, PBS, and umpteen Spanish language stations! There is connectivity inside the hospitals in places- like the cafeterias. However, my schedule did not take lunch into account- I had to make Bettie go eat something while I was in a procedure because there was no time allotted for it.

As I said, we were so fortunate to have Stratton available. He is self-employed, so to speak- with 2 primary jobs. He works about 20 hours per week managing a bank of servers for a guy who owns a business and is frequently out of town. Stratton has a key, and he simply goes & does what he needs to do, and sometimes this is at night- and Stratton is still a nightowl. Then, his "main job" is at an Antique Mall. The one where he works is called Lula B's, and they currently have 2 locations, contemplating a 3rd. This is what is so weird about that particular business- when the current recession got underway and people were losing their jobs and small businesses (including other antique malls) were closing right & left, Lula B's opened their 2nd location. Stratton has a booth at each location, and he is also one of the managers. It is a co-op, so all the vendors work shifts, but someone is always in charge of the register, opening & closing for the day, etc. Stratton has been doing more of that lately, and of course any time something sells from his booth, he gets the money, whether he is there or not. He has done quite well- his specialty is 50's & 60's furnishings and lamps. He finds many things on eBay for a song, marks them up quite a bit, and sells them. Other things he finds at garage & estate sales. For example, the estate sale for the contents of this house (Bea Buller's furniture & everything else down to the partial roll of wax paper) was excellently handled by one of my South Park High School friends, Betty Merendino Lebus. She & her sister have a business doing estate sales, and they did ours. A desk- just a plain, large, avocado colored desk, did not sell here. It had a price tag of $10 I think. Stratton put it in his booth for $325 and sold it in 3 days. As they say, "one man's trash.....".

Anyway, Stratton & his room-mate Brian Loftin came & unloaded Bettie's car. This was after we had picked up the keys at the aforementioned hotel lobby, because it was a Sunday and the TBH office was closed. When we got to our unit, the same one Steve & I stayed in the week before, the key would not open it. It was a dead-bolt, and you could hear the tumbler and then it was like it hit something- and we knew that it was hopeless. The young man next door was out, and he tried, thinking maybe we weren't using enough force, but it was just not going to open. So I called the manager of TBH on her cell- the "emergency" number on our paperwork. She had to get dressed and drive 30 minutes to get there, so I sat in the car (which was in a covered garage on the same level as the room) and sucked on my oxygen. Even though it was around 8:00, it was still beastly hot, and the heat gets to me worst of all. I know for a fact that before A/C, people with PF didn't live through a summer in a climate like this. When Serena (the manager) arrived, she had the spare key- it didn't work either. Fortunately, the cleaning staff had been in the apartment after we left the preceeding Friday, or it might have appeared that Steve & I were responsible for the jammed lock. But they come in & clean after people leave, so we were off the hook. As late as the next Thursday, they still had not been able to get that door open! Well, you know I told you that we got the last room. However, like hotels everywhere, they keep one apartment vacant for just such an emergency, so we got that one. All of that delayed our moving in about an hour, at which time I was turning into a pumpkin fast. But Stratton arranged his schedule, which is flexible to a certain point, because he can trade off shifts with other vendors, so that he was available to be with us, run errands for us, and on Friday night, he cooked for us. His big #40 is coming December 26, and I told him that he is definitely a grown-up now! As a single man, he hasn't had to be responsible for anyone else but himself all these years- and it's true that people who do not have a family have less experience in putting aside their own needs because someone else needs something. Stratton has always been very generous, but here in the last few years, he has outdone himself. He has a large number of friends there, and I have met some of them, and they all treat me like another "mom", and are each in his own way praying for me.

I think I will stop for today and begin Chapter 4 with the Big Testing Week.