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.
No comments:
Post a Comment