Wednesday, June 30, 2010
Chapter 3
Naturally, my first choice of a caregiver/driver would be Steve. However, his job is so unreal- and he had just missed 2 days. When he is out, very little of his work gets done in his absence. We came home last Friday after spending 2 days in Dallas, and he had to go to his office on Saturday to start catching up before Monday. There are some pretty experienced PVF salesman out there, unemployed- I personally don't think MRC can do without Steve, since he is the most experienced salesman they have. But one doesn't take chances, nor is Steve the kind of person to push the goodwill of his employer to its limit. Bottom line- he had to be here last week. So, at 3:45 on Friday afternoon, I took my phone back to Trilby's bedroom for some privacy and called my dear friend Bettie Nixon. She was teaching VBS (they have it in the evening), and had many other things on her mind- but when I asked her to drive me to Dallas and stay there for a week, she never hesitated- she said "Sure I'll do it". I cannot explain what this meant to me. I have always known what a special person she is- she is one of those people about whom one says "No one doesn't like Bettie." My running joke with Robert Besser, our pastor, is that Bettie is the nicest Baptist in Beaumont- that came up on the evening of the surprise 60th birthday party I put together with much help from Susan Ramsey, my cousin, as we had just moved here to Devon St. that week. We had known for a long time that our house on Rosine was not conducive to our advancing age. All we had upstairs was a 30' by 15' Master Suite, and we loved it- but we couldn't figure out a way to put it on the ground floor. In October 2008, Beatrice Buller, my surrogate mother for 43 years, passed away- ironically when we were in Dallas as refugees from Ike- and because of the chemotherapy that she should never have been given, she became ill & passed away in one of the Baylor hospitals there. I was her executrix & sole trustee. Therefore, instead of liquidating this house as an asset and paying a realtor & getting less than it was worth, we sold our house and bought this house from the estate, and since I am the executor, I had to pay the appraised price- all of which was better for the beneficiaries of Bea's will, as they are all institutions. The sale on our house took over 6 months to close, because the buyers were going FHA, but we got our price. It just meant that we didn't move in until January 2010. The party for Steve was mostly members of the chancel choir at Wesley, of which Steve has been a faithful member, plus Bettie. Anyway, I digress, which I do often. So Bettie packed her car & picked me up early Sunday afternoon, and we set off for Dallas. Once again it has gotten past my bedtime, so I will append to this chapter tomorrow.
Tuesday, June 29, 2010
June 29 - At Long Last - Chapter 2
Oh my, did I ever tell a whopper! I just read what I wrote- promising to add something every day and now it has been what- 2 weeks and a day. Well, if you persevere, you will understand.
First, just a little background. I have always been prone to bronchitis. Way back when I was 6 years old, in New Braunfels, I had double pneumonia. About all I recall is that Dr. Schaefer made house calls, and he came out to our place (which was in the country back then) every evening to keep my mother (who was chronically ill all my life with Polycystic Kidney Disease) or grandmother from having to bring me into town in order to get the big bad SHOT. Penicillin it was- thick & white, and the needle was huge. My main memory is of hearing the crunch when his tires left the road and began coming up our 300' gravel driveway, and I began crying right then. Begging, pleading- oh, how I dreaded those visits. And of course there was so much time to anticipate (with dread), because when he arrived, after the niceties, he took my temperature, listened to my chest, and all the time I kept whispering "Are you gonna give me a shot? Please don't give me a shot", over & over. Meanwhile, my grandmother was boiling a big pan of water on the stove. After he examined me, he went to the kitchen, sterilized his humongous needle, filled it and came back into my bedroom (which adjoined the kitchen) with a kindly smile I'm sure- but to me it was the face of the devil. I knew to try to stay still- but my mother & "Mom" (as I always called my grandmother Schnautz) held me down for good measure. Unlike to my adult physique, my childhood body was skinny. I still don't have much of a butt, but then, it was nonexistent. Anyway, he gave me the shot, went on his way, and everything was fine until the next day. I don't know how many of those trips he made- probably 5 or 6. But he did tell my mother, and I later learned this from conversation with my parents, that I had a very stubborn case, and he considered hospitalizing me on a daily basis. But I recovered, and of course in a few weeks, I had largely forgotten the experience. Then, in 1983, when Steve & I had been married just about a year, I came down with pneumonia again, and this time I spent 17 days in the hospital here while my family doctor tried every antibiotic he could think of, but nothing worked. My fever spiked every afternoon at 105-106, and I was an adult, when fever like that is really bad. After 2 weeks, my dad intervened and requested another doctor. Into my life came the sweetest man, Dr. Stewart Williams. His title then was "chest surgeon", but I think he was a pulmonologist- I've learned since that the field has only been called "pulmonology" for 15-20 years. I asked Dr. Williams about the surgeon part of his title- I was not looking forward to any cutting. He laughed and said that he rarely cut- he didn't know why they called him that himself. Well, bottom line- he correctly diagnosed me as having legionella- the bacteria that, in the mid-seventies, was responsible for the death of several men who were attending an American Legion convention in Atlantic City. They theorized that the bacteria spread in the A/C ducts in the hotel, where everyone was staying. Since most of the victims were "Legionaires", the bacteria was named legionella. How it migrated to Beaumont, Texas between 1976 and 1983, who knows. I suppose it eventually became more common, but Dr. Williams was the only person who caught it. He gave me the proper antibiotic for it, and 48 hours later, I was well. Oh, not completely well- because like always, I coughed for about 2 weeks. Between then and about 2005, I didn't notice anything unusual about my respiratory health other than the fact that I would get a cold and couldn't shake the resultant cough. All of this, by the way, is important. When I began having a chronic cough 5 years ago, I began to worry about lung cancer. When I was young and stupid, I smoked. But I quit in 1990 and never smoked again. Still, it could have been cancer- plus my parents both smoked, my dad most of all, and he died in 1986 of lung cacner. Well, I started making the rounds of doctors here, and I will not name any names- suffice it to say that I went to 5 specialists, and none of them had a clue as to what the underlying cause of the cough was. I still had good pulmonary function, so when the asthma/bronchitis doctor saw me, he had me take a Pulmonary Function Test (hereafter referred to as PFT), and mine was fine, so he sent me on my way. I firmly believe that is when the fibrosis began. Since no one ever really knows what causes it, and since it is supposedly an auto-immune disease, it is referred to in the books as IPF, the "I" standing for "ideopathic" which means- "no one knows what caused it". Big help.
As some of you know, I am blessed on my father's side with a wonderful family of first cousins. Those of us now in our 60's and 70's grew up in some ways almost as siblings. We gathered frequently at our grandmother Paxton's house in Elkhart, and several of us are only children, and we were just very close-knit. One of my cousins is John Posey, PhD, MD. He has practiced Internal Medicine in Houston "forever", and has always had an open door policy to family, excluding his own wife & children. I called him and made an appointment. I think that was in 2006- not certain. Anyway, that began the big sleuthing expedition to find out what my problem was. John immediately had a CT scan done. No one in Beaumont ever looked farther than a chest X-ray. Of course, when I went to see John, I told him that I wanted to find out as soon as possible whether or not I had cancer. In due time, he referred me to the man he felt was the best pulmonologist in Houston, who also happened to be the Director of Critical Care at Methodist Hospital there- Jorge Mario Gonzalez. Dr. Gonzalez went by Mario- he had pulled himself up by the bootstraps in Guatamala, gone to Medical School there, then he came to Houston & did it all over again. I saw him for several months- he performed my first bronchoscopy and eliminated cancer in his mind right then & there. However, I coughed so violently during the procedure that he was unable to get a tissue biopsy which might have told him what I did have. Before anything else happened, Dr. Gonzalez was murdered. It was just awful- his ranch caretaker, plus 2 brothers, plus a cousin, all got together & decided that if they kidnapped Dr. Gonzalez's pregnant wife that Dr. G. would pay big bucks to get her back. No one was supposed to get hurt- isn't that what people who shoot other people always say? Why do they load their guns, then? What those (most likely) "undocumented aliens" didn't count on was the fact that Dr. G. had learned to handle a pistol as a boy in Guatamala, and he kept one in a table by the door to shoot snakes. As soon as the perps saw that he had a gun, they panicked and shot him. They were apprehended, and now, somehow, Austin County (largest town is Bellville) now has to prosecute 4 men for capital murder PLUS provide defense attorneys for the indigent criminals. I don't think anyone has gone to trial yet- I keep watching in the Houston paper.
For 3 months, I just kept doing what John had prescribed in the beginning- breathing treatments in a nebulizer several times a day plus a cough syrup that has a narcotic in it because it is the only thing that works and allows me to sleep. At the beginning of this year, he referred me to Dr. Adaani Frost & her partner Dr. Zeenat Safdar. Both of them are on the faculty of Baylor College of Medicine which is there in Houston. After more extensive testing, Dr. Safdar officially diagnosed me as having IPF. John had mentioned it as a possibility, but of course I know that both he & I hoped it would be something a little less deadly- for awhile he referred to my condition as COPD, bronchiectasis in particular. The official diagnosis was not rendered until early this year, and I was immediately referred to the transplant team there in Houston. And there began the unbelievable confusion over insurance that I have already described. Now, I feel like I shot myself in the foot for not subscribing to Part B of Medicare when I could. Now, tomorrow, I am going to visit our local Social Security office to see if anything can be done, because the enrollment window doesn't re-open until November. A couple of people have told me to write to my congressman and senators! I will start with the local office- I just need for someone to allow an emergency enrollment, because once I have Part B, I can be listed on Houston's OPO (Organ Procurement Organization). Lungs cannot be transported very far- thus Dallas has its own OPO. Houston performs about 5 times as many transplants as Dallas- and this is probably why Blue Cross awarded them the "Blue Transplant Center of Distinction"- they are extremely conservative and selective, both about the patients they accept and the organs they deem fit. Steve & I made a trip to Dallas week-before-last, for what I assumed was the evaluation. I was scheduled for one day of tests- ending with a consultation with Dr. Ausloos. Stratton, as most of you know, lives in Dallas, and in fact he lives close to Baylor. Therefore, he was an enormous help- he came to our apartment (more about that in next installment) and unloaded the car- now realize that in addition to luggage & some foodstuff, there were also 2 large oxygen tanks- a concentrator (which plugs in & extracts O-2 from the room air, and which I used overnight), and a "small" travel tank of liquid oxygen- still too heavy for one person to lift. That was OK, because we just left it in the Honda. I use liquid oxygen in my portable because it is so much lighter weight, plus here at home the tank makes no noise- it isn't electric. Anyway, Stratton & his room-mate Brian got us all unloaded, on Wednesday night, and I had the tests on Thursday, and we returned home on Friday. It was when I was talking to Dr. Ausloos, I guess, that I realized that what I had been through was very preliminary. They screen with the one-day set of tests, because anything that would raise a red flag there would need to be discussed & remedied, or else the patient would not be listed. But I passed the prelim, and Lainey (I misspelled her name before) was told by Dr. Ausloos to get me scheduled for the full eval ASAP. Well, we knew it would probably start sometime last week, but I truly didn't think I would hear from Lainey until Monday. We stopped in Jacksonville on our way south to visit Trilby & her family and eat bar-b-que which Elise had brought home from work. (She has had a job at Stacy's Bar-B-Que since before she obtained my Honda last December.) While we were sitting at the table, Lainey called, and emailed me my schedule - using Trilby's email address. I had to return to Dallas Sunday & my testing began at 6:30 am Monday! This was at 3:30 on Friday, and I had to find someone who could drive me up there & stay with me 24/7 as per the rules. I'll pick this up tomorrow & continue.
First, just a little background. I have always been prone to bronchitis. Way back when I was 6 years old, in New Braunfels, I had double pneumonia. About all I recall is that Dr. Schaefer made house calls, and he came out to our place (which was in the country back then) every evening to keep my mother (who was chronically ill all my life with Polycystic Kidney Disease) or grandmother from having to bring me into town in order to get the big bad SHOT. Penicillin it was- thick & white, and the needle was huge. My main memory is of hearing the crunch when his tires left the road and began coming up our 300' gravel driveway, and I began crying right then. Begging, pleading- oh, how I dreaded those visits. And of course there was so much time to anticipate (with dread), because when he arrived, after the niceties, he took my temperature, listened to my chest, and all the time I kept whispering "Are you gonna give me a shot? Please don't give me a shot", over & over. Meanwhile, my grandmother was boiling a big pan of water on the stove. After he examined me, he went to the kitchen, sterilized his humongous needle, filled it and came back into my bedroom (which adjoined the kitchen) with a kindly smile I'm sure- but to me it was the face of the devil. I knew to try to stay still- but my mother & "Mom" (as I always called my grandmother Schnautz) held me down for good measure. Unlike to my adult physique, my childhood body was skinny. I still don't have much of a butt, but then, it was nonexistent. Anyway, he gave me the shot, went on his way, and everything was fine until the next day. I don't know how many of those trips he made- probably 5 or 6. But he did tell my mother, and I later learned this from conversation with my parents, that I had a very stubborn case, and he considered hospitalizing me on a daily basis. But I recovered, and of course in a few weeks, I had largely forgotten the experience. Then, in 1983, when Steve & I had been married just about a year, I came down with pneumonia again, and this time I spent 17 days in the hospital here while my family doctor tried every antibiotic he could think of, but nothing worked. My fever spiked every afternoon at 105-106, and I was an adult, when fever like that is really bad. After 2 weeks, my dad intervened and requested another doctor. Into my life came the sweetest man, Dr. Stewart Williams. His title then was "chest surgeon", but I think he was a pulmonologist- I've learned since that the field has only been called "pulmonology" for 15-20 years. I asked Dr. Williams about the surgeon part of his title- I was not looking forward to any cutting. He laughed and said that he rarely cut- he didn't know why they called him that himself. Well, bottom line- he correctly diagnosed me as having legionella- the bacteria that, in the mid-seventies, was responsible for the death of several men who were attending an American Legion convention in Atlantic City. They theorized that the bacteria spread in the A/C ducts in the hotel, where everyone was staying. Since most of the victims were "Legionaires", the bacteria was named legionella. How it migrated to Beaumont, Texas between 1976 and 1983, who knows. I suppose it eventually became more common, but Dr. Williams was the only person who caught it. He gave me the proper antibiotic for it, and 48 hours later, I was well. Oh, not completely well- because like always, I coughed for about 2 weeks. Between then and about 2005, I didn't notice anything unusual about my respiratory health other than the fact that I would get a cold and couldn't shake the resultant cough. All of this, by the way, is important. When I began having a chronic cough 5 years ago, I began to worry about lung cancer. When I was young and stupid, I smoked. But I quit in 1990 and never smoked again. Still, it could have been cancer- plus my parents both smoked, my dad most of all, and he died in 1986 of lung cacner. Well, I started making the rounds of doctors here, and I will not name any names- suffice it to say that I went to 5 specialists, and none of them had a clue as to what the underlying cause of the cough was. I still had good pulmonary function, so when the asthma/bronchitis doctor saw me, he had me take a Pulmonary Function Test (hereafter referred to as PFT), and mine was fine, so he sent me on my way. I firmly believe that is when the fibrosis began. Since no one ever really knows what causes it, and since it is supposedly an auto-immune disease, it is referred to in the books as IPF, the "I" standing for "ideopathic" which means- "no one knows what caused it". Big help.
As some of you know, I am blessed on my father's side with a wonderful family of first cousins. Those of us now in our 60's and 70's grew up in some ways almost as siblings. We gathered frequently at our grandmother Paxton's house in Elkhart, and several of us are only children, and we were just very close-knit. One of my cousins is John Posey, PhD, MD. He has practiced Internal Medicine in Houston "forever", and has always had an open door policy to family, excluding his own wife & children. I called him and made an appointment. I think that was in 2006- not certain. Anyway, that began the big sleuthing expedition to find out what my problem was. John immediately had a CT scan done. No one in Beaumont ever looked farther than a chest X-ray. Of course, when I went to see John, I told him that I wanted to find out as soon as possible whether or not I had cancer. In due time, he referred me to the man he felt was the best pulmonologist in Houston, who also happened to be the Director of Critical Care at Methodist Hospital there- Jorge Mario Gonzalez. Dr. Gonzalez went by Mario- he had pulled himself up by the bootstraps in Guatamala, gone to Medical School there, then he came to Houston & did it all over again. I saw him for several months- he performed my first bronchoscopy and eliminated cancer in his mind right then & there. However, I coughed so violently during the procedure that he was unable to get a tissue biopsy which might have told him what I did have. Before anything else happened, Dr. Gonzalez was murdered. It was just awful- his ranch caretaker, plus 2 brothers, plus a cousin, all got together & decided that if they kidnapped Dr. Gonzalez's pregnant wife that Dr. G. would pay big bucks to get her back. No one was supposed to get hurt- isn't that what people who shoot other people always say? Why do they load their guns, then? What those (most likely) "undocumented aliens" didn't count on was the fact that Dr. G. had learned to handle a pistol as a boy in Guatamala, and he kept one in a table by the door to shoot snakes. As soon as the perps saw that he had a gun, they panicked and shot him. They were apprehended, and now, somehow, Austin County (largest town is Bellville) now has to prosecute 4 men for capital murder PLUS provide defense attorneys for the indigent criminals. I don't think anyone has gone to trial yet- I keep watching in the Houston paper.
For 3 months, I just kept doing what John had prescribed in the beginning- breathing treatments in a nebulizer several times a day plus a cough syrup that has a narcotic in it because it is the only thing that works and allows me to sleep. At the beginning of this year, he referred me to Dr. Adaani Frost & her partner Dr. Zeenat Safdar. Both of them are on the faculty of Baylor College of Medicine which is there in Houston. After more extensive testing, Dr. Safdar officially diagnosed me as having IPF. John had mentioned it as a possibility, but of course I know that both he & I hoped it would be something a little less deadly- for awhile he referred to my condition as COPD, bronchiectasis in particular. The official diagnosis was not rendered until early this year, and I was immediately referred to the transplant team there in Houston. And there began the unbelievable confusion over insurance that I have already described. Now, I feel like I shot myself in the foot for not subscribing to Part B of Medicare when I could. Now, tomorrow, I am going to visit our local Social Security office to see if anything can be done, because the enrollment window doesn't re-open until November. A couple of people have told me to write to my congressman and senators! I will start with the local office- I just need for someone to allow an emergency enrollment, because once I have Part B, I can be listed on Houston's OPO (Organ Procurement Organization). Lungs cannot be transported very far- thus Dallas has its own OPO. Houston performs about 5 times as many transplants as Dallas- and this is probably why Blue Cross awarded them the "Blue Transplant Center of Distinction"- they are extremely conservative and selective, both about the patients they accept and the organs they deem fit. Steve & I made a trip to Dallas week-before-last, for what I assumed was the evaluation. I was scheduled for one day of tests- ending with a consultation with Dr. Ausloos. Stratton, as most of you know, lives in Dallas, and in fact he lives close to Baylor. Therefore, he was an enormous help- he came to our apartment (more about that in next installment) and unloaded the car- now realize that in addition to luggage & some foodstuff, there were also 2 large oxygen tanks- a concentrator (which plugs in & extracts O-2 from the room air, and which I used overnight), and a "small" travel tank of liquid oxygen- still too heavy for one person to lift. That was OK, because we just left it in the Honda. I use liquid oxygen in my portable because it is so much lighter weight, plus here at home the tank makes no noise- it isn't electric. Anyway, Stratton & his room-mate Brian got us all unloaded, on Wednesday night, and I had the tests on Thursday, and we returned home on Friday. It was when I was talking to Dr. Ausloos, I guess, that I realized that what I had been through was very preliminary. They screen with the one-day set of tests, because anything that would raise a red flag there would need to be discussed & remedied, or else the patient would not be listed. But I passed the prelim, and Lainey (I misspelled her name before) was told by Dr. Ausloos to get me scheduled for the full eval ASAP. Well, we knew it would probably start sometime last week, but I truly didn't think I would hear from Lainey until Monday. We stopped in Jacksonville on our way south to visit Trilby & her family and eat bar-b-que which Elise had brought home from work. (She has had a job at Stacy's Bar-B-Que since before she obtained my Honda last December.) While we were sitting at the table, Lainey called, and emailed me my schedule - using Trilby's email address. I had to return to Dallas Sunday & my testing began at 6:30 am Monday! This was at 3:30 on Friday, and I had to find someone who could drive me up there & stay with me 24/7 as per the rules. I'll pick this up tomorrow & continue.
Saturday, June 12, 2010
Why Blog Now???
Indeed, why start blogging after being in the information systems business for 22 years but never really thinking that I had much need for an online journal. After all, I have been a writer of letters and diaries and poetry for years, but in my opinion, those things required the personal feeling of putting my pen to the paper, and in most cases, my target audience was either myself only or one other person. I have found email to be quite handy, and make frequent use of it. However, as I contemplated the things that are likely to be happening to me in the relatively near future, and realizing that there are actually several people who really want to know what's going on, and sending out emails with "cc" to everyone just seemed so yesterday, so I thought "this is what a BLOG is for!" And so it is.
To bring you up to date, it is now Saturday evening, June 12- my granddaughter McKenzie's 14th birthday- hard to believe, but the calendar doesn't lie. I gave her a gift card to Abercrombie, and she was planning to go shopping with it today. This past Wednesday, Stratton, who had driven down from Dallas, drove me to Houston for my appointment with Dr. Adaani Frost, one of the pulmonologists who have been treating me. Additionally, I had another pulmonary function test. As most of you know, this has been an extremely confusing time relative to my disease and the potential treatment of it. (Actually, there IS no treatment, short of a transplant, so that's what we're talking about here.) Steve has excellent insurance (Thank You, God) and of course I am eligible for Medicare, but I carry Part A only (the free part), because my primary insurer is Blue Cross/Blue Shield which is provided through McJunkin-Redman. If you understand anything about health insurance, you know the first rule: the bigger the group, the lower the risk- and as a merged company, MRC (the new name) is the largest pipe, valve & fitting distributor in the USA. That is why we have such great coverage for less than $300/month total- for both of us! Since Methodist Hospital- Houston is an "in-network" facility for BCBS, everyone, including my BCBS Case Manager, assumed that I would be covered to have a lung transplant there. However, for reasons that I don't really understand, but don't really matter, I am only insured if the surgery is at the Baylor Medical Center in Dallas. My current doctors are at Baylor College of Medicine- Houston, so we needed to get this co-ordinated and quickly.
Dr. Frost is both obviously brilliant and very blunt. She looked me straight in the eyes, and said "You need a transplant, and very soon." Stratton asked her if it was true that without a transplant, I might not live the rest of the year, and she said "That's a reasonable assumption." It is so weird to hear someone talking about your death right in front of you- and in such a conversational tone! But she is also a woman of power & influence- a full professor at the Medical School with a large private practice she shares with Dr. Safdar, who has been seeing me, but who is visiting family in Pakistan right now- (and I sure hope she's staying somewhere safe!) Anyway, Dr. Frost could tell that I was pretty anxious (putting it mildly) so she said "Here is my email address". Now that is something- not many physician's give patients their email address, or so I have found. After that, she said "I will call the director of the transplant evaluation team in Dallas, and I will call him today. And if you do not hear from him by Monday, I want you to email me." And she did, and that evening I had email from her saying that she had reached Dr. Ausloos, and that I should hear something from his staff soon. Thursday morning I was indeed called, and the test results are being sent to them, and I was told that I would learn when my appointment is very soon. On Friday, Donna (Intake co-ordinator) called, and we are being scheduled for next Thursday, and another girl named Laney is to call me Monday with details, as she was off yesterday. So I think that brings you up-to-date. I will probably post something tomorrow that will go into the history of what is happening to me- some of you will just want to skip that, as you already know. But each day, from now until there is no longer a need, I will post something, and if I leave anything out, you can always email me. I have set up a separate box for just me for the duration, because I will be using my laptop, and Steve & I download our Road Runner email to our desktop. My "mobile" email address is: trilbyeileen@gmail.com. Good night all!
To bring you up to date, it is now Saturday evening, June 12- my granddaughter McKenzie's 14th birthday- hard to believe, but the calendar doesn't lie. I gave her a gift card to Abercrombie, and she was planning to go shopping with it today. This past Wednesday, Stratton, who had driven down from Dallas, drove me to Houston for my appointment with Dr. Adaani Frost, one of the pulmonologists who have been treating me. Additionally, I had another pulmonary function test. As most of you know, this has been an extremely confusing time relative to my disease and the potential treatment of it. (Actually, there IS no treatment, short of a transplant, so that's what we're talking about here.) Steve has excellent insurance (Thank You, God) and of course I am eligible for Medicare, but I carry Part A only (the free part), because my primary insurer is Blue Cross/Blue Shield which is provided through McJunkin-Redman. If you understand anything about health insurance, you know the first rule: the bigger the group, the lower the risk- and as a merged company, MRC (the new name) is the largest pipe, valve & fitting distributor in the USA. That is why we have such great coverage for less than $300/month total- for both of us! Since Methodist Hospital- Houston is an "in-network" facility for BCBS, everyone, including my BCBS Case Manager, assumed that I would be covered to have a lung transplant there. However, for reasons that I don't really understand, but don't really matter, I am only insured if the surgery is at the Baylor Medical Center in Dallas. My current doctors are at Baylor College of Medicine- Houston, so we needed to get this co-ordinated and quickly.
Dr. Frost is both obviously brilliant and very blunt. She looked me straight in the eyes, and said "You need a transplant, and very soon." Stratton asked her if it was true that without a transplant, I might not live the rest of the year, and she said "That's a reasonable assumption." It is so weird to hear someone talking about your death right in front of you- and in such a conversational tone! But she is also a woman of power & influence- a full professor at the Medical School with a large private practice she shares with Dr. Safdar, who has been seeing me, but who is visiting family in Pakistan right now- (and I sure hope she's staying somewhere safe!) Anyway, Dr. Frost could tell that I was pretty anxious (putting it mildly) so she said "Here is my email address". Now that is something- not many physician's give patients their email address, or so I have found. After that, she said "I will call the director of the transplant evaluation team in Dallas, and I will call him today. And if you do not hear from him by Monday, I want you to email me." And she did, and that evening I had email from her saying that she had reached Dr. Ausloos, and that I should hear something from his staff soon. Thursday morning I was indeed called, and the test results are being sent to them, and I was told that I would learn when my appointment is very soon. On Friday, Donna (Intake co-ordinator) called, and we are being scheduled for next Thursday, and another girl named Laney is to call me Monday with details, as she was off yesterday. So I think that brings you up-to-date. I will probably post something tomorrow that will go into the history of what is happening to me- some of you will just want to skip that, as you already know. But each day, from now until there is no longer a need, I will post something, and if I leave anything out, you can always email me. I have set up a separate box for just me for the duration, because I will be using my laptop, and Steve & I download our Road Runner email to our desktop. My "mobile" email address is: trilbyeileen@gmail.com. Good night all!
Subscribe to:
Posts (Atom)