July 16, 1997

My clamshell scar It's true. It has happened--through the grace of God, or the guidance of countless Boddhisatvas, or the prayers of many friends and relatives--whatever the reason, it has happened. And I am eternally grateful to everyone who has helped me extend my life through the miracle of modern medical science. I am also forever indebted to the donor, and his (or her) family, whose identity I do not know, to whom I have composed an open letter, which you can read by clicking here.

On a more mundane level, as I'm still kind of stuck in Baltimore, MD, without the tools I normally use to do the job, I'm somewhat limited in my ability to properly describe the transplant until I can return home to Pennsylvania and finish it there. But until then, which now looks like it will occur around the end of July, I will at least try to provide some--although they may be sketchy--details of my experience. I apologize to those of you that may have emailed me in the interim for my apparent silence, but as I assume you can imagine that a lot has been happening.

First of all, I was probably two weeks from succumbing to IPF when I did finally receive the call. In fact, amazingly enough, it came while I was in Lankanau Hospital's ER waiting for a room assignment, having checked myself in for a last desperate "tweaking", which I expected would last a week or two (an optimistic view, as I was to learn much later), probably followed by a ventilator, then death. I had, for the most part, stopped planning on receiving a transplant, as I had been officially listed for 14 months or so and heard nothing. Zero--it was a very slow year. And my IPF had gotten extremely aggressive--I was using 24 LPM of O2 through a 100% non-rebreathing mask, with 10 LPM through a nasal cannula underneath the mask for periods of recovery (after walking to a different room, or moving up an individual stair step on my butt, etc.). And now I felt that I needed even more O2, which prompted my call to Lankanau and the subsequent ambulance ride I took down there that fateful Monday afternoon.

Sheila Young, Transplant CoordinatorAfter being transferred into the ER, and then having my oxygen lines crossed so that the lower level went to my cannula (eventually sorted out as soon as Dr. Meyer arrived), I waited for the next thing, whatever it was going to be. Suddenly my wife Judy came into the room from the receiving area with a wide-eyed look, saying, "It's Sheila on the phone! She thinks she has a donor!" So you know, Sheila Young is the pre-transplant coordinator at the University of Maryland (the best I've ever met, by the way, and I've met a few), and had been in close contact with Judy through the last few weeks of my illness. In fact, that's Sheila over there on the right (I took this picture on a leter visit down to Baltimore, which was--a little out of sequence, here--on September 10, 1997.) In any case, Sheila is, as are all the members of the team we've met down here, simply terrific. I looked at Judy with a sense of numbness, even shock (which I still feel), but could say nothing. Here I was, essentially giving up, and now there's a flicker of hope, seemingly out of nowhere. How can you possibly react to such a complete reverse in emotion? I just put my head back down and waited.


Dr. John Conte, M.D.But apparently it was no ruse--it was happening. Eventually, it was decided to helicopter us both down to Baltimore, where we would be available if it was real. So three or so hours later, we were hustled the 35 minutes it takes by helicopter down to the roof of the Shock/Trauma building at the UMMC facility, where I would be prepped as they did a final evaluation of the donor's condition. We had been warned that they often decide right up to the time to start the operation to pass on a donor if the lungs aren't right, so there was always some doubt as we waited for the word. In truth, I knew and they knew that I would not survive a false alarm--it was now or never. Finally we were told that it looked like a "Go". Concerned, I asked if it was a "'Go-Go"? They said they thought that it was. Thankfully, they were right. 

By the way, that's the head of the UMMC Cardiothoracic Surgery group--what I call the Transplant Team--Dr. John Conte, over there on the right. I talk a bit more about him below. Nice guy--forthright yet compassionate, and with a good sense of humor. Kind of what you might call a No-BS kind of individual. And I mean that in a positive sense. My only advice to Dr. Conte would be don't bet the mortgage next time (little inside joke there.)

Dr. Joshua Sonett, M.D.From what I have learned, the operation took seven hours. It was performed mainly by Dr. Joshua Sonett, who was assisted by Drs. Conte and Fiocco, whose name I may not have quite right. I've assembled a lot of this account from the reports of others since I remember little about the operation or my first few days in ICU. In any case, someone was watching over me, as I later learned that a major contra-indication would soon be revealed that could have blocked my success had it been known at the time. More on this later.

That's Dr. Sonett over on the right. An excellent doctor and human being, Dr. Sonett accompanied me down a long windowed corridor on the top floor of what I think was the Gudelsky Building to the prep room (if I recall correctly). I do remember that he was very friendly. He asked me where I lived and told me that he had spent some time in Villanova, which is about 5 miles from my home. He also told me that everything would be OK, which I remember thinking at the time was somewhat of an over-optimistic statement, but it was relieving to hear him say it anyway. To be honest, though, I was just so happy to be there that I don't think anything could have bothered me--I was ready to go. I must have looked like hell, though, but you couldn't tell from Dr. Sonnet's demeanor. He played it straight down the middle. I've since been told by nearly everyone that Dr. Sonett had "the best hands in the house". I've also learned that great hands do not always a great surgeon make, but it sure helps. I thank God every day that UMMC never gave up on me, and that Dr. Sonett had a hand--or two--in it.

July 18, 1997
Dr. Jonathan Orens, M.D.Let me mention some of the other members of the UMMC transplant team. First, my primary Pulmonologist, Dr. Jonathan Orens, in whose hands my current fate now rests, e.g., what dose of Neoral to take, how long I have to stay in Baltimore, etc.--you know, little stuff. You can see him over there on the right. And Roberto Anzeck, P.A., who shares an office with Sheila Young, and is the post-transplant coordinator, working closely with Dr. Orens on follow-up issues. You can see Roberto in the photo under Dr. Orens. Of course, there's also Ms. Sally Haufman, who is the secretary for both Roberto and Sheila, and who sometimes intercepts my call and finds Sheila more often than not when I have a question. And of course, the entire staff in both UMMC's ICU, and its sixth floor "step-down" unit, where I spent a week or so each following the operation. Everyone played or plays a critical role in my future well-being, and has earned my complete trust at this point, which is essential to a successful recovery in my opinion. I believe in choosing well, and then letting the experts have their way with you. Or something like that. In this case, through either dumb luck or divinely directed necessity, I somehow stumbled on a group that others should soon know run a world-class operation--one I consider the best heart and lung transplant team in the world. Well, on this planet, anyway. While I could provide biographies of the main players at this point--and their pedigrees are without peer--it is their patient-oriented approach to medicine and fearless courage to save the tough cases that really carries the day for me. By the way, you can reach the group at 410-328-2864 (new number). Tell them I sent you.

Roberto Anzeck, Transplant CoordinatorOK, enough plaudits for one day. Let me tell you, before I forget, what anti-rejection/immune suppression drugs I'm now taking. Of course, I'm taking Prednisone and Imuran, both of which I was on during my illness. Although I was taking the same dose of Imuran that I'm currently on (150 mg. per day), I'm now tapering down from the 30 mg. per day of Prednisone I was on when I went into the transplant, and am currently at 17.5 mg. per day, which will be lowered again before very long. For that approach, I have to thank Dr. Orens, who is a self-professed aggressive taperer of Prednisone, if that is a word. The big addition, and the primary mover in this "meds cocktail", is Neoral (a.k.a. Cyclosporin, albeit in a more readily absorbable form). The exact dosage of Neoral has been adjusted based on twice-weekly blood tests taken at the "trough" point, when its level is the lowest, and has not yet been stabilized, so the current level of 175 mg. twice a day will probably change. The other components of my medication are mostly electrolytes, blood thinners, diuretics, and so on. And that's where it seems a lot of the battle is fought post-transplant--balancing electrolytes. I'll try to explain later, when I better understand what it's all about.

July 21, 1997
Healthdyne 950 Fingertip OximeterAnother random association--I'm now often asked, "What does it feel like to be able to breathe again?". Well, down there to the right is the answer--98% oxygen saturation--literally unbelievable. As an aside, what you're seeing is a Healthdyne Technologies fingertip oximeter, Model 950, which all pulmonary disease patients should try to have prescribed for them by their doctor, so that their insurance will cover it. This unit saved my ass, pure and simple, and it never--repeat, never--read this high while I was suffering with the daily rigors of IPF. I think this sums up the experience I've had since my transplant, but what follows is my early attempt to put the feeling into words:

I guess that breathing, when it is its most natural, is an unconscious, undirected activity. I've heard, however, that once you've been denied oxygen, that breathing is no longer ever unconscious, but that you forever feel that faint pang of oxygen deprivation, real or imagined, and that you breathe for oxygen, rather than as a simple automatic action. I don't know, though--right now, approximately 42 days after the transplant, it feels like a pretty unconscious activity, to be honest about it. My respiration is shallow, almost imperceptable, and except for my more-rapid-than-normal resting heart rate, everything seems "normal". Or nominal, as I like to say. So it really doesn't "feel" like anything. The thought of it, however, when I allow myself to think about it--which I tend to avoid, lest I jinx myself--is staggering. Unbelievable. Nearly incomprehensible. So objectively, it's a miracle, but subjectively, it's (probably properly) kind of a non-issue. Does that make any sense? That's why it's hard to answer the question. I have to stop and ask myself, "Yeah, what DOES it feel like to breathe again?", before I can respond, "Well, it feels GREAT!" The problem is that words can't possibly do it justice. Obviously, it feels a whole lot better than it did when I couldn't breathe AND eat, or breathe AND talk. It's just that language demeans the experience, like a lot of things in this world--and I have a degree in English, no less.

July 22, 1997

This is probably a good place to try to answer the most-often-asked questions I get about the actual transplant procedure. Not that I'm an expert by any means, nor have I experienced a lot of complications (yet) that would allow me to describe what to do when, and so forth, but just as a patient who had a bilateral sequential double-lung transplant as a treatment for end-stage IPF. So let's take a whack at it.

Is there any pain? This is a very common question, and is usually an issue early in the consideration process--less so down the stretch, when one's particular disease is raging, and a transplant is really the only hope one has. The answer is, however, for my part anyway, that I was never really aware of any pain during recovery. I've had minor discomfort in the region of the incision, and am waiting for the staples to come out (hopefully later today, actually), which should provide some relief, but from the actual operation, there was no pain to speak of. Whether due to excellent pain killers or perhaps the spinal tap they gave me two or three days after the operation, I don't know, but pain has not been a factor.

What does it feel like, as in either what does the actual operation feel like, or what does it feel like to have someone else's body part in your body? It's tough to answer this one, because I really don't have an answer. The actual operation was, in my case--due to issues like problems removing my old lungs which were sticking to the thoracic cavity--seven hours in length. I was out the whole time, as you can imagine, and was and are completely oblivious to what went on. I do have numbness in my right hand in the area of the pinky finger and, to a lesser extent, the ring finger next to it, both of which seem to be improving slowly over time. This has been explained to me as a possible side-effect of being lashed to the operating table with sheets in an unnatural position for seven hours, resulting in probable damage to the ulnar (sp?) nerve, etc., which seems plausible. In any case, other than that and incision area tightness, I have no really tangible evidence or knowledge of the actual procedure.

Of course, in ICU, for a time I was on a ventilator and up to four chest tubes, not to mention a penile catheter and some other catheters of unknown origin, and suffered a mini-stroke, as well as a minor paranoid schizophrenic-like episode in which I thought I was being lied to about my new-found 98% oxygen saturation levels, but I think we decided that this was all mostly related to my reaction to the pain killers (Percoset?). After a minor medication adjustment and some blood thinning, I settled down to a pretty uneventful recovery. Of course, this does not take into account the prolapsed hemmorhoid episode I experienced after approximately two and a half weeks in the hospital, unable to get Metamucil and Colace provided on a schedule that I use at home to treat just such a condition, but I attribute this to excessive bed rest and the lack of suitable treatment.

And lest I forget, there was the physical condition I was in after the operation, namely a complete lack of strength, including the inability to even lift my feet up off the bed, which I attribute as much to my pre-transplant condition as to any side-effects of the actual procedure. I'm told that I came out of surgery weighing 133 pounds. During healthier times, I generally weighed 195 pounds, sometimes getting as high as 205 pounds, but for the last two years maintained a "cruising weight" of 175 pounds, so this represented a dramatic loss of weight. Today, some 43 days after the operation, I weigh just about 150 pounds, and am finally gaining weight fairly steadily. So almost all of my recovery has centered around gaining weight and strength lost during the illness and the transplant.

How it feels to have another person's body part(s) in my body is another question, but one I rarely ask myself. More appropriate is probably how do I feel? I can't yet at this point allow myself to get too cosmic about the intermingling of tissue and all of the religious and social issues that come with it. I'm still in the IPF state-of-mind, where survival is foremost, and I'm afraid that all other considerations tend to fall by the wayside. Perhaps with the luxury of time, I will address these matters, but right now they're pretty far down the list. Again, this was probably of greater concern to me earlier in the transplant consideration process, and less so as the disease progressed. As the Buddhists say, "There are no answers; why ask questions?" That probably best sums it up for me.

July 25, 1997

What should I talk about next? I mentioned earlier that I learned about a couple of things that might have blocked my success had they been known earlier--primarily by the transplant team, as it turns out. Foremost among them is the fact that a CAT scan of my diseased lungs after the transplant revealed cancer of the alveolar cells, as a secondary symptom caused by the scarring incurred by IPF. The good news, however, was that first, the cancer seems to have been entirely contained within the discarded original lungs, and second, this type of cancer, which my Pennsylvania-based primary care pulmonologist Dr. Tom Meyer tells me his father originally published the first article on, is one of the most unaggressive, least-likely-to-spread-and-be-a-problem cancers you can have. My former pulmonologist at Dr. Meyer's office, Dr. William Figueroa, to whom I owe a debt of gratitude for taking me from the diagnosis stage to the transplant awareness and acceptance stage, told Judy and me about this phenomenon way back in our visits with him, but discounted it as so rare that it was unlikely that I'd contract it. Well, now, having suffered so long with IPF in an extremely aggressive state, it had come to roost. And something reminded me that my Dad's biopsy a year before he died and his autopsy report mentioned both Pulmonary Fibrosis and a cellular anomaly that might have been this alveolar cell carcinoma, further reinforcing the theory that I had familial IPF. Whatever the case, now the punch line--if the transplant team had known I had this condition, they wouldn't have transplanted me. But, and here's the good part--the fibrosis obscured the cancer on my X-Rays! Judy said, "Finally--something Pulmonary Fibrosis is good for--obscuring the cancer!". She was right. Dr. Orens cites a report from the University of Alabama that tracked eight patients with this cancer that received lung transplants, and six of them are fine. Two, however, had a recurrance of the cancer, and it sounded as though they might have succumbed. So it looks like a 75% chance I'll be OK long-term. In any case, now we have to track it like any cancer, and today we meet with a Dr. Doyle at UMMC for our initial meeting, to be followed by an MRI of my Adrenals next Tuesday, and quarterly CAT scans thereafter. The fun continues.

July 26, 1997

What did we learn at the Cancer Center? Well, for one, that the reason I'm getting an MRI of my Adrenals next Tuesday is that an earlier CAT scan showed an anomaly on the left Adrenal that could be an adenoma, but must be pursued nonetheless. Most likely, I'm OK, but my Cancer, which I now know as bronchioloaveolar carcinoma, was multi-focal, although well differentiated. Which means that it was in both lungs, which is bad, but its cells look well defined, which is good. The badness is because it means it might have travelled from one lung to the other, although the hunch is that it sprung up in both lungs spontaneously. The goodness is because well-differentiated cancer cells tend to stay in one place more than poorly differentiated cells. So we wait until next week now to find out how worried to be. It looks like a 20-30% chance that we'll have a problem, which I'll take. As Dr. Doyle said, "Oncology is a study of probabilities". Or something like that.

Or as Steve Vai's grade school teacher says on one of his recordings, "Love it!" (not really). Actually, nothing really bothers me anymore--the worst things are just petty annoyances. It's amazing what a helicopter trip in a foil body bag can do for you. Eeks.

July 28, 1997

It occurs to me that I've forgotten to mention some other key players on the University of Maryland's transplant team. I suppose it's impossible to name everyone that contributed to my success, but I can't let these individuals go unnoticed. First, let me say that evryone played a very different role, but they all seemed to have one purpose--to see me make it. It's a humbling experience--especially so since every now and then I flash on the fact that each person was doing a job, but never did it seem that way. These are very different, very special people.

In order of appearance, here they are: First, a guy named Fred. Fred's role was that of transplant coordinator during the operation. He was one of the first people I met (or saw, actually), as I was wheeled off of the helicopter on the roof of the Shock/Trauma Building. Fred was responsible for most of the information that was imparted to my family during that long evening, keeping them updated with my progress and answering questions as best he could. I have not seen Fred since that night, so I believe that he's a subcontractor that hires out to work transplants (and maybe other operations) wherever he is needed. I really don't know, though, so Fred remains somewhat of a mystery, and I kind of like it that way. Fred was, however, great.
Bernice Wolfson, SociologistNext, although she and the next person are actually out of order here, now that I think about it, since I met them both on my original visit to UMMC in February, are Dr. Christine Scotsko, and Bernice Wolfson (there's Bernice over there on the right). Dr. Scotsco is the staff Psychiatrist, and Bernice is the Social Worker. Dr. Scotsco handles the hidden problems (and maybe some not-so-hidden ones as well), and made sure that I wasn't suffering from, among other things, post-transplant depression. One concern she had, which I guess just goes with the territory, was whether or not I owned a gun (I do--a 22LR single-shot Anschutz target rifle I've had since my Boy Scout days), and if I did, could I please store it in one room and store its ammunition in another? Actually, this came out during our initial meeting in February. Judy and I looked at each other and thought, "Wow--what are we getting involved with, here?". But I don't doubt that it's important to properly protect the patient--even (or maybe most importantly), from himself (or herself). It did open our eyes, though.

Bernice, for her part, was a constant source of helpful information, most of it highly practical, and obviously culled from lots of experience. I'm referring to help with hotels, the transplant support group, assisting Sheila with (my) customer complaints, and just general advice. Never did she criticize, condemn, or ridicule--even though I deserved it on a number of occasions. She would just pause a beat, and give a perfect answer. Bernice is just really remarkable, and opened my eyes as to what a social worker could really do. Frankly, I never expected to need her help, but she has been invaluable to Judy, and together with Sheila, helped me through an especially difficult time, when everything seemed confused and disorganized (and probably was), and calmly and gently brought me back to whatever reality I was finally satisfied with. Whatever they said, it worked. That's all I can say.

So to Fred, Dr. Scotsco, and Bernice I say Thank You, and sorry I didn't mention you earlier. Now, before I forget, let me also mention a few nurses in ICU whose identity I amazingly seem to remember--Greg, who understood nearly every syllable I mumbled through a ventilator hose stuffed in my dry-as-a-bone mouth--a considerable talent. Also there was Chris, who was always steady and reliable while I was off in some kind of dreamland somewhere. And let me not omit Jo Ann, who humored me with my insistance in maintaining my nasal cannula, even though the oxygen had been turned off for nearly a day by that time. Funny stuff now, and everybody gets a good laugh when Judy tells that one, I can tell you. Yeah, there are a lot of funny ICU stories when I was highly medicated, and spewed gem after gem that I cannot remember to this day. But to hear Judy tell it, I was a riot, I have to admit. I just wish I could do it all the time. Oh well, next transplant we'll record them.
Mary Beth, Night Nurse (Step-Down Unit)Well, here's anoher out-of-sequence update, as I get pictures to fill in with the text. I should mention the nurses on the sixth floor at UMMC, who really took me from the out-of-ICU stage to sort of street-releasable condition, and there were a lot of them--some great, some not so ultimately great, but hey, that's life. But all essential to my progress, and I was not the easiest case they've had, I'm sure. Primary among them in my mind probably was/is Mary Beth, whose picture I now can show, over there on the right. Mary Beth helped me greatly with my meds, and gave me some inside scoops that made coping easier by far. I should also mention Lynn (formerly from Norristown, PA, where we live), Janice, Page, and many others whose names I had a real tough time remembering then, and now. But as I get back down there, as I seem to happen to do (like just last week--this little update is being written on October 7, 1997), I'll fill in the gaps. I got this picture of Mary Beth as well as the shots of Doctors Conte and Sonnet above in this last trip, so it wasn't all bad. I have to describe it down below when I get a little more time.

So there you have it--I know I've missed others again--those I've met and those that toiled behind the scenes, like Karen (in charge of organ and tissue procurement for the O.P.O.), and countless others. To those I've missed, like the resident on the sixth floor where I spent a week and a half after my stay in ICU, and all the others, I say Thank You, and I'll get you in here as I fill in my memory gaps. Not that you have asked for, or need the acclaim that will no doubt follow a mention in this account, but you should be mentioned, if I can manage it.

July 29, 1997

OK, one last thing about the transplant program at UMMC--in my opinion, it's rare to find a situation where the head of the program is a skilled and active surgeon, and that's exactly what you find at UMMC, in the form of Dr. John Conte. Certainly, Dr. Conte's ability as a surgeon alone is enough to recommend the group, even though it appears that his specialty is heart transplants and we're talking about lung transplants here. Yet he participated in my operation, assisting Dr. Sonett--who is the young hot-shot on the team with the great hands by all accounts--and obviously attracts and hires top talent for his group for the same reasons that I'm citing here. Like the best teams have so-called player's coaches, so Dr. Conte is, from what I can see as a mere patient, a doctor's administrator. Although perhaps some decisions and recommendations get made based more on furthering the solvency of the group than on taking advantage of the best available services, these referrals are usually minor in nature, and never in the realm of critical care and performance. I'm talking about things like physical therapy and other issues more related to rehab, etc. And like I used to say to my customers--you don't want a vendor that's financially sick, do you? You have to ultimately pay for longevity if you want long-term support.

I think the best way to put it is that this is a group that is hard on the scientific side, but compassionate on the patient side, which is exactly where I think they have to be. I like this mix, and I think it is reflected in their work. Enough said.

August 5, 1997

Sorry for the delay. I'm happy to say we've now been home for some six days, now, having returned to Pennsylvania last Wednesday. Not that there's anything wrong with Baltimore. But paying mortgage on a house we weren't living in and paying rent on an apartment not covered by insurance was a problem--not to mention the whole at-home feeling that we missed. The last time I was home, actually, I was wheeled out of the front door on a stretcher by the West Norriton ambulance crew for a trip to Lankanau Hospital for that aforementioned "tune-up", which was a likely percursor to a relatively quick demise. Let's face it--things were not good. But they're better now, to say the least.

Anyway, having returned to visit my pulmonologist here in PA today, and having brought my Olympus Model D-200L digital camera with me, I now have pictures of some of the great people there that I would like to share with you. Mind you, this is just the beginning--next Monday, we return to Baltimore, and if I don't forget anything, we'll do the same with as many of the folks down there as we can manage. Right now, I have to figure out how to get them on the page in some kind of embedded fashion, as opposed to just saying "click here", as I've been doing up to now. So this will be a good test; let's get started.
Dr. William Figueroa, M.D.Let's start with Dr. William Figueroa, who was originally my "second opinion", and to whom I really owe a lot of my success. It was he who guided me through my original official diagnosis, which consisted of a bronchoscopy that was inconclusive and a video thorachoscopy (sp?) that confirmed the presence of IPF, to my referral to and acceptance in the transplant program at HUP. And I have to thank my then-GP, Dr. Mackey, for his recommendation of Dr. Figueroa. As Dr. Mackey tells it, he and Dr. Figueroa go way back to their early days at Bryn Mawr Hospital, where Dr. Mackey told Dr. Figueroa that he was destined to head up some large Pulmonology group somewhere--which he eventually did, most recently at Lankanau Hospital. These days, Dr. Figueroa is working part-time, due to a partially disabling coarse neurological condition, and we were elated that we got to see him today at the office. I and Judy wish him all the luck in the world as he works through this somewhat difficult time. To us, he is The Grandmaster, and deserves nothing but the best.

Dr. Tom Meyer, M.D.Which brings me to Dr. Tom Meyer, who inherited my case as Dr. Figueroa became less available, and with whom we fought as a team to survive those last five or six months when the IPF was its nastiest. Dr. Meyer was as perfect a partner in such a battle as you could hope for--always willing to try something, listening to my ideas without laughing at them, aggressive without being reckless, courageous yet calming, and sacrificing his early morning sleep without a complaint (when I would beep him at home early in the morning--hey, it happened). I feel a special kinship with Dr. Meyer, as well as with Dr. Figueroa, who as an astute hiring manager, has assembled a staff that works for the patient, not their own reputation. Very similar to the group at UMMC--patient-oriented, and not afraid to try to save the tough ones. You have to love them all.

Donna DeBerardino, Respiratory TechnicianThis is Donna DiBerardino, the office nurse/respiratory technician/physician's assistant. I don't know what exactly Donna is, officially speaking (except now I'm told she's a respiratory technician), but she embodies what I now hold as the standard for a pulmonology group assistant. I can't count the times Judy and I have called her for prescription assistance, which she always provided in a timely and accurate manner. She, like Pat below, has a genuine interest in the wellbeing of her patients, and it shows in her everyday activities. Donna is a big reason why, even after I was accepted into the transplant program at HUP, that I retained Dr. Figueroa (and then Dr.Meyer) as my primary care pulmonologist.

Pat Harris, Receptionist, Pulmonology AssociatesThis is Pat Harris, the receptionist at Pulmonology Associates. Pat always answers the phone with the utmost in professionalism and concern. She has never flubbed an appointment (not that she would), and has a genuine interest in the well-being of both her office's patients and practitioners. I always felt that the most important person in any organization is the one that the public sees first, and Pat bears this out. She is a delight.

August 9, 1997

Now that we're back home, local out-patient pulmonary rehab is the order of the day. Oh, before I forget, yesterday, almost by accident, I learned that the MRI of my adrenals came back negative for cancer. I have only one word for the doctors and nurses of today--call the patient! Jeez. Anyway, we're celebrating.

In any case, as I was saying, we're doing rehab again at Montgomery Hospital, in Norristown, PA. And I promised my good friends there way back in November of last year that I'd get a picture of them up here sooner or later. So it's a little later. Here they are:
Phil Landis, Head of Pulmonary Rehab, Montgomery HospitalThis is Phil Landis--Mr. Pulmonary Rehab, as one of the staff wags recently said. Actually, Phil is a terrific advocate, and a really gentle soul who hails from Lancaster, PA. We're talking a major commute, here. Phil has nursed me along since my pre-transplant days, when I was on mass quantities of oxygen, and breathing over 40 breaths per minute, still desaturating 20 plus points just walking from the garage to the elevator. What a thrill to set new post-transplant performance records that have everyone open-mouthed, if I do say so myself. But Phil keeps me from overdoing it, and that's vital. Good guy.

Susan Ryan, Respiratory TechnicianHere we have Susan Ryan, Respiratory Technician (I think), who as an asthmatic herself, understands all too well the problems experienced by patients with pulmonary disease. Susan is right there with the "sat gauge", and always has an interesting story to distract you just enough as you toil away at the treadmill, minute after minute. She also organizes an extracurricular group, the Easy Breathers. I sorry to say that I haven't joined these people, yet--no doubt a wild and crazy bunch.

That's them. Now that I'm getting back into a local rehab groove, I'll be seeing them three days a week, for maybe an hour and a half a day, which I'll describe in more detail as we get along here.

August 12, 1997
Judy Stevens, Chief CaregiverYou may have noticed a few more photos littering this page lately, namely shots of Dr. Orens and Roberto that we took yesterday in Baltimore during our first Clinic since returning home a couple of weeks ago. Fortunately, we had a relatively uneventful Clinic, which is the way I like it, and we got great pictures of those two guys. I tried for Sheila, but was a little late and will have to wait until next month. Judy and I ended the day with a meal at Strapazza, on Pratt Boulevard, which is only a few blocks from the Professional Building where we have the Clinic, and that's where I took the picture of her you see over on the right. Had to get it in somehow. Notice the distinct lessening of the stress lines since the transplant. I tell you, this whole experience has had a youth-giving effect on everyone in one way or another. A marvelous thing. Anyway, a few related medical details--my Prednisone level is now down to 12.5 mg. per day, while my Neoral is up to 225 mg. twice a day. I can't quite get that Cyclosporin (Neoral) blood level up to where we want it. And now we're in a little discussion about my blood pressure, which I maintain is running true to course, but some of the instruments show as high-ish. The at-home cuff/digital readout device I have is one of those instruments. It's way high, I think. Unfortunately, the Sphygmomanometer (ha!) in the Clinic (actually in a couple of Clinic examination rooms!) bear out its readings. Not good. But every time I've had it read in rehab, it's been right in line with my historic low number(s), which run typically 120/72. The little at-home bastard wants to say it's 130/90 or higher! I say Bogus! Dr. Orens says, "Here's a prescription for Hypertension medicine". I guess I lose. Well, we're watching it.

September 22, 1997

Well, I've been quiet for a while, I know. Been trying to figure out what to say next, actually, as I've had a couple of interesting developments that have had the experts scratching their collective heads. Mainly, right after my August Clinic meeting, where, as you may recall, my Prednisone level was reduced (barely) from 15 to 12.5 mg. per day, I shortly thereafter developed a nagging low-grade fever that persisted for perhaps 7 days, during which time I went off of Imuran, saw Dr. Meyer, had a chest X-Ray, had my Hickman catheter ends cultured, met with an Infectious Disease specialist, and so on, all to have it just correct itself on its own, apparently. During this period, my band count was up to roughly 21, indicating the early release of white blood cells, suggesting some kind of infection, but none was ever found. I sort of "got better" around the same time my white blood cell count returned to normal, which had been depressed. So we figured we got lucky on that one, and resumed the Imuran and went from there.

Then again, right after my September Clinic, at which I took the pictures af Sheila and Bernice you see above, when my Prednisone was reduced again, this time to 10 mg. per day, the same thing happened. But this time, my band count was not nearly so high, but my temperature was marginally higher, and I actually got dizzy and fainted last Monday morning, which of course set in motion a whole chain of events, mainly consisting of a 2-day stay at Lankanau Hospital (my personal favorite locally), at which they repeated basically the same tests they ran the last time, with largely the same results, or lack of same. Very strange. Oh well, back home on Wednesday, and taking blood for analysis every other day or so, I think we're just going to try to pull in the last Cytogam IV infusion a few days earlier than scheduled, and get the catheter out as soon as possible, which is shaping up to be maybe mid-week this week. Still waiting on the last CMV antigen test, which would kind of dictate whether or not we can really deep-six the catheter. I'm not convinced that an infection associated with the catheter is the culprit, but it would explain this curious combination of symptoms. Curiously, my Neoral (cyclosporin) level is running real high right now, so we temporarily took it down the dosage to 200 mg. twice a day for the intervening weekend, and we'll see what this morning's blood draw looks like. My feet and lower legs, as well as my hands, are just killing me by the way, which is a real pain--especially for rehab. I suspect the cyclosporin, myself. It's somewhat of a mystery what sets the exact blood level of this stuff, at least to me. It is apparently not well absorbed normally, which is why I understand that Neoral was developed--that, and to get another 17-year run on the profits for Sandoz. Hey, you to have need prosperous suppliers, I always say.

Well, I'll try to give a little more substantive information as it develops. I've got a surveillance bronchoscopy coming up next month--maybe they'll see something then. I still think it's just a rebalancing act prompted by the Prednisone change, but what do I know?

October 26, 1997

Again with the protracted silence, waiting for something tangible to report. What has been happening? Well, I guess the bottom line is that primarily from the symptoms described above, I was summarily summoned to Baltimore for an impromtu Clinic, to which I wore a jacket and tie, and looked and felt pretty good. We (Dr. Orens and Roberto, actually) lowered and/or discontinued or replaced any meds that could cause this presentation (lingo!), and I got an X-Ray (and maybe some blood drawn--I forget) as we were leaving.

The very next day, a phone call came from Roberto, suggesting that we return immediately for a restful 7-10 day sojourn of IV antibiotic treatment for what appeared to be pneumonia on the X-Ray, sort of shattering our short-term bliss at not getting admitted the day before for whatever reason (you never know). Well, down we go, and a followup CT scan shows less of a consolidation than perhaps some fluid, that indeed was some 300 c.c.'s of effusion they tapped out of me that Dr. Conte felt was still consistent with pneumonia, but that Dr. Orens was now feeling less so inclined. A surveillance bronchoscopy (I love that expression) followed, revealing The Big Show--Stage A2 rejection, with CMV growing in the lavage fluid and in a urine culture. We got out of the hospital after four nights on Friday--Judy stayed at the good old Holiday Inn again--and scooted home. A nice week, weather-wise, at least.

While I was there, I took PFT's, and an exercise test--had the best results in the lab that week they told me--and my temperature was normal. After four days of self-inflicted nupogen (sp?) shots I had taken at home prior to the Clinic/next-day admission, my white blood cell count had shot from 2.2 (also known as 2200) to 26 (or 26,000), so we stopped those, and they fell daily some 4,000 or 5,000 units (points?), until they got to a decent number. They are apparently now down at 4.2 or something, so we're watching them again--this after this last Monday's follow-up bronchoscopy (another!), now two weeks after the one that told this whole story. This one came up negative, and the CMV isn't growing, as the steps taken after the last bronch have apparently proven to be effective.

They were:

1.) To increase the Prednisone level to 40 mg. per day for two weeks, tapering down 5 mg. per day until I got to a new higher baseline of 15 mg. per day (which I assume we'll live with for a while and see what happens), and,

2.) Another month of my old friend, IV Gancyclovir therapy--twice a day for two weeks, and once a day for two weeks.

This time, Hickman schmickman, I said, so I went for a mid-line 30-day catheter in my left arm (which blew up after three days), followed by a back-up 7-day catheter in my right arm, which was then replaced with another 30-day guy in the right arm, which is fortunately, still hanging in there, having survived the last of the two-a-days, and only has to make it for another week or so. So, since I can't get shit out of my left arm, it seems, or even into it, I had them stick it with my flu shot during this last trip down to Baltimore. My right arm, fortunately, is like gold--does it all. Knock on wood.

<Snipped a lot of miscellaneous baloney--Prednisone will make you very chatty.>

So, back to the medical issues at hand, I guess rejection can be your friend, in a wierd way. The important thing I learned was that rejection and infection are (to quote a particularly impressive and witty Infectious Disease doctor down at UMMC), the evil twin and the more evil twin. They present themselves the same way, but are treated in exactly opposite ways. Rejection is a reaction to a robust immune system, which must be then throttled back, which leaves you open to infection. Infection is the result of an under-achieving immune system, which must be then strengthened, which can lead to rejection. Another one of these insane balancing acts. I am getting a new appreciation for my Buddhist teachings back in college, regarding the whole ying-yang thing, and feel somewhat like a finely tuned car engine, what with the old compression versus gas octane balance, and all that. Feel great, though, if that means anything.

Well, that's the show for now--hope you liked it. Probably could have avoided some of the machinations we went through, but it's the results that count, and we now seem to have a cause, and an answer (or answers), and that's comforting. I just look forward to a little less excitement down the road, is all. As always...

November 27, 1997

Happy Thanksgiving!

I'm back. A few things have changed, almost all for the better. (Whew.) Our most recent trip down to Baltimore, last Tuesday, was pretty much a win, in that I got a clean bill-of-health, had my best Spirometry results ever (80% of predicted, which equates to "normal lung function"), found out that my CMV is inactive, and that no rejection was found in the followup bronchoscopy a couple of weeks earlier. So Dr. Orens torqued the Prednisone down to 12.5 mg. per day, discontinued the Lasix and Potassium, and we came home. I drove both ways, which is a major deviation/accomplishment.

November is a heavy month around here--first, there's Halloween right before it, then my birthday is on the 2nd, Judy and my wedding anniversary is on the 11th (our 7th, this year), and then Judy's birthday is on the 19th. And now we have Thanksgiving. Anyway, through this period, we've been doing things for the "first time since the transplant", as we seem to be saying a lot lately. You can see the pictures from my birthday if you click on the "here" links on the front page, we went to a great restaurant (the Spring Mill Cafe) for our anniversary dinner, and then we played 9 holes of Chip 'N Putt at "Woody's", with Judy's Mom on Judy's birthday. And this last Monday, we actually went to the movies and saw "Midnight in Garden of Good and Evil", which is a must-see. I think the last movie we saw in a movietheater was "Twister". Egads. I'm now on monthly blood labs--instead of once or twice per week, which was starting to kill my arms--and there are no catheters anywhere on or in my body (at least that I can find). And lastly, I'm up to 170 pounds, just 5 pounds under my (I think) ideal weight, and am finally developing some upper body strength just from my normal hyper-activity level, thus getting a reprieve from having to go to Pulmonary Rehab (sorry, Phil). Oh, and now I can have a beer a week, according to Dr. Orens. I don't think I really ever had more than a beer a week when I was healthy, if you average it out, but it seems like an awfully small amount when you state it like that--so on our anniversary, I had two. It's now two weeks later, and I'm having another one right now, after dinner. That's a beer a week, isn't it? A little amortization, there.

Say, it's almost like things are back to normal. (Did I say that?)

Actually, thinking about all of these things today, on this day of giving thanks, I have to say that I owe absolutely everything to my Donor and his (or her) family, without whose selflessness none of this would have been possible. I hope that their loss does not intrude too greatly in their lives, for it has, in an ironic way, helped bring joy to a great many people. Also, I am in tremendous debt--no pun intended--to the wonderful team at the University of Maryland, as well as to Dr. Kotloff at HUP and his referral to UMMC, and before that, to Drs. Figueroa and Meyer, who kept me alive through some pretty sticky times in order to get me to the transplant. Not to forget Dr. Mackey, my original GP, who recommended Dr. Figueroa, and before that, Dr. Sesso, who first treated me at Suburban General Hospital, when we all thought this was just some kind of pneumonia. And way before that, to my Dad (Steve), who suffered and eventually died from this disease at a time--1971--when a lung transplant was just a dream. Thankfully, I live in a time when I could realize that dream, and now I'm here, which has a kind of paradoxically sad yet joyous feel to it. And thanks again to my incredible wife, Judy, who went through hell with me and for me, and to our collective families, all of whom suffered to a large extent in many more ways than I did, and to the countless emailers and websurfers who have contacted me (and still contact me), both with questions and encouragement, to who and to whom, along with my Donor and his (or her) family, I dedicate this website. Carry on, all of you, with my deepest gratitude.

I'm sure there will be much, much more--both good and bad. But hey, that's life! For now, however, we have much to be thankful for. I'll see you later.

March 13, 1998

I didn't realize that my recent silence was indicative of a possible problem until I received an email from a very nice person who said she had been checking my website for updates, and having seen none, was there a reason? I guess the best possible reason--there has been nothing to report! Things are literally, as they say in the CAT scan biz (when you're lucky), "totally unremarkable". Or, there have been no--as Roberto says--"undefined feelings of unwellness". I guess you can't ask for any more than that.

Actually, I have another quarterly surveillance bronchoscopy down in Baltimore coming up next week. I'm going to jinx myself here when I say this, but if I could call it off and save a few bucks--it's a new year, with new deductables, caps, and so on--I would. I feel that good. I've been maxing out my peak/flow meter (at 810) for over 65 days in a row now, and yesterday--get this--I dug out my trumpet and flugelhorn, cleaned them up, and played a little. Not bad for a terminal IPF patient. Judy came down to the basement when she heard me, and said she had never heard me play in the 9 years we've been going together. So I'm going to clean them up some more and take a new cover shot for the site--ought to be a startling image.

So, we give thanks every day--or try to--or at least think about the gift of life we've been given, and attempt to help those in the position we found ourselves not so long ago. If we can help anybody in the way a few very special people helped us, then maybe we can feel a little less unworthy of this precious thing we call living.

Which isn't to say that I don't still get pissed off at the odd idiot up here on the net. But I digress.

So, I will put in a little more information when we see how we're doing in this, our third quarter since the surgery, at the Bronch next week. See you then.

August 4, 1998

Well, big jump in time. I've been getting a little sloppy, putting my updates on the homepage, which is of little use to someone seeing all of this for the first time. We're now over a year out from the transplant, have had the "Anniversary", as it were, the annual bronchoscopy, PFT's, and so on. To sum up, my biopsies have been clean since the bout I had in late September, 1997, which was a combination CMV infection and Stage A2 rejection. As a result, they jacked up my Prednisone level to 15 mg. per day for a few weeks, then tapering back to 12.5 mg. per day, where I stayed for a few months. I was then "lowered" to 10 mg. per day for about a month or two, and now with this last round of tests, I'm down to 5 mg. per day. All the while, I've been on a steady 225 mg. twice a day of Neoral and 750 mg. three times a day of Cell-Cept. This is the lowest dose of Prednisone I've been on since "it" all began, back in April, 1995--the official diagnosis, that is.

Which brings me to my next, very important point--the diagnosic phase of having IPF. I just received an email from a very nice woman that recently suffered the untimely death of her fiancee from what I believe are complications resulting from an open-lung biopsy that was performed in an attempt to do an "official" diagnosis of IPF. He was 42. His sister, sadly, passed away from IPF some 18 months ago. I think it is safe to say that if he was experiencing serious respiratory problems and had an example of IPF in his immediate family, then an open-lung biopsy was unnecessary. I resisted one myself out of abject fear, and I didn't even know what I know now. This is the third example of this reaction to what is in my opinion an overly invasive, ass-covering attempt to "not lose" that I've become acquainted with (see my opening comments on the homepage). A very terrific guy I know in Texas lost both of his older sisters (that had IPF) both within a month of each of their respective open-lung biopsies, and now he has it, too. I nearly made him promise me that he would seek the alternative of a video-assisted thoracoscopy as I had, and he was fortunate enough to find a doctor that would allow him to do so.

Why do Pulmonologists insist on an open-lung operation for a patient with diminished lung capacity, when it is one of the most painful experiences you can have outside of major corrective surgery? Why do they feel they need to have analyzed the massive amount of tissue that such an operation can yield to do an adequate diagnosis, especially when the patient has examples of the disease--which is known to have familial origins, despite the protestations of so-called experts--in his (or her) family? Why did they simply lop off the breasts of women who were at risk for breast cancer, rather than seek a therapeutic cure? Why do they do Ceasarian sections when natural (vaginal) birth is less risky? Can you say unnecessary surgery? Can you say money? Can you say lazy? Can you say "cover your ass"? Can you say Insurance Companies?

Can you say "playing not to lose, instead of playing to win"? The simple fact is that patients need to know BEFORE a sorry conclusion that there are alternatives. Who will tell them? Other patients--is there anyone else? Doctors? Insurance Companies? I don't think so. Maybe nurses--often they will give you a much less embellished version of the "official line", or even the truth. But otherwise, if you don't have access to other patients that have figured out what may be going on, you're on your own. I was. And many others are, too. If you have a question about any of this, please ask me in an email. I will answer you.

Be careful--your doctor may not know any better. Sadly, he (or she) doesn't always have to, but you do.

October 23, 1998

Again, sorry for the big gap. Lots of mundane stuff happening, perhaps interesting only to me, but as I'm adding a counter to the bottom of this page, I ought to at least explain why. A few days agao, I received a notice from my (now former) ISP, Voicenet in Ivyland, PA, that the data traffic emanating from this website was exceeding that provided for in their contract for a "personal" website as included in their subscription for online services. Because of this they wanted me to agree to this finding within three days so that they could begin to assess a "surcharge", and if I did not respond, they were going to disable the site. Nice. Well, a couple of emails and a massive understaking by me to recompress all of the graphics (pictures) on all of the pages and on this page in particular will, I hope, ameliorate this problem, or at least prevent any interruption of service or surcharge. Additionally, as the homepage counter didn't seem all that high, I figured that perhaps people were linking directly into this page so that I'd better keep track of its' hits as well, to see what they're talking about. When I asked them for a detailed accounting they told me to download a weblog file from their site and find my address wherever it occurred and total it up myself. The freaking file was 45MB long! Again, nice.

Since that time, I switched hosting services from Voicenet to Netcarrier, and now--as of September/October of 2006-- to GoDaddy.com. I don't know of a less expensive, more feature-rich hosting service available, and I'm thrilled to be with them. Expect many changes as a result, including the restoration of my IPF Questionnaire Page. I will say that if you have a need to create a site, see GoDaddy.com. I am not an employee, nor do I receive any fees for endorsing them (I don't have a tax ID, nor am I a non-profit organization). This site is mine and mine alone, and I pay all fees, for hosting and for content creation (including html code and the research needed to support it).

Otherwise, I finally made the switchover to Johns Hopkins where my UMMC doctors are now situated, and saw Dr. Orens for my quarterly checkup. I'm not about a year and a half out from my transplant, and--knock-on-wood--doing OK. The Outpatient facility there is excellent--it's just the roads getting there are a complete mess. Hey, money begats change, and that's a Good Thing, right Martha? I think everybody will benefit from their move, and that too is a Good Thing.

Also on the newsy front, I looked into getting a nice dedicated domain name for this site, and immediately looked to see if www.ipf.com was taken--it is. But get this--www.lungs.com is for sale! I think they want $Thousands$ for it, from the look of the banner on the site that comes up when you try to link up to it. Take a gander--it's a hoot. I suspect that they would like it to be a hooter. Anyway, here's another nice little guerilla move for you--send the greedy bastard that wants to sell lungs.com to some adult service (no doubt) for mucho danero an email and ask him to get serious and donate it to our little cause here--I did already, but I am only one man, and there has been no word yet. Is what I'm suggesting here legal? Who knows?

So that's it--life goes on. Isn't it wonderful? Take care and thanks for all the inspiring email.

May 11, 1999

Sorry for the lapse--I hope you've figured out by now that most of the updates for this story--which is actually my life--are posted on the homepage, as this page is so long that to add any more to it would make it even slower to load. However, I stepped in today and realigned the pictures and text a little bit, separating, resizing, and making invisible the tables that allow me to (somewhat) interlace text and pictures in some kind of relevant fashion. I'll be tidying it up some more when I get the chance, and a menu is not too far off, for quicker reference. You have to understand that it was started as more of a mental therapy effort than a professional documentary, so it's got a lot of quirkiness about it that makes it tough to straighten out. Just like me! See you again soon--got my second anniversary coming up next month and we'll be in Cape May, NJ again to celebrate.

To those of you with IPF and who are either waiting for a transplant or perhaps can't receive one, you are in our prayers and in our hearts. Email me with any questions you may have about anything you find on this site. That's why it is here. Take care and hang in there. Always!

For more recent news and updates, please go to the front of the site.

To get back to the WA3FLE homepage, click here.

You are visitor number counter to my transplant webpage since June 10, 1997.

Copyright © 1997-2006 by Roger W. Stevens. All rights reserved.

Comments? Email me by clicking here