September 16, 2006--Thus begins a new era--a time with a website dedicated to patients with Idiopathic Pulmonary Fibrosis--www.ipfinfo.com. This has been my dream, only recently realized through the experience I gained by moving www.newlungs.com to a new hosting service. My original site will remain, and with it my opinions of the country we live in as well as details on my hobbies, the inclusion of which was originally designed to be mental therapy but which quickly evolved into a device to lure readers who never thought about organ donation before to a site that has as its core the notion that the more donors we have the more lives we can save.
For a time, things will look largely the same as I peel away the layers of non-IPF content and move it to my the new site. But nothing will be lost--the old site will remain until everything is finished (and probably thereafter). My email address for now will remain the same, although I will be adding addresses linked to the new site. And you can expect more frequent updates to my personal site, as I get the chance to visit it and pull out what goes over to the new one. So stay tuned. It's a lot of work, but I hope it will help those who just don't have the time nor the inclination to contemplate the reality of being sick--that we as patients are canaries in a coal mine. When the country gets a sniffle, we get sick(er).
MEDICAL NEWS and VIEWS
Anyway, having abandoned my pre-New Year's Resolution to keep things upbeat--who ever heard of a pre-New Year's Resolution anyway?--let's talk, shall we? First off, while I've been reluctant to mention it due to a superstition about newly transplanted patients, Trey Schwab finally received a double-lung transplant at the University of Wisconsin. Trey's experience has not been without serious difficulties, however. First, he apparently received lungs that were reported to have been outside of the donor's body for 8 hours, which if true, would make them possibly the "oldest" lungs ever heard used for a transplant. Trey then suffered a usually fatal pulmonary embolism--just by standing up--and following that a usually fatal cardiac arrest. Amazingly, his surgeon, Dr. Love, was near his room when it happened and was able to immediately move Trey into the operating room, where they re-opened his chest and rectified the problem. Initially in critical condition, he has since been upgraded to serious and seems to be recovering. The explanation for his clot was that he apparently had an allergic reaction to Heparin, a common blood thinner. I was given Coumadin after my surgery, but used Heparin for months afterwards to clean and flush my Hickman Catheter. It never occurred to me that I might be allergic to them, and I don't even know if I was tested for it, but I imagine that the University of Wisconsin will be testing its transplant candidates for it from now on. Why is it that the most visible patients--those who aren't former Presidents and current Vice-Presidents, that is--always seem to have trouble with major surgery?
Anyway, we still have Rachael over in England who has now turned sixteen, so she can finally see a Specialist. Formerly hospitalized at Manchester Children's Hospital in England, Rach has been diagnosed with IPF, which makes her the youngest IPF patient I've ever met. While at Manchester, she was placed in a Cystic Fibrosis ward where she was exposed to and contracted a wicked pseudomonas infection along with a couple of other bugs. Oral CIPRO was tried but failed to help. Even though the pathogen had colonized, her Specialist now tells her that it seems to be running its course, whatever that means. Fortunately, a local newspaper writer featured Rachael in what she felt was an embarrassing article but which has generated a terrific amount of publicity, and should help her immensely. She's a terrific girl and I admire her greatly. UPDATE--You can see a recent picture of Rachael here.
There are some other notable events to talk about. Joe Stendig received a single-lung transplant for IPF at University Hospital in San Antonio, TX at the age of 75. In so doing, Joe showed that life doesn't have to be pro-rated according to age, especially apt considering the multitude of factors other than age that cost the lives of eligible transplant candidates every day. It's not all about the organ shortage, you know--it's as much about hospitals moderating risk, a government unwilling to force doctors to publish their performance records, and a failure to adopt presumed consent on a national level. But even so, there have also been other encouraging developments--Dan Roy received a single-lung transplant for IPF at INOVA Fairfax a few months or so ago. These are not easy accomplishments. Unfortunately, they are dwarfed every day by far less positive events.
These past months I've met several new IPF patients--many from the UK. To them and every other patient I meet I say the same thing--hang in there, learn all you can, get the services of the best talent possible, and do everything necessary in an orderly but flexible manner. If you do, help should come your way. Buddhists say that if you truly need something, it will eventually come to you. What's important is to believe in the possibility. There are many variables, of course, but one fact is clear--lung transplantation is the only effective treatment currently available for IPF. While this might seem like a serious situation that merits careful consideration before taking action, it's much more dangerous to delay the pursuit of a transplant if you are eligible for one.
In my case--for those who may be interested in the details--I am 6 and 3/4 years out from a double-lung transplant for familial IPF, but during the last 2-3 years have been exhibiting a slow but steady decline in my PFT test results, specifically in my FEV1 numbers. Although my FEV1/FVC ratio has been consistently above predicted, my individual FVC and FEV1 results have been down, which unfortunately puts me in what I call a category of suspicion--that I am coming down with Bronchiolitis Obliterans Syndrome (BOS), a.k.a. chronic rejection. However, to me and my local pulmonologist, the possibility existed that my declining PFT test results were attributable to the weight I have gained over the time in question. Yet in mid-summer, I posted an FEV1 value of 2.98 liters while at a clinic down at Hopkins, which resulted in a very emotional visit for all parties involved. Dr. Orens looked down at the floor as he described four or five treatment options that are center-specific and have never been duplicated, which tells me that they basically don't work. Sadly, Judy cried throughout the clinic. We finally decided to wait for me to lose some weight and then re-test. A month or so later, after losing ten pounds, test results at the office of Dr. Meyer, my local pulmonologist, showed a modest improvement of 3.09. He felt optimistic about it, so we decided to continue this approach. Whether or not it is a temporary improvement borne of the knowledge I've obtained by testing at home with my new MicroMedical Micro Spirometer that I bought from Bayview Medical for $365 at the suggestion of Rick Allison, only time will tell.
A relatively new feature I've added to the site is a page titled, "Four Generations of The Stevens Family", where you can see pictures of my late Grandmother Ruby "Nana" (Travis) Stevens, her son (my Dad), the late Arthur J. Stevens, Jr., my two cousins on the Stevens side, Cindy and Sue (formerly Kampersal), and their first two children, Jason and Jennifer. The first two shots show three members of the Clan spanning four generations sitting on a couch, taken the last time I saw my Grandmother alive, back in late 1979 or early 1980. To see this piece of history, click here.
I must apologize to my mother's family for having removed the picture of my Mom, my Uncle George, my Grandfather, some Agoliati's and other family members sitting on the ground sorting and bagging potatoes on the Guglielmetti family farm in Durham, CT , taken back in what looks like the late 1930's or early 1940's. You can still see it by clicking here. We were--or soon would be--in World War II, but a primary distinction existed between then and now--we did not wage war for war's sake, and up until we were attacked at Pearl Harbor, we were reluctant participants. It seemed the same this time, too, including perhaps Roosevelt's possible foreknowledge of the possibility of an attack, until it became obvious--to me, anyway--that this was something more, um, personal. As a Buddhist friend once told me, there can be no peace without until there is peace within. I also apologize to my Mom's family for taking down another historic photograph from the Guglielmetti family archives taken in 1949 that can be seen here.
On my father's side (from which I inherited the IPF gene), I'm still looking for genealogical information on my grandmother, Ruby Estelle (Travis) Stevens, born April 5, 1890 and in particular her husband, Arthur John Stevens, both from Holliston, MA. Her mother was Elizabeth Francis (Gage) Travis, whose mother was Adelaide Sofia (Farrington) Gage. I placed a query up on the Middlesex County genealogical survey, but nothing yet (it's been about 5 minutes). Given that IPF is (in my opinion) familial, I'm more interested in the old family tree than I used to be. The Stevens side seems to have the IPF bug, but more information exists about the Travis (a.k.a. Travers) side, which is interesting but not that potentially helpful, since we think my grandmother was adopted. Email me if you find this page and have any information.
GENERAL PERSONAL INFO
The Scar is something you have to take in a little at a time, but you can still see it here. It looks worse than it felt at any time. Talks continue on whether or not to reimburse donor families for their loved one's organs. I support this concept wholeheartedly, but why wouldn't I? It's the A.M.A. that has to decide. Not me and not you. In my mind, it's a no-brainer, but having a terminal illness or losing a loved one can never be made into a win-win situation. But one must try to keep things in perspective. What isn't helping anyone is the endless debate that simply prolongs the problem. Make a decision and see what happens. Do something!
Fortunately or unfortunately, life moves along quite well without us. We may be lucky enough to see some of it or even participate, while others do not for whatever reason. One thing you learn through the life-altering experience of having a terminal illness is that life, in all of its forms, is precious. So it is with our two youngest family members, Zero and Coco (who can be seen here and here). Originally running wild at a nearby Auto Auction, we found them at the Francisvale Home for Smaller Animals in the months that followed Ruby's passing (see below), and they've brightened our lives ever since. Many people can't see the resemblance, but they're related--we just don't know exactly how. (Thanks to Dee and Glenn for the photos.)
Sparks' IPF Chat Room is apparently no longer with us, but a similar facility is--the HuffnPuff Forum. Sandi's NoAirToGo Message Forum is apparently gone as well last I checked, what does remain is Sandi's Chat Room and the Cheshire Chronic Lung Chat Room that I link to in the menu section over on the left. While my participation has been limited if not nonexistent in recent years, I owe a lot to Sparks and the group he sponsored and hope that he and Sandi are well. If money and energy were not so limited for those that work hard to provide help for patients with these diseases, problems such as this would not exist. But we need bombs, not health and human services, and apparently more and more of them. It's obvious to me--all war all the time. What the world has come to--global conflict as a pimp for the greedy. Somebody please prove to me that Osama is NOT going to a Dialysis Lab in Florida while safely harbored in the Witness Protection Program (if you can).
A recent addition to the site is is a link over on the left to the Vanderbilt IPF Fund website presented by Dr. Ron Wallace and Kori Johansen , two of the most important, courageous, and selfless people I've ever met, and through whose efforts many IPF patients--and especially their family members--may soon benefit. I urge you to click here and read about the latest discoveries made by the research team headed by Dr. Jim Loyd at Vanderbilt, the details of whcih were just published in the May 1st issue of American Journal of Respiratory and Critical Care Medicine, which is available online via the American Thoracic Society. You can read the abstract by clicking here.
On the topic of survival in general and being a non-victim in particular, many books have captured my imagination lately. I have found much of interest in Matt Ridley's book, "Genome ". After reading the results of several studies of other disease incidence and survival trends, it seems that a key factor in successfully making it through a challenge as great as that presented by IPF--as only one example--is the patient's ability to control their life, their disease, and their care. Another book that offers meaning to our understanding of life but on a microscopic level is "The Fifth Miracle", by Paul Davies. A few others I think you will find interesting (if not indispensible) are Jerome Groopman's true account of his personal experiences both good and bad in "Second Opinions", James Le Fanu's excellent book, "The Rise and Fall of Modern Medicine", "Making Miracles Happen" by Gregory W. Smith and Steven Naifeh, Sam Shem's book, "The House of God", "Armies of Pestilence" (I forget who wrote it at the moment), Paul Ewald's book, "The Evolution of Infectious Disease" (which I have not yet read but have read much about), Norman Cantor's book, "In the Wake of the Plague: The Black Death and the World it Made", and finally Jared Diamond's Pulitzer Prize-winning book, "Guns, Germs, and Steel: The Fates of Human Societies".
A terse inquisitor--as in
no introduction, personal information or real name provided--recently asked
me via email why I don't mention on my website all of the public and
private researchers working on Familial IPF? The latest information
I have is that the real movers and shakers of Familial IPF study are the
Institute of Health (NIH), in Bethesda, MD, where they do most of the
funding and also study patients with Rheumatoid Arthritis and IPF,
University (whose program was formerly located at the University
of Iowa), and Vanderbilt University, about which you will find contact
information below for Dr. Jim Loyd, who runs their FamiliaI IPF study
doctor down at Johns Hopkins, Dr. Jonathan Orens, speaks very highly of
| Dr James E. Loyd, Professor of Allergy
Pulmonary & Critical Care Medicine
Vanderbilt Medical Center North, Room T1219
Nashville, TN 37232
Phone: 615-322-2386 Fax: 615-343-1809
I've also been asked from time to time where the IPF Questionnaire Forms I've been accumulating here for several years get sent. I send them all to the NIH and also to Vanderbilt. I gather data until I have what I consider a significant amount of it, and then send it in a batch. How this came about is that I met Dr. Ivan Rosas from the NIH during a visit to Johns Hopkins in the summer of 1999, and discussed the prospect of working together. About three months later, I sent the first 45 Questionnaire Forms to Dr. Rosas, who has since incorporated them into the database for their Familial IPF study. Since then we have established a more formal association, and besides submitting the forms, I've referred patients and family members to him for inclusion in his studies as well as other services.
So, if you have information that you have either already submitted or are considering submitting, now you know where it did (or will) go. It is my sincere goal to help in any way possible patients--and their family members--with this disease, and will continue to do so.
NOTE: If you want to email me with ideas, questions or comments, please reveal your identity. I know that AOL users in particular like to dash off unsigned emails, but if you want something or need information, please identify yourself--a simple "hello" or signature block will work. It's a big world out there--I like to know who I am talking to.
We still remember "Sparks", a.k.a., Mike Warden, sadly departed and greatly missed (who can be seen here). Widely known among veteran IPFers, Mike was the prime mover behind the Huff'nPuff Live Chat Room, which met weekly and was attended by members from around the world. After a series of commercial chat facility problems it was ultimately retired, later to be replaced by the now-current HuffnPuff Message Forum. While the new forum doesn't have quite the live presence of the old Chat Room, it provides critical support for hundreds of family members and patients who suffer from serious lung disease. Sadly, some of us who knew Sparks joined the new forum looking for him, but as in my case, were not able to find him. He was, however, apparently still available via email--helping any patient who contacted him. Now, unfortunately, he's no longer available, having suddenly passed away on the evening of January 29, 2005. It was and is a shock to many, and his loss will be felt by many.
Sparks was an invaluable collaborator and friend, with a combative yet humorous style that is absolutely required to fight this disease. Back in 1995 when I first met him, he and several other members of the group had already been sick for over 10 years (Happy Heart among them). By now, he would have been sick for nearly 19 years, a genuine testament to his strength of character and generosity of personality. I'd like to thank Lanny Rogers for telling me about Mike's passing, and wish him, Dick Lacasse, and Shelley Robinson--wherever she is--the best. I also want to offer my sincere sympathy to Mike's family and friends. A true giant has moved on to his ultimate destination. May he rest in peace.
Sad News. Roberto Anzeck, seen here in a picture I took in mid-August of 1997, suddenly passed away due to an as-yet unexplained cardiac event in the first week of May, 2004, while attending a transplant conference in California. He will be sorely missed.Judy and I wish to express our sincere sympathies to his family and friends, as well as to the patients and family members Roberto touched during his professional career and personal life. He was my post-transplant coordinator at the University of Maryland, where I received my double-lung transplant in June of 1997. But he was more than that. As a Physician's Assistant, he was a critical part of what makes a great transplant team successful, as Maryland's was and Columbia Presbyterian's is. Along with Sheila Young, my pre-transplant coordinator at UMMC, Roberto was half of the best transplant coordination team I ever met--no others have come close. I can't begin to explain how, for example, in a short telephone call he both comforted and encouraged Judy when I was dying. Or how important to me our conversations were in his capacity as both a medical professional and a friend. We shared a love of MINOX cameras, and incredibly, he's one of few people to whom I've lent a book who actually returned it. It was titled "And The Waters Turned To Blood" by Rodney Barker, the story of Pfiesteria piscicida, a dangerous one-celled organism found in the brackish waters of the Chesapeake where Roberto loved to fish. He was special in so many ways that defy description, not just because he was in part responsible for saving dozens of lives of patients who, along with his family and friends, now grieve his loss. To them I say, Roberto was a gift, the like of which we will not soon see again.
September 23, 2002 was a sad day for me and many others--Dr. William Figueroa, my principal Pulmonologist prior to my lung transplant, passed away from what was, as he described it, a finer form of ALS, also known as Lou Gehrig's Disease (Lou Gehrig had the more coarse form of the disease, as Dr. Figueroa explained it). I didn't have a feel for the seriousness of his condition until one day, during a quarterly clinic in which I expressed reluctance about and fear of a lung transplant, he said, "at least they can transplant a lung--they can't transplant a central nervous system". It's both tragic and ironic that now, some 7 years later, I'm here and he's not. In his memory, I've created a page that basically consists of the obituary that appeared in the Philadelphia Inquirer, along with the picture I took of him in his office some 5 years ago, which you can see here. I can't express how empty the world feels without his good humor and great compassion. You can still read about him and the role he played in my life on the page describing my experience with IPF, but unfortunately, you can't see the sparkle in his eyes nor hear the enthusiasm in his voice that signalled his presence. Judy and I wish to convey our sympathy to Dr. Figueroa's family, friends, and co-workers (many of whom I still see on a regular basis), and wish that the world weren't as short of men as important and purely human as he was. The man known locally as "The Father Of Pulmonary Rehabilitation" will not be forgotten.
We continue to remember Joey Arnold through a special memorial page, which you can see by clicking here. Joe was from Brisbane, Australia, and a man among men who had IPF but could not get a transplant, and was to me a veritable lifeline during my most difficult times with the disease. I would stay up at night for hours chatting with Joey over ICQ, sharing observations on life and the pain-in-the-ass that is IPF. I hear regularly from Joe's lovely wife Denise, who has mastered email and ICQ and has picked up where Joe left off on Joe's computer. I miss talking to their ISP, Keith Antoine, who was very good to Joey, but seems to have dropped out of sight since a business merger. The only shortcoming I can see in countries such as Australia--and Canada--that have socialized medicine, is that while the cost of an expensive transplant is taken care of, all you seem to be able to get in the way of oxygen are concentrators, and the wait for the transplant may take even longer to get than it does here. Neither of these conditions favor the IPF patient.
As I've said, the Millenium thing just did not work out. We lost Andrea Aulbert on July 2, 2000 to a brain infection after her recent lung re-transplantation for BAC at UAB. I felt a special kinship with Andrea, for I, too, had BAC and watched with concern her progress as her disease recurred, as sadly many BAC patients have since their transplantation down at UAB. That she received another chance for a transplant speaks to the dedication of the UAB staff, who took special safeguards during the procedure to ensure she was cancer-free after surgery. Andrea had more than her share of battles during these last 2-3 years for a young woman of 33, but faced them with a courage and strength that was inspiring to all who knew her. That she leaves us fighting to the end the unrelenting cancer that stalked her is a tragedy we who survive her will have to learn to accept. Her war is over, but our sadness endures. Our greatest sympathies and condolences go out to Andrea's family and friends in this time of sudden loss, sadness and reflection.
It's now well past the time when my father died from complications due to IPF 29 years ago in July of 1971. He and I both had IPF as well as BAC, only his cancer metastasized to his left adrenal gland--mine only showed up as a spot. But in a very short time, I would have gone out the same way he did--exactly. They didn't have lung transplants back in 1971, but they do now and I'm here because of it. Somehow I hadn't felt right about putting Dad's picture up here up until this year, but I started thinking that it was about time, so you can see him by clicking here--Dr. Arthur J. (Steve) Stevens, Jr. , from Holliston, MA--a pHd in Chemistry with a minor in Physics from M.I.T., and a victim of IPF at the age of 52. Hang in there, Pop--we love you and miss you every day.
While I hated to take down the picture of my Mom at the 1943 Christmas Party of the Electronics Division of Remington Rand in Middletown, CT (taken a month before my Dad went to work there), you can still see it by clicking here. The picture itself was probably taken by Phil Rand. In the picture, to the right of my Mom, who is sitting in front of the left side of the rear door, is James J. Lamb, inventor of the Lamb Noise Silencer . Another illuminary of the time is George Grammar, W1DF , shown with glasses at the outside of the right table, three seats from the back. Both are well known from the early days of the Amateur Radio Relay League (ARRL), and my Mom was Lamb's secretary. She worked outside his office alongside George Grammar when my Dad first arrived, fresh out of M.I.T., specifically to develop the Two-Sided Mosaic for use in what eventually became an improved version of the Ikonoscope--an early version of the Cathode Ray Tube (CRT)--first used in Radar displays and later in Television sets. We think there is a patent for it with his name on it, but have yet to find it.
And as November approaches, we remember our sweet dog Ruby, who passed away at 13+ years of age on November 3, 2000. She was the rudder that steered the ship. Unfortunately, she developed osteo-carcinoma of the jaw, and after the biopsy it was quick--three weeks, actually, from diagnosis to death. I don't think I've ever had to do anything more difficult than taking her to the Vet for the last time. I honestly think that when I was sick with IPF, if I had been a dog and Ruby had been my owner, she would have probably put me to sleep about a month before I was transplanted. But she would have done it in good conscience and with love, as we did with her. For like her, I was a mess and not getting better. But somewhat impulsively, now we have not only a new six-month old puppy, but his SISTER, too! His name is Zero, and her name is Coco. We adopted both of them from a local shelter about a month apart, and together they are a delight to watch and be with (even if Zero is scared to death of me).
And we still remember Judy's Dad, Patrick Rolli, who was stricken on December 26th, 1999 at approximately 3:50 PM by a sudden heart attack. A complete surprise to everybody, and while never a blessing, in many ways Pat (and the family) was spared what can be the agony of a protracted illness. Each year, Tomato Season in the spring, Father's Day, and Christmas bring sad yet proud memories of a man that truly did it his way. We salute you Pat, and bid you well on your long journey into the night. See you again someday, I hope.
Within the last couple of years, we of the local Novell of Philadelphia community lost Cody Bell, Bettty Nocco, and Betty Wachman. As an IPF and cancer (BAC) survivor myself, I have strong feelings about the proper approach to cancer treatment and the medical community's commitment to curing and/or properly treating this unusually pervasive disease. The paranoid side of me says that cancer study and treatment is such a heavy income generator that they'll never cure it. Another paranoid vision says it may be the best friend an under-designed Social Security System ever had (thanks, Rat). And then I think--hey, maybe this really IS a difficult disease to cure. What, difficult? AIDS is difficult. Virus-induced pandemics that jump species are difficult. Flesh-eating viruses that have an incubation period of 24-48 hours in an era of international airline travel are difficult. Curing cancer should be EASY! In any case, the proper approach to surviving this disease seems to be getting the best talent the medical community has to offer, and continually challenging them to explore all avenues of treatment available. As it was carefully explained to me upon the discovery of BAC in my explanted lungs, "Oncology is a study of probabilities". Unfortunately, that is still too true. You can always see the picture of Cody that was up here for over two months, by clicking here. Our continued sympathies to the Bell, Nocco, and Wachman families.
Life moves inexorably forward, as you know. I've added several new pages, a Links list and some graphics to www.newlungs.com. In addition, I corrected some more links here--the IPFERs eGroup , now on Yahoo, and the LungTransplant eGroup. This one was in danger of being eliminated by Yahoo if it didn't see more traffic, but for now that threat seems to have passed. Both it and the IPFERs list can be accessed from the menu bar over on the left under OTHER LINKS. Hopefully they will help someone. Also, I've been banging on Yahoo about listing my site in it's general directory, but so far no word.
Moving on, as Sparks' original live chat room is down, but replaced by the HuffnPuff Message Forum. There is also ChronicLungChat, which stands for the Cheshire Medical Chronic Lung Disease chat room, and while it is less specific than HuffnPuff, it's valuable as a lung disease-related forum in which to listen or talk (or just be). You can also contact other lung disease patients by reading my Guestbook (see below).
Anyway, another source of information for family or patients with a life-altering disease is Med Help International . Somehow, they're tied in with Medsite, who notified me on July 27, 1998 that this site was rated Very Goodfor the General Public and Researchers. Thanks to MedSite for the nice mention.
Above all, register for and use Medscape to get up-to-date information from their Transplantation and Pulmonary Medicine pages for the latest breakthroughs and advances in research and treatment. It's now run by WebMD and it's the BEST.
Back in October (1999) I tried out a new exercise device called the CHI Machine, an Asian invention that claims to increase oxygenation through the so-called "Goldfish Method" I had such a moving experience (pun intended), that I bought one after just one 5-minute session. While simultaneously monitoring myself with my Healthdyne 950 Oximeter, I saw my heart rate go up 8-10 bpm and my oxygen saturation level go up 2-3 points--this coincided exactly with the results claimed by the manufacturer. After I stopped, my heart rate plummeted to 10 points below my normal resting heart rate. And best of all, aside from feeling really relaxed, my numbed-feet (steroid) syndrome was completely gone! I'll present more information soon, but thought I'd better get something up here to explain all the ICQ messages I sent out (sorry).
I've been reading a lot of testimonials from Cystic Fibrosis patients about the CHI Machine, and apparently one of the strengths of the machine is that in addition to its low impact, easy usage, and increased oxygenation benefits, it stimulates the lymph system, and is perfect for disabled patients. You can see some of these testimonials yourself by looking at the results of a search I made on Google by clicking here. It was impressive enough that I persuaded Judy to become a distributor through her company, JS Comm/Design. See a short description and online order form by clicking here.
Another source of help is drugstore.com, whose Logo and link button you see over on the left, and whose Search Box you see at the bottom of this page. Now it's possible to order online supplies like Ayr saline gel and spray, N-Acetyl Cysteine and CoQ10, whey powder protein supplement, and so on. For example, if you need Ayr saline spray, go to the Search Box at the bottom of this page, type "ayr" in the box and hit "Go". The site will come up and automatically find all of the Ayr products they carry. Amazingly it works. Except for Durable Medical Equipment (DME) such as oximeters and Oximizer nasal cannulas (which I'm trying to get them to carry), I've found nearly everything I used to have to go to three stores to get, and let me tell you that was tough as I got sicker and sicker. Whether this helps anybody or not remains to be seen, but it seems like a good idea so I'm doing it. The prices are decent and they also have prescription meds with free shipping. Take a look and let me know how it works for you. Judy ordered a prescription med and it came in at half the price quoted by my mail-order pharmacy, plus it's easier than going to a CVS, where people all around you have a cold or a cough.
MISCELLANEOUS MEDICAL NEWS
A new and exciting development that came to my attention not long ago is a press release about recent developments in anti-rejection medications-- hybrid antibodies. Very inspiring for present and future transplant recipients--click here to see it. There are a few other (older) press releases on the link list at the bottom of the "Living With IPF" page--see below.
I've also added a paper from Science News on hu5C8, an altered antibody manufactured by Biogen that eliminates rejection of a foreign organ caused by molecule CD154. There's a link to it over on the left, or you can read it by clicking here. Very interesting and encouraging, but I would guess it will be 5 years before we see it, if ever. Can't sell expensive anti-rejection meds then, you know.
Now that I'm Year Five, I'm more and more interested in various failure modes of lung transplantation, which I suppose was initially fueled by reading the BAC paper out of UAB (see below). Now, as I contemplate the true meaning of the phrase, "Aspergillus is ubiquitous" (as Roberto used to say at UMMC), I find I have a heightened awareness of the microscopic enemies I have out there in the "real" world. I mean, being paranoid about something you can't see is nothing new, right? So I've dragged an April, 1998 paper on the topic over here from the excellent UK-based Aspergillus site, which you can visit by clicking here. (Thanks, Sandi--I think.) The paper I snagged is reproduced for your edification here.
Important Info: I mention on the My Transplant page that I had BAC underlying my IPF, which was determined AFTER my transplant. It should be said that while up until recently lung transplants were not generally available to BAC patients--and indeed, had mine been known beforehand, such would not have been available to me--at one time there was a transplant center doing them, namely The University of Alabama. They had been doing transplants on patients with Bronchioloalveolar Carcinoma for a few years, and while over a year ago I heard they were having nearly an 80% success rate (which is excellent by any standard), more recent data as of April, 1999 reports that number as being 43%. (Read the UAB paper on BAC here.) Apparently, four out of seven patients have had a recurrence of the disease within 10 to 48 months after transplantation. Interestingly, DNA analysis shows that the recurring disease is exactly the same as the disease that was removed, and that the immune suppression required for graft survival didn't accelerate the onset of the disease. In fact, evidence points to a mechanism whereby dormant cancer cells migrate to other parts of the body (or hide in the windpipe area), then find their way back to the lungs over time and start over. Scary stuff--needless to say, this is not terrific news. I've subsequently been informed that they are re-evaluating their methodology in light of this development. I have received many emails about this from people both praising UAB's success and others asking for such a facility. If you are in need, follow the link above and see who you can contact. Also, I heard that Johns Hopkins has recently been accepting BAC patients for evaluation, but as I understand it, they are currently waiting for the result of UAB's re-evaluation before deciding on a course of action. At one time, I was informed that the non-transplantable strain of BAC had been successfully isolated and identified. I have not yet heard of or seen any further mention of this. More as I learn it.
MISCELLANEOUS MEDICAL INFO
I've added a couple more pictures/logos to the Living With O2 section, which deals with the basic components and fundamentals you need to use supplemental oxygen. This is a subject usually learned the hard way--by teaching yourself (I had to). I hope it helps. Meds Note: Now you can get most of these products at drugstore.com, as explained above. And now that the IPF Questionnaire Form is finished, I'm starting to receive more responses (nearly a dozen). As I said before, what I'd like to do is amass data that when compiled, mght inspire research that perhaps would not occur otherwise. In any case, as we as patients represent largely the only hope we have, I'm doing it. So, if you have IPF, or have it in your family, please take a look at the form and fill it out--thanks. (You can find a link to it over there on the left under IPF Studies, of which more are planned.)
And let's not forget my favorite topic--insurance. I went for almost two years without any such babble, but that's because I didn't know where I'd end up. I finally know how little of my piddling $500 annual prescription drug cap is left after my first 90-day shipment, even after the "carve-out"--their term--of the two most expensive (and important) anti-rejection/immune-suppression drugs I take. Twelve bucks. Basically, the three remaining quarterly shipments each year are ON ME. So in order to shop around (fixed-income guy that I am), it took me two full weeks to find out the actual price that was paid for each the meds I received, and it took far too many calls and discussions with "customer service" at Merck-Medco. Anybody that doesn't think that being seriously ill is a full-time job hasn't had to deal with insurance companies over an extended period of time. Can I get a witness?
Meds Note: If you're on Neoral, get two separate prescriptions--one for the 100mg. size and one for the 25mg. size, and split them down the middle. Otherwise you can't adjust your dosage and you're locked in to whatever they sent you for up to 90 days. Also, have your meds prescriptions specified to the absolute MAX --apparently there is a difference between "Doctor's Style" and "Hospital Style" in the minds of some pharmacists. I kid you not--this came directly from the mouth of Merck-Medco, the bane of mail-order pharmacy subscribers.
Interesting Info: In addition to other musical associations I had in my younger days (of which two are reported below), I also had the priviledge of playing with Luther Allison out in the midwest one entire summer between my sophomore and junior years in college--at the University of Rochester--in1970. While it was a rocky situation in that he never rehearsed nor hired a sax player--ever heard a blues band with one horn, and a trumpet to boot?--I got a lot out of it. Luther passed away in August, 1997 from complications due to lung cancer (two months after my transplant). He was, if I'm not mistaken, 57. His cancer was discovered unexpectedly, and by the time he was able to receive treatment, it had already spread to his brain. He received massive doses of radiation in Madison, WI (where we had many memorable gigs together), but passed on a month or so after his diagnosis. He is genuinely missed, as are so many other of our blues heroes, but especially so as he was just becoming better recognized nationally as the selfless and talented entertainer that he was.
But more on topic, his passing is all the more reason to BAN CIGARETTE SMOKING IN NIGHTCLUBS. The people deserve a great performance--not a performer's life. God knows it was probably a factor in my own medical history. Enough said. Thanks, Luther, for the shot. I hope to jam with you again someday. Typical Musician's Experience: I remember back when his son 'Nard (Bernard) was about four years old, Luther's organist (Paul White) and bass player (Randy Taylor) were driving the band's rented van around with Nard in the back in the caged-in area and got stopped by the Peoria Police. Being white guys, and 'Nard being a little black boy, the Police thought they had kidnapped the kid (go figure). So they searched the car, found some weed and busted them straightaway. American justice--hard on a black man and hard on a black man's friend. Anyway, now Nard (a.k.a. Bernard Allison) has albums of his own and he's an absolute killer--I just hope he doesn't smoke. (I have three of his CD's--excellent.)
Speaking of musical experiences, the picture that was up here a year or so ago of me playing with The Trammps back in 1975 is still on the site, right here. And to see a B&W picture--no pun intended--of me taking a solo wth them in Europe back then, click here. You can also see a picture (also B&W) of me in 1967 with my first band, The Kontendors, by clicking here. Kind of ironic that a trumpet player would come down with a life-shortening lung disease twenty years later, isn't it? No kidding.
New Idea! And it's mine! Well, OK, maybe not exclusively mine (if you consider Presumed Consent to be the same thing), but I don't hear anybody else trumpeting it, so I'm claiming it. Thanks to an email I received from Vicki, a very nice lady, I thought of a concept that while it has virtually no chance of passing into law right now, might possibly be a model for the future. Remember the Military Draft? Back during the Vietnam War era, it was possibly the single most important life-shaping factor in American culture. Entire lives--mine, for example--were reorganized around the draft. Well, I propose a National Organ Draft!I know what you're going to say--religious convictions, medical complications, etc. Well, what did we do back in the day? We had deferments. So, if you're against the idea, you apply for a deferment, but the default condition is that you're a donor. And aside from the obvious medical and social benefits this could have, I believe it could also foster in us a new view for living as a single community of life, rather than as various and disparate communities of interest. Draft for life, not for war! The other part of this is to make the desire of the donor irreversible by their family. News Note: It's now fairly common knowledge that in many European countries they have a system of Presumed Consent, which is similar in that you have to "opt out" of the program, or you're automatically a donor. And in those countries, transplants are up 30% over countries like ours without such a system. So, need an organ? How's your Flemish? What's the current exchange rate in Belgium, anyway?
WILD HAIRS UP THE OLD ARSE
Play to Win, Don't Play Not To Lose. I want to continue to emphasize that in certain high-profile situations, we can often become more concerned with failing than with winning . It's only human, but it can be disastrous in the wrong setting. So, what I want to communicate to the largest, most highly regarded (translate "image conscious") institutions in the medical community: if you are driven by performance statistics and other measures of success (perhaps even money), you may find that you are playing not to lose, and yourpatients will suffer . This syndrome is no more apparent than in certain sectors of the transplant community--high-risk patients are either referred out at best, or judged unqualified, passed over or out-waited at worst, until they either go elsewhere or die. If you think that this does not occur, and you need a life-giving transplant, then you are possibly at risk. As a patient, you can tell when this is happening. A wise man once said, "Remember--if the streets are wet in the morning, it rained the night before". If you are a patient and you feel like you're getting jerked around, chances are very good that you ARE getting jerked around. In that case, run (don't walk) to a different (hopefully better) doctor and/or transplant center. I attribute my own success to two such changes in my choice of care--my local pulmonologist, and my transplant center. Had I not changed, chances are more than very good that I would not be here to tell you about it.
I am attempting to put together a list of actual Open Lung Biopsies Gone Bad, with the permission of the families involved, of course. My intention is to post it primarily as a Memorial to those unfortunate patients that have succumbed to it, but also as a serious Warning to other patients and Reminder to the medical establishment of its dangers. I personally know of at least three and possibly more cases of Open Lung Biopsies that have resulted in the passing of the patient within a month of the procedure, which is not only criminally incompetent but tragically unnecessary. It constitutes a CYA move of the slimiest type that shows clearly that the priorities of the medical community are aligned along the lines of playing not to lose, rather than playing to win. The Patient is the Priority, Stupid.
Therefore, if you think you may have IPF, please read the next to most recent update at the end of my personal transplant story, which deals with the Open Lung Biopsy, and why I think it is a shameful wrong that is too often perpetrated on IPF patients that are simply following their doctor's orders trying to get an "official" diagnosis. This act of what I feel borders on a supreme indifference to the well-being of the patient can, as I say, often result in death. Needless to say, this absolutely sucks when all you're trying to do is get diagnosed. The disease is supposed to be fatal, not the diagnosis! And guess what? It doesn't have to be that way--the VATS (Video-Assisted Thoracic Surgery) method, or what I call a Video Thoracoscopy, is much less invasive and in my thoroughly unbiased (and unprofessional) opinion, completely adequate. You can read about this by clicking here and scrolling down to the bottom of the page--I happen to think that it's very important (call it Life and Death, if you like). Let me say, however, that I am not a doctor--take that for what it's worth.
A CHILLING STATISTIC: Remember that U.S. News and World Report TELLS YOU that REPUTATION comprises 48% of the formula they use for rating the "Top Hospitals in the United States". Obviously, they aren't listening to families that, according to a December, 1999 study by the Institute of Medicine, lose over 98,000 relatives each year to surgical errors, almost all of which go unreported. Here's a major wake-up call-- hospital error is (conservatively estimated as) the eighth leading cause of death in the USA. (Other estimates of the number of error-related deaths run as high as 130,000 per year.)
A LAST REMINDER
I continue to try to raise patient awareness of political and professional agendas that can often play as much or more of a role in their well-being than their actual physical condition. Fortunately, when I needed it most, I found at the University of Maryland a team of partners that played to win, and that attitude saved my life. I love them all, and I pray that their winning spirit will sustain them wherever they practice. In fact, the principals from the UMMC lung transplant team-- Dr. Conte and Dr.Orens--have since moved to Johns Hopkins to give them a real lung transplant program, and hopefully get the institutional support they need and deserve. However, an editorial note--the lowest-paid employees in any organization are often the most important! But beyond that cryptic comment, let me say that talking to Dr. Orens--now Director of Transplant Pulmonology at JH--reveals that things are going well and getting better. Maybe there is a high-profile institution out there after all that can truly Play To Win.
At the first anniversary of the move my doctors made from UMMC to Johns Hopkins in August of 1998, they had done 39 lung transplants (as of 8/13/99--thanks, Anne). So if you think that the actual doctors and the program that they administer is not the core strength of a transplant center, think again. While in actuality a lot of that disparity has to do with the fact that almost all of the listed patients at UMMC came over to Hopkins to follow their doctors, that in itself says a lot about their trust and faith in people and not in institutions. That and the fact that before the move, the ratio was strongly in the other direction. Bet on talent, not reputation. Note--Dr. Sonnet, formerly at UMMC, is now at Columbia University. And while I like the Pulmonologist there, Dr. Britt, the current status of UMMC's lung transplant program is probably best characterized as being somewhat in question at the present time.
AND NOW, YOUR OFFICIAL INTRODUCTION:
You're here, and I'm getting used to it.Welcome to my homepage. I'm Roger Stevens, a.k.a. WA3FLE, ham radio operator, highly opinionated bastard, and as we used to say in the music business--lover of life as we know it here on Planet Earth. Click here to see a picture of my beautiful wife Judy (and moi) taken down in Cape May on our first transplant "anniversary" back in June of 1998. It's a meaningful reminder of everything we've been through during the last few years, especially the time we've had together since my transplant.
In any case, things here continue to change, as this is a Work In Progress. Right now I have sections on medical topics, amateur radio, music, and audio. The next few years look to be an interesting interface with the major insurance influences in my life, but more on that later. For the time being, however, my primary emphasis has been and will continue to be on IPF--Idiopathic Pulmonary Fibrosis, for all of you medical-acronym-challenged types out there--and tissue and organ donation and transplantation.
PLEASE SIGN MY GUESTBOOK (SEE BELOW) !!!
Medicine--IPF and Lung Transplantation
This is where you'll learn about my particular cross to bear--Idiopathic Pulmonary Fibrosis--and why you, too, should consider quitting smoking (whatever), keeping exotic birds, running an unclean humidifier, spreading asphalt, working with asbestos, or whatever else it is you do that might cause this rare but usually fatal lung disease. You know, it's the stuff they never tell you that will kill you. This is a life that you don't want. It might not get you, but it got me, and furthermore, it mostly hits between your 40's and your 60's, so although you may have been lucky up to now, there's no guarantee you'll stay lucky. So spend your money on vitamins--they're real expensive, and a lot less fun. BTW, "idiopathic" means "we don't know", so technically speaking, nobody knows exactly what causes this--yet. But from what we can tell, my father (Dr. Arthur J. Stevens, Jr.) died from this disease back in 1971, and I recently found out from his sister--my Aunt--Elinor Kampersal in Holliston, MA, that both my great-grandfather and great-great-grandfather died from lung disease, so cases of "Familial IPF" are much more common than originally thought. I know--I get email weekly from newly diagnosed patients that have an instance of it (or more!) in their family.
FOR A COMPLETE DESCRIPTION OF IPF , CLICK HERE .
Probably the best way to acquaint you with the harsh realities of IPF is to relate my own story (prior to my transplant), which you can access by clicking here. This is long and not very pretty (to read or to see--not many pictures), but has been amazingly tagged with a happy ending--my double-lung transplant at the University of Maryland in June of 1997, which you can read about by clicking here. This section has a lot of pictures!
For information on tissue and organ donation, click here .
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