It is with no small amount of regret that I am announcing the final issue of UpBeat, a newsletter for Heart and Lung Transplant recipients. I am happy, however, that the reason for cessation is so simple. Upbeat is fiscally out of money, and at present all concerned still have some semblance of their health. Obviously, the reason we have reached the financial edge is simply due to the many, many other sources of accurate transplantation information widely disseminated from other sources. In a way its a perfect ending. When the first issue of Upbeat appeared [look for it on Ebay (g)] in 1988 there were only something like maybe 3500 heart and lung recipients alive in the entire country. Now, in 2001, most people one meets on the street finally know the difference between a heart by-pass and a heart transplant.
On the matter of money and donations: In November we appealed for donations as usual. A few people, in almost all cases ~clockwork contributors, sent in donations. It is our intention to try and return all such contributions received after November 1, 2000 in full, if said person also made a donation in 1999. These refund checks will hopefully be mailed before the end of the month.
Generally the creation and maintenance of Upbeat has been very enjoyable. I must particularly thank Jody Roginson, now of Seattle, but way back a fellow worker with me in the City of Anaheim Golf Dept. As an aside, we left, and they disbanded the department!
Also the only printer we have ever used, Print N Save of Howell Ave. in Anaheim, has always understood our needs, limited resources, and the fact that basically we were donating a lot of time and cash ourselves in just trying to help a group of people who seemed to need more information than they were then receiving.
Our final issue is hopefully constructed of some of the more interesting and even humorous content over the years. Enjoy.
UPBEAT THROUGH THE YEARS
WHAT, ME WORRY?
Lately we have begun to realize that Upbeat seems to be maturing at about the rate the editors tenure as a transplant increases, and probably also as his prednisone has decreased. The contents now are more and more businesslike and no where near as inane and fun as some of the earlier issues. There are, however, many new readers and many of them are quite new to existence as Tx recipients. So in their interest we have delved into the archives of Upbeat for some of the better reading trash from earlier issues. Those of you who have previously read the material, or wonder why on earth yours truly would take Upbeat back to Weekly Reader, just relax, which is exactly why were doing it.
One thing that has slightly amused me about our condition since the very beginning has been the way the medicos flip Out the phrase Im sure we warned you there may be side effects, as if it will explain, if not cure, just about any of the uncomfortable sensations you are having - AND not to clutter up the medical record with that type of detail anymore, if you please, thank you! Of course, as we all know, the wording should be changed to There WILL BE absolutely the weirdest collection of feelings, events, and sensations you have ever had. They will cause pain, embarrassment, debilitation, and extreme worry, BUT dont tell us about them because we've never experienced them and cant change them anyway! With both of the above in mind, I thought we might take a look at some of the more noticeable side effects. Unfortunately no cure is offered.
Hearing your local FM elevator music station clearly in each ear with no radio.
Kneeling down to get the last can of soda from under the sink - never to rise again.
Wondering whether to shave your forehead or not.
Setting a new definition for oily hair - Anything more than 24 hours without a shampoo and it looks like its been soaked in Mobil 1."
Tying perfect pretzels by just holding the dough in one hand and letting it cramp up.
Being the only one in the house to catch cold, last week, this week, and with a reservation for next week.
Discovering that for some reason the points of all your shirt collars now rest on the top of your shoulders.
Being convinced that the machine during surgery doesnt cause memory loss, but not being able to remember who said it, when, where, or what your oldest boys name is.
Discovering that 95% of your body weight has relocated to your rear end when seated and defies further movement, especially on rubber legs.
Upon failure of the above attempt, learning that full-blown sleep can be achieved from said position in 10 seconds and last for at least an hour.
Awakening in the middle of the night in great pain to find that the cramp in your left leg is causing it to attempt to stick its big toe into your right ear.
The list goes on, unfortunately. Whats your dis-favorite? We havent exhausted them here.
PVCS October 1989
Made my monthly call to the Transplants Will Rogers. This fellow apparently would have to really work not to create a good story out of our unique life situation. Seems this month he passed out - cold. Not funny at all as it very likely could have been full arrest. Wife starts CPR, while very mature, but obviously very young son calls 911.
911 - What seems to be the problem?
Boy - "I think Dads having a seizure.
911 - Has he had heart by-pass surgery?
Boy - No, hes had a heart transplant.
911 - Look lad this is important, has he had by-pass surgery? Like does he have a scar on his chest?
Boy Yes, he does from when he had his heart transplanted.
911 - Son, weve got this check list weve got to get thorough before I can send help and the questions are important, now see if you can cooperate
NOW this same chap is on a crisis monitor in case it happens again. As he says, If I can hit the button before I hit the floor, it will record the last 30 seconds from its memory and my body before I hit the floor, and then the next 45 seconds of either my trip to eternity, or whatever the heck is happening. Then someone has to yank this thing off me, dial an 800 number, which is located in New York. They will read the data electronically and call back as to whether I need the ambulance from down the street. Of course if they decide I dont need help, I guess someone is supposed to walk over and kind of nudge me with a toe and tell me to quit fooling around!
PVCS January 1990
One more time, how is it TXs, especially it would seem heart plants, are so often referred to as getting a 2nd chance as if they took some deliberate or foolish action the 1st time? OK, lets buy off on the 2nd chance literal basis, but what about the DWI drivers who get sown up to drive again, or the hoods in prison that society keeps putting back together and releasing? Ive even heard it promulgated when a TX passes away that it is somehow less devastating because he or she was living a second chance on bonus or borrowed time. I guess I dont mind being a true minority and not very well understood at that, but dont make me an unpardoned miscreant who is therefore here by dint of the goodness and charity of society and the medical world. Just let me be here like anyone else with sincere thanks and perhaps a prayer, nothing more.
Another true cyclo story: A very regulated and compliant TX friend was attending a L.A. Kings hockey game at the Forum. As his cyclo dose was due, he commenced his preparations on the fender of his car in the parking lot. After seeing his syringe no less than two people approached him wanting to make a buy. <Many will not even know we used to dip our liquid cyclo out of a small bottle with a veterinary type oral syringe. DSM>
PVCS Sept. 1990
I was commiserating the other day with a fellow TX about how you really know you have arrived in the world of plants when the abnormal becomes normal. You go into clinic and merely comment about how curious it is that the ringing in your ears seems to have changed harmonic resonance and added a 4th violin this past month. I think I would really miss it if the total numbness in my right center toe went away. In fact, I would have to learn how to walk without compensating for it. My conversationalist, the heart transplants Will Rogers, struck again. Yeah, he said seriously, I kinda got to bitching about the swelling in my ankles. The Doc finally told me to shut up, that fat ankles cant be considered a social disease, so not to worry about them.
Had to call my TX Nurse about the usual Clinic lab results and Rx changes. After having been told to up the cyclo slightly, I inquired if the old kidneys were holding up as it seemed I had been gaining weight lately, perhaps due to fluid retention. The reply was forthright and it hurt, Youve got a lot of nerve asking me about your weight gain, when you actually were seen entering the parking lot finishing off a fast food milk shake last week!
How do they know? Dont they realize the vanilla ones couldnt possibly be fattening? Whats left for vices? Ease up! So I retain milk shakes, I mean so
Was talking with a new plant last week, who swears with a little more practice on learning when the prednisone cramps will onset, he will indeed be able to tie his shoe with one hand. Only problem seems to be learning how to walk with his hand tied to his shoe.
PVCS May 1991
Really makes you feel secure knowing all the illnesses that cyclosporine is protecting you against. Most lately theres psoriasis, although with the amount of bodily hair most TX recipients develop, whos to really know whether theres psoriasis lurking under it somewhere?
Then theres arthritis, a real scourge. Yet, one of the side effects listed in the study were muscle and joint pain. So if you have arthritis and they put you on cyclosporine and you still have aches and pains in your joints, all they have to say is the usual We warned you there could be some side effects, but you no longer have arthritis, just aches and pains in the joints from cyclosporine. There have been several others, but of course the landmark research involves the startling discovery that if you squirt cyclosporine in a dogs eyes, they will begin to water.
PVCS July 1991
OK now listen closely, Im at this symposium, see. Well as part of the deal they have these sorts of discussion groups with other transplants of the same type as yours. So I goes to the afternoon one for the hearts, which turns Out to have like only 3 guys with TXs and one in waiting, cause the rest went in the morning before I was up, I guess.
Well, you know, I dont know any of them, so Im sitting kind of quiet like just listening. Good golly Miss Molly, I couldnt believe my ears!
One of the guys says, "I carry my heart in the trunk of my car, when its not in my breezeway.
Im going like Sure fellow, kinda funny, but youd better check your prednisone intake, youre taking 2 of the white pills when its supposed to be 2 pink and 1 white.
Well to shorten up, the first guys real name is Cliff Steer from San Jose, and somehow he actually conned the hospital where he had his transplant to let him have his old heart to take home. Weird, huh? But ya see he knew he would have a use for it. He now goes around to dozens of organizations, particularly schools, and gives talks as The Heart Man. He gets his point across about not drinking, or using drugs, and just general bad living by having the toughest guys come up and pull his heart out of the bucket to show around what happens when you screw up your body like Cliff and others of us did.
Sandimmune Patent May Be Altered - June 1992
This pronouncement will need further scientific investigation, as they say, but it looks optimistic that we have found that new use for Sandimmune that may extend the copyright. I have just returned from spring fishing in the eastern Sierra and a personal study of Sandimmune as a repellent primarily for mosquitoes, but also other items.
At one point my partner, Red, sort of a thin Winston Churchill type, and I were fishing inside a steep banked reservoir. As soon as we hunkered down for some serious worm flinging, the sound of swarms of newly active Sierra Mountain Munching Mosquitoes filled the still air like 100 hair dryers gone amuck. It had been a long time since I had been exposed to any of these varmints, as they are really not a part of Southern California living, so I merely reacted with innate annoyance. Red, on the other hand, made quick movements for his knapsack, something he is prone to do for a little help from his fishing buddy Mr. Jack Daniels, but this time he shortly disappeared in a cloud sort of petroleum looking vapor. Good Lord, I inwardly exclaimed, hes canned LA Smog and is spraying it around his fishing site so hell feel at home, and not lost like he always gets.
But no, it was neither brother Jacks herbal complaint controller, nor straight LA Air, he was dosing himself with insect repellent much like a good military delousing, while he alternately slapped at several of his tormentors whom he had overcome in mid-diving run, apparently to impale themselves in a kamikaze last flight.
I did nothing but watch. But I carefully noted that while these pesky intruders, who have indeed caused me many an unpleasant day or night in the past, and were completely encircling me at all levels, they were not landing, or even giving the ears and nose spelunking expeditions as they so commonly like to do.
Red and 1 had had the same nutritious breakfast a la Egg McMuffin - Transplant Coordinators please go do something else, I mean like we were in the wilderness and had to eat like the natives or starve, which would probably cause severe and unneeded weight loss. I will admit that Red had seemed to replace a good deal of his systemic fluids with wine the previous evening, which may indicate I too will have to force down a similar amount on the next excursion to prove out my theory.
It dawned on me that the only major life style difference between Red and I was that about an hour before I had downed my morning meds including a 100 mg. pink football of Sandimune I had to be at my peak olive oil/fungus level as this high ordinance attack was taking place. I remembered that some TX recipients have said that either they know that cyclosporine makes them smell bad, or that people, who are obviously not their best friends have told them so. Maybe the mosquitoes were telling me the same thing; Never rattlesnakes or a human on Sandimune is their guideline.
PVCS June 1992
Yes, sun block really does work. When I set off to go fishing the transplant coordinator ordered up attire for disaster - I never should have mentioned where I was going or what doing.
In compliance with the Gospel according to Jeanne, R.N., I was to venture forth from my wilderness lodge in long sleeved shirt (90 degrees be damned!), heavy long pants to protect from scratches and varmints (same damnation as to temp.), large hat, full gloves, with waders optional. Then all areas I was unable to cover with some form of garment were to be liberally daubed with sun block.
Without going into what I actually did wear, let us say I did use the sun block in a 25, which I could only tell by the display seemed to be about midrange. The first evening at dinner I was examining my arms and hands, and commenting to my compadre that they werent burned or tanned at all after a full day in hot sun. The waitress, who was listening to part of it, exclaimed, Oh honey, its obvious you want to drop down to a 15 for a while, youre just not making it with that 25.
I have no comment on trying to tie on a hook with gloves on, or pulling the flip tops off the cans of.....
PVCS July 1992
Nighttime leg-cramp relief: Acupinch. How it works: With thumb and forefinger, pinch your upper lip - yes lip - just below the nose for 20 to 30 seconds. This works about 80% of the time.
Donald Cooper MD, former US Olympic team doctor, quoted in Minute Health Tips, Medical Advice and Facts at a Glance by Thomas G. Welch MD, DCI/ Chronimed Publishing, 13911 Ridgedale Dr., Suite 250, Minnetonka, MN 55343. (I must admit, Ive tried it twice and seemed to be successful. DM)
PVCS August 1992
Isnt it amazing how quickly we traverse the time between How thankful you must be for a 2nd chance at life, to Just think, youve gotten 5 years you wouldnt have had otherwise?
Yours truly just went through the fourth wardrobe rework since transplant 4 1/2 years ago. The Salvation Army in this city is in ecstasy. From now on I refuse to weigh, and nothing will be bought to wear that doesnt have a drawstring or a big rubber band. Try even finding a belt thats larger than a 40! The stuff hanging in the closet now looks like a bunch of car covers.
PVCS April 1993
Its really something how people have different hang-ups. I have to close one eye and kind of squint out of the other to even watch a film of a heart transplant, or any deep cutting operation for that matter. My transplant coordinator can devour a Big Mac with a shake, and then go out and harvest hearts full bore, with detailed discussions of scalpel methodology on the way back while peeking into the Igloo to make sure all is well Yet, she admits that taking a fish off a hook is beyond her psychological abilities and those of her stomach.
PVCS August 1993
Overheard from a patient at clinic summoned for his turn in the barrel.
Gee, I hope I feel all right.
Doctors statement from the lectern at the recent Minnesota meeting, Of course, we dont attempt this treatment on patients with a history of sudden death.
Dr. Sara Shumway, Chief of Surgery for the University of Minnesota Heart Transplant program, at the 2nd Chance Foundation annual meeting, commenting on that fact that for the Friday/Saturday lecture format, all the surgeons had been scheduled on Friday afternoon rather than Saturday. All of us surgeons were assigned to Friday as a favor since they know we watch the cartoons on Saturday mornings.
When asked about sleep problems for transplant recipients the same Dr. Shumway indicated that as a surgeon she would have a tough time relating to that type of problem in that most surgeons can fall asleep at any time. She stated that she, for one, usually sleeps hanging upside down in her office closet.
Why is it that as a heart transplant it is tough to reach things on lower shelves, and why is everything you want on a lower shelf?
AUGUST 1993 - A SECOND LOOK AT UPBEAT - FIVE YEARS AGO
Because Were Not Normal -
Editorial, Don S. Marshall
Because were not normal. A transplant friend at the close of a long, long- distance telephone conversation had spoken the words, and they are still with me. Why? Because I start every day trying to prove them wrong, yet as the saying goes, There aint no way.
The July 22nd issue of the Journal of the American Medical Association has an article by Dr. House and Thompson titled Psychiatric Aspects of Organ Transplantation. It starts with the usual amazing stuff containing scientific breakthroughs, Many patients become quite frightened when they learn a part of their body is failing and that they will need a transplant to survive. As an aside, Many to me implies that there are some few who are not at all frightened, or maybe just a little scared. In this election year, bring these people forth for they should be our leaders forevermore!
However, they do go on to point out that in many instances signs of mental problems and especially depression are overlooked or masked as being primarily due to surgical procedures or drug side effects, when in reality they are not. In this regard they point to appetite increase or decrease, excessive weight gain or loss, and sleep disturbances as being well known indicators that all too often go untreated in the transplant patient because they are regarded as the normal results of such a radical procedure.
They speak of the fact that patients with a high frustration level and who are obsessive-compulsives do better because they comply better. And those candidates who have positive reasons for wanting more time tend to do better after surgery than those who feel that they have done all they want in life.
Following transplantation patients often experience euphoria with the feeling of a new lease on life. It is a sense of well being at having survived surgery and also connected to steroid therapy. (Again, dont you love the surprise information?) However, changes in mental status occur in up to 50 to 70 percent of transplant patients. Liver patients are apparently the most effected. The required isolation of cardiac patients causes more psychiatric problems than in kidney cases. Delirium is common, but quite variable. And nearly all medications routinely used in the post transplantation period may produce psychiatric side effects. Those effects again in addition to, or overlaying, psychiatric conditions which the patient may be undergoing as a result of their physical condition, the trauma of events, and the environment in which they have been placed.
It could probably be safely said that we all know of at least one non-compliant patient that pursued that course terminally - the apparent death wish syndrome. In these instances the patients often make a series of nearly terminal rejection trips to the emergency room, where the latest experimental drug is administered, if available. Then there is a final trip where reversal is impossible.
We know of others who establish non- compliant patterns whereby one could easily say they are crying out for help in the only way they know that brings instant attention, even if they dont realize what they are doing. Usually the result is a lecture by the attending physician and perhaps a friendly talk with the transplant nurse, or even the reverse. There is a reaching out, but only until the next time, no cure, and no clear statement of the root problem, a psychiatric disorder.
Weight seems to be a problem for all, but of serious magnitude to some. Drugs and carelessness are blamed, and diet programs are trundled out as the only cure. But has depression been eliminated?
So far, according to two prominent studies, only about 15% to 30% of us ever return to work. Yes, there are some good reasons why that number is so low that certainly have nothing to do with mental or even physical state. Yet, the literature time and again concludes, Those who have control over their work situation do far better after returning than those who dont. Thus the President of MCI would represent the ultimate in potential for a pleasant normal return while my friend the sheet metal worker may be in some trouble. I can personally state that returning to work, as a recipient is not simple.
Contrary to Dr. Kottkes very positive report on life styles carried in the last Upbeat, there are many, many who would not agree with his blithe statement that Most heart transplant recipients maintain satisfying levels of activity after their surgery and experience less anxiety and depression than do general medical patients. Several have questioned Upbeat as to the source of this research and what possible sample he could have used. (Upbeat doesnt know.)
OK, so whats up? Well in this corner it would seem that the old story still applies. No one ever wants to admit that they might even suspect they need help from a shrink for reasons that are totally ego salving. It would seem that follow-up of transplants in the area of psychiatric evaluation and care is perhaps more important and in need of more emphasis than previously thought. In this same vein, even the most minimal of support groups floundering along playing mostly fun and games is better than isolation with no group at all. Unfortunately, as is always the case those individuals who would benefit the most attend the least or not at all. I have heard that there is talk of some heart transplants setting up an 800 number for any other plant who wants to talk.
Great idea and we should all communicate and must as the true minority. But we mustnt forget that we are not processionals, and that professionals are available, experienced in all phases of psychiatric needs in addition to those related to major surgery. The fact that weve only had major surgery and that transplantation is relatively new shouldnt limit its use. Has it somehow been overlooked?
PVCS October 1993
Also last month we published a note under the headline Slightly Below the Belt concerning the results of some real Washington Post style investigative reporting, at least for this humble newsletter. We had stumbled quite accidentally onto the fact that we thought maybe UNOS was holding secret meetings at Tides Inn, a rather sedate resort, somewhat hidden here in tidewater Virginia. We didnt make any editorial comment at all in the case of UNOS, but just somewhat smugly sat back having played our gotcha.
Well I guess its nice to know Upbeat is read is high places, because soon a letter arrived from the UNOS Director of Corporate Communications, Wanda W. Bond. The relevant paragraph is quoted as follows:
I noted with interest the latest issue of Upbeat where you made mention of a UNOS meeting held at the Tides Inn. I would like to clarify that the rates arranged by UNOS for the two-day meeting were considerably lower than the $1 80-$200 you indicated. The meeting was a once-a-year meeting of UNOS "staff" directors a time when the organization performs its strategic planning, based on the direction of the UNOS Board of Directors and our federal contract obligations, for the coming year. As with most organizations for this type of meeting, we get away from the office where there will be no distractions. At UNOS, we maintain strict criteria for economy and our planning department obtains reduced rates for all of our meetings.
PVCS February 1994
Our TX friend from Tucson, writes: Re: the complaint in the January issue of the woman whose 52-year-old liver transplant husbands cyclo is making him horny 24 hours a day - any chance of getting the name of his pharmacist?
PVCS April 1994
Isnt it interesting how the time of an appointment at the hospital is always set in an inverse ratio to the distance you have to travel to get there. Thus, with a 90-mile trek, youre assured of having to be there at 8AM or prior. Of course, no one has any comment on the fact that you rolled out of the sack at 5 AM to be there at 8, yet things didnt get moving at all until 8:45.
PVCS June 1994
Ms. Lisa Kory, Senior Transplant Coordinator with the California Transplant Donor Network and Past President of NATCO has accepted the Executive Director position of Transplant Recipients International Organization (TRIO). Ms. Kory comes to TRIO with an extensive transplantation background and is a strong patient advocate. We are very fortunate to have such a noteworthy person to lead TRIO, stated Jeff Pennington, MD, President of TRIO. Ms. Kory will join TRIO at its new International Headquarters in Washington, DC, in July 1994. <Fortunately for TRIO, Lisa is still there! DSM>
Its embarrassing enough for an old man to get his groin shaved preparatory to an angiogram, but to have the sweet young nurse discover a tick embedded in the area at the same time is really not the way to start that kind of day. Please dont even think about asking to whom such a thing happened.
PVCS July 1994
After a stinging rebuke from the Transplant Olympic Committee on my proposal to include Laz-Z-Boy Lounger riding in the Transplant Games, this TX will not be attending the happy time in Atlanta. You all have a great time, however!
PVCS February 1995
This past month, for the first time ever, an Upbeat reader requested to be dropped from the mailing list because, while he thought the information was great, sometimes Upbeat is Downbeat, and Id rather try and forget I have a transplant. Im sorry for his mental state, but can easily relate to it.
I am finding it more and more difficult, rather than easier, as the years seem to dash by since transplant - my seventh anniversary was last month. It seems that getting to the tenth year out would be a major accomplishment, but then again such success seems to assure nothing. Obviously, we are fortunate to be around at all, but I guess the point Im making is that the longer Im here, the better I like it, and yet the odds of being here even longer go down rather than up. Yes, one can say such applies to all living things, but for normals it is usually measured in say decades, rather than years and even half years.
Now its time for yet another poke in the groin with 8 hours of ceiling time, the third in 18 months, so that yet another highly trained and skilled doctor can direct and produce his own film version of The Narrowing of Don. And yet another interpretation of the viewing of the result, framed in the certainty that the bad will happen, its just a question of when and how fast. Yes, tenure as a patient in this heart! lung transplant recipient game is not an envy producer. But how can you forget
FROM THE TRANSPLANT OFFICE May 1995
(The following memo is real and was lifted from a transplant center support group newsletter. Ed.)
To the old-timers:
It has been brought to our attention that personal opinions regarding DOS and DONTs of post transplant care are being discussed at the monthly Dinner Out. Although there are many well wishers among you, it is important to remember we teach all new transplant recipients the best way to care for themselves to assure they do well for the long haul. As many of you who attend the monthly gathering have settled into your own individual and personalized routines, your way of doing things may not work for everyone. Please be aware that you are role models for our new recipients and they need your support and encouragement early on. Thanks in advance for your support of the new kids on the block.
Golly, dont you just wish you could have been the oft referred to fly on the French fries at that meeting? My goodness, what ever could those deceitful old timer plants have said or done? Wonder if it went something like this:
Hey Herm, pass the ketchup please, these fried onion blooms are just great, but its the ketchup that really puts the frosting on.
Say Nellie, wasnt that you I saw in the hospital with the mask last week? I quit walking around looking like a holdup man after the first month. Dont let them pressure you. Im told any virus can go right through one of those mask things.
Oops, I forgot my BP pill again, well, it wont be the first time, so I guess the Rent- A-Pumps got to work a little harder again today.
George, I know youre new at this, but youre really sucking up the time at clinic. Dont be going in there telling them about every little temp. you threw, or mini-ache you had, we all have to wait, and youll learn theyre not going to do anything for you except listen and take long notes.
What did we decide, are we all splitting the baked Alaska for desert again tonight?
My gosh, Harry, how do you get around that King Cut of beef every month?
Well, as I understand it that Mevacor stuff is supposed to eliminate all this low- fat diet doctrine.
You know, I think it was Ed was telling me the other day that if you tape a 5 mg. Prednisone pill behind your ear before you go to bed you wont get leg cramps.
You know the original cyclosporine was a salad dressing used on a certain small Greek Island, dont you? This guy Borland found it while he was there on vacation with his mistress. Story goes he ate so much of the cyclo-dressing he started to smell bad like the rest of us, so she left him there. Now hes rich, but there isnt a deodorant in the world that will make him smell better.
Thats the only reason we hang out together, isnt it, to cancel the odor?
Barb, you ought to come over and try my new Laz-Z-Boy. Im telling you, the most cardiac rehab. I need is pulling that little lever on the lower right. Im thinking of dropping out of rehab. anyway. After all I go grocery shopping once a week and my 18 holes of golf counts for something even though I take a cart. Then theres all the walking I do to the refrigerator. And, of course, the Doc shook his head just the other day when I was telling him how important I feel naps are. Im sure he was agreeing with me.
PVCS August 1995
Seems that after two years of trying to separate, this body and prednisone are married for life. No, the heart didnt go into rejection with the loss of prednisone; the remainder of the body did, screaming out its dissatisfaction in the form of muscle aches, joint pains, and total inertia. So now this body is a doper requiring a useless drug to just exist. Aint modern medicine grand?
PVCS November 1995
Boy oh boy, Im all for scientific research using animals assisting the progress of transplantation immunology, but please spare me opening my morning paper only to see a mouse with a human looking ear growing out of its back! Talk about bad P.R. and stirring up the animal rightists for no good reason! It was all I could do to get just one of my usual two glazed donuts down and I completely skipped the sausage and eggs.
How about that guy who shot himself so his organs could be donated. This is true. Trouble was no one believed him for one thing, for another he put the gun to the center of his chest, by the time they found him nothing was usable, except his brain, and it was rejected as not being very good even when it was hooked up and running.
November 1995 Mouse Testes Stop Rejection - ( Mickey Panicked. Minnie thinks its a riot.)
By JOE WHEELAN - Associated Press Writer
DENVER (AP 10/18/95) A substance found in rodent testicles may hold the key to preventing the rejection of transplanted organs, researchers said Wednesday.
A research team at the University of Colorado Health Sciences Center found that a molecule called CD95 ligand in the testicles of mice appears to prevent the rodents immune systems from killing transplanted cells.
This could be the magic elixir that we can use to prevent graft rejection, said Donald Bellgrau, associate professor of immunology who reported the results Wednesday in the journal Nature.
PVCS February 1996
Can you imagine the dollars that could be made by selling hospital ceilings for advertising? I mean really, first we could have sort of inspirational sayings for the gurney riders on their way to the O.R. Thoughts like, Last year 76% of the patients passing this way actually returned. Or little pieces of advice like Always be sure the bottom end of the urinal is much lower than the point of entry. Or even reminders like, Stop, has your HMO approved this trip? But then theres the potential for the hard sell stuff like, Next time you have pain be sure to ask for a Tylenol with codeine. Or even, You d be amazed how many of the Staff have a cold Red Dog Beer after a hard day in the OR. Ask your nurse to stock it.
Speaking of ceilings and the staring at thereof, why is it that all too often as you return from a vigorous morning of angiography with your sand bag lover, and the robot nurse who constantly and automatically says, Dont lift your head. You find a lunch of chicken noodle soup, pot roast with gravy and mashed potatoes and pudding for dessert? All to be fed to yourself with fingers only.
A LETTER FROM THE DIRECTOR, DIVISION OF TRANSPLANTATION
May 1996 Department of Health & Human Services
Bureau of Health Resources
Development Division of Transplantation
Rockville, MD 20857
May 2, 1996
Dear Mr. Marshall:
Im writing to tell you how much I enjoy Upbeat I was particularly interested in the two letters you published in the March issue in response to the Forbes article. Forbes itself printed a letter that described Brigid McMenamins article as the literary equivalent of a drive-by shooting.
We also wrote a response that was not printed. I have enclosed it.
I wish you continued success with Upbeat
Judith Braslow Director
Division of Transplantation
PVCS - June 1996
I suppose I could wax poetic, or whatever, about the nature of the mind of the human beast, however, ye shall be spared. Its just that the human mental makeup can get quite ridiculous, to wit: Nine years ago I was in the height of frustrated and even tearful depression about the recently discovered fact that it was almost assured that I would never live to the relatively young age of sixty, and without a transplant the next month was questionable. Now today, having just passed that now seemingly ugly 60-year milestone, Im totally depressed about having reached it!
ANTI-REJECTION DRUGS OVERUSED FOR YEARS
By Ed Susman
DALLAS, (UPI 5/28/96) --- Researchers admitted Tuesday that they have been prescribing their organ transplant patients too much of too many drugs for years.
In a series of reports at the annual meeting of the American Society of Transplant Physicians in Dallas, doctors said they are now learning to use lower doses of old immunosuppressive drugs as well as newer medications to provide the same survival benefits to patients often with fewer side effects.
In one study, Dr. Jean Tchervenkov of the department of surgery at McGill University in Montreal explained how liver transplant patients were carefully weaned off use of steroid and other anti-rejection drugs and were successfully maintained by use of just cyclosporine, the drug most often used in the treatment of transplant patients to prevent organ rejection.
Almost all of Tchervenkovs patients were able to continue on just cyclosporine. Standard treatment of liver transplant patients as well as other organ recipients has involved multiple drugs to prevent organ rejection --- often a fatal occurrence and other drug side effects.
We have probably been over-immunosuppressing patients for 20 years, agreed Dr. Sue McDiarmid, assistant professor of pediatrics at the University of California at Los Angeles Medical Center. McDiarmid told United Press International that in addition to knowing how to use medications such as cyclosporine better, doctors now have more anti-rejection medications available as well.
A new formulation of cyclosporine, a microemulsion called Neoral. Manufactured by Sandoz, the same company that produces oral cyclosporine, Neoral was cited in several studies as having the same effectiveness as cyclosporine, but with far greater bioavailability.
So strong was the ability of Neoral to be absorbed, said Dr. Leslie Miller, head of the heart transplant program at St. Louis University, that 58 percent of patients required dose reductions.
Dr. Barry Kahan, professor of surgery at University of Texas Health Science Center at Houston, said that variability in absorption of cyclosporine is a major risk factor for organ rejection, estimating that 29 percent of patients who suffer organ rejection due so as a result of inconsistent levels of anti- rejection drugs.
Neorals more consistent absorption rate is likely to reduce rejection risk.
Another drug, tacrolimus, manufactured as Prograf for Fujisawa USA, Inc., reduced episodes of acute organ rejection by nearly 50 percent in patients, Miller said, noting that major studies in the use of the drug are still lacking. But dosages of Prograf most likely will have to be reduced due to toxicities, he said.
Other studies indicated an increased risk of development of worrisome lymph node disorders with tacrolimus, disorders that could be precursors of cancers.
Mycophenolate mofetil, manufactured by Hoffman-La Roche as Cellcept reduced the incidence of acute rejection to 19 percent among pediatric patients, said Dr. Robert Ettenger of UCLA Childrens Hospital.
Ettenger said additional studies of Cellcept are needed to determine exact doing schedules in children and to determine if there are serious side effects.
Several researchers noted that the tools for controlling organ rejection about half of organ transplants fail after five years --- are available; but scientists still are tinkering with dosages and are debating about how and when to use them.
PVCS September 1996
Palo Alto, heart/lung TX Penny Toni, reports:
I made a lovely flea collar for my dog by threading cyclo. Capsules on fishline. She ran around the house rubbing her neck on the ground, rear end in the air. Looked lovely - Didnt work. Dog has fleas, floor doesnt.
PVCS October 1996
At long last, heres a rather neat theory to explain all the nighttime trips to the john by heart transplant recipients. Accept as a given that cyclosporine is at minimum rough on kidney function. Thus during the active hours of the day when the body is attempting to regulate all its needs using a minimally fixed heart rate controlled only by catacholamines, kidney function is minimal, or even suppressed. However, at night when the body is in a supine position, the heart doesnt need to work as hard, yet its resting beats per minute are still fixed at a significantly higher rate than that of a normal. Thus with extra circulatory volume that is not really needed by other areas of the body, the kidneys are in a situation where they can function more efficiently, and we all know the result, clockwork trips to get rid of their successful efforts to clean up the blood.
Closing question: How many of us Txes have to find a Kleenex when we sit down to
PVCS January 1997
Why is it that so often in social conversations a heart transplant is assumed to be heart by-pass surgery? Most recently, while waiting to pay at the local general store, the owner turned to the other customer, a lady, at the counter and said, This fellow has had a heart transplant.
Her response was, Oh, Ive seen lots of those working as a nurse in Intensive care. I asked her what transplant center she might be connected with. Oh, you mean transplant! No, I thought you meant by-pass.
You really had a transplant? Boy, that just shows that it works! And all that from a nurse.
Through 9 years of living as a transplant recipient I have collected all sorts of gimmicks to remind me when to take the required medications. Almost universally they have been rather unsuccessful. Unfortunately they all either buzz, ding, or beep, and much to the annoyance of my often questionably supportive family, all I get most often is, Don, youre dinging again. or, Dad, your bells are going off and people are staring or the treasure hunt, OK guys, somewhere in this house one of dads pill boxes is beeping, please try and find it, its driving me nuts! The problem lies in the fact that after 9 years of varying levels of prednisone et al, the old man cant really hear worth a hoot either.
ONE WISH FOR TRANSPLANTATION
At the conclusion of the recent Upbeat questionnaire on the lives of heart and lung transplant recipients there was a question:
If I had one wish that would be granted to make life easier for heart/lung transplant recipients, it would be:
The actual first questionnaire I reviewed answered with, I would wish to offer my prayers for the recipient.
Some of the other answers were obviously expected such as, No medications be required, yet others were rather surprising and covered a very wide range of the patients view of transplantation. After reviewing the list and attempting to establish some very organized neat presentation, it appeared much easier and effective to just list the wishes as they were taken off the questionnaires, and limiting very similar thoughts to one entry on said list.
If I had one wish for heart/lung transplant recipients it would be:
That they not be required to take medications.
To be told all of the facts and hard truths before transplantation.
There should be more professional help afterwards especially mental. Less cost of medicine.
More support prior to transplant for those without strong family and friends.
Make more dollars available for those not insured - medications, etc.
Find a cure for chronic rejection.
Stop unnecessary tests, After 2 TXs Im tired of being prodded and poked!
Let TXs live like normal people.
Eliminate chronic rejection by setting up the body not to reject new organ.
Better inform the public, so waiting time could be shorter.
Make it so TXs have the ability to lead 3/4 of a normal life, Drs. and Coordinators really have no clue of the real situation when they say we should life a normal life!
Stop the weight gain, or provide a way to lose weight.
Develop a one-shot anti-rejection drug.
Provide better insurance coverage, nationwide health care for all.
More strength in legs.
Not to have to worry continuously about infection and rejection, We are never out of the woods.
That employment discrimination against TXs be eliminated.
No drug side effects - no prednisone look, no runny nose when eating.
Get off using prednisone!!
Stop the so-called social scientists! ethicists from trying to make older transplant recipients feel guilty for wanting to live.
That there be no resulting skin cancer requiring surgery.
No use of IV Ganciclovir.
Make sure everyone talks with a transplant recipient before being transplanted.
Make transplants and aftercare affordable to more people.
Find a cure for O.B. Losing lung function.
Get the system better organized so a transplant can happen before youve lost your health entirely.
Find more donor organs - no waiting, no dying.
Make that Star-Trek gizmo that passes over you body and makes it well.
Make the public aware of what transplantation can and cannot do. Do away with the TV sensationalism.
Find a better method of biopsies and annual heart cath. (non-invasive if possible).
Make organ donation presumed consent.
Be able to regenerate heart-brain nerves. Eliminate medications that ruin kidneys
as a side-effect.
Put recipients into an amorphous haze (sleep) from the time they are told they need a transplant until they wake up post-op.
Simplify and organize the billing systems of doctors, hospitals, pharmacies. There is no reason for all the errors and duplications in bills!
Make rapid diagnoses with minimal wait for transplant. Provide good MD mental support person on the transplant team.
Government should finance TX so not such a financial burden.
Get the Federal Government out of the program.
And finally - Make it so no transplantation is ever required.
PVCS July 1997
TX Bob Vietti of Yates Center, Kansas makes a poignant statement that pretty well returns the high number of nighttime trips on the part of many transplant recipients to the proper prospective. As Bob says, Ive had two heart TX, Oct. 83 and May 88. For those people who have to go to the bathroom several times a night, they should be thankful. I used to do that, then my kidneys quit. Ive been on dialysis for seven months now.
What was it about seeing dozens of copies of TX Claire Silvas book, Change of Heart on display at my local Walden bookstore that bothered me? Lets see, profiteering using a false premise that could cause severe ridicule of a solid scientific procedure benefiting many people in sincere need of it for saving their lives.
TX Jim Nekitas forwards the following important and scientific document direct from San Diegos Sharp Hospital:
Top 10 Reasons Why Pred-Heads Should be Thankful for Their Wonderdrug:
Offers men real insight into PMS.
Enables you to say twice as much in half the time.
Makes cyclosporine seem easy.
More affordable than coffee.
When it sticks to the back of your tongue taste buds you never knew existed spring to life.
Built-in excuse for hogging the whole hour at Support Group.
You finally have a logical reason for eating that fifth piece of cheesecake.
Your family finally has a logical reason for disowning you.
With the excuse of bone loss, youll be able to hang out at ski resorts in your body cast and be idolized for attempting Suicide Mountain.
And the Number 1 reason why pred-heads are lucky:
We have inside stock market information. . . buy 1, 000 shares of Home Hair Removal Systems.
PVCS October 1997
And a Texas TX writes: I continue to be amazed and amused at the transplant world, how little the medical establishment seems to consider asking questions of a large number of transplants when it comes to survival, procedures, etc. I am amused that every time I go to a hospital which is often, not necessarily for my heart (best organ in my body) but associated ills how the nurse or the technician always asks, with a bright smile, How are you today? As if I would be there if I knew how I was. But thats not a gripe, just a comment. Beats what one MD specialist said to me a couple of years ago when it was discovered I had brain cancer, You arent ever going to get better.
I was sorry to have to fool this esteemed Fellow, etc., but I got better and 3 MRIs have shown no sign of the cancer. You learn a few things as a transplant, and one of those is:
Dont ever quit and dont ever look back.
1998 For Most of 1998 Upbeat was on hiatus while the editor fought it out with cancer, a broken ankle and phlebitis.
As to the patient. He has some neat scar patterns on his right shoulder and left ankle. His lower face and neck is badly swollen due to the permanent effect of the radiation (gosh no more neckties!). He has absolutely no saliva, which may be the most annoying side effect. Ninety-five percent of head hair was lost, only to be eventually replaced by curly salt and pepper steel wool - coarse grade. And his voice consists of one paralyzed vocal cord caused by the cancer and another that just flaps in the breeze when an attempt is made to talk. The result is sort of an absolutely non-sexy, raspy, loud whispers that even the maker finds annoying. The answering of the phone has been interdicted by this condition, which may well be the greatest benefit from the situation.
Friends kidded me (oh yeah, I was really in a joking mood through all of this - surviving on Xanax and Zoloft!) that from now on when I went through airport security I would trip the alarm with my ankle. The Dr. said, No way, but well give you a card just in case. On my first trip post-mess, I attended a UNOS OPO meeting at Dallas Airport. I tripped every alarm in the place both going and coming! I would whip out my card, which only made them more suspicious. From now on Im destined to be just another gray haired terrorist, who cant spit.
PVCS November 1998
When Upbeat first started, the entire Registry Annual Report was contained in about 4 or 5 pages of the Journal of Heart & Lung Transplantation. Upbeat readers were able not only to understand the report, but nearly the entire data could be included in one newsletter article. I hate to say it, but shortly after UNOS entered the program about a year and a half ago the report seems to have become a product of bureaucracy at its highest level of practice. The report now consumes 12 pages. Granted it has excellent graphics, although precise interpretation of same is somewhat difficult due to small size. But it also has left the layman (read transplant recipient) in the litter of its scientific lingo. For just a single example, the following is one sentence of many like it from the opening page of the report: A multivariate logistic regression analysis was then applied to the entire data set, but limited to those patients who had all of the model variables available in their records to determine the independent predictors of survival. Wow, talk about the origin of Richmond we have a problem.
PVCS January 1999
Something dawned on me the other evening as I was forcing down dinner (well thats about it with no saliva!) and watching the evening news on television. A new drug concept was being announced that would revolutionize the transplant medical protocol. I cant remember what it was, but as I listened I had a mental flash, something that usually represents nothing more than another black hole in this well-worn mind. But anyway, I realized that many others and I have now been a part of the transplant scene for ten years with some of us pushing twenty. I would guess that conservatively within that period we have heard at least 6 times per year this newly announced drug will advance transplantation and should be available for use in 3 years; this new laser perforation procedure looks really promising for CAD sufferers especially heart transplant recipients and should be in widespread use within a year and a half; the ability to preimmunize a patient from a transplanted organ should be refined by the year 1994. And most recently here in 1998, Within five years it should be possible to grow specific immuno-negative organs for transplant, and in a sense have them ready on the shelf. Based on the observable track record of other new miracles, please feel free to try like the dickens, but I dont think so Tim.
What gives?!! Im still sitting here at 11 years out still taking my twice daily Sandimmune (yes, Sandimmune, if it aint broke ) and my prednisone, because Im now addicted. Because of active cancer I am off Imuran, but that was an after the fact action.
Im confused. This whole transplant endeavor, according to presumed reliable announcements made for broad public consumption, was supposed to advance scientifically by quantum jumps in the last two decades especially after widespread use of cyclosporine began. Instead the way I see it, we have an even worse shortage of donors than we ever had simply because the process itself has been recognized as the best alternative to any other therapy, thus rendering more and more patients not only qualified for transplant, but willing to do so. And we still argue rather vehemently and draw up page after page of rules as to the absolute fairest way to distribute the organs that we do obtain. Yet the protocols, itself, with a few refinements, is now arguably over twenty years old and from this patients view, quite stagnant.
PVCS - April 1999
Once more with full-frustrated bitterness, Im just darn tired of meeting 90-day heart transplants already on less prednisone than I am after 11 years! Sour grapes, heck yes, but somewhere medical protocols badly missed the boat on required dosage of prednisone. I dont think the drug hit the Rx pad yesterday, and its negative side effects have long been well known. Why then ten years ago were transplants subjected to such massive addictive doses for so long, with many years of absolutely no effort to reduce or wean the patient off it? Then by the time they found out the right way to use it, it was too late for a great number of very compliant, and by then suffering, transplant patients?
If we want to go on with a further comment on Oji Board Medicine, theres the difference of opinion on of flu shots that still exists today. Some centers absolutely require the shots; other centers will not endorse them for transplant recipients under any circumstances. Now this total contradiction of protocols has been going on for at least ten years. By now one would think there must be a body of recipients out there large enough to put some sort of scientific basis to the edicts.
PVCS - MAY 1999
One thing about being a TX recipient, with or w/o cancer, is being thankful you can still meet so many people who are really sicker than you are. (Well, I dont know, its a thought that came to me - yes; maybe its the damn prednisone!)
PVCS November 1999
And for one more year, you all please have the happiest of holiday seasons and a very healthy New Year.
And be sure and remember all transplanted hearts should be checked for the Y2K compliance of the MI62B chip inserted at the graft point right next to the check valve. Transplanted lungs only need to be checked for full inflation just after midnight of New Years eve.
PVCS May - 2000
The Heart Transplant Expert
The famous surgeon, a bit surprised, walked over to where Morris the mechanic was working on the car.
Morris straightened up, wiped his hands on a rag and asked argumentatively, So Mr. Fancy Doctor, look at dis here work. I also open hearts, take valves out, grind em, put in new parts, and when I finish dis baby will purr like a kitten. So how come you get da big bucks, when you an me is doing basically DA same work?
Dr. DeBakey leaned over and whispered to Morris the loudmouth mechanic.
Try doing it with the engine running.
Contributed by TX David Campbell, Cinnaminson, NJ
Upbeat started in 1988. The intervening years have brought tremendous changes to the universe of transplantation. We patients have seen, and frankly endured, many of these changes. When successful transplantation first got going with the advent of cyclosporine, it appears to this patient that there was almost an overkill of exuberance in the treatment of patients. The goal of all goals was to keep them alive at all costs, because that was, and still is, the simple statistic that counts when it comes to accreditation and insurance payments.
The now infamous triple drug therapy was apparently conceived as a fail-safe redundancy of drugs to catch rejection with all the medications that were then available. It worked, but it was really tough on patients.
Cyclosporine was as bad for kidneys then as it is now. However, I can remember talking with Sandoz reps., and even seeing ads, that cautioned physicians strongly against reducing the recommended dosage. The obvious result has been many of us had to have kidney transplants. Imuran seems to have turned out to be a sneaky cancer-causing agent, which certainly played its part in the 43% of us who have died of cancer as of 1998. Then theres our friendly enemy prednisone. The mega-doses of the early days were triturated down to a maintenance level, but it was firmly believed that the drug would be required for the duration of the life of the transplant. As a result when newer information indicated total withdrawal would be advisable, for many patients it was impossible, as they had become prednisone dependent.
So if the true financial statistics could ever be reviewed, the results of transplantation over the past decade has been a tremendous medical expense in the treatment of conditions that really were totally ancillary to the organ transplant. Surgical procedures such as gall bladder removal due to cyclosporine, dialysis and transplant because of kidney failure have been commonplace. Cancers of many types, often fatal, have been due most likely to the combination of cyclosporine and Imuran. Osteoporosis, vision and hearing problems showed up among other deficiencies due to long term use of prednisone. ACPA would have a field day showing that outside of maintaining a life, transplantation was/is about as poor an investment as anyone could ever think of other than the old rathole.
One wont begrudge the new breed of transplant recipient, with the new drugs and systems, (Remember those new drugs that were always just around the corner? Some of those corners have actually been turned.), but let us hope at some point they will realize that early pioneers on the cutting edge of medicine usually have it tougher than the pioneers that follow. If you cant comprehend that statement just consider Barney Clarke.
I find it has become difficult to walk the walk and talk the talk of the newer transplant recipients. (Talk! Heck my cancer hit the larynx so the worst thing I could do is give a talk about transplantation. I sound like a dirty old obscene man, ah well ) The protocols have changed a great deal. One also perceives that the advent of a potentially fatal ancillary and potentially recurring disease in the recipient patient seems to perhaps unintentionally cause the level of maintenance treatment of the transplant patient to be reduced to sort of a make the patient comfortable level. And, of course, the naturally occurring overlay of problems associated with aging over 60 also can act in combination with the above as cause enough for reduction in the level of concern for the transplant patient. Its sort of a we got him over the hump now let him coast to the end type of philosophy.
Now regardless of any of the above 20/ 20 hindsight views, ninety-nine percent of us are just plain delighted to have had the opportunity for transplantation and thus to experience aspects of our personal lives like graduations and grandchildren that we would have otherwise flat out missed. Additionally, its a rare recipient who doesnt,, think the quality, skills, and yes, human compassion of the medical people involved in all phases of transplantation is off the high end of the scale, producing what has got to be an unparalleled patient level of overall comfort and assurance whenever possible.
In Upbeats 12-year run there were a total of 1,041 readers at one time or another. At the closing there are 457. We do know that many centers Xeroxed the newsletter for further distribution. In the same period we lost 105 transplant readers to death, or 18% of the total transplant readers. Many of those had become real friends and their loss was a difficult situation for me above the norm.
I think we did some good with Upbeat as well as provide some indication that even when we are in a long term difficult situation there can be fun and funny things do occur. In a way Im very sorry to stop, but Upbeat has been pushed aside by information sources containing far larger quantity and certainly greater quality than we were able to come up with.
As stated earlier I am happy to leave you in at least a mobile state of health. Please do your absolute best to stay well, and above all NEVER GIVE UP!
Don S. Marshall
PO Box 482
Mathews, VA 23109
P.S. Yall stay in touch!
Disclaimer: The material in this document has been collected by Don Marshall and friends. New ideas and materials are welcome all the time. Nothing herein is ever to be construed as medical advice. As a policy, Upbeat is sent upon request to heart and heart/lung transplant recipients and other interested parties. Donations of $15 per year, or more, from TX recipients, if not a burden, are vital. From all others the donation is specifically requested. The date shown after the name on the address label indicates the last time a donation was received. Please make checks payable to Don Marshall, as we cannot afford to become nonprofit. Send materials, letters, or checks to:
P.O. Box 482
Mathews, VA 23109-0482