To Fritz - Disappointment, temporary setback
Michael Homa
I don't regularly post (I just 'lurk') because I find it difficult to
express in words what I want to say. The ability to communicate
compassion and sympathy using the written word does not come easily to
me. I marvel at the humanity that others on the list are able to
express so effortlessly. But, because you mentioned my name
specifically, I felt I should reply.
I know it would appear presumptuous of me to say that I know what you
are going through, but I do. I believe that some of my experiences are
similar. Permit me the indulgence of repeating them. However, I should
warn you: what another person can say in a sentence takes me a paragraph.
I attribute my long-windedness to the new and improved lungs (lots of
hot air - happiness for my pulmonologist and me, but a pain in the ass for
everyone else).
In January, 1993, I was diagnosed with a rare form of lung cancer
and was given only several months to live. While undergoing chemotherapy
(which was ultimately ineffective), my pulmonologist called every lung
transplant center in the U.S asking them to consider me. A lung
transplant for lung cancer had never before been attempted in North
America. Loyola Medical Center in Maywood, Illinois, (a suburb of
Chicago), was the only center smart enough or dumb enough (the jury is
still out) willing just to talk to me. The 'great Barnes' (sarcasm
intended) wouldn't touch me with a ten-foot pole. I don't know why
Loyola was willing to consider me when all other centers said no.
I do know that Loyola thought 'long and hard' during the evaluation
stage. I was not privy to the decision-making process, but I
did get several 'inklings.' It was not a consensus decision. I know
there were doctors who were against accepting me. They would be going into
virgin territory and I suppose they didn't want to take a chance on me
when there were others who were also in dire straits, but did not
pose any of the risks of my case. What if they did the transplant and
the cancer came back? Why take a chance? They certainly didn't have a
shortage of applicants. On the other hand, they may have wanted to
push the application of lung transplantation a little further from
where it was. It's been eight months since the transplant and I've
had no problems; the cancer has not returned and I've had no bouts
of rejection. The transplant surgeon is writing a paper about my
case. Now, none of the doctors can remember any of their then-valid
medical objections. What's that saying: 'Success has a thousand
fathers; defeat is an orphan.' Why am I prattling on about myself?
I want to give you hope. I too was in what appeared to be a hopeless
situation. Yet, with the help of one center, we cheated death. The
difficulty was finding that one center. It appears to me that you have
followed the correct path - you have approached those centers that BC/BS
will approve. However, since those two centers are unwilling, it may be
time to change tactics. I can tell you that my doctors did not restrict the
search for a transplant center to those approved by my insurance company
(more on this later). They found the center first and then we
addressed the issue of payment. If Stanford or Barnes won't do the
transplant - for whatever reason(s) - TRY ANOTHER CENTER. Call Pittsburg.
What about Duke? And then there's my personal favorite - Loyola. They
were willing to 'push the envelope back' in my case. Maybe they will
consider you. And I know you can get from Muncie to Chicago within two
hours. Given what you are facing, you have nothing more to lose AND
EVERYTHING TO GAIN.
Regarding Cost
--------------
I too am a university employee. The University of Illinois at Chicago is
a publicly-funded institution. The state of Illinois has a list of
approved lung transplant centers. The only one on the list is Barnes.
Since Barnes had turned me down, it appeared that I would be obligated
to pay for the transplant myself, assuming I could get ANY center to
accept me. Once Loyola agreed to do the transplant, I still had to
convince the state to pay for it. And believe me when I say the state
was not willing to pay; Loyola wasn't on the list and so long as it
wasn't on the list, the state wasn't going to budge. This is what I did.
I found in my state health care manual the list of approved transplant
centers for each transplantable organ. I noticed that the Loyola was
approved for hearts. If hearts, why not lungs? I then called Springfield
(the state capital) and spoke to the head of the department that handles
insurance for transplants. I mentioned the inconsistency. Well, Loyola
talked to the state and the state talked (read: negotiated) to Loyola and
finally they came to an accommodation; Loyola gave the state a 15%
discount and, once that was done, all financial impediments 'melted away.'
Even now, months later, Loyola is still not on the state list of approved
lung transplant centers. The point is this - is there some room for
negotiation with BC/BS? Would BC/BS be willing to fund the transplant at
some other center if that center were willing to give a discount? Find out
which centers BC/BS has on its heart transplant list, on its kidney list,
etc. Then find out if that center does lungs. It may be that BC/BS won't
budge. I know that BC/BS isn't known for its compassion and flexibility.
But give it a shot. Don't lay down and die. If you have to go, go out
kicking and screaming.
Regarding losing your job
-------------------------
I cannot speak for your employer. But I know that in my own case, I
had two options: temporary and permanent disability. Initially, I
used all of my sick leave and then, when that was all gone, I went
on temporary disability. That meant that I had 65 months (yes, over
five years) of a guaranteed check. The amount was only for half
salary, but it at least gave me some income. It also ensured that I
held onto my health insurance. It was one less worry. I know that
your job is the least of your worries right now. But, it is important
to plan ahead. Assume that Stanford or some other center will do
the transplant. You want to have a job waiting for you after your
recovery. I was able to ensure that via disability.
I don't want to give you false hope or be a Pollyanna because things
worked out for me. For each person lucky enough to get a transplant,
there are hundreds who aren't so fortunate. For me, the whole process
was a struggle: a struggle to get accepted by a center; a struggle
to recover from the procedure; and a struggle to get the state to
pay for the operation and the post-transplant care/medication. But all
of that pales in comparison to what I've gained ----- I'M STILL ALIVE.
My hope is that I'm a better person for having gone through it.
This may sound corny, but there's a part of another person inside of
me. I've never met the donor family, but I feel a sense of obligation
to measure up. They have given me this gift and I don't want to
disappoint them. There are no manuals regarding how to proceed. You just
muddle through it - sometimes making new rules as you go along. Maybe
something I've said can be of value to you. Maybe by hearing from me or
others on the list, you will realize that all is not lost. Just because
Stanford and Barnes don't want to take a chance on you, it doesn't mean
that all centers will follow suit. All it takes is one doctor at one center
to say 'You know, maybe we should try.' In my case, it was Dr. Edward
Garrity at Loyola. I'm hopeful that you will find your Dr. Garrity.
Michael
Dan Flasar
>In January, 1993, I was diagnosed with a rare form of lung cancer
>and was given only several months to live. While undergoing chemotherapy
>(which was ultimately ineffective), my pulmonologist called every lung
>transplant center in the U.S asking them to consider me. A lung
transplant for lung cancer had never before been attempted in North
>America. Loyola Medical Center in Maywood, Illinois, (a suburb of
>Chicago), was the only center smart enough or dumb enough (the jury is
>still out) willing just to talk to me. The 'great Barnes' (sarcasm
(...)
>I don't want to give you false hope or be a Pollyanna because things
>worked out for me. For each person lucky enough to get a transplant,
>there are hundreds who aren't so fortunate. For me, the whole process
>was a struggle: a struggle to get accepted by a center; a struggle
>to recover from the procedure; and a struggle to get the state to
>pay for the operation and the post-transplant care/medication. But all
>of that pales in comparison to what I've gained ----- I'M STILL ALIVE.
>My hope is that I'm a better person for having gone through it.
>This may sound corny, but there's a part of another person inside of
>me. I've never met the donor family, but I feel a sense of obligation
>to measure up. They have given me this gift and I don't want to
>disappoint them. There are no manuals regarding how to proceed. You just
>muddle through it - sometimes making new rules as you go along. Maybe
>something I've said can be of value to you. Maybe by hearing from me or
>others on the list, you will realize that all is not lost. Just because
>Stanford and Barnes don't want to take a chance on you, it doesn't mean
>that all centers will follow suit. All it takes is one doctor at one center
>to say 'You know, maybe we should try.' In my case, it was Dr. Edward
>Garrity at Loyola. I'm hopeful that you will find your Dr. Garrity.
>
>Michael
TRNSPLNT has been on-line for over 5 months now. Next month we will
celebrate our 6 month benchmark. In that time, we have gone up to 70 to 75
subscribers, among whom are regular posters, at least one blabblerfingers (me),
lurkers, listeners, information wonks, activists and way too many types to
categorize.
Our posts cover the range from poignant personal experiences to joy at
a member's new transplant, from politics to medicine, from academic treatise
to personal history.
Michael Homa's post today is a passionate, heartfelt articulation of
the determination and spirit that motivates us all. He points out the bare
cold facts that it is up to each of us overcome whatever barriers come between
us and our goal. We cannot wait for someone to remove them for us, because
sometimes, even with the best of intentions, there simply isn't time to work
with things as they are. But that doens't mean we can't work to change the
rules.
Fritz, I have been trying to respond to you ever since your posting the
other day. I've been through at least 3 drafts, but I know that I could'nt have
said what Michael said today any better. This is the attitude that is needed
to survive. And more than attitude, Mike and others have added the specifics
of how to cast your net wider, how to see the bigger picture, down to the nuts
and bolts of how to do it.
TRNSPLNT grew out of a desire of mine to have a way to communicate and share
information with fellow transplant recipients. It's original form was to have
been a newsletter, but I could never get it together to do it. Thanks to the
Washington U Computing Services Department, applying for a discussion list
hosted on our campus was no harder than ordering a phone installation, and at
no cost. My part was easy, it took all of an hour of my time.
Since we have gone on-line, the real work has been accomplished by our
members, and the postings of the last few days has shown this more than ever.
Together, we are a vast resource for each other. We're a heterogeneous bunch
with great talent, knowledge, experience and heart (not to mention pancreas,
kidney, lungs, liver and bone marrow). Reading TRNSPLNT is always a high point
of my day, and it is hard to resist the tempation to drop what I"m doing when
I hear that "beep" telling me that someone has fired off a message to us.
Mike, reading over your post, by golly, you got ME fired up all over again!
I went out and exercised for 1/2 hour at lunch, just to make sure I keep this
kidney for good. Thank you for your terrific pep talk and, and I want to say
this to each and every one of you: thank you for NOT GIVING UP! Each of us is
a source of hope for all those who are yet waiting for a transplant. When we
take care of ourselves and our families, we are offering ourselves as an
example of what can be done, that not only can we be alive after a transplant,
but that we can LIVE! And those of us who are not candidates or who have not
had transplants, the very fact that you are out there pushing to bring things
together, sharing information, working in the field - all of this offers proof
that we are not alone in this. Thank you, too, for not giving up on us.
Fritz, warmest welcomes. We're a talky bunch, not always serious in tone
but completely aware of where we stand. Stay tuned, and keep us posted. I'm
so sorry that Barnes turned you down - it would have been a chance for us to
meet, since I work for the Medical School there.
Just remember,
Non carborundum bastardi (don't let the bastards grind you down).
Dan f
00fj...@leo.bsuvc.bsu.edu
Homa personally, but I don't seem to have the correct address.
Michael Homa: could you please send me your email address? or snail mail?
And thank you for such an encouraging, insightful, and remarkable post!!!
Just a librarian,
...Fritz...
Michael Holloway
In a previous article, U52...@UICVM.BITNET (Michael Homa) says:
>I don't regularly post (I just 'lurk') because I find it difficult to
>express in words what I want to say. The ability to communicate
>compassion and sympathy using the written word does not come easily to
>me. I marvel at the humanity that others on the list are able to
>express so effortlessly.
Sorry, I must disagree. That was damn eloquent. It caused me to remember
that The Cleveland Clinic had to negotiate with BC/BS to get them to agree to
cover the cost of my niece's liver transplant. It is possible, I suppose ,
that some centers can't or won't negotiate or that BC/BS's funding practices
for tranplants may have changed.
Remember, these people will be doing psychological evaluations that they
probably aren't going to tell you about (see UNOS Update). Referring to
yourself as having "nothing to lose" is apparently becoming a red flag
for some of them. Best not to repeat it. This isn't a criticism of
anyone. It doesn't make any sense to me either, its just an expression after
all, but I have heard ethicists discussing it.
Mike
--
Michael Holloway
E-mail: mhol...@ccmail.sunysb.edu (mail to freenet is forwarded)
phone: (516)444-3090