October 3, 2002
My Son Is Going to Die Several Times............Tomorrow
As I sit to write this, my family is dealing with a killer - Pulmonary
Hypertension. Today is the 3rd of October 2002 and my son is in
hospital awaiting surgery. How did this start?
Tim was a healthy 19-year-old just starting to evolve as an adult,
forging his own pathway in life, beginning his journey. He had no
major health problems, just the normal stuff: a couple of broken
bones and normal childhood illnesses. I was concerned about his
inexperience behind the wheel more than anything else. He and Emma
were planning a future together. Life was good. There were wonderful
things ahead for our family.
One day he complained about a sore arm. It persisted. He had awakened
after sleeping on it and it was numb. He thought it might also be
a bit swollen. Well this is not so unusual especially for an active
19-year-old. A muscle strain, we all thought. Nothing more. He had
been to a concert the night before and they had danced and been
in a huge crowd. With all the jostling that goes on at concerts,
it did not seem like an issue.
A few days later, he complained of some slight chest pains but
very minor. Again we thought it could easily be a pulled muscle.
He said he felt okay; he even went bush walking during this time.
We weren't at all concerned.
Another week or so passed and his arm was still bothering him.
When he was cleaning out his fridge one day, his arm became tight
and swollen. This time it concerned him enough to call us and we
said he had better go to the hospital to get it checked out. So
off he went.
They did an ultrasound and found a clot in his arm. Tim was admitted
to hospital and put on blood thinning drugs immediately. It was
insinuated that he could have these problems from IV drug use and
we had trouble convincing his docs that this goody two shoes vegetarian
kid was not an IV drug user. They all know now that this wasn't
the case!
Over the next year or so Tim seemed a bit different. He seemed
to tire more easily, his colour wasn't so good and his arm kept
swelling up. He started to feel short-of-breath more easily and
said he could feel his heart pounding.
At this point, we went through a great many medical tests and he
was found to have "Pulmonary Hypertension". An "Echo" was the test
that detected Tim's elevated pulmonary artery pressure and several
other tests confirm the diagnosis. His lungs had clot residual in
them that wouldn't dissipate and his heart could not pump blood
through some areas in the lung. His heart was working very hard
to do the job it had to do. At this point, the blood pressure in
his heart was up in the 80's. A normal pressure should be 30 or
below.
This didn't mean much to me at the time, I assumed that they would
give him some medication to "fix" the problem. Then at a Doctors
appointment one day, I heard the words echo in my head, "at this
rate your heart can't keep going and with your pressures this high,
you can only live a short time" Imagine my state of mind. Surely
they can't mean he could die? What are they saying? What is going
on here?
When we started to search the world for information about this
disease, we quickly realized that Tim had a terminal condition.
At that point, our passive days of "no worry" were behind us.
We have tried several different oral medications and have also
tried to get on drug trial programs. But time is passing and he
is slipping fast. His pressures are up to 135...we know his heart
can't keep it up.
During our search, we learned about a surgical procedure called
a Pulmonary Thrombo Endarctemony (PTE) . We also found a surgeon
who has performed this procedure five times. He has had a couple
of successes and a couple of not so successfulls. This may not be
the best track record, but there are so pitifully few choices. We
make an appointment and after a few months of testing, he offers
us the surgery.
The summary of our situation now is:
If he continues on, even though he is on medication, he will die
in a few months at the most.
He can go on the transplant list and maybe he will receive a transplant,
maybe. If he gets new organs, maybe he won't reject them, maybe.
They propose a double lung / heart. I don't like the numbers they
give us.
If he has the PTE and doesn't die in the theatre, he could have
a pressure drop low enough to sustain a long life on medication
or maybe be able to cut some of it out. Or just give him more time
to find a donor.
This surgery is much more complex than a transplant - he has to
go on bypass, he has to be covered in ice and his body temp has
to be brought right down and he has to be "arrested" while they
open his arteries in his lungs and try and dig this residue out.
At this point, they will resuscitate him and then arrest him again.
So he has to die for 30 minutes at a time over approximately 9 hours.
The catch is maybe he won't resuscitate and the other catch is,
if his heart does start beating again and the blood pumps through
his lungs, it only takes on artery to have a small cut in it and
he will hemorrhage and die. The work must be very precise.
So that is our day tomorrow.
My brave son lies in his bed at the hospital tonight thinking about
his possible death tomorrow, we are in a motel room a kilometre
from the hospital. My other son is here with us wondering if he
has a brother to go through life with after tomorrow. My mother
is here wishing that she could trade places. My sister is here just
in case. My husband, who is medically trained, is frustrated and
wondering how he can keep the family going and himself as well.
Emma's dreams may just disappear. And I am sitting thinking how
can I send that boy off on some hospital trolley, watching him go
as he maybe faces his death. I may never speak to him again. He
might have brain damage. My head is spinning.
I think I might have to fight them off tomorrow. I am not sure
I can let him go!!! Last night we were all at home and I got up
during the night to watch my children sleep, just like when they
were little. Everyone seemed fine, everything so ordinary. There
must be some mistake!!! MAYBE..........
We are all going to the hospital at 5.30 to watch the sunrise together
and hug each other as we wait for Tim to be taken away.
Whatever happens, our lives will be forever changed.
Ten Months Later
The surgery was somewhat successful. Tim is alive and did not lose
any IQ points, but the fight is far from over. The post surgical
report confirmed that he would not have lived much longer on his
own. The procedure helped to bring the pressures down, but not enough.
He continues to be very symptomatic.
Tim's doctors want to start him on Remodulin or Flolan to bring
the pressures down further, but these drugs are not yet available
in Australia. These medications are available in some parts of the
world outside of the U.S. but because of the high price tag, the
Australian government has been dragging its feet.
Australia runs on a medicare system for medications and treatments,
rather than a health insurance type system like there is in the
U.S. There is simply no way the average person can afford to pay
for these medications without government subsidy.
That is our current fight. Tim desperately needs UT-15 (Remodulin)
in order to live and at this stage, we can't get it. As you might
imagine, the frustration factor is high. We have appealed to the
drug company and agencies involved and we're hopeful we can make
this happen. The question of the hour is, when.
Tim is not the only one fighting this disease. It affects every
aspect of our lives. The surgery was traumatic for every one of
us. Tim had to fight to regain his strength and I had to fight not
to fall apart completely. We had such high hopes and now, we're
still at it.
You might wonder how I handle all of this. I cry. I cry a lot and
I look for support from the people who understand, my friends on
the pulmonary hypertension web sites. It's a nightmare. We're living
a nightmare. I'm full of grief and anger and sometimes I just don't
know what to do. They are telling us to be patient and wait. Sure,
be patient and wait. And wait.
August 1, 2003
Editor's Update:
One year later, October 1, 2003
There were so many loose ends when Tim's story was published and
there have been so many new and positive developments since then,
we thought we would share them with you all.
Tim and his fiancé Emma have relocated closer to Tim's
family and Tim has taken a new job in tech support for a non-profit
organization. The organization's mission is to help disabled people
function within the community at large. Tim loves his job.
Tim has started a new medication - inhaled Iloprost and is tolerating
it quite well so far. He has not been taking this drug for long
- just a
few weeks - but he is feeling a bit improved and hopefully this will continue.
There is talk recently about Flolan in Australia. It's too early
to tell if this is rumor or something in the works. As usual, Tim's
family only knows it's a possibility, but price and availability
will decide the matter.
And finally, the really good news. Tim and Emma are planning their
wedding for March of 2004. I think there will be a flood of happy
tears at this function.
So, things are looking up for our friends in Australia. We knew
you'd want to know.
Cheryl Switzer
Feature Editor for PHC
| WE
WOULD LIKE YOUR FEEDBACK.
Please send your comments about this article and your suggestions for
future articles.
We ask that all articles
are relevant, that common decency prevail, and that any factual statements
be verified for accuracy. If you are sending comments on a feature, please reference the title in the subject
line. Our goal is to bring useful and interesting features to you in future
months. |
PHCentral is committed
to the expression of diverse opinions from members of the PH Community.
We feel strongly that
free and open discussion regarding PH will assist in the generation and the
refinement of new and existing ideas. To that end, we provide the opportunity
for anyone from the medical and patient communities to submit editorials,
letters to the editor or short articles on a PH-related topic. We will be
encouraging opposing points of view. Areas may include treatments, causes,
advocacy, disability, etc.
|
