My Lung Transplant Experience
Robert A. Hall
October 19, 2019
On December 31, 2005, I developed a bad cough. I have
it still. My PCP, a Nurse Practitioner, tried several things, including a chest
x-ray. In May she sent me to a pulmonologist at the University of Wisconsin
hospital. He ordered a CT scan. The results came back in June, “early interstitial
fibrosis.” Unlike most people, I knew what that meant, because my mother had
died from pulmonary fibrosis in 1995. She was dead about four months after diagnosis.
(Probably why I have it, it clusters in some families.) The pulmonologist said
he didn’t think I was at high risk to develop full-blown PF…but I did.
I saw him for several years. In the meantime, in 2008,
I had moved from the association I was managing in Madison to take over the American
Association of Hip and Knee Surgeons in Rosemont, Illinois. (Both had an 80%
growth in membership while I was there, and more than doubled cash reserves.)
We bought a small condo in Des Plaines (which we took
a tidy little loss on when we had to sell), but thankfully kept our big condo
in Madison, WI. (The VA here was the only one doing lung transplants at that
time.)
Pulmonary fibrosis kills more people than breast
cancer, but BC gets 80 times as much research funding. It plateaus for a while,
then takes a step down. It never gets better and eventually you hit the ground.
There is no cure, except for the fortunate few who get and survive a lung
transplant. (50% of lung transplant patients die in the first five years.) If
you have PF, I suggest you get in touch with the Pulmonary Fibrosis Foundation (https://www.pulmonaryfibrosis.org/).
There is a list of Centers for Excellence for treating PF. I think separate
from them is an email support group, though I found it a little “woe is me” winey
for my tastes.
In 2010, mine took a big step down, and I had to go on
oxygen (O2). For the next three and a half years, I had an oxygen concentrator
at work and at home (my wife joked she could find me by following the hose.)
And I pulled an oxygen tank behind me to work, meetings, conferences, out to
dinner, Scottish games, Marine Corps Balls, etc. I’m a Marine Vietnam vet and a
former 5-term Massachusetts state senator, another long story). I missed work
for doctors’ appointments, my transplant evaluation, etc., but never because I
felt too sick to work.
In the summer of 2012, my pulmonologist suggested I be
evaluated for a lung transplant. I spent four days at UW, meeting with a surgeon,
Dr. Jim Maloney, social workers, psychologists, etc. Apparently I passed
because they put me on the list, but I was still low.
There is a “lung allocation list.” In the past, people
got on the list in the order they applied. Healthier people were getting lungs
while sicker ones died waiting. They changed that to look at several factors
and determine who most needs a lung at the time. I went back to work.
Soon after that my doctor suggested I transfer my care
to the VA, to have everything under one roof. The VA & UW share doctors,
including Dr. Jim Maloney, who eventually put a lung in me, saving my life. I signed up with
the VA.
In the Spring of 2013, my PF got worse. I was on 10
liters of O2 just walking around. The VA confirmed this, and after talking it
over with my wife, I gave my six-month notice in May for November 30. (An exec can’t
walk away after two weeks!) They started a search for a new exec. I tried to
hold AAHKS and myself together. It was a challenging time.
They found an excellent one, who has taken AAHKS to
new heights, which pleases me. Not all my associations thrived after I left. He
took over October 1, though I was on the payroll as an advisor until November 30.
(More of a kindness to me than a help to him!)
We had sold the Des Plains condo in June and I was
living in a long-term hotel suite. I drove home on October 2 and the VA
evaluated me again on October 3. My resting oxygen rate had dropped below the
safe level without oxygen, so I was put at the top the transplant list. They
said I would likely get a lung in three months. You never know. You are waiting
for the right person to die. Meantime I went to pulmonary rehab at the VA three
days a week and tried to help the new guy by phone.
At 2:45 am on December 23, 2013, I was awakened by a
call from one of the nurse transplant coordinators at the VA hospital. She
said, “Mr. Hall. We’d like you to come in to the UW hospital. We thing we have
a lung for you.” UW and the VA are attached, and transplants are done in the
larger UW operating rooms. Some patients have a couple of “dry runs,” as they
get there and the lung is not good or right for them.
I said, "Show time." My wife had big eyes and was a bit discombobulated. I
was calm. I went to my computer and sent a prepared email to my list (family,
friends, etc.) announcing I was going in. It was headed, “Enemy on island.
Issue in doubt.” Heading the email, I said, “extra credit if you can ID the
quote.” Two people on the list did!
We went to the UW, met Dr. Maloney, they took me in
and put me under. I was in a coma for Christmas. They woke me a day or two
later and had me walking in another day. The drugs are bad stuff. I was seeing
things climbing the walls. At one point, my granddaughter, Britnye, was
standing by the bed. When I opened my eye she, of course, wasn’t really there.
I transferred to the VA on New Year’s Eve. My CAN was
Annie, who is now a floor nurse at the VA. They served us steaks which we
couldn’t cut. A nurse, Ashia, came around with a real knife and cut them. Mine
was very red in the middle, and I couldn’t eat it, so she made me a cheese
sandwich with cheese she had brought in for NYE. She has left the VA to raise
kids, but we are still friends.
I was out of the VA on January 4th. And
breathing “room air.” Things were fine for a while, then I developed
complications. It seems every lung does, and they are all different. I was back
in four times in 2014.
On one visit I was interviewed by a volunteer for the My
Life, My Story project. (I rewrote my story!) I was interview 220. (Copy on
request.)
But I developed “slough.” (Say “Sluff.”) That is, a
buildup of dead cells from an injury where the lung was joined to my system. (I
received a right lung transplant. With PF you can live with one, other diseases
require a double.”) They said the only case they saw of slough this bad, they
had lost the patient. Soon I was back on oxygen. The docs and nurses thought
they were going to lose me. At one point, they sent me to palliative care. That
palliative doctor retired last year, and I’m still here.
I wrote a column for the local paper about how the VA
had saved my life. Ironically, it was published on the Sunday before Memorial
Day, and on Monday, I came very close to checking out. I was in ICU. My oxygen
level dropped to 90, the minimum, and I had 100% pure O2 running. Which you can’t
stay on, as it damages you. That was my third post-transplant hospital stay.
My nurse was Cory. I think he saved my life. He was
calm and collected. He knew what to do, who to call, and what to tell them.
Then he got out of their way. The doctor said I was barely making it, with no
place to go. He said they could intubate me with a breathing tube, but I should
know that many people never came off one. I said, “Let’s throw the dice.” They
called my wife, who came in, and went to work. It was more unpleasant for her
than me, as I was under.
When I woke up, I couldn’t talk, of course, I was
writing note to my wife, jokes to tell the nurses, etc. Of course, my hand
writing is bad enough now I sometimes can’t read my notes the next day. Being
groggy for the knock-out drugs made it totally unreadable for two or three
days.
I was reading, and doing okay. The nurses still comment
on that. On Saturday, the antibiotics had caught up with the infection, and
they were able to pull the tube. The doctor told me of the hundreds of patients
he had intubated, I handled it better than anyone. I said he could thank Parris
Island. I’d been under stress before. I didn’t wake up in a panic trying to
pull the tubes out. I just dealt with it.
From then on I got better, though I was back in July 4th
about four days. (Holidays seemed to be a problem that year!) When I got out on
July 7, 2014, my FEV average for the day was 0.91. FEV (Forced Expository Volume)
measures the amount of air your lungs can expel in one second. I take three
readings in the morning and three in the afternoon, so that day I was putting
out less that a liter. For the month of October, 2019, my daily average has
always been over three liters!
By August I was back off O2 and haven’t needed it
since. I get winded with a little exertion like climbing the stairs, making the
bed, etc. I still cough a lot. In the warm months, allergies put mucus in the
lung. In the cold months, the cold air irritates it.
My doctors, nurses, CNAs, RT, PT, etc. at the VA have
all been superb.
A lung transplant is a life-style change, make no
mistake. I need about nine hours sleep a night, and I have an hour and a half
medical routine every morning and again every night. I take pills four times a
day, though they are down to about 25 a day. Three kinds are to suppress my immune
system to prevent rejection.
I use a spirometer twice a day to get the highest FEV
numbers I can. That takes about 30 minutes each time, and produces coughing. I
use a nebulizer to inhale medicine into my lungs twice a day. That takes at
least 30 minutes, sometimes longer. I use an antibiotic in my nebulizer 16 days
on, 16 days off, and that takes longer. That’s in addition to the Albuterol to
keep the airways open and saline solution to break up the mucus. I take my
weight every morning (161.6 lbs. this morning). The less there is of me, the
less the new lung has to work. I take my temp and blood pressure twice a day. I
take my blood sugar three times a week. I use two nose-sprays for allergies twice
a day. I use three different eye drops, two for pressure probably not related to
the lung. I drink a nasty drink every night. I’ve had other things I had to do.
I take Metamucil twice a day to keep things moving and
I used a Neti Pot twice a day. They didn’t tell me to, but approve. I’ve only
had two colds in 15 years. This is good, as the three things that tend to kill
transplant patients are infection, rejection and tumors. The tumors because we
are immune suppressed and can’t do chemo. So, if I spontaneously mutate a
cancer cell, it’s likely so long. I have lost two friends. One, John Payne, a
black Marine, got a lung five days before me. He died in June of 2016. We got
very close to him and his wife Donna, and drive to Louisiana to visit the month
before we lost him. We are still close to Donna and consider her family. The
other, Joe, got a lung five months before me. He was doing great, but developed
cancer and was gone 15 months post-transplant. But I have met vets who are ten
or 17 years out from their lung transplants.
You have major diet restrictions as well. Meat has to
be well done. No salad bars or buffets. No more than one drink a day. Lunch
meat in the fridge more than three days must be nuked. And so on.
In February of 2017, I felt better and looked for a part
time job. I got on as a security officer with a good firm, telling them I could
work 20 hours a week. Back in Uniform at 70! But you didn’t know when you were
working until the Thursday before, the hours were odd. And being a Marine, I was
too reliable. They’d call and ask me to come in that afternoon or the next day,
when I wasn’t scheduled, and I’d say yes. There’s a labor shortage around here
and pretty soon they were scheduling me for 34 or 37 hours a week, more than I can
do. I protested to the scheduling sergeants a couple of times, then I quit.
And tickity-boo a part job opened up for a
writer-editor in the My Life, My Story program at the VA. I was hired
and started in July of 2017. In addition to interviewing and writing veterans’
life stories for their families, (254 to date), I have also other duties. I edit,
process and out stories written by volunteers. If their vet is still in the
hospital, I go up and read it back to him or her for corrections and changes. I
do call backs for vets who haven’t approved their stories. We try to write in
the vets’ own words, in the first person. They can take out or put in anything
they want; it’s their story. (Sometimes they take out the best lines, like the
vet who threw his wife’s boyfriend out the second story window. He didn’t want
that in!) We shoot for 800-1500 words, but the 95-year-old WWII Marine I
interviewed talked for three hours and 39 minutes. His story was 7468 words. I sent
him copies of the full version for his family, then cut it for the computer records,
but I didn’t get down to 1500 words!
I have gone out and spoken about the program, or gone
to vets’ homes on my own time.
I have two co-workers, my boss, Thor, who is
incredibly patient and nice, and a full-time writer editor, Seth, who is a lot
more experienced than me and always helpful. I have had jobs that paid more,
but never one that consistently brought me such joy.
I now walk with a cane due to bursitis in my hips and
leg pain, but don’t think that’s related to the lung. Due to the sleep needs
and the medical routine, I get up about 4:45 am and am in bed at 7:45 pm on
days when I’m working.
And, as we Marines say, I “continue to march.”
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