A Patient's Story Continues
First was LVRS - Now here is my Lung Transplant Story
See also "LVRS
(Lung Volume Reduction Surgery)
A Patients Story"
Gee I’ve been busy, I got new lungs on June 28th,
2004 and have been busy ever since! I don’t get a lot of things done just
because I’m so busy doing the things I haven’t been able to do for the
last couple of decades.
Having been disabled with COPD since 1989 my life has
been turned upside down one more time…this time for the better. As I
said, I was disabled in 1989, and went through the usual bad times…
denial, anger, self-pity, etc. and finally acceptance. It took me about a
year to arrive at the acceptance phase. I sat around and did very little
for a while until I woke up one day and decided that this is my life and
I’m the one making it pitiful. I got started in a rehab program and soon
became addicted! Rehab is not a cure by any means but it will help to
maximize ones potential. I even found that on some of the days I felt the
most short of breath I had some of my best workouts. At times the simple
act of exercising will open ones lungs and make one feel lots better. Try
it, you’ll like it!
Once I got into the exercise habit, I got so I could
get around a whole lot more and started fishing my favorite fishing spots
on the Missouri river. During the hottest part of the year I fished after
dark…..sometimes from sundown to sunup. The good part of being disabled
is that no one can tell you which hours you have to sleep.
In 1994 I started to have more frequent and more
severe episodes of shortness of breath. After months of feeling nearly
totally congested and being severely limited in my daily life (even more
than usual) I asked my primary physician (who is a critical care physician
in the pulmonary department at my local clinic) to find me someplace to
get a second opinion. He set me up with Dr. Zach Morris, a fine doctor
with problems of his own. Dr. Morris has MS, and only worked three days a
week, and half days at that.
Dr. Morris and I had a bit of a rocky start; I made
the remark that I thought that most of my lung problems stemmed from a
lifetime of work in the refrigeration business and my exposure to Freon,
among other things. He disagreed and when I mentioned that firefighters
have the same problem, he stated; “That’s why they’re firefighters and I’m
the doctor!” I went straight to the State Library and looked up several
articles on the subject, copied them and presented them to Dr. Morris the
next time I saw him. I insisted he read them. He did, and became a
believer. We developed total trust between us after a short while. It
didn’t take Dr. Morris long to decide that I needed something more than
was available locally. He called the University of Minnesota Hospital in
Minneapolis and arranged an appointment for me. It was suggested that
they just run me through their transplant evaluation process and then make
a suggestion as to the course of treatment.
After a few days of poking and prodding the
pulmonary doctors finally decided that I would benefit from Lung Volume
Reduction surgery. I’d never heard of it but figured anything was better
than what I was living with.
I met with the surgeon, Dr. Mike Maddaus, and was
told that I ‘scared’ him. I informed Dr. Maddaus that I needed a chance,
not a guarantee. Dr. Maddaus told me he had to talk the board into doing
the surgery because I had boullous emphysema and did not fit their
criteria for LVRS. I had the surgery on February 1, 1995. Two weeks in
the hospital, a trip home and another week in a “swing bed” in a local
hospital, another week at home and then right back to rehab. I can’t say
enough about rehab, it’s a life saver. I did a 90 mile round trip, three
days a week, for two years to do my rehab. I finally bought a cardio-glyde
and later a stacked weight machine.
The LVRS was a great success, though it is not a
cure. It got me off O2 during the day, though I still slept with 2 liters
of oxygen. I was in pretty good shape for a few years and did a lot of
things that I hadn’t been able to do for years, but after about three year
I began to experience shortness of breath more often and by the five year
mark it was once again severe.
By that time Dr. Morris had moved to Detroit, where
he practices and teaches at a clinic run by the Henry Ford Hospital. My
new pulmonologist was Dr. Ravi Shergill, who looked at my x-ray for about
a minute before he told me that I needed a transplant! Not really news to
me… I told him to call Dr. Christine Went at the UofM hospital and see
what she had to say. I went to Minnesota (the hospital is now called
Fairview-University Hospital) and did a short version of transplant
evaluation. Dr. Wendt informed me that yes, I did need a transplant, but
as I was over the age of 55 I couldn’t get a double lung transplant at
that facility. They only do doubles to age 55 in that Region. I wound up
being turned down at four transplant centers because of ‘prior pluredisis
(sp). They were afraid of the adhesions between the lungs and my rib cage
caused by the LVRS and also by a talc infusion done to plug an air leak.
I finally was invited to Barnes-Jewish Hospital in St. Louis, Missouri for
evaluation. After four days of extensive testing I was accepted to their
transplant program. I was told that it would be 18 months to two years
until I would be transplanted. I was also told that I needed my gall
bladder removed as it was full of stones.
That may seem like a long time to wait, but the wait
is worth it. I would suggest getting evaluated sooner than later. One
must be strong enough to survive transplant to even be considered for the
procedure. That may seem strange (well enough to be transplanted), but
you don’t want to wait so long that your other organs begin to be damaged;
you must maintain a semblance of fitness.
In October of 2003 I received a phone call from the
transplant office at Barnes-Jewish, they told me that there was no one of
my blood type active on the list at that time and I could come down and go
active. All of a sudden it was getting real! I got to St. Louis the
first week in December and went through a series of tests. I had a high
alkaline phosphate level in my blood tests. It turned out to be five gall
stones that were missed when I’d had my gall bladder removed after
transplant evaluation, I had a spleenectomy done locally. Lots of things
go into preparations for transplant!
My sister volunteered to be my caregiver in St. Louis
(everyone should have a sister like mine)! We arrived in St. Louis on
Easter Sunday, 2004. We moved into the Towne Place Suites in Fenton,
Missouri. They are located about 15 minutes from the hospital, and it is
far quieter than the city. We really liked it out there. I had more
tests done and another angiogram, this one showed a 50% blockage of an
artery on the right side of my heart. The cardiac physician told me at
the time that if it were up to him he’d do nothing at the time. The
transplant team at first decided to bypass the heart at the same time they
did the transplant, and then changed their minds. Dr. Alex Patterson
decided that, as I had adhesions and my lungs would probably have to be
scraped off of my chest wall, there would be excessive bleeding caused by
blood thinners administered during and after the bypass surgery. Good
call Dr. Patterson! I needed four units of blood during surgery and three
more in the next week. Luckily I wasn’t disqualified from transplant due
to these “little” problems. The only thing that ever worried me was that
I wouldn’t ever get a chance to get the transplant.
My sister had to remain in St. Louis an extra week,
due to the angiogram, before returning home to work. She works with
handicapped kids in the local school. Then the hard part began. Waiting.
On the night of June 26th, 2004 I was in
the copd-international chat room talking (bs-ing?) with those good people
when I got the call. I understand there was quite a stir when I said, “I
gotta go, my lungs are here!” I know my heart rate increased quite a bit;
it took about thirty minutes before I settled down enough to think
straight. Guess it worked out, as I drove myself to the hospital. I got
there a little before 10 pm. At about 11 the nurse came in and said, “Mr.
Woods, you have a date with a knife!” Ah….music to my ears.
Dr. Brent Myers did the surgery, which lasted from
1am to 10 am. The transplant team called my sister before he started, and
told her it should take about 3 hours. They called after three hours and
told her they were done with the first lung. Seems they had a problem
scraping my old lungs out!
It was raining in North Dakota and there was some
doubt as to whether or not they could get my nephew’s plane off the grass
runway at the farm, so the pilot flew it off and to a nearby hard runway.
They left on the morning of the 28th, and the party included my
90-year-old mother. They still ask about my Mom when I check in down
there, she’s a trouper. There’s 150 miles of corridor in the hospital
complex and Mom claims she and Carol were only lost on about 12 miles of
it. Once she got into hiking shape she amazed all of us. She returned
home just before I got out of the hospital.
I don’t remember a thing until I woke up in ICU.
I’m told that they woke me up in recovery but I think they’re lying to
me! How would I know, I hallucinated all the time I was in the ICU and
for most of the time I was in the OU (observation unit). Strange stuff
going through my head in that place! When I came to in the ICU I was
still on the ventilator, the second day in there they removed the vent and
replaced it with a canula and 6 lpm of O2, by 6 pm that day I was down to
2 lpm; quite a change from the 6 lpm I’d been on two days and two new
I was out of the OU the third day, it’s now July 1st.
Into a private room; the view is not so nice but I didn’t complain,
I was getting closer to the front door!
Oops, Saturday the 3rd I had a setback, I
developed a GI bleed and took step back into the OU, dang the front door
is getting away! Another setback on Monday; just a little arterial
fibrillation. Meds fix it right up. Well, not right away, took ‘em two
days to catch it on an EKG. Finally got the meds right on Tuesday and
have had no trouble with that since. Also got a second chest tube out on
Tuesday the 6th. I’d made my sister take a picture of the
first one removed…she toughened up after awhile.
Thursday the 8th, a good day and a bad
day… The final chest tube had come out yesterday but I didn’t feel so
good this day, couldn’t catch my breath and my walks down the hall
shortened up quite a bit. The doctors mentioned rejection and then took
me downstairs for tests….good news! Pneumonia! Might not seem like good
news to the average Joe, but, for the newly transplanted its way better
Friday brought a low heart rate and an adjustment in
meds, seemed to work. Saturday was a much better day, geez, two weeks in
this place already. Lot of people getting out after ten days. Heart doc
gave me a good report. Ah progress. This day Carol told me I’ve received
130 e-mails already, mostly from my friends at copd-international. Sure
helps. The e-mails have come from 21 states and 2 Canadian Provinces.
Thanks guys. I also got snail mail, thank you old fashioned types too.
The e-mail count at the hospital finally topped the 200 mark. The patient
services department told me they were exploring the possibility of
providing lap-top’s for their transplant patients. What a great deal that
Another setback on the 13th of July. My
‘crits’ were low and got two units of blood, surely felt better after that
was done. Guess that explains why my pt was so tough!
My God! Does it never cease? The air conditioner
in my car quit! The good news today was that I had enough strength to cut
my own broccoli. ;-)
It’s now the 16th of July and I finally
learned a new trick. I learned I can ‘blow’, you’d think that comes
natural but after 16 years of pursed lip breathing it no longer is
natural. The respatory therapist told me it takes a month to form a habit
and it will take at least that long to break the same habit. Anyway, it’s
a treat to just blow it all out and empty those lungs in nothing flat!
Whee! Oh yeah, I also caught some kind of intestinal bug, so now everyone
who comes into my room has to use a gown, mask and gloves. Ha, ha.
Monday July 19th I was ready to be sprung,
and my sister had such a cold that it was decided that I should stay
awhile. I wouldn’t wish a sister like that on anyone! Got sprung on
Tuesday. Did not go straight home! We went to the chiropractor first
and I got three weeks of hospital wrenched out of my neck. Then we had
ice cream. Then we went home.
A few days later I had to go back to the hospital
for a week because I developed a pneumothorax, a leak in a lung. Got
another chest tube put in; this one in the back. They’re not comfortable
but it did the job. When I got out I had a little bout of rejection.
That was fixed with three days of solumedrol IV’s.
After that it became a marathon of re-hab in the
morning, blood tests and x-ray’s every Tuesday and Friday, and exploring
St. Louis and the area. Carol left for home early, so that she could
start school on time. The transplant coordinator wasn’t happy with that
move but we got permission from the doctors and my new friends in St.
Louis took up the slack on those few days that I needed help with such
things as transport to and from bronchoscopys.
My last test at Barnes-Jewish was on September 17th,
and I left for home as soon as it was done. I was half way to Kansas
City, on the way to North Dakota, when I got a phone call telling me that
I was once again in rejection. The doctor agreed I could have it treated
in North Dakota. Three days of solumedrol…ta da, no more rejection!
Went pheasant hunting with my brother and a couple
of nephews the next week-end, now that is a pleasant outcome. Walked a
few miles and got some birds. Just being out there was a treat that few
can appreciate that much.
I’ve had some setbacks along the way and will
probably have more, but the bottom line is that I got my chance, I’m here
and I’m enjoying life more than I have in a long, long time.
Christmas with Mom was great, and being with family
and friends of course. I feel I have a future now, and didn’t feel like
that for a long time. To top it all off I also met a good woman.
Feb 14, 2005