Bill
is currently on the waiting list for a lung transplant. This is his journal
about his long journey.
The
situation I find myself in really started back about the time I was 10 years
old. I would steal cigarettes form my parents and sneak off somewhere
to smoke them. I had an easy time learning to smoke. When I
was finally caught, instead of insisting that I stop, I was told that if
I were going to smoke that it would be in front of my parents. Well
that was ok by me. I didn't even have to be sneaky about it anymore.
Well that continued and I kept smoking more and more. By the time
I was 17 years old and joined the Army, I was a real pro at smoking. The
Army even gave us cigarettes in our C-Rations. The Marlboro Man was
still a hero and the ads were all attractive. I never really noticed
any real change in my breathing until much later. I decided in January
1981, that I had had enough of the Army and got out and went into Civilian
Aviation. I became a Commercial Pilot and Flight Instructor as well
as achieving an Airline Transport Pilot Rating. Well that is out of
the question now. You have to be able to breathe to fly as well as
anything else. Then November 21, 1988, my first wife died and I got
out of aviation. I move to Springfield, OR and became a Truck Driver.
I drove truck (smoking more all the time) from that point on.
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In
September, 1988, while driving our truck (my new wife and I owned) I was
heading for Spokane, WA from Tacoma, WA. It was early in the morning
(around 2 AM or so) I had just left the rest area where I had spent the
night and at the top of the Snoqualmie Pass I-90 when I found that I was
having great difficulty breathing. I stopped the truck and after a
time realized that I was getting worse I decided that I had better
call for help. I had difficulty finding the cell phone, which was
right where it always was. I finally found the cell phone and called,
not 911, but my wife who was at work in Canby, OR. She said "call
an ambulance" and I said "how do I do that?" As you
can tell I was very disoriented. She told me to call 911 and I did.
The 911 Operator, some how, was able get my wife on the phone while she
was talking to me. I do not remember giving her the phone number.
Well, in about 11 minutes the Rescue Vehicle arrived. While the were
in the process of getting me into their vehicle the ambulance arrive and
they put me in it. I was taken to the Cle Elum Clinic where Dr. Anderson
examined me and said we can't handle him here. He has had a Heart
Attack." They put me back in the ambulance and took me to the
Ellensburg Hospital. At the hospital they began treating me for a
Heart Attack when they found that I had double pneumonia. When I woke
up, five of my family, including my wife, were at the foot of my bed and
the nurse was calling my name. Well on the 2nd or 3rd day, they informed
me that not only did I have double pneumonia but I had two different types
of double pneumonia. Anyway I spent 6 days in the hospital, 1 month
off work and had stress tests etc. no Heart Attack. I went back to
driving truck. In April of 1999 my wife began going with me on the
truck. I finally quit smoking after reaching 4 packs a day and my trip to
the hospital In Washington. Quitting was the hardest thing I've done.
Don't get the idea that I just up and quit. I tried everything and
nothing worked until I finally realized that if I didn't quit, I was going
to die and with the help of Zyban and the fear, I finally quit. Well
I'm not out of the woods yet on the dying issue. Things were going
along pretty well and then in April of 2000, while visiting friends in Orland,
CA. I came down with pneumonia again. My wife took me to a clinic
in Chico, CA I was treated and released. We then decided to
find a doctor in Orland, CA That way we would have our friends to
stay with while going to the doctor. That is when I met Jim Walker.
In August 2000 we decided to sell our truck and go to work for someone.
I was running flatbed and it just became too physically demanding for me.
In September 2000 we sold the truck and I went to for the May Trucking Company
in October 2000. My wife continued to go with me. Now I was
driving a brand new truck with all the goodies and pulling refrigerated
vans. This was much easier physically. On March 8, 2001 while
on our way to Denver, Co. I pulled over to do a safety check.
I started toward the rear of the 53 ft. trailer and found that I had to
stop about half way and catch my breath. I finally finished the safety
check and I had to stop and catch my breath again. We were about 10
miles from the Evanston, Wy. Port of Entry. By the time we pulled
into the Port of Entry, I could not get my breath. This is the second
time a cell phone saved my life. My wife called 911 on the cell phone
and the ambulance came. When the ambulance got me to the hospital
and into the emergency room, the doctor on duty examined me and decided
that I should remain in the hospital. He also told me to get the H____
out of Wyoming and stay out (he was referring to the altitude). After
chest x-rays, blood tests and the dreaded blood gas test, I was admitted
and the breathing treatments, antibiotics and other pills and injections
began. I was treated for a bacterial infection in the lungs.
The oxygen that was administered in the ambulance continued (thank God).
The doctors, nurses and others at the Evanston Hospital were very nice and
treated me like someone special. After four days in their care, we
left the hospital, with portable oxygen, and returned to the truck at the
Port of Entry. By that time the truck batteries were dead. We
had to call for a service truck to come and jump start the truck.
It is cold in Wyoming in March and that did not help the breathing problem.
We finally got the truck started and headed for Layton, Ut. Once we
got to lower elevation, my breathing improved slightly, but I found that
I still needed the oxygen. I tried to continue working but after two
weeks and another trip to Denver, Co. (right through Evanston Wy.)
We ended up staying quite a while in Denver. Then We went to Los Angles,
CA. with a load. We finally got unloaded and sent north. We
dropped the empty trailer in Woodland, CA. and went on north to Orland.
That was my last trip in a truck to this point.
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I did not improve. At that point, I concluded that I needed to go to my doctor. The May Trucking Company Dispatcher sent us to Orland, Ca. (The May Trucking Company was helpful throughout) I went to see my doctor, Jim Walker P.A.-C, at Doctor Tye's Office in Orland. Jim put me on antibiotics and Prednisone and sent me home (my friends in Orland). He had already arranged an appointment with a pulmonologist, Dr. Wilms.
When I went to my appointment with Dr. Wilms, he sent me for a lung function test The Lung Function Test revealed that I only had 14 % Lung Function and that my O2 stat was only 80. At least 90 is needed for normal activities. Dr. Wilms told me to go signup for disability, as I had a great amount of emphysema and needed a lung transplant. So the process was underway. I was put on oxygen, enrolled in a pre-op rehab program and scheduled for a walking test. After the walking tests, I was put on Oxygen 24 hours a day. I began my rehab on June 9, 2001 at Enloe Hospital in Chico, CA. See the slave drivers below.
Just kidding. Heather, Jan, Dorothy and Hillary were very nice and assisted in every way. Rehab was for six weeks, twice a week. When I started rehab I would walk on the treadmill for only five minutes and ride the bike for only five minutes. By the time I finished rehab I was able to walk 25 minutes on the treadmill and ride the bike 15 minutes.
On Friday the 13th, 2001, I received a call from Celia Rifkin the Transplant Coordinator a UCSF (University California San Francisco). She gave me an appointment for September 25, 2001 to have my first meeting with the Transplant Team. On the September 17, 2001, I found myself in the hospital having difficulty breathing again. On the 20th I began to have trouble swallowing and my voice decided to leave. I had the appointment the 25th with the transplant team and I made up my mind that I would make it no matter what. I made the appointment and got the process started.
Dr. Golden expressed a great deal of concern about my being hoarse. I went home and was put back in the hospital September 28, 2001. On October 4 an NG Tube was installed because I could not swallow. The NG Tube was removed October 8 and a feeding tube was installed in my stomach October 10. I returned home October 15, feeding tube still installed and hoping this clears up. During the stay in the hospital, I had an MRI, CT Scan of my brain, CT Scan of my brain stem and of my neck and lungs. The good news was they didn't find anything serious. The bad news was, I still couldn't swallow. During this adventure I succeeded in loosing 28 lbs. Sure would be nice to be able to eat again. Well, I got through Thanksgiving and Christmas Dinners by staying out of the Dinning Room and consuming my formula. When I went to my appointment with the neurologist on December 26, 2001 I was scheduled for yet another MRI. It is now February 25, 2002 and I just found out that the State never received the request for the MRI so now I must go through the procedure of getting it approved again. That was a waste of eight valuable weeks. March 4, 2002 I got word that the State approve the MRI and that it is scheduled for the 12th. Well, I had the MRI and nothing came to light. I was given a Tension Test which did nothing. Then my wife complained about me jerking violently while asleep and the doctor gave me a medication for it. Well, the next morning my throat felt different so I thought I might try to eat something and a A MIRACLE HAPPENED, I can eat again. June 21, 2002, I reported to UCSF for Lung Function Tests. That was a long day. June 27, 2002, I returned to UCSF to meet with the doctors that will be making the final decision. Now the Heart Doctor wants a Heart Catheterization and the surgeon wants me to be seen by an ENT. Dr. Golden wants a swallowing evaluation done. The team wants assurance that my swallowing will not be a problem. I can sure understand that. I need new x-rays and CT Scans and still need to be seen by a social worker. I underwent the swallowing evaluation including barium swallow with x-ray and video. I'm happy to report that that went well. I have an appointment with the neurologist, Dr. Rothfeld on July 31, 2002 he will be the one writing the letter about my swallowing not being a problem.
Well, it's September 17, 2002 and I had my appointment with Dr. Sprague the Ear Nose Throat Specialist. He said that my right vocal cord is working at about 25% but that the left one is compensating nicely. My epiglottis is working fine and that he does not see a problem concerning the Lung Transplant.
You know there is always someone that a person, for some reason, automatically depends on to get these test and procedures arranged and accomplished. Well, in my case that person just happened to be Melanie Laffins at Dr. Wilms office. I have depended on her a great deal and will be for quite some time to come. I hope she knows how much I appreciate her.
I received a call from UCSF that they will be contacting me to come to San Francisco to do yet another swallowing evaluation. The three reports weren't enough to satisfy them.
Well, September 28, 2002 I ended up in the hospital with difficulty breathing. After six days of major doses of steroids and antibiotics I was sent home using 120 mg of Prednisone and 250 mg of antibiotics. The Prednisone will taper off each 3 days. I have found that taking a shower is one of the hardest things I have to do. Shaving is another. Well shaving is no longer a task.
Well I called UCSF on
the 8th of October about getting the swallowing evaluation scheduled.
Now I wait for them to contact me again.
October 10, 2002, I just talked to the pulmonary testing folks at UCSF and
found out that my lung function in June had increased to 20%. That
is what quitting smoking and beginning exercise etc will do for you.
I realize that 20% is still severe but it is a little better for my confidence
in making it to surgery.
October 10, 2002, I received a call from UCSF asking me to come to San Francisco to do a modified Barium Swallow Evaluation. They just want to make real sure.
I
know these are some pretty ugly pictures but then there isn't anything pretty
about what smoking does to your body.
October 10, 2002, I received a call from UCSF asking me to come to San Francisco
to do a modified barium swallow evaluation. They just want to make
real sure. Well, on October 14, I got a call from UCSF and they now
want me to have a complete barium swallow evaluation done at UCSF on the
23rd.
On October 17, 2002, I went to a follow up appointment with Dr. Wilms and
got a flue shot while I was there.
October 23, 2002, I went to San Francisco this morning for the swallowing
evaluation and a meeting with the Social Worker. Everything went very
well. One step closer to getting on the list.
Still on the 23 got home from San Francisco and received a call from Celia
the Transplant Coordinator and she informed me that she had made an appointment
for me with Dr. Golden for December 5, 2002.
October 10, 2002, I received a call from UCSF asking me to come to San Francisco
to do a modified Barium Swallow Evaluation. They just want to make
real sure.
I received word from the Transplant Coordinator to go ahead with the Heart
Catheterization. I went to my appointment with Dr. Wilms on the November
6, 2002 and he ordered the procedure.
November 12, 2002, I just found out that the catheterization has to be approved
by the state so we will have to wait for that.
November 20, 2002, I found out that the state has not approved the Heart
Catheterization yet
October 30, 2002, 11:30 am, I just received a call from my brother's wife
telling me that he has just been put in the hospital with Myeloid Leukemia.
It seems that no matter how bad things get they can be worse.
November 1, 2002, Jon has been transferred to the University of Louisville,
KY Brown Cancer Center. November 2, 2002, Jon will be starting
Chemotherapy today. The
doctors office was not able to get any more information than that.
November 28, 2002, just got home from the hospital. I went to the
doctor the 21st and he put me in the hospital with breathing problems again.
While I was there Dr. Magnusson did the Heart Catheterization and found
that I had on artery that was almost plugged. He installed a stent
and put me on medication. I am home now and will be going to San Francisco
December 5th to meet with Dr. Golden about the Lung Transplant.
December 5, 2002, I had my meeting with Doctor Golden today.
The swallowing is no longer an issue. Now the Heart Doctor has to
review the Catheterization Results and I should finally be put on the waiting
list.
December 9, 2002, I was informed that I needed to meet with the New
Chief Surgeon as the old one had resigned. I was given and appointment
for the 19th of December, 2002.
December 13, 2002, I'm in the hospital again. Unable to breathe.
December 18, 2002, Home from the hospital. I went to San Francisco
and had the meeting with the new Chief Of Surgery (Dr. Charles W. Hoopes)
on the 19th. He now needs to review the Heart Catheterization and
Swallowing Evaluation and then there will be a meeting for placement on
the list. (Still not sure).
I was hospitalized again December 26th, 2002, for exacerbation of COPD.
I got home the 28th. Then right back in with pneumonia on January
6th, 2003. I got home January 11th.
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January 14th, 9 AM, just got notified that I have been placed on the list. FINALLY! My wife and I both have pagers that ring on the same number. Now we wait.
Went
to the Emergency Room on the 12th of February, 2003. Exacerbation
of COPD. They got that under control and I got home again on the 18th.
Went to Dr. Wilms office on the 28th of February and left there with no
changes. Dr. Wilms tells me that things are not going to get any better
until I have the transplant. Went to my appointment with Dr.
Magnussan and found out that my cholesterol is 253. He put me on 10
mg of Zetia a day and wants to see me in 2 months.
Went to San Francisco for my appointment with Dr. Golden. Met with
Dr. Golden and Nurse Adrian.
They sent me to have blood drawn for type and DNA and some other stuff for the matching computer. Adrian is a transplant coordinator. I am now on the "hot list" which is the list that you are put on when you are completely ready for transplant. So now it can happen at any time.
March
11, 2003, I stopped taking the Klonopin. March 12. 2003, I stopped
taking Prednisone after tapering down to 5 mg for 3 days. I have started
walking again after not being able to for almost a month.
At 11 AM Sunday the 16th of March, 2003 while setting at the computer and
chatting with my sister, I passed out. My wife took me to the hospital
in Chico, CA. The doctors had CT Scan, Chest X-Ray, Ultra sound of
the Carotid Arteries, Echocardiogram, EKG, EEG and Blood Tests performed.
Everything was normal except the EEG which has not been read yet.
The doctor thinks that my irregular heart beat may be the cause of the passing
out. I have also been having headaches which the doctor thinks was
caused by the Zetia (cholesterol medicine) so he told me to discontinue
it. I was sent home on the 18th of March, 2003 wearing a heart monitor.
I turned the monitor into to the hospital on the 19th.
March 24, 2003, well, I had to start taking Prednisone again (10 mg),
started taking the Klonopin again. Had to go up to 4 liters Oxygen
and 6 during activity. The doctor says it won't be long and I'll have
to go to liquid oxygen. It seems like I have more trouble all the
time now. Jim Walker had me go up to 40 mg on the Paxil. Maybe
that will help.
I ended up in the hospital again on the April 7, 2003 and went home the
9th. I am now on liquid oxygen 4 to 6 liters continuous.
So now I am here sucking up 4 to 6 liters of liquid oxygen 24/7 and wondering if I am going to make it. The bad days are getting closer together all the time and the trips to the hospital have increased. This is sure not a very convenient situation for anyone. There are times when you wish you could just go to sleep and not wake until whatever is over.
( JUNE 2003 Bill got the call and successfully received his new lungs.)
GETTING
SICK
REALIZING I'M SICK
GOING
TO THE DOCTOR/REHAB
TRYING TO GET LISTED
FINALLY LISTED: NOW WE WAIT