A 2015 LVRS Story
In the beginning
I was 33 when I went to the Doctor because I could not
walk across a room without having to stop and catch my breath. The pulmonologist suggested that I get signed
up on a transplant list which I did not do and quite smoking and get on meds
and exercise which I did. Things did get
better though, I was able to walk 3-5 miles a day just can’t talk while doing
it and kind of slow. I don’t know what
my Fev1 was back then.
New Doctor
In 2011 I changed jobs and decided to go on my husband’s
insurance Tri Care Prime. I asked the
Dr. that I was going to if he could refer me to a pulmonologist and he
did. So I started seeing a pulmonologist
at Portsmouth Naval. He ran all his
tests and said he thought I should go to Inova in Fairfax Va and sign up on the
transplant list just in case I would need it in the future. I asked him about
LVRS and he said he did not think I was a good candidate for that.
Going to Inova
I did finally make an appointment for 9-24-2913. The Doctors at the Inova Transplant center
said I was not ready for a transplant but they thought I was a good candidate
for a Lung Volume Reduction Surgery.
They told me all about it, all the risks and the benefits. So I went home and thought about it and
researched it. It was hard to find
anything recent on it. But I kept coming
back to the thing about it only being good for 5 years but I could not find out
anything on why it was only good for 5 years so I kind of shied away from the
whole thing because of the 5 year thing.
I wasn’t sure If after 5 years I would be worse and then have to have a
lung transplant or would I be the same as I was before LVRS.
Procrastinating
So I decided I would just exercise more and make myself
stronger. That was actually not going so
well. It was getting harder to go
places, I no longer wanted to go to the store and when I did, drop me off at
the door and give me a cart. It was hard
walking from my car to work. I exercised
on my treadmill every day mostly with oxygen.
Coming to my
senses
Well now I was back to thinking, 5 years of breathing and
living somewhat normal might be worth whatever comes next and maybe by then
there will be more options.
1st
time in Rehab
Around March 2014, I started rehab for the first time, I
went 2 times a week for about an hour each time. Working on 5 different machines, 3 for legs
and 2 for arms and then lift light weights and then talk about ways to best
deal with COPD. Not sure how many weeks
that was for but I think about 12 weeks.
Still
Procrastinating
Still able to live busy life slow and with lots of help
from my husband
We were coming up on summer by then and we always have
kids and grandkids come to visit and we love to ride our electric bikes on all
nice days so we don’t want to mess with that.
I only wanted to have surgery in the cold months so we don’t miss any
good bike riding days. Then it was
coming up on Thanksgiving and Christmas and we are really big into the holidays.
Coil Study
September of 2014, I ran across a website telling about
Duke having a coil study so I emailed the lady and asked if they were still
accepting people and she said yes. I was
so excited to say the least. She said send
her all my records ct scans, pfts all that kind of stuff so I sent that
asap. She said someone would get with me
within a few weeks and I waited and waited and right at 3 weeks I emailed her
again and asked about the coil program and she said they had a lot more people
participate than they had expected and they were now not accepting any more
people but she thought she could probably get me in a valve study program. Wow what a let down.
The wonderful COPD
Forum
I emailed the lady again after I thought about the coils
and valves and told her I was not interested in the valve but would be
interested in doing the LVRS there. This
is about the time that I found the COPD Forum and read Penny’s story of her
LVRS and she had hers at Duke so I thought that would be a good place to go
since I have read about Penny’s good experience there. I read all the stories on Penny’s blog and all
of them plus reading in the different titles on the forum gave me the courage
that I needed to keep going in the LVRS direction.
The lady emailed
me back and gave me the name and number of someone to call.
LVRS at Duke did
not work out
I was thinking it would go about the same way as Inova,
they would ask for my records to determine if I was even someone that would be
considered and then have me do rehab and all other tests. Well I talked to the new lady and she wanted
my demographics so I sent her all insurance information, Doctor’s name and
phone number, my name and address, phone number and Social and she already had
my records from sending them in for the coil program. So I called her to make sure she got
everything and to make sure that the Doctor thought that I would be a good
candidate for the LVRS and she told me that the Doctor would not be able to
tell me that until I did the Pulmonary Rehab.
I said, he has all my records, I would think he could decide if I am a
good candidate or even just make an appointment, I wasn’t asking for an
absolute answer just do I have a chance.
She said no he won’t answer anything until after rehab. I asked to speak to the Doctor and she said
he was busy. I said he can call me back
at his convenience. She said he won’t
talk to me until after rehab. I was
already disappointed with the coils and did not want to get started into doing
LVRS and then find out they don’t think I am a good candidate so I said I just
don’t think this is the place for me.
Back to Inova
December 30, 2014
I called and made an appointment and they told me
everything I had to do:
Appointment with the surgeon
Pulmonary rehab again
Heart cath Blood tests
Blood Gas
CT Scan
Meet with the
Surgeon
Met with Surgeon for first time in February 2015
He went over the good and the bad of LVRS. He was not rushed, he answered all questions
that we had. I was very comfortable with
him and he was very knowledgeable. He
said he had done 15 LVRS. That did not
seem like so many so I checked with the Cleveland Clinic and they were about
the same.
I called his office with some more questions and he
called me that night at home to answer my questions.
Blog on March 19,
2015
Started blog on COPD Forum
Penny had a lot of interesting points about Medicare
approval and different tests that they did on her but did not do on me like a
VQ. We emailed back and forth and talked
on the COPD Forum. It gave me a lot of
information and questions to ask the Doctor.
Almost there
April 5, 2015 meet with Surgeon and bring all tests
results.
Went to Portsmouth Naval for pre surgery tests like: EKG, blood tests that kind of thing.
A small snag
Surgery May 6, cancelled due to a UTI. Actual Surgery was
May 8, 2015 around 11am.
The surgeon called me the night before to see how I was
doing. I thought that was really nice. I asked him if he was ok and not drinking or
partying or anything apparently he does not party according to his nurses. Anyway he just laughed and said no he was not
drinking or partying.
The Surgery
They removed about 1/10 of the top of each lung.
I have about a 1
inch cut under each breast where they put the camera in and another cut on both
sides closer towards my back where the tubes were.
Diary
Day 1 May 8,
2015
When I woke up I was panting, I could not catch my breath
but the heavy terrible feeling I used to get when sob was gone. I walked to the room that I would stay in for
the next 9 nights.
My husband said I looked a bit rough the first day and I
was nauseous probably due to the pain meds.
Day 2 May 9
I walked the unit about 25 times and was using the
spirometer and Acapella and was feeling pretty good. The tubes hurt and my back and shoulders
would tense up really bad but my husband would rub my back and that would help
me make it another round. He is such a
drill Sargent. lol
Day 5 May 12
Doing great on the walking and breathing thing. When I
first got here I got a little depressed because my Dr. had 2 other patients
that he did surgery on that day, they were young, one in early 20s with 1
tube and 1 in late 20s with 2 tubes. They were walking circles around me. My
husband mentioned this to the Dr. and he said my lungs were the worst and he
meant it as a compliment like it was easier for them or something. Those guys
had healthy lungs. Different problems. They were fast but I walked way more
than they did. They have both gone home now. I have done 20 laps today and
always working on the breathing things.
Also I thought I would choke to death on coughing up congealed blood. They said that was normal though. |
May 23, 2015 day 15
Feel good, rode bike for 16 miles – electric bike so
pedal when we want to.
I am still sore. I
still cough up stuff. I walk all the way
up the stairs and heavy breathing but no sob.
May 25, 2015 day 17
Walked 1 mile outside today. Still a little sore.
May 26, 2015 day 18
Walked on TM 10 min 2.4, 10 min 2.8 w/oxygen on last 10
mins
May 29, 2015 21 days
This is the first time for 2 miles outside. 20 mins on TM
May 30, 2015 22 days
Rode electric bikes in Back Bay 18 miles on a couple
miles on rough surface
Sandbridge Cottage walked over to the beach uphill and in
sand
May 31, 2015 23 days
Rode electric bike for 20 miles on road through
neighborhoods
June 1, 2015
I feel wonderful, I breathe heavy when I work hard and my
stats drop quickly when working hard. Not
so quickly when going at something easy.
I start rehab tomorrow so I will see what they say.
June 8, 2015
Rehab is going good; they were happy to see me back and
impressed with how well the surgery worked.
I am still a little sore and have some areas that still
lack feeling but it is nothing in compared with being able to breathe. Life seems so easy when breathing comes so
easy. Taking showers, going to the store
walking, getting dressed is so easy.
I would do the LVRS again and would recommend to anyone
who can qualify to do it as soon as possible.
3 comments:
Awesome story thank you!!
Im trying to get qualified, and have had copd 4 for ten yrs. End of life. Im so tired of fighting for each breath. I will give an update if there is one
Prayers
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