V - Cindy's Story of her LVRS

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.

1^st 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. Day 6 This was the worst day of this so far, the tube was hurting so bad and I could not catch my breath (just kept panting)had to stop 3 times on the way to the bathroom which is about 10 feet away and same on the way back.   One of the Doctors said it looked like the leak had gotten bigger, making it harder to breath. Day 7 Today at 10am they took me down to put the valve in. When I woke up it was amazing, I could breath and the pain was gone. Even though the tube is still there. Today is my best day so far. Day 9 I left the hospital on Sunday soon after they took the last tube out. On our way home we stopped at a roadside rest and I went to the bathroom and I was breathing pretty normal and when I got back to the car, it usually takes an eternity to get back to normal breathing but I was fine. I had happy tears, it was amazing. Day 10 This morning when I woke up I felt like I had been hit by a big truck lol just really sore but took an over the counter pain killer and was fine. I walked on the treadmill twice today and did not lose my breath. I went upstairs without stopping and was still a little sob but nothing like before. I went back to work today since I felt ok and was a little tired but really I feel so good.

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.