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My introduction to any sort assisted ventilation came when I was around 14 or 15. I was waking in the morning with horrible headaches and was rather tired. An ABG or Arterial Blood Gas revealed that I was retaining Co2 because my breathing was being comprised by DMD. My Pulmonary doctor prescribed the use of what was know as a Pulmo-Wrap. It wasn't the most comfortable thing because the air blowing into it wasn't very warm. It was also quite loud as it was basically a vacuum cleaner motor that powered it.
I noticed a big difference in my breathing right away. The headaches were gone and I felt more energetic. Once I became accustomed to it, the noise wasn't so bad, but being cold remained an issue that was never really resolved. It just felt so good to be properly ventilated that I didn't worry about being cold. I did well with the Pulmo-Wrap for about 4 years.
Around the age of 17 or 18, my Co2 levels were beginning to climb again. This time I ended up in a behemoth of machine know as an Iron Lung. It was far more comfortable than the Pulmo-Wrap. It wasn't as loud and the air wasn't cold. As DMD continued its relentless attack on my respiratory system, I was in the Iron Lung 18+ hours a day and using oxygen when I was out of it and up in my wheelchair.
After 3 or 4 years of being a virtual prisoner in the Iron Lung, I got fed up with it and told myself that there had to be something better. Something I hadn't considered or didn't know about. There was. It was a tracheotomy and using a ventilator.
I knew nothing about any of this until having a heart to heart conversation with my doctor. At the end of that conversation, I was sold on the idea. However, before my doctor was okay with my decision, I visited some patients who were on ventilator at the very hospital where I have resided for nearly 21 years. They were all up and about on portable ventilators enjoy life. That's all I needed to see to know it was the right decision for me.
So, in January of 1990, I became a ventilator user. It was a decision I have never regretted. I don't recommend that the younger people with DMD who are having difficulty breathing run out and get a tracheotomy and go on a ventilator. Yes, it is certainly an option to consider when the time is right. With the current level of technology, there are several Non-Invasive Ventilation (NIV) out there. Dr. R. John Bach is a M.D. that many people have consulted regarding NIV and have been very successful.
Although I personally don't agree on his philosophy "No DMD person should ever require a trach tube or develop any respiratory complications. If people follclosely what we describe here, respiratory difficulties can be eliminated." I world be irresponsible for not mentioning him in this blog entry.
Take the time to weigh every option carefully and decide what is best for you. In the long run, it's what works well for you. I strongly urge parents of children with DMD to explain everything and allow them to be a part of this important decision. Don't force anything on them because they are the ones directly impacted by this.
Peace,
Chris
I created this blog with the intention of sharing my experiences living with DMD. I have done that to some extent, but I have so much more that I should be sharing. It's not always easy to know what to write about. I have become so accustomed to the relative monotony of my life that I don't feel I have anything useful to say, but many people have said that I have a lot to offer. Being among the older guys with DMD, I should be sharing my experiences with the younger people with DMD as well as their families and loved ones. I'm sure that those that DMD doesn't affect would find what I have to share. So, I'm going to do my best to blog on a regular basis. Even if I don't really have much to say, something is definitely better than nothing. In my upcoming blog entries, I plan on writing about what it's been like living in a rehab hospital and growling up with DMD. I'll still write about other things as well. I hope those that read my blog will find continue to find it interesting and informative.Peace,Chris
In late October, I sent an email to the manager of one of my favorite heavy metal bands; Iced Earth. I asked about meeting the band at the hospital I'm in. I got a response a day or two later. To make a long story short, the manager emailed the band's bassist, Freddie Vindales asking if he would give me a call. After discovering that the hospital was less than 2 hours away, he decided that he would visit. I was stunned when the manager emailed me to inform me of this. The following is a message he wrote that was posted to the Discussion forum on the Iced Earth Facebook page on November 7th, the day after his visit with me. I don't know why I didn't think to share this until now, but here it is for your reading pleasure.
Peace,
Chris
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A few days ago, I got an email from our manager who received a request from an IE fan. He has been in a hospital/rehab facility for the past twenty years due to being on a ventilator, and he had asked if the band could visit sometime. My manager asked me if I would mind talking to him on the phone. That would not have been a problem at all. I looked up where the hospital was and found out that it was about an hour and a half south of where I live. So I decided that instead of a phone call, I’d just drive down and see him in person. So today I headed down from New Hampshire into Massachusetts to see him.
I arrived almost a half an hour later than I said I would because of the Boston traffic. There was a broken down bus blocking my exit from the freeway, and the crazy people down there (we refer to them as Massholes) didn’t make things any easier by driving so slowly. At any rate, I made it to the hospital and found my way up to the room. There I met a man named Chris Webb. He was wheelchair bound and on a ventilator due to having Duchennne Muscular Dystrophy. Other than that, he was like any other cool metalhead, so we got along great from the start. I brought him a couple of CDs. The first was the “I Walk Among You” single and the second was “The Crucible of Man,” but it was the promo version that we in the band got before the album was released. I signed both of them for him. I brought my laptop along because I had compiled some pictures from my travels over the last couple of years, and I wanted to show him some things that really no one else besides the band and crew had ever seen. We went through the pictures, and I told him the various stories that accompanied each. I had fun retelling the stories and he seemed to have fun hearing them. We talked mostly about music and our favorite bands (we’re both huge Maidenheads). He even met Metallica, which I never have. We traded stories about meeting various musicians. He also told me some interesting things about being in the hospital. For instance, his old ventilator didn’t have a battery backup like the one he has now. When power outages would happen, it would take about 30 seconds for the backup generator to kick in. He said those 30 seconds seemed like a lifetime. He also told me how in the past he would be cranking up the music in his room at the hospital, then the nurses would tell him to turn it down because the subwoofer was rattling the floor. I thought that was awesome.
I had only planned on staying about 30 minutes because I had dropped off my wife at the nearby Ikea store beforehand, and I needed to meet her to do some shopping. I ended up staying almost an hour because the time seemed to fly by. Just before I left, one of the nurses was nice enough to snap a picture of us that I sent to Chris as soon as I got home. We’ll definitely keep in touch, and I hope he’ll get to see us play sometime in the near future.
Today I celebrated my 43rd birthday. It was by no means an extravaganza, but it was very nice nonetheless. The nurses on the 7-3 shift crept into my room as I was sleeping and decorated my room. I was completely unaware of this until I was being transferred from my bed to my wheelchair. They tied a happy birthday balloon to the back of my wheelchair as well as taped a happy birthday day banner to the back of my portable ventilator. On a bulletin board in my room and on my door were two more happy birthday banners.After getting positioned in my wheelchair, one of the RNs came in and put a cardboard crown on my head. It was similar to the one you used to get at Burger King. I'm not sure if they still have them. Anyhow, the banner on my portable ventilator soon became my sash. I was king for a day minus the power one wields.A little while later I was beckoned to my room for the traditional singing of "Happy Birthday". I was then presented with a nice little chocolate cake, which read "Happy Birthday Chris" in blue frosting, which turned my tongue dark blue! The cake was quickly devoured by myself and the 7-3 staff. They then pulled out my gift, which was a black t-shirt with images of Albert Einstein sticking his tongue out. It's very similar in design to Andy Warhol's famous painting of Marilyn Monroe done in funky colors with the image repeated nine of twelve times. I think this t-shirt is very cool.I've spent a good amount of time today thanking people on Facebook that sent me birthday wishes. I was pleasantly surprised at how many people wished me a happy birthday. It's really a nice feeling to know how much some people care even if you don't know them very well at all.Yesterday, my uncle David stopped by for a couple of hours, which he does every other weekend anyhow. It was as always, a nice visit. He gave me a birthday card with 50 bucks. Money is always a nice gift. On Friday night, one of the nurses on the 11-7 shift that has been taking care of me for years came into my room with a plastic bag, which contained 4 music DVDs from him and his family. It was an unexpected gift and one that will find much use.In closing, I would like to dedicate my 43rd year of life as a memorial to my fellow DMD brothers and sisters that have fallen to this hideous unrelenting beast. And I want to be a source of strength to those younger than myself who are also battling this monster on a daily basis. I want their parents and loved ones to have a glimmer of hope.Peace,Chris
One of the worst things about living in an institution is the complete and utter lack of respect from various staff members. Don't get me wrong, not all of the staff are disrespectful. Some are actually respectful and extremely nice and do go above and beyond the call of duty. Others are nice, but don't always listen to me and do things the way I want. And you have others who are nice one minute and 'El Diablo' the next.
I really do put up with too much crap with certain individuals, but unfortunately these individuals are the ones that really know my care. It's a big catch 22. If I complain about so and so not doing things the way I want then I'll end up having people who don't know their arse from their elbow talking care of me, which is a total nightmare. So, I just bite my tongue and deal with my care not being done the way I want all the time. I wouldn't call it abuse or neglect, but it does get my blood boiling.
I have my routine and reasons for doing things the way I do. It's been this way for the 20 years that I have lived here. So many people here have absolutely no clue at all what it's like living with Muscular Dystrophy. If I ask to be moved a little bit and I get moved too much and tell whomever is doing my care, I'm called a pain in the ass. Some nurses/aides say it jokingly, but I'm convinced that others use the term to be hurtful or make themselves fell high and mighty or even superior. If I were to report the way I'm sometimes treated, people would be fired so fast, but I doubt the powers that be world even listen or really care.
My advice to others with DMD who have not yet had to be in a hospital for any amount of time would be to put your foot down from the get go if you are hospitalized for whatever reason. If you need your parents or legal guardian(s) to speak on your behalf, so be it. The same holds true for hired caregivers. You need to let them know who's the boss or you will more than likely be taken advantage of and treated like a second class citizen.
Peace,
Chris
On Thursday September 16, a good friend of mine unexpectedly passed away. Ron had Limb Girdle Muscular Dystrophy and was just 50 years old. It wasn't this disease that robbed myself and others of this wonderful person, but something else, which I don't know.
I suppose how is of little consequence when compared to why. I ask myself this of every friend I have lost during the 42 years of my existence, but an answer I can embrace and accept has yet to come. I'm getting off track here. This blog post is supposed to be about my good friend Ronald C. Pepi and not myself.
I never really met Ron face to face as far as I can remember, but I distinctly recall seeing him around at the Massachusetts Hospital School (MHS).
For those of you who don't know, MHS was a school for the disabled which consisted of a fully wheelchair accessible campus that had a high school, elementary school. hospital, gymnasium and a few office buildings as well as 4 dorms, which were referred to as cottages. Each cottage was setup according to age. Most students lived at MHS during the week and went home on weekends, holidays and school vacations. Some were day students who came from home every day.
Ron was a day student and 8 years older than I, which is why we never met face to face. He was in the high school crowd and I was in the elementary school crowd.
Fast forward to mid to late 2007. I discovered that I could play World of Warcraft when I decided to sign up for the 14 day free trial. Scott, one of the nurses who works at the hospital I live in was also a friend of Ron's. They had become friends when Ron was here for 4 months after breaking his leg. I told Scott I was playing Warcraft and it turns out that he and Ron also played. He wrote done the name of the server/realm they played on and their character names. I immediately made a character on that server/realm and added them to my friends list.
Talking to Ron in the game and later on Facebook and AIM was like talking to someone I had known for years. I only knew him by name from years ago. Now we were good friends. I came to know Ron as Zugzugdahboo, his character's name. His guild friends called him Zug for short. He simply LOVED Warcraft. It was practically in his blood. It quickly became my all time favorite game.
Once my 14 day trial ended, I joined World of Warcraft as a paying member. Now I was able to join Ron's guild, the NationalRifleAssociation, reflecting his NRA enthusiasm and gun ownership. He was very helpful in helping me learn Warcraft basics. It wasn't long before he became like a big brother to me, always there for in game and out.
He genuinely cared about me and all those he considered true friends. That's without a doubt the greatest trait he possessed. He was definitely one in a million and I really miss him. Once I get an Internet connection resolved and I can log on to Warcraft, I will become the new Guild Master (GM), which is the wish of his sister. It will be an honor to keep his guild going in his name. R.I.P. my friend.
"Smile when you think of me. My body's gone that's all." -- Megadeth - 'A Tout Le Monde'
Peace,
Chris
In order for you, the reader to understand the title of this blog post, some background information is needed.
Back in November of last year I started a friendship via Facebook with a wonderful woman by the name of Jessica whom is now a dear friend of mine. Through her I met another wonderful woman; Julie. Since March, she has been visiting me on a weekly basis. We have become great friends during the five months we have known each other.
She just finished being trained to take me out, which involves knowing how to suction, ambu and the operation of my ventilator. Normally, it's a simple process, but the respiratory therapists forgot to document what they taught Julie or they documented it wrong, so they had to go over everything about three times. Although it was frustrating, it was worth it in the end.
Jessica had made plans to visit me from New York a while back and we decided that we would take in a Red Sox game.
Well, that game was last night and it was a blast despite some minor problems. It was a very exciting game that the Red Sox won 3-1 and featured a bench-clearing scuffle between both teams. Although I was a bit nervous being out with Julie for the first time, I really enjoyed being out of the hospital with friends instead of family or a respiratory therapist. It truly was a night to remember! I'm looking forward to my next outing with Julie.
Peace,
Chris
