Invasive Vs. Non-Invasive Ventilation: Advantages, risks, and complications - And my experience with both types of ventilation.

 Hi everyone! 

In this post, I'm going to discuss the two major types of mechanical life support. I will also discuss my experience with both types. I'm not a doctor or an expert by any means so don't base any decision off my post. This is simply my view.

When you have Duchenne Muscular Dystrophy, eventually your lungs are going to start being affected and you are going to need some sort of mechanical ventilation to help with breathing. There are two types of this, Invasive and Non-invasive(NIV). I have experienced using both and I will describe each.

Non-invasive ventilation(NIV)

With this type, the person uses a face mask strapped to their face usually over the nose which is connected to a ventilator. The ventilator pushes air into your lungs. Forms of noninvasive ventilation include machines you can use at home, like a CPAP(Continuous Positive Airway Pressure) machine or a BiPAP(Bi-level Positive Airway Pressure) machine. There are several advantages as well as risks and complications with this method which I will discuss.

Advantages-

• Easy to apply and remove masks.
• Improves patient comfort.
• Reduces need for sedation.
• Preserves speech, swallowing, and eating.
• Reduced cost of equipment and length of hospital stay.

Risks and Complications-
 

System

• Slower  correction of  gas exchange abnormalities
• Gastric distention

Mask

• Air leakage
• Eye irritation
• Damage to the facial skin(breakdown)

Lack of airway protection and access 

• Suctioning secretions
  Aspiration into lungs
   
• Possible Claustrophobia
• Increased work load and supervision

Invasive ventilation(Tracheostomy)

With this type, the person has a Tracheostomy tube surgically inserted through an incision in their neck and directly into the trachea providing an artificial airway. The tracheostomy tube is then usually connected to a portable ventilator. People with debilitating neuromuscular diseases such as myself as well as people who suffered a catastrophic spinal cord injury and are unable to breathe on their own may require Invasive Ventilation. In some cases the tracheostomy can be removed eventually. There are several advantages as well as risks and complications with this method which I will discuss. 

Advantages-

• Bypasses an upper airway obstruction
• Easier removal of secretions
• Permits long term mechanical ventilation
• Permits eating and probably makes it safer
• Permits speech
• Less risk of airway damage

Risks and Complications

During and shortly after procedure

• Bleeding 
• Air trapped around lungs(Pneumothorax)
• Damage to esophagus(rare)
• Injury to vocal cords(rare)
• Possible blood clots or mucus plugs

Later

• Decannulation or accidental removal of trach tube
• Infection in the trachea or around the stoma(the hole in the neck)
• Damage to windpipe
• Thinning of the trachea from the tube rubbing against it.
  

My experience-

I used Non-invasive ventilation from 2000 to 2018. I used a BiPap machine with a mask for 24 hours a day and I couldn't breathe without it. I benefited from the Advantages aside from the sedation part which I never required. However, I also suffered from most of the complications except for the claustrophobia. I rotated a couple different masks to alleviate the stress on my face. One of them I really liked but I couldn't wear it constantly because it would cut into the bridge of my nose and it would feel like my skin was coming off with the mask. The other one would sit right on the edge of my nostrils and after a while would irritate the inside of my nose. Plus it was cumbersome to put on. I continued putting up with it though because the idea of having a tracheostomy scared me. I t was a tube going through a hole in your neck into your trachea. It just seemed very daunting and it would be a big step it, it's usually a permanent change for people with DMD or spinal cord injuries. Despite my doctors insistence that I needed it to continue to live. They were trying to tell me it would improve my quality of life. I just wasn't having it.

Eventually, I didn't have a choice but to switch to Invasive Ventilation. When my respiratory system failed I had to be resuscitated and I almost died. After coming to, I was told that the NIV just wasn't ventilating me enough and hadn't been for years. I was given a couple choices.  I could just let nature take it's course because they weren't sending me home with the NIV the respiratory failure would almost certainly happen again. Or I could get a procedure known as a Tracheostomy where an incision is made in your throat about half way down your neck and they insert a tracheal tube into your trachea. I pretty much decided immediately to do it. After surviving all that it wouldn't be for nothing.

Living with a Trach-

At first, I didn't like it and I thought I made a mistake. I got the constant sensation that I couldn't breathe and I panicked a lot in the few weeks after getting it. After leaving the hospital and rehab, I noticed that I was much more comfortable on my Respironics Trilogy Ventilator. The vents in the hospitals seem to be much different from the ones you use at home. The one I was on in rehab I was breathing really fast so I felt like I wasn't getting enough oxygen it also seemed like the breaths were a lot shallower. A week after arriving home, my respiratory therapist Lauren and my Pulmonary doctor Dr. Cassavetes, came to visit for their routine check up. They actually make house calls from Boston to the Cape. I was an emotional wreck because I was still uncomfortable and thought I was going to be miserable for the rest of my life. I was crying and feeling depressed. Lauren looked at the machine settings and was like why the hell is it set like that? Meaning the rehab respiratory therapist had the completely wrong settings and that was why I was having a hard time. She made a couple adjustments and almost immediately I felt so much better I actually felt like I was breathing normally because I was.

From that day forward, I was so much more comfortable and happy. It was all looking up. I was able to speak again about two months after the surgery. I had no issues with it either it was like I never stopped. After 6 months I was able to begin eating and drinking again and just like the speaking, it was like I never stopped. Everything I was concerned about was proven wrong. I began living my life like normal again. We have to replace the trach tube monthly which is simple and quick. I also need to do a couple nebulizers a day and suction every once in a while but it’s not a big deal. I barely even notice it's there now and I just have normal days without worrying about my respiratory system. I can travel very well too and do we ever. We have to carry a little more equipment if we go out whether locally or long distances but its not a big deal. We went to Wyoming in June 2022 and we've been to North Carolina twice. We just got a new van too so here's to more long road trips.

Since I got the trach, I met some amazing people who are likely Angels in disguise. I met my wonderful nurse Christine Holman the day I came home and we had a lot of good times. In January of 2019, I met my favorite person to ever exist. A young woman named Kayla Sexton came to work as my aide. She is almost definitely an angel. Kayla and I got really close in the four years she worked her. I consider her my sister even though we aren't blood related. She is an amazing and wonderful person. She's so friendly and caring and loves to help everyone. She and her family are very dear to me. I also met several other great nurses because I chose life. Fern G., Kyla Mendes, Stephanie Murphy, Hannah McKnight, Denise Ried, Jennifer Mcneil, Connie Felker, Gail Borel, Susan Rourke, and Erin(I'm sorry I don't know your last name lol). I also made some good friends too. Jennifer Bedard, Krista Sexton(Kaylas sis), Aaliyah and Ryan(Kaylas daughter and son), Kyla Collette and Alex Tuckerman, and their children, Riley and Walker, and Christines husband Nate and her step kids, Max, Joey, Sam, and Ryan and Thuccy. I'm so glad you're all in my life and I'm so happy I chose to fight so I could meet you all. I think I'm going to end this here because its already a novel lol. 

Thank you so much for reading!

 

New Handicapped Van!

Hi everyone,

About a month ago, my mom and I got a new handicapped accessible vehicle(Pictures at the bottom). We began looking back in 2021 after we borrowed a handicapped van from a friend which I was able to sit up front and see out the windshield. Something I haven't done in 30 years because every van I got since I've had to sit in the middle behind the front seats. The van we had was a 2010 Ford E-150 and, while it was running pretty well, it was aging and would need to be replaced eventually so we wanted something I could sit in front.

At first we wanted an MV-1 which was the van we borrowed. The MV-1 was a purpose built handicapped accessible minivan that was built on a Ford Crown Victoria chassis and was powered originally by a Ford modular 4.6 L V-8 until 2014 when it got a smaller 3.7 L Ford Cyclone V-6. It kinda resembled a cross between a 2008 Honda Pilot, a Honda Element, and a British TX4 taxi cab. Production ended in 2016 after 5 years due to poor sales. We looked everywhere in Massachusetts to find one and weren't having any luck which was surprising because they were like Deloreans, there were a lot left over. We figured out why and found out we dodged a bullet.

Last June, we borrowed the MV-1 from our friend to drive across country to Wyoming. At first the ride was going fine but we noticed it was getting awfully warm in the car despite the fact the AC was on high. It became an oven on wheels. We couldn't figure out why because the car got a full check up before we left and everything worked. We asked several people we knew in the mechanic field. My friend Josh and my Uncle Paul. Unfortunately we couldn't tell them anymore because we couldn't figure it out. Eventually, Josh figured it was the hose going from the AC to the ventilation by what we were telling him and he was correct. Thanks Josh! So now that we figured it out, we had to just pick up a hose at Autozone and put it in, right? Nope!. We brought it to a garage in Nebraska down the street from the hotel to see if they had the part we needed. They see the vehicle are basically like "the fuck is that thing?!" and we were like SHIT!. Well the mechanic did some research on the vehicle and discovered the part as well as most of the parts were no longer in production, so shit again!. He found something similar from a Peterbilt Semi truck which had to be specially ordered and over-nighted from Detroit and thought he'd be able to improvise and it actually fit perfectly. We were able to finish our trip without roasting alive. That's how we knew we dodged a bullet! The MV-1 has no replacement parts and would have been a really bad investment.

A little before our trip, we visited a place in North Attleboro, MA called Mobility Works who are a vendor for handicapped accessible vehicles and also modify them. There were 3 different vans there that we checked out all brand new. The 2022 Honda Odyssey, 2022 Toyota Sienna, and a 2022 Chrysler Pacifica. I tried the Pacifica first and immediately knew I wanted one. I tried the other two anyway just for the hell of it. They were nice but I wasn't crazy about them plus the hoyer lift didn't fit easily. So I was like I really love the Pacifica and then my mom asked the most important question, how much? It was then my hopes collapsed. The price of each one of those vans was in upwards of $85k and the "cheaper" ones were $60k+ which is really extortion for a disabled person who needs one of these vehicles. It's a necessity! I need to be able to get to my doctors appointments and plus I need to get out of my house for my mental health and I don't go crazy with cabin fever. So we were like you're going to have to give us some time to figure this out that kind of money doesn't come easy. At the time, I had recently created a GoFundMe originally for the MV-1 which didn't work out so I changed it to the Pacifica and began sharing it everywhere on Social Media. For the next few months, many of my friends shared it and/or donated to it and we made about $6k which was pretty good but we had to find another way. At that rate we'd get a van sometime in the 2030s assuming the prices weren't $300k due to the inflation we've been dealing with since the beginning of 2021 because of...well we won't go there lol. Let's just say it wasn't my fault! Anyway, we started all sorts of things to try making the money... NO not that... I mean scratch tickets and applying for grants... Get your goddamn minds out of the gutter!😁 I started to lose hope and then a couple things happened towards the end of the year which hit me hard emotionally. So my mom decided to try another vendor.

In February, my mom took a ride up to Mobility Works because they found something cheaper down in Virginia and brought it up for her to check out. It was a red 2019 Pacifica for $65k and my mom was thinking of going for it. Before she made a decision, there was another vendor, like I said, that she had contacted. Adaptive Mobility in Seekonk, MA right near my best friend/sister Kayla and Jake. We had thought about going there before but it looked like they only had big vans but we were wrong. My mom went in and told them she was looking for a newer model used Pacifica with low mileage. They had exactly what she was looking for. It was a Pearl colored 2017 Pacifica from Florida with 15k miles and it was $45k. It was perfect. The following week she brought me up and asked the owner to pretend they never met her so she could surprise me. I didn't see it coming I figured we were going to look at vehicles that we could only dream of owning. But I realized it when she was talking about when we could come pick it up and I was so excited. Honestly I almost cried lol. We couldn't take it that day because it needed a couple modifications, namely the automatic tie-down system. They had to order the part which took about a week and then I had to bring my wheelchair up to be fitted for the tie-down unit. The day we drove my chair up for the fitting, the Fords flywheel broke apart out of the blue and we broke down on the entrance to interstate195 in Wareham, MA. Thankfully we have AAA and we called a tow truck. We also called Adaptive Mobility and they came to pick us up because the van couldn't be towed with me in it. That was the last time I saw the inside of the old girl... It was bittersweet because that van and my family have been through a lot and gone so many places. She will always have a special place in my heart. 

We were able to rent out the van they sent to rescue us because the new/used van wasn't prepared yet and we needed to be able to get home. It was a pretty nice van too! It was a charcoal 2019 Dodge Grand Caravan with black rims and was similar in size to the Pacifica on the inside. We had that for the weekend and on that Monday the my mom returned it to the place in Seekonk and then drove the new van home. That weekend we went for our first ride, at least my first ride, in the new van. We drove up to Provincetown, MA and along the national seashore for the maiden voyage. I'm so happy with this vehicle and I hope for some great road trips in the near future. It was a long time coming to get to this point and I'm grateful to my mom for finding it.

Thank you so much for reading my post!

 

The day I stopped walking.

Hi everyone,

This is my story about the day Duchenne Muscular Dystrophy took away the use of my legs. This is a bit of an emotional subject for me.

I stopped walking overnight...

It was August 1991, I was 9 years old. I remember I had to get up in the middle of the night to use the bathroom and everything seemed fine. I climbed back into bed and went back to sleep. That was the last time I ever used my legs. For a couple years before I was gradually losing strength in my legs and walking was becoming increasingly difficult. I was falling a lot and I couldn't climb stairs without help but I could still do it. So in the morning, I tried to get out of bed and my legs were not cooperating and were like "nope we're all done" and I fell back on the bed. I kept trying and I just couldn't do it. I started to cry because I was scared and couldn't figure out what was going on. I called out to my grandfather to come and help me. He came in the room and asked what I needed and I said I can't stand up. He tried to help me up and he was getting me to my feet where I could stand but whenever I tried to take a step my legs gave out and my grandfather had to catch me. My grandfather was becoming emotional because he felt helpless but also he knew this day was coming eventually. I too knew someday that I wouldn't be able to walk but I wasn't ready for that. I wanted to keep being able to walk. I kept saying I wasn't ready and I want to keep walking. He didn't know what to do because my grandmother was out and my mom was working so he tried his best to comfort me and he was doing a pretty good job. For the next couple weeks I used the wall to move around the house and hoping maybe it was temporary. Eventually I gave it up and accepted the fact that I was never going to walk again and I began using my manual chair in the house because the scooter was too big. I adapted pretty quickly which is something I'm good at, adapting. This was one of the many things taken from me over the last 30 years because of this illness. I think it affected my grandparents and my mom more than me. They knew it was coming sooner or later and I did too. It still sucked for all of us though. Being able to walk one day then unable to the next is traumatizing especially to a child.   

People with Duchenne Muscular Dystrophy can't do too much physically but we are grateful for the things we can still do and are grateful to the people in our lives who make us happy. Life is short and we try to share that short time with the people we love and care about. Keep those people close to you!💚

Just a little about my grandfather, Francis. My grandfather was born sometime in 1924. He enlisted in the US Army during the Second World War but, due to being hit in the eye with an arrow as a child, he was discharged because he couldn't aim the M1- Garand rifle. After that Francis married my grandmother Patricia in 1950, had 7 children in the next few decades, and  worked his ass off as an amazing mechanic as well as a couple other jobs to take care of his family. He was a great man who loved me and my mom as well as his other children and his wife. I think the stress of my disease progression may have accelerated my grandfathers dementia and led to the subsequent alzheimer's disease. It was really sad as a child and eventually a teen to watch him slowly lose his memory and forget things that were second nature to him. Eventually he didn't know who any of us were and one time asked me why I was in a wheelchair. He passed away in March of 2000 of pneumonia with my grandmother, his wife of nearly 50 years, by his side in a Veterans Affairs Hospital in Bedford, MA. Grandpa we miss you! Thank you for your military service despite it being short and thank you for your service of taking care of your family!💖🙏

Thank you for reading!

Accessible Gaming Suggestions for Physically Disabled Gamers

Hi everyone,

 

I created a list of  options ALL video and computer game companies need to add to their PC/Console games to make them a lot more accessible to physically disabled gamers. 

 

• Fully remappable controls for the keyboard/mouse/gamepad or even a way to allow people to use either the mouse, keyboard, or gamepad exclusively to play the game 

 

• An option for windowed mode. Some disabled players need to be able to move the cursor to an on-screen keyboard or other assistive software on their desktop to play these games. They are NOT able to do that while the game is in full screen. 

 

• An option to turn on a visible mouse cursor. There is a great program called AltController that helps make PC games more accessible. It requires a cursor to function and some games do NOT have a cursor. 

 

• An option to unbind the camera movement from the mouse and re-map it to keyboard keys. Most first-person games have this issue where the player movement is controlled by the keyboard(W,S,A,D)or(the arrows) and the camera is moved by the mouse and there's no way around it. This is what ruins it for many handicapped players because again they cannot reach their on-screen keyboards or use their assistive software(i.e. AltController) and are just stuck moving the camera. 

 

• An option to free the cursor from the game window. I've run into this many times where the games has a cursor, fully mappable controls, and windowed mode but the cursor is trapped inside the game window. Again this a big problem because on-screen keyboards and assist software cannot be reached. 

 

• Ease up on the controls. Some of these games have way too many button presses even for able bodied players. Maybe include a simplified control scheme option.

 

This is a call to each and every video game software designer and publisher across the globe to make your games playable to everyone regardless of physical abilities or disabilities. Please incorporate all the accessibility options and features I described above into every future game title and if possible patch them into past game releases in an update. Handicapped people have a tough time in life as it is. I think gaming is a really important form of entertainment and a good escape from the real world that everyone should be able to fully enjoy. You will get an even wider player base too which means more money and sold copies.

 

Link to AltController

https://altcontroller.net/

 

Link to EyeMine for Minecraft

https://www.specialeffect.org.uk/news/eyemine-v2-is-here

 

 

 

My experience at Vibra Hospital of Southeastern Massachusetts.

Hi everyone,

In this blog I wanted to talk about my experience in Rehab at Vibra Hospital of Southeastern Massachusetts. In 2018, I suffered a nearly fatal respiratory failure which landed me in the hospital ICU for two weeks and led to me getting my Trach. At the end of those two weeks, I was discharged from Cape Cod Hospital in Hyannis, MA and sent to rehab in New Bedford just to teach my mom the basics of trach care and to try to acclimate me to my new life(teach me to talk again, i.e). Unfortunately the Cape has no rehabilitation facilities that deal with people on vents so that's why I got sent so far from home. It's a very scary experience especially when you can't have anyone you know stay with you.

So I was taken by ambulance from Hyannis to New Bedford, which is about an hour and a half away, while my mom followed behind. They got me to a room and settled me in and my mom was able to stay the first night. Everything seemed to be okay, the nurses and CNAs were pretty nice so I was a little more relaxed. After the first night, my mom could only come and visit during the day until around 9pm but she was staying at a friends house about 5 mins away. I was as comfortable as I could be for the first week. The speech pathologist came in every day as did the Respiratory doctor and physical therapist. Everything was going good until the weekend when the nurses and CNAs you usually hear about neglecting their patients in rehab came to work. I'm about to talk about some really personal stuff lol so prepare yourselves.

The first upstanding employee was the CNA with an attitude problem. Before I left CCH, they removed the catheter from my.. well you know.. because I regained control over my bladder. At Vibra, I peed myself a couple times because it took the nurses or CNAs a few minutes to come to my room because they had other people too. The first time I did it, it was a few days after I got there when the assholes had their shift. This woman comes in and is like "where's his condom catheter?" to the nurse with her. The nurse tells her that the doctor said I didn't need it. Now anytime I've used a condom catheter, it never has worked out. Since I couldn't speak I couldn't tell her that and she said she wouldn't use the word board because "she didn't have time". She cleaned me up and left without putting on the condom catheter. About 45 minutes later I did it again. The same CNA comes in with an attitude problem. Since the nurse wasn't with her and she was with another CNA, she figured she could get away with being an asshole and since I can't talk who am I going to tell. She was like "I was in here a half hour ago for the same thing, I'm not coming in here all night to do this" and then addressed me like I was a hard of hearing caveman. It was slow, loud, and full of condescension. "Sweetie you don't have control of your bladder and I don't have time to come in here every 5 mins. We're putting a condom catheter on you so you don't pee the bed" Thanks bitch... you act like I'm doing it on purpose. I don't know how these people get a job working with people. She put the thing on and I ended up getting a sore on my... private parts. 

The following night, I had a nurse who decided to totally ignore me. At first she seemed like a sweet older woman. I was wrong. I still had the condom catheter on and as I said before, they don't work for me. I ended up peeing the bed anyway and the nurse was like you can't pee the bed with that on and refused to check. Then I ended up shitting myself due to the drugs they were giving me. I was able to get her attention and she says "okay honey I'll get a CNA" and walked away. I don't appreciate being called honey and I'm pretty sure a nurse isn't supposed to use words like that. After about an hour, there was no sign of any CNA. The nurse comes in to check the vent and I start making a clicking noise with my mouth to get her attention. The nurses knew that if I was doing that it meant I needed something. We went over that with the staff as soon as I arrived. Yet this nurse was pretending she didn't hear me. After that happened several times she then comes in with a couple residents to check on another patient. One of the guys happens to look over at me and I mouth help. He tells her I think he needs help and she says something like "just ignore him he's fine". I was NOT fine. By this point I had been sitting in human waste for 4 hours. I had a pressure sore on my tailbone also which got a lot worse from this. She leaves the room again and I don't see the bitch again. Finally after 6 hours I finally got a CNA to come and clean me up and change the saturated bandage on the pressure sore. Unfortunately I never got that nurse name and I wish I did so I could come for her license.

Last but not least was the CNA who had a hard time speaking English. She comes in the next morning to do a bed bath. I knew something bad was going to happen due to the language barrier and my inability to speak. She rolls me on my side to get my back and knocks the vent hose off the trach. The ventilator begins alarming and instead of checking why, this women continued to wash. I started making my clicking noise because I couldn't breathe. She was like "don't worry you're okay". I was beginning to lose consciousness. A respiratory therapist saw that a vent was disconnected and ran into the room to see what was going on. She reconnected me and gave the CNA an earful. The CNA tells the respiratory therapist that I didn't come off the vent. The RT tells her she had to put it back on so yes it did come off. As soon as the RT left the CNA did it again and again didn't look to see what the problem was. The RT comes right back and says "what the fuck are you doing?" then is like "okay you are done with him, Get out!". The CNA tried to argue and was shut down because this RT was a tough chick. So the CNA left and I burst into tears because I got scared. The RT gave me a hug and said "it's okay you're okay Mike you're safe she's gone" I'm guessing that particular CNA probably does it all the time. It was a weekend from hell.

I did have a few great nurses and CNAs though during my stay. The one that stands out the most was Francesca or Frankie. She was really good at her job and I felt very comfortable with her. She was a sweet person. I tried to contact her on Facebook and Instagram to say thank you but she probably didn't remember me. So Frankie wherever you are now thank you so much for making me feel at ease. You're a great person and I wish you well on your career I hope you are doing bigger and better things.

If you or someone you know has to go into rehab, if you can stay with them or you can have someone stay with you, do it! Also make sure you get the names of the health care workers and the time of their shift. Most of the people will treat you well but there's always a couple who shouldn't be working in a hospital and if you get mistreated you need to be able to identify that person.

Thank you for reading!