EXCLUSIVE: This Marine’s HEART WRENCHING Battle To Stay Alive… Every American Needs To See This

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Dean James AMERICA’S FREEDOM FIGHTERS – 

This is an extremely powerful article about a good friend of ours who served in the Marines and has dealt with and overcome major difficulties with his health. We feel that stories like these need to be seen and with his permission we are going to share his story with you.

This young man is a hero. His name is Gary Johns. He served our country to protect all of our freedoms and we here at AMERICA’S FREEDOM FIGHTERS thank him for all he has done. Gary is a PATRIOT. Gary LOVES OUR COUNTRY! And again, we thank him and all of our Military for the sacrifices they make to keep America safe and secure. God bless this man and GOD BLESS AMERICA!

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Gary’s story: 

My story begins in late 2002. I was a healthy 190 pound, 21 year old Marine. Things slowly started going down hill as I returned from a deployment to Okinawa/South East Asia when I was in the Marine Corps. I was on the 31st MEU (Marine Expeditionary Unit – SOC) and visited about seven different countries .
Problems became increasingly noticeable when I was trying to PT (physical training) with my platoon. Slowly but surely, running kept getting more and more difficult. I couldn’t keep up on platoon runs and was getting out of breath and fatigued rather quickly.
The last run that I went on, I literally fell out of formation about three steps into it. With the change of command when we got back from our overseas deployment, my platoon’s new leadership didn’t believe that I was actually having problems and accused me of lying about my problems in front of the entire platoon.
Later that day, I went to see the battalion doctor. As the Corpsman (Navy/Marine Corps EMT/Nurse) administered the EKG, he ran it several times because he thought that the machine might have been broken.
After that, he brought in the doctor and the doctor decided to get a few x-rays of my chest and then sent me off to lunch.
When I got back from lunch, the doctor had told me that the x-rays showed that I had an enlarged heart and that I needed to take it easy.
At the time, the Naval hospital at Camp Pendleton didn’t have a cardiologist, so they had to set up an appointment at Naval Hospital, Balboa, in San Diego, CA. But in the meantime, they sent me to internal medicine at the hospital on Camp Pendleton.
The doctors at the hospital on Camp Pendleton were very, very curious as to my condition and wanted to ask me questions and bring in other doctors to ask me questions. With my permission, I must have seen about five different doctors so they could get familiarized with a 21 year old Marine who had some how acquired  an enlarged heart.
When I finally was able to meet with the cardiologist at Naval Hospital, Balboa, and after doing a litany of tests, the doctors diagnosed me with SEVERE IDIOPATHIC DILATED CARDIOMYOPATHY (They had no clue why the hell my heart went bad).
I was treated by the doctors at Balboa for a few months. All while this was going on, my Marines were preparing for deployment to Iraq. However you feel about that war, I would much rather have been with my Marines than dealing with these issues.
Since I was the remain behind echelon, in about mid February, I ended up working, loading vehicles and equipment onto ships, to replace the vehicles that were off loaded from the ships, into Kuwait (this is how the Marines can deploy so quickly). The entire week that I was working my butt off doing this, I got worse and worse. I was experiencing stomach pains, loss of appetite, lethargy, shortness of breath, and experiencing severe thirst. Ironically enough, cold water seemed to soothe the pain in my stomach, that was already full of fluid.
At the end of that week, when we were headed back to Camp Pendleton, from working in San Diego, I had to make a stop and visit my nurse at Balboa. Because I was so bad off, they decided to admit me. I was in ICU for a while and then transferred to a different unit. I spent about two weeks there and then they cleared me to let me go back to base.
A few weeks later, at an appointment, my nurse caught a run of V-Tach and got very concerned. At this point they made an appointment to send me to UCLA to get an AICD implanted and evaluate me for transplant, as there was nothing more that Navy medicine could really do for me.
Thankfully, my case manager caught that I would be living in Santa Barbara, with my parents, when I went home on convalescent leave and asked if UCLA would be a better choice for me, since it was closer to where I was going to be, than UCSD.
That decision actually worked out for the best, since at the time, UCLA was the only hospital in the area with a heart transplant program and was doing roughly 105 heart transplants a year, verses about four that UCSD was doing. And to briefly digress … The care at UCLA is a million times better now, than it was when I first went in April of 2003.
There were two or three to a room, with one TV, and you didn’t have a menu to choose from, you got what they gave you to eat.
When I had my AICD implanted, and was being wheeled out of surgery and on my way to a recovery room that had 20 something other patients in there, I started coughing. I wasn’t even out of the operating room yet, I started coughing and my AICD fired three times in the first 30 seconds of being awake. If you’re not familiar with what that feels like, it’s as if a horse kicked you in the chest.
~tinman3
After threats from the doctors that I might have to spend six months in the hospital (or more depending if I didn’t get a match by then) and spending about 11 days in the hospital, moving to three or four different rooms and fighting with the doctors, they finally kicked me out and let me go home.
I managed to stabilize with the regimen that the doctors had put me on and enjoyed a few years on the transplant list with out a call. Though, I did experience more than a few shocks from my AICD, a few legitimate, and most of them having been misfires (all while conscious).
One day, my cardiologist asked me if I were to get the call then and there, if I would take the heart. I told her that I wouldn’t and didn’t feel that I needed it at the time …
Fast forward …. In 2010, my health started to slowly decline again. Having a service dog, and having had issues at several restaurants that violated my civil rights, refused to serve me, or wanted to treat me like a second class citizen, and having even threatened me, my heart rate got up a few times and the first time this happened, I experienced four shocks in just a few minutes and led to my having to take an ambulance to the emergency room.
Fast forward again … Late 2011 and early 2012 I didn’t realize how bad off that I really was. It was getting difficult to walk, I would go into cardiac arrest while just sitting, watching TV, or even if I got a little bit excited. I started losing  weight and my appetite was down to about nothing. I would have an episode here or there, where my heart would stop, my AICD would fire and I would be revived, but I would come back to, having a seizure.
~tinman4
I died once in my sleep, very interesting, as I was having a dream, and in the dream, I did exactly what I did what I would do when I was awake and I would die. Because I would feel my heart beat, and I had the nerve communication from my hear to my brain, I would lay down and then I would come back to, having a seizure. Since this was a dream, and I was in bed, I woke up and pondered if I had in fact, died again. In total, I died about 14 times at my house.
After the last time that I died at my house, I called one of my very awesome neighbors and asked her if she would drive me to my parents’ house in Santa Barbara. She was kind enough to do so. She drove my Ford F150 the 130 (or so) miles to Santa Barbara.
The next couple of days, I died about 3 more times at my parents’ house. The last time I died there, my dad called 911 and an ambulance took me to Santa Barbara Cottage Hospital. I spent a couple of days, died about two more times there and then was sent back to UCLA for observation and treatment.
When I got to UCLA, I was in a pretty crabby mood and mad at the world. It was the last place I wanted to be. I HATE hospital life and really hated it when I was there in 2003 while I was still in the Marine Corps. It wouldn’t surprise me if “survivor guilt” and just guilt in general for not being able to deploy with my Marines to Iraq was a factor of making my first stay as miserable as it was …
Spending a few days in UCLA I died a few more times. I ended up having a ganglionectomy (where they sever one of the main nerves to the heart), in hopes that would stop me from having V-Fib … it didn’t work. After that, I died one last time. I had stood up to use the restroom … This time, I didn’t have the communication to my brain, and instead of laying down and being able to die like that, I fell flat on my face and when I came back to, my room was full of hospital staff. It seemed like there were 20+ people in there (code blue team, code blue team – extension XXXX), all staring down at me.
Doctor Hickey had asked me if I was alright and then asked if I always had “that bump” on my forehead. I felt it and said “no.” I also discovered that my lips were bloodied up pretty good and that I had chipped a tooth and if I had a family history of seizures.
One of the doctors who was on duty that night apparently heard me fall and rushed into my room and gave me three chest compression’s … I sure hope he didn’t get zapped by my AICD.
The next morning I was rushed into surgery and put on a BiVAD (BiVentricular Assist Device – Dick Cheney was on an LVAD). It was a real pain to try to move around after that. It was easily as invasive, maybe more, than the transplant itself, as they had to crack my chest open, put some tubes in through my belly and whatever else.
The next few days in CTICU I was having some pretty crazy dreams from the meds I was on. I don’t do well with Vicodin and got switched over to Oxycodone. Everyone is different and there are options as to pain med’s. If you are uncomfortable with the pain med’s that you are given, ask the doctors to give you something else.
When I was finally moved out of CTICU, they sent me to 7 North (my favorite unit). I eventually started going for walks, not far, but I was doing it. I’m not sure exactly where this falls into place, but my feet and ankles started killing me with pain. At the time I thought it was because of all of the fluid that I was retaining in my legs. The fluid retention was so bad that my feet were about 5 times bigger than they should have been.
The pain just kept getting worse and worse and even after 15 mg of Oxycodone and two Tylenol, I still couldn’t stand, let alone walk 10 feet. But, after an issue I had about 7 months post transplant, I am convinced that it was a side effect of the Epogen shots that I was being given to boost my blood production.
    • Chest pain
    • Trouble breathing or shortness of breath
    • Pain or swelling in your legs
    • Arm or leg feels cool or appears pale
    • Sudden confusion or trouble with speech
    • Sudden numbness or weakness in your face, arm, or leg
    • Sudden trouble seeing
    • Sudden dizziness or trouble with walking or balance
    • Loss of consciousness (fainting)
    • Your hemodialysis vascular access stops working
 
Several of the staff were convinced that I was faking the pains that I was having and that I just didn’t want to walk  – yeah, like I really wanted to just hangout and party in the hospital …. Ironically enough, the worst pains that I had were in my feet and ankles and in my shoulder, from a bone that had been broken from the separation of my ribcage for the surgery to put the BiVAD in, more so than my sternum.
Dr. Deng was very proactive in helping me get this situation resolved, as well as other problems that were making my stay miserable. One of which was being bugged and interrupted seemingly every give seconds, and having people come in and check the same thing about three times in 10 minutes.
Dr. Deng arranged it so I could get some uninterrupted sleep and time to just chill and gather my thoughts. It was a lot nicer this way.
A week and a half, or two weeks before they released me to go “home” until I got my transplant, I was able to start walking just a little bit. I think it was just enough to make them sick of me and tell me to get the hell out of the hospital (That’s kind of a joke, though I’m sure they really were sick of me).
Because of the BiVAD, I had to be within an hour of UCLA, so my parents rented an apartment in Seal Beach. It really wasn’t a bad area to stay.
On Tuesday July 31, 2012, at 6:40 pm, I received my first call for a possible heart. I was sitting in the living room of the apartment while watching TV. We jumped in the car and made our way to UCLA.
After all of the processing and preparation, at the wee hours of the morning I had finally made it to just outside of the operating room. Waiting there with one of my favorite nurses, the news was broken that the heart was a no-go.
~tinman
That’s right, we got excited, made our way to the hospital, and did all the stuff for naught.
A couple of weeks later, on August 15, at about 6:20 pm, after returning to Seal Beach from VAD clinic and just finishing dinner at The Acapulco restaurant (where I had three crunch beef tacos, rice and beans) and just back into the car to head back to the apartment … I got a call from Dr. Nsair to let me know that a heart was available. Dr. Nsair went on to inform me that it was a “high risk” heart and he gave me the opportunity to accept or decline the heart. Boy, oh boy, talk about a difficult decision … After giving it some thought, I decided to play it safe and decline the heart. I mean, who really knew how long it would be until I got another call. This makes two up, two down (for you baseball fans out there).
At 11:55 that night, I was brushing my teeth getting ready for bed and my phone rings again. A tad perplexed, I went and answered it. It was UCLA again. “Are you ready to try this again?’ The friendly voice inquired. I said “yes, absolutely.” We get everything together, jump in the car and wait for my uncle to program his GPS so he could find the hospital that he had been to more than several times. Well, as luck would have it, every on-ramp to the 405 was closed. My dad had called the CHP to see if we could get an escort, but my uncle insisted that his GPS would find the way ….
We eventually ended up following a dump truck onto an on-ramp. Once the truck driver noticed that someone was following him, he stopped, got out of the truck and had a confused look on his face. This is when my uncle actually did something right. He got out of the car and yelled that I was in back and just got the call for a heart transplant. The truck driver jumped back into his truck and let us through. But thanks to the GPS we ended up being an hour late.
When I did get to the hospital and was being prepped for surgery, I had an allergic reaction to the FFP (Fresh Frozen Plasma) that was given to me to counter act the effects of the Coumadin that I had been taking to prevent clots in the cannulae of the BiVAD. It wasn’t very comfortable with my eyes about swelling shut and getting extremely itchy, I must admit.
They wheeled me into surgery and when I woke up, I had my brand new, shiny, used heart.
Semper Fidelis,
Gary Johns
~tinman1
Gary ‘Tinman’ Johns now specializes in custom engraving including any logo on glass such as wine glasses, beer mugs and shot glasses as well as on gun parts. We have several and they are totally awesome! Here is the link to his website. http://www.vinearts.net/
~gary1
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