Pectus Excavatum Without Surgery

Well I never thought I’d be writing to all of you about this and yet, here we are.

Yes, even if this photo I am wearing the strange silicone plate on my chest.

For those who don’t know me, My name is Xander Edward and I go by they/them pronouns. I’ve been a respiratory therapist for about ten years. I served the Universiry of Virginia during swine flu and Lehigh valley cedar crest doing Covid.

The rest of my resume is unimpressive constituted by two year positions or less. To some a red flag, for me it’s my reality of how Pectus Excavatum effected my life.

Some of you might be familiar with the restrictive lung disease, for those who aren’t; It's a very common skeletal disorder that causes the sternum to dip in. This reduces the amount of space in the thorasic cavity and restricts respirations. My experience has been getting worst the older I get. I joke that it's as if a new set of rubber bands are wrapped around my chest every year, making it tighter and tighter.

I could no longer put my patient’s symptoms above my own. I would be managing the airway in complete isolation gowns barely managing my own breath and loosening count of the babies reps. For me, it was time to walk away. That was 2016.

From then, I returned to school as a disabled student and began to learn to ask for help. A difficult task for anyone who survived living though childhood with a hidden restriction.

I found myself walking dogs and catching fish for money. It didn’t pay much, but It was my passion. I rode my bicycle for hours a day and became my own pulmonary coach.

One of my favorite clients

Over time, my body began to give out. I’d lay awake all night, writing angsty poetry as a thirty year old man, a definite red flag for the more mundane American, I was in pain though and didn’t want to cause bodily harm to myself and I didn’t want to burden my friends with a condition that had no cure.

Pectus Excavatum comes in all shapes and sizes. It’s a deformity of the sternum which cascades into the thorax and interrupts breathe and heart beat. In layman’s terms, it’s a squished heart sandwich. They come with numbers, and my Haller index is 4.7 +\- 1.3, depending on the capture of breath during the M.R.I.

I had a surgery. That also has a name; a failed ravitch procedure. I don’t know much of the details, because it’s to close to my heart, literally. I tend to get empathy pains whenever I work on someone who had a open heart surgery as my own surgical site has never stopped hurting.

I did learn though, that there is a good chance the procedure reduced the amount of cartilage surrounding my sternum. The cartilage is the stretchy portion the the thoracic cavity. A loss of this tissue could possibly have inflated the restrictive process i experience.

It’s all to much to think about. When I was laying in bed missing my dogs though, the constant inward pressure was all I could think about.

After a few years of google searches and consults with experts, it was collectively decided that a follow up nuss procedure would not increase my thorastic cavity space, and thus the symptoms would persisted even after the metal bars would be removed.

My Pectus is broad and deep. It looks like an ice cream scoop got a little greedy with my in between nipple cream. I’m sorry for that visual except actually, I’m not.

This is where go fund me comes in, because my request is actually rather small but the implications could be quite large.

A cure was found. Almost accidentally because I was nearly scared off by having to place a money order to Germany. Any of my P.E. peeps will be well familiar with it because I’m sure most of them have a love hate relationship with it. Of course I’m talking about the renowned work of Ekart Klobe himself, the bell vacuum device,

My first Vacuum bell came in 2019. I kind of knew then it was to small, but this was the largest one on the market, so I learned to adapt.

I am excited about this dual functioning device known as the vacuum bell, it's essentially a silicone chest plate. It acts In Two ways, the first doesn’t necessarily impact me but over time the device can reshape the sternum through negative pressure applied directly on the skin distally. This takes time and a lot of physical fitness.

My use of the device functions in its second capacity as a prosthetic. The issue is, none of the research and the insurance company does not view it in these terms yet. I wear my vacuum bell about 12 hours a day, everyday if possible. I'm forced to take breaks to allow my skin to heal, but at this point the device is an extension of my body. When I don't have it, I tend to get very anxious before spiraling into a deep despair. Not being able to take a full breath, one that actually satisfies the body, is a very very challenging experience.

But it does make an excellent prosthetic for a few reasons. Firstly, it recognizes a body that has a void. This will help lift said void and keep it propped in a neutral position. This does a few things, some possibly harmful for folks who are prone to vascular tarring. Luckily I don’t have to worry about aforementioned side effects but folks with marfans syndrome and other heart and/or vascular conditions are certainly at risk.

It’s not a miracle cure for all. That’s why it doesn’t have an associating icd10 code. Confounding that quandary is how difficult respiratory patients can be. They are alway in an high intensity state, some self medicate and feel to self conscious to exercise. I didn’t find the courage to stay clean and return to work and exercise until I discovered what the vacuum bell does for me. When I put the vacuum bell on, it’s as if I took an adult dose of morphine

Look at me. A very happy employee with their V.B. Device discreetly under my uniform.

My chest pain disappears, my posture improves, I can feel blood coursing down my left leg, one of the largest arteries. The thumping of mitral valve regurgitation ceases to be. It’s meditative. But then it doesn’t last.

I typically wear my V.B. Eight to twelve hours s a day, sometimes more. I have a break day every three, sometimes more and I do daily cardiovascular exercises to compensate for the muscle deterioration caused by the prosthetic.

Oh No! Deterioration!

After about four months of daily use with excellent care for these amount of hours, the device begins to retain body oder and really needs to go through some sort of sterile processing which I tend to use a month long ammonia bath. The older they get, the worst the acne gets. With heavy acne means more break days which will requires more exercise. It’s an exhausting dance when done on your own. The finally phase of the vacuum bell happens when micro leaks begin consistently leaking the negative pressure, to the point where it needs to be repumped every few minutes or more.

I’ve purchased two so far. My family and friends purchased four and that led to multiple strained relationships, especially when I came back asking for more. They cost 700 dollars apiece, are shipped from Germany and can get stuck in customs.

The reason I buy three at a time is because I’ve had one stolen from my porch and the delay led to a six week short term disability because it has become impossible to work without them. Im currently on administrative leave from work, though I don't know if I'll be getting more paychecks. The company required I took a mandatory EMT course, which was fine, but my progress with the home work was getting consistently delayed as I struggled to keep my older vacuum bell functional. Some studies sessions felt more like a wrestling match Is if halfnelsoned my vacuum bell to stay inflated, but the micro leaks have done nothing but grow, which is why I'm here and not at work.

I’m pretty good at balancing my finances. I’m not afraid to spend a dollar on self care, and I’ve paid rent my entire life. I’ve never been able to save much money, because every time I start to my body once again would give out. The most PTO I’ve accumulated at any given time is about 30 hours, usually do to colds, bicycle accident or other adult confuffles, usually associated with the absent mindedness caused by an inability to take a deep breathe without the vacuum bell device.

Photos from adventures I had after I discovered the vacuum bell

I’ve fallen in love with them. So essentially I pay for health insurance twice, one payment for the insurance, and the other payment to buy all the necessary supplies to manage my health condition. This past year I also bought 2 CPAP machines and a Bipap for a grand total of 5000 dollars, due to the sleep doctor’s inability to understand why bipap might help a person with a restrictive disease.

Luckily, the bipap machine will last for years, where as the vacuum bell lasts a year at most.

When the vacuum bell is functional I get my professional confidence back. Now when I go to work, I have my shield on. My iron man processor. My heart beats healthily as I feel oxygenated blood reaching down to my toes.

It’s been on my list of things to do. To buy three more. Two thousand dollars, It isn’t a terrible expense, especially if I could keep them in good condition for a year. I’m not happily about paying 2000 dollars a year on top of my regular health insurance premiums but I’m happy with the results right now.

So I’m trying something new, a bandaid to keep me going so that I can save for the next group of vacuum bells I order.

The technology has a lot of potential, especially with 3-d printing technology. It requires consultation with dermatology and physical therapy and cognitive therapies can greatly help managing expectations, a cardiologist or pulmonologist are required to sign off before a customer can even order one and nowthere are also many companies who are making products that are subpar and don’t fit will. I’ve tried a few, The German v.b. Is the most therapeutic and expensive.

But it comes from Germany, from a website that is rather unassuming and the order takes place over email. It’s all very professional but going to a nearby doctor with an American made device would also be very nice.

As a professional, I want to learn more about the PE. Community, I want to attend conferences, meet other patients and visit Germany to discuss the obstacles preventing 3d modeling from coming to fruition. It’s been on my radar of action but due to Illness, short term disability and the demands of being a pediatric/neonatal specialized respiratory therapist working as a clinician for a flight emergency transport team, I just haven’t found the time or money to pursue these goals.

By helping me, I promise to keep helping the patients I serve and to be a contributing member of the Pectus Excavatum community through education, experience & hope and all funds will be used to keep vacuum bells part of my everyday life.

Wow thank you all for listening, And let me just end with a little philadelphia pride! please reach out with any questions or your own struggles with skeletal muscular disorders.