Scuba dive anyone? There are amazing views of sea life and the occasional ship wreck. I too have been 33 feet below sea level just not with an oxygen tank strapped to my back.
Medically speaking my life has been a hot mess for the past year and half. At some point I will draw a timeline of events just to help avoid mass confusion. But for now I will hone in on one particular set of symptoms that has led to a whole new diagnosis. And one way to treat this diagnosis is through Hyperbaric Oxygen Treatment.
I have done many dives breathing in pure oxygen in the comforts of scrubs and a blanket watching whatever Netflix shows my heart desires.
Last fall my abdomen began to swell and then disappear again every day. A 24 hour cycle would look like this…I would wake up looking normal but as the day would go on my abdomen would begin to swell. In the evening I would look about five months pregnant. By nighttime I would look eight months pregnant. Just like when I was pregnant with my kids, my belly button actually felt like it was going to pop. My daughter started to call it my “water baby” because that is what it was. Then in the morning I would be back to normal just to start the cycle all over again.
Thankfully I was never in any pain when I swelled. God spared me this. It was never appeared to be bloating as my abdomen was always felt squishy to the touch, like fluid.
At this point I had been gluten, dairy and soy free for over six months as I had already been tested for food allergies and intolerances. It was clear to my doctors and I food was not the root cause.
I have been working with Vicki Magnan, an Occupational Therapist who specializes in lymphedema and chronic swelling for four years. Vicki now practices at AZH Vascular and Wound Care and has been a guest blogger for Rising Up Strong. To read what she wrote click here http://www.risingupstrong.com/look-alive-people-vicki-magnan-has-the-floor-time-to-read-what-the-expert-has-to-say-on-chronic-swelling/
My appointments with Vicki tend to be in the mornings so when I ended up in her clinic one late afternoon for manual lymph drainage she exclaimed, “Ashley, your abdomen is literally swelling before my eyes!” She then observed how my face was red too. She asked me to take pictures at night so she could see the abdominal swelling. That night I did just that.
This is early evening…
Later in the evening…
Later at night…sporting my edema wear
The next morning…
Clearly, something was wrong…once again.
I have been chronically swelling all over for about four and half years now as it is a common symptom of both Ehlers-Danlos Syndrome and dysautonomia. It is already quite scary for the body to not get rid of the toxic fluids that are normally flushed out thru the lymphatic system. Since my autonomic system does not work automatically Vicki has to manually drain the lymph fluids. She also fits me for correct (i.e. effective) compression wear to help keep my lymphatics working properly.
So let’s take a moment to think about this. In addition to the chronic swelling that occurs all over my body on a daily basis, I was now experiencing daily abdominal swelling of say 20 – 30 pounds of fluid. I think it is safe to say my body was all kinds of f’ed up. Not good, not good at all.
Within a week my parents and I were meeting with Dr. Jeff Niezgoda, the founder, President and CEO of AZH and Vicki’s boss. Normally I attend doctor appointments alone but this was new and required a lot of out-of-pocket money.
A new diagnosis is thought to be at the root of the abdominal swelling along with other symptoms I had been experiencing: a mitochondrial disorder. This was nothing new since having dysautonomia and Ehlers-Danlos Syndrome comes with a depletion of mitochondrial, but to have another disorder was a new ballgame. I have also met with the Connective Tissue Clinic at Children’s Hospital of Wisconsin and after reviewing my new symptoms they too believe I have a mitochondrial disorder.
There I was in the right place at the right time since research showed Hyperbaric Oxygen Therapy (HBOT) effectively treated mitochondrial disorders and AZH offers hyperbaric as part of the their treatment protocol. As part of their world class clinic, they have four hyperbaric oxygen chambers and a trained team dedicated to providing the best care possible.
Trust me when I say you want trained medical personnel on the other side of the chamber when shit goes awry such as low blood sugar or a person’s lungs are not tolerating a dive that day.
As I sat on the examine table, my parents in the visitor chairs, Dr. Jeff on the stool and Vicki next to me the weight of my medical issues came baring down. Dr. Jeff and Vicki never shy away from looking at the entire history of the patient, even as specialists. I experienced a mix of emotions having every medical issues rattle off including all the symptoms. But having a laundry list of issues is my reality and it needed to be talked about especially with my parents. I felt waves of depression, validation, anger, embarrassment and shame just to name a few. It took a lot not to start crying right then and there. I remember looking Dr. Jeff right in the eye and said something to the effect of “I need your help Dr. Jeff.” And while he could not make any promises he was game to do everything he could to help.
And then I had hope and hope is a game changer.
Before I explain what Hyperbaric Oxygen Treatment does it is important to know the different diagnoses that HBOT has been proven to cure or at least improve::
- Anemia
- Brain abscess
- Bubbles of air in your blood vessels (arterial gas embolism)
- Burns
- Carbon monoxide poisoning
- Compromised skin grafts and flaps
- Crush injuries
- Decompression sickness
- Diabetic wounds
- Hypoxia (low levels of oxygen in the tissue)
- Infection of the skin, tissue or bone
- Ischemia Reperfusion Injury
- PTSD
- Sudden deafness
- Sudden vision loss
- Thermal burns
- Traumatic Brain Injury (TBI)
- Wounds especially non-healing
Research also shows that HBOT can treat the following:
- AIDS
- Alzheimer’s
- Anxiety
- Arthritis
- Asthma
- Autism
- Bells’ palsy
- Cancer
- Chronic Fatigue or Chronic Fatigue Syndrome
- Depression
- Gastrointestinal ulcers
- Heart disease
- HIV
- Migraine
- Mitochondrial Disorders
- Multiple Sclerosis (MS)
- Parkinson’s disease
- Spinal cord injuries
- Sports-related injuries
- Strokes
I know right, so many different types of conditions. How does one treatment help so many? By breathing 100% oxygen at greater than normal atmospheric pressure, the person’s blood carries this oxygen throughout the body. While fighting bacteria it stimulates the release of substances called growth factors and stem cells, which promote healing. HBOT allows stem cells to mobilize, white blood cell activity to increase and stimulates growth factors and other cells.
This is why Dr. Jeff thought I might begin to feel better, although he made it clear that it was a chance. He patiently explained to my parents and I how hyperbaric works and the various mile markers of when I would know if it is helping.
In order for hyperbaric to be effective a person has to do so many dives and those dives cannot be spread apart. In fact, anything less than four dives a week is not advised meaning it may not be as effective. Dr. Jeff recommended I commit to 20 dives to start with the understanding that if I noticed positive change I may need to do more.
You see, this was an investment in every sense of the word. My diagnosis has not been researched enough to be covered by insurance so this is truly out-of-pocket and it is not cheap. Not only a financial investment but also an investment of time. Between drive time to and from and daily dives it was about two and half to three hour commitment, five days a week.
Not everyone has to make this kind of financial commitment because many of the diagnoses are in fact covered by insurance. Even Medicare covers HBOT depending on the diagnosis.
As treatments go, hyperbaric can be enjoyable. For an hour or longer one can nap or watch a Netflix show surrounded by pillows and blankets. Some may say it is claustrophobic; however, many models are made out of clear acrylic so you can see out and HBOT technicians can see in.
The only annoyance is having to clear your ears as you dive down similar to scuba diving or flying. Hyperbaric Oxygen Therapy is safe for all ages including children. If a child or anyone who struggles with clearing their ears would benefit from HBOT then they can have tubes put in and their ears will clear on their own.
It did not take long for me to notice the positive impact Hyperbaric Oxygen Therapy was having. Within the first week of dives my abdomen stopped swelling. I also stopped needing to nap in my car between appointments so it was obvious my fatigue lessened. Over the past four years or so my fatigue would become uncontrollable and I would often have to pull over in a parking lot, lock the doors, set my alarm and sleep off the fatigue.
By the end of twenty dives it was clear HBOT was helping quite a bit so I continued for another 20 dives with even more results. And then I did another 20 dives making it a total of 60 dives. I felt like a whole new person. Even Dr. Jeff could see it physically as I looked healthier. My brain and body were functioning better…literally every cell in my body was operating at a much higher capacity.
Sixty dives was a good place to stop. Dr. Jeff explained how if my symptoms came back in within two months than we would need to do a booster set of dives which is often 10-20 dives. Unfortunately my symptoms did return within four weeks; however, an unknown virus created a pandemic shutting the world down so it was not until a few weeks ago I was able to see Dr. Jeff and Vicki for a much needed follow up.
I am on dive eight out of twenty for my booster and once again I feel like a functioning human and knowing every cell in my being is working as it should is a bonus too.
I am extremely grateful to Dr. Jeff, Vicki and the AZH staff for their compassionate care and going the extra mile for their patients. I feel honored to be a patient of AZH since their doors opened early 2017.
So yeah, pure oxygen. Who knew?
I for one can attest to how something as simple as breathing pure oxygen can help a person live a more functional, healthier and happier life.
For more information about AZH go to https://azhcenters.com/