Summary of Recent Events

August - October 2023

One of the risks of my powerful breath is that my sneeze reflex is equally powerful. I enjoy spicy foods. On 08/09, I was eating a spicy stuffed pepper for lunch which stimulated the sneeze reflex. This reflex is not controllable. With a mouth full of capsaicin laden pepper, I had a powerful inhale and could feel the burn in my trachea. In bed that evening, I heard musical wheezing and over the next 3 days I noticed progressive chest tightness and shortness of breath. I feared that I had capsaicin-induced chemical pneumonitis (ARDS), involved my physician, Chris Hager M.D., and we decided that admission to the hospital for monitoring and IV steroids was the best course of action. I was admitted on 08/13.

I received IV Decadron which dramatically reversed my symptoms. We were in the process of

weaning the Decadron when I suffered an acute hypoxic event the morning of 08/17. I had

Mitral Valve prolapse diagnosed in 1985. Other than the murmur, I was asymptomatic. We

discovered the cause of this hypoxic event was the rupture of the chord holding the Mitral

Valve down leading to a flail Mitral valve, severe Mitral regurgitation, and flash pulmonary

edema. The treatment is emergency open heart surgery and repair/replacement of the Mitral

valve, not a viable option in a patient with ALS. In me, it was a fatal condition. I reached out to a Cardiothoracic surgeon, Jeff Cope M.D., who made me aware of a non-invasive treatment of the condition called a MitraClip (Transcatheter Mitral Valve Repair) which gave me hope. This is something I would consider. A complicating factor was that it would take 5 days to assemble the team, ably led by Rupal Dumasia M.D. and Mark Epler M.D., to do the procedure. I set about to make a plan with Raymond Foley M.D. to bridge that period. I determined that I would best be served by intubation and sedation to rest my muscles of respiration and PEEP (Positive End Expiratory Pressure) and diuresis to treat the pulmonary edema. I was confident in my yoga-toned core musculature to support me weaning from the ventilator.

The procedure was performed on August 22nd, required 2 clips, and reduced the regurgitation from severe to mild-moderate. I was rapidly weaned and extubated the next day. I was able to cough effectively to clear the residual of the pulmonary edema and left the ICU on August 28th on room air with an oxygen saturation in the mid-90’s. My performance defied the expert’s predictions with one pulmonologist advocating for a tracheostomy prior to extubation. I’m sure glad we didn’t follow his recommendation.

On August 29th, I had a PEG tube placed by Mark Johnston, M.D. under Propofol General Anesthesia. Both the anesthetic and the procedure were deemed uncomplicated.

I was discharged from the hospital on September 1st after a 19 day admission. I had to lobby my Hospitalist, Christopher Weese, M.D., to support my discharge. He was reticent to let me go. I agreed with him that, on paper, I didn’t look suitable for discharge. I convinced him that I know my disease, I had all the support that was required, and I needed sleep in my own bed.

Getting back into my environment allowed me to do an assessment of my status. I realized how incredibly weak I was. It was as if my disease, other than my breathing, had rapidly progressed. I could not roll over in bed or do wheelchair pushups. My quads were not firing. There is no way that I could stand.

September 7th, 2023

On Sunday, September 3rd, I had a black stool indicative of an upper GI bleed. We withheld the Plavix. The black stools continued necessitating an admission on 09/06. It was theorized that the blood was residual from the procedure. I did not have an EGD. My Hemoglobin reached a low of 7.7% before stabilizing. I did not require a blood transfusion and was discharged the evening of 09/07. I am currently on a baby aspirin (81mg) a day as antiplatelet therapy.

September 20th, 2023

It is now September 20th. How am I doing, you might ask? I guess I’m doing better than expected. I wonder what the over/under betting line in the ICU was with respect to ever getting off the ventilator:) I knew better. I was confident in my plan of intubation, peep, diuresis, and rest to bridge the period to the procedure and confident in my breath to support weaning and extubation. I think I surprised a lot of people. Another example to support my statement that “I have found a key to unlock my disease, and that key was discovered through yoga.”

My breath has remained strong. I register between 97 – 100% on the pulse oximeter. I am still

feeling exhausted, but it is getting a little less every day. My hip flexors and quads have gotten very weak. I attribute the 3 weeks at bedrest with the staff turning me from side to side with no participation from me as the cause. I use my hip flexors to elevate my pelvis to turn myself over in bed. I need to sleep on my belly. We have developed a “Call Bell” system where I push a button when I need to turn over the first time and someone comes to help. It takes a village. Hopefully, with time, I can regain strength in these muscles to allow me to do it by myself. I use my quads to stand and transfer. They are still too weak to attempt this, but my wheelchair pushups are getting stronger. Maybe??

I am eating well with no problem swallowing. My constitutional sense of wellbeing is returning. My yoga practice is coming along slowly. I have had only glimpses of Prana so far. I must remain patient and respectfully invite it in.

I am still alive. The journey continues!!!

Stay tuned!

September 24th, 2023

The morning of September 22nd, I suffered a massive GI hemorrhage necessitating an emergency admission to the hospital. I received 4 units of blood to get my Hemoglobin above 8.0. An upper endoscopy identified a bleeding AVM (Arterial Venous Malformation) in my duodenum. It was treated with cauterization and no other source of bleeding was found. I was discharged earlier today and am exhausted, but alive.

Interesting observations from the recent string of insults:

The hospital is not friendly to my ALS. I lose significant strength and endurance with each admission. I have a theory on why. I have dealt with my ALS by a daily yoga practice. These practices would last 2-3 hours with me seated on the end of my cushion unsupported by any external means. I am only supported from my internal core. In the hospital, I am on my back in bed totally supported. It is a physically impotent position from which to move. I am not required to use any of my core and am not in a position to change this. My daily practice is necessary to keep my core musculature active and my limbs loose and strong. It shocks me at how rapidly I have lost strength and endurance in the hospital. Every day in the hospital takes a month or two of the progress I have made over the last 8 years. ALS is a powerful disease. If I manage to remain at home and find Prana again, I wonder how much I will be able to recover?

∙

My breath has remained strong. I am able to take deep breaths, cough and my oxygen saturation is 98%. A tribute to the yoga-trained core and Prana.

My cardiac status carried me through the recent GI bleed without a problem. I was hypotensive with a heart rate in the 120’s and never short of breath. I was scheduled for a cardiac echo on the 23rd, but obviously missed that. My valve must be competent enough to manage this insult.

October 01, 2023

There is no way I should be feeling this good. Had a good night’s sleep, appetite is good, and poops are regular and dependable. Today was arguably the best practice ever with Prana in abundance. The Journey continues.

The following are some notes from today’s practice:

• Life is good.

• When you have your breath, you have the essence of life.

• I have discovered a key to unlock my disease. The key is Prana.

• My breath is the constant in my existence. It brings me comfort and pleasure. It powers my strength.

• My recovery started from the inside out. My practice is led from inside. The power emanates from my solar plexus. It radiates out from the seat of my being. It comes from my soul.

• I didn’t seek it out, it found me!