July 2023 - Heart and the Concert That Never Was
I knew a man. Let's call him Jim. He can name every Philadelphia Phillies player, including their batting averages dating back to when they were known as the Quakers. He is a walking DJ of 50’s and 60’s music who can tell you the artist and release-year of every song that comes on the radio. He’s a singer and the lead baritone in three different choirs. He has all the answers for old time game shows, from “Password” to “The Newlywed Game”. He is addicted to dark roast coffee, black… absolutely no cream, no sugar. He is also blind, autistic, and a presumed schizophrenic. He may have saved my life.
But this chapter isn’t about Jim. He’s only one of the catalysts of it.
Jim is talkative. Not communicative. He gets upset here and there, but had only broken things, never hurt people. He had a history of being abused by his parents. He opened up to me about it a couple of times. I felt that we had a good, building relationship. As a disability advocate, I was well equipped to hang with him.
I visited him at the house to listen to music. We went to a Phillies/Dodgers game. I took him to choir. We went to meals. He even came to my apartment one day for a break.
At a certain point, Jim was accepted into a group home. Anyone knows that the cost of private one-on-one care at a private residence is exorbitant. His POA was out of town and arranged for Jim to try out the "Program". This was a series of classes Jim would go to every weekday to give him an activity outside of the home. I was asked if I could help out, and because I knew him, I thought I might ease the burden, my do-gooder attitude made me say yes.
Because Jim was in choir, the program director was pleased to put Jim in their choir class for first period. This was not the same choir Jim was used to. In fact, it was barely a choir at all. To qualify to get into this program, you needed to be blind and have one other disability. For most, it was a neurodiverse issue. The choir members shouted, made sounds, talked whenever they wanted, needed mobility help getting to the bathroom, and, most importantly, could not sing.
I was escorting Jim to his next class, and he had been triggered. It was bad.
But I knew Jim. I could talk him out of it. I'm a disability advocate. I could calm him down. He over-confidently felt that he would never hurt me. "Jim," I spoke with the quietest voice. "Jim."
With Jim's history of abuse and his desire to break out of what he perceived as jail, he grabbed me. Hard. Me against a 62 year old, linebacker built, 250 lb man, was no match.
He let go of me after two minutes. When I thought he was done, he lunged again knocking me against a fence and grabbing me and did not let go again. My heart took a long time to settle down. But it really felt like deep asthma.
This was April 25th.
The next weekend, the GF and I went on a hike. Less than a quarter of the way up the hill, I was having problems breathing. But it was not the usual asthma. I was really sucking wind and deeply. Walking up the stairs once I got home, I felt a sharp pain in my chest. I started to have issues where I couldn't stay seated, and I couldn't walk very far.
I finally went to urgent care and the doctor. They both told me it was asthma. I was prescribed prednisone and a nebulizer with albuterol. The doctor assured me it was allergies as everyone was being hit extremely hard this season.
I believed him and went away. Used up the steroids. A month later, late May, I was really having issues. I wrote into the doctor, and he told me to make an appointment with the pulmonologist. Sure. The pulmonologist could see me on July 5th.
I could no longer walk ten feet without feeling a shortness of breath and a pain in my chest. June was bad. The doctor told me there was nothing he could do. I called my brother-in-law, a vascular surgeon, and he said it sounded like my heart and to go get a stress test. My doctor said I could not get a stress test until I saw the pulmonologist.
Around this time, the incident with the screaming parent happened. I had severe heart palpations during the entire call.
One Friday in late June, Board member Diana, her husband Yael, and their two kids, were participating in a cello camp at Pomona College, where the GF happened to work. We made a plan to meet at the evening cello concert.
I hadn't driven all week, but I had a terrible time in the car. My legs were swollen and achy, and (skip if you're grossed out) boy parts were swollen to the size of baseballs. Not that easy to drive. I called my bro-in-law one more time, and told him my symptoms. He told me to drop everything and get to the hospital right then.
Over the same time period, we had started to think seriously about doing a concert on August 6th at the Colburn School. We put down a $1,000 deposit as students, parents, Jonathan, and Javier made their travel arrangements to join us in Los Angeles. The GF and I got in an argument about how many people we were having stay at the house. (I lost. Only Javier.) I arranged to have Justin Lee stay at my mom's.We launched ticket sales and started to have some parents and my regular attendees buy blocks of tickets. It was going to be a big fundraiser and showcase. I started booking mentors/musicians for the show. I emailed Ben Phelps and told him I wasn't conducting. We started to think about sponsors.
"You have congestive heart failure." The ER doc gave me some Lasix via IV and told me I'd be urinating. A LOT. I really hadn't realized that my legs looked like tree trunks, and I was retaining gallons of water. Great. Finish this IV, and I'd be on my way out of the ER and home. Nope.
Eight days later, they released me from Huntington.
I'd met a lot of doctors and nurses. One funny thing during this stint was my BP was running low. Maybe too low. The regular nurse was at lunch, and I had a floater. Phoebe was visiting. And the stupid floater calls a code on me.
Into my room pile about 15 people. Apparently I told a lot of jokes. The doctor told my GF later that he had never had a patient like me. The Chaplain showed up, and I threw him out. I wasn't about to kick the bucket. We had a concert upcoming.
I met the heart failure specialist who got annoyed with me when I pointed out under the "goals" square on the white board where they wrote all the medical stuff, I scribbled "Dodger Game with SIster".
(My sister, Justin, and the boys went to the game and had their regular five-rows-back, in-front-of-1st-base seats and Albert Puljos. They sent me a photo and brought me a Dodger blanket and a bobblehead.)
The doctor indicated that my heart problem was pre-existent and would have eventually killed me (in three yeas or so), and the assault triggered everything. So while that was not the best, Jim saved my life in a way. Yay!
On the last day of my stay, I logged onto Inception from the hospital. I had spoken to the Leadership team, and I had mixed emotions, but they were ready to take the concert on without me.
A lot of parents were on the line for that session, and they refused. Leigh, Lundy and Jordan's mom, told me that it would not be ok without me, and they would all wait. It was only flights.
It was both sad news, but really touching.
A days later.
I visited my new PCP, as I fired my old doctor. But I was having some issues still breathing. He told me to go to the ER. I declined, but he made me promise if I wasn't feeling well by the next day, I had to go in.
The next day.
E.R. - Admitted for four days. The E.R. cardiologist told me I might be prepped to go to Cedars for a heart transplant. YIKES!
This time, I was on Floor 5-West at Huntington. I saw the heart failure doctor who told me I did not need a transplant.
And there are some nurses on 5W who were just really stand out amazing. I think for many of them patients just come and go, but they don't realize the impact on someone who is going through some trauma.
Candyl was the head nurse of the wing. I heard the other nurses complaining about how she scheduled them, so I was pleasantly surprised when she turned out to be extremely compassionate. She told jokes, and made you and your family feel like it would be ok.
On Day 4, I was let go.
There was a Board meeting for Fox Family on July 20th. I made it to that. On July 21st, I was readmitted to Huntington Hospital FOR ELEVEN DAYS!
The heart failure specialist saw me right away, and I asked her what I needed to do. But her answer was really unexpected. "Nothing. This is your third time here. It is on me."
I got every test. An MRI, CT, and a SWAN where they were going to thread a camera through my neck. They tried and told me they would have to go through my groin. Because they went through my groin, I had to stay in the ICU on my back without moving for five days. (I'm a side sleeper.)
Best part of being moved to 5W after the ICU. Candyl was back. And I met Jessie.
Jessie was an overnight nurse who was on for two nights. I wish every person in the world was as awesome as she is. We chit-chatted a lot. She asked for TV and movie recommendations. She told me about the trip she was taking with boyfriend and brother on the weekend. She broke up the complete boredom.
I needed a shower, but I wasn't allowed to take one. They rolled me away for another test, when I got back Jessie goes, "I don't have any orders or permission for a shower, but here are some towels and some soap. I have to go work on charts for the next twenty minutes, so I won't be here. I can't tell you what to do." The first shower in seven days felt great. Sponge baths are not a good substitute.
On the second night, Jessie was telling me about how if she saw me on the street, she couldn't say anything, but if I saw her, we could talk. I quipped that I would never know what she looked like because of her mask. Just as she was getting off shift, she came in and took her mask off. It was classy.
I stayed in the hospital so long that Jessie came back on my last night and told me about her amazing trip. Candyl was also on. The floor was short staffed, so they both worked into the morning which was really nice, as I was to be discharged. GF was on her way. I was so excited. I had my things packed. I passed out and banged my head.
Celebration was over. Candyl was amazing as she talked to me privately. The cardiologist wanted me to get a neuro exam now. Yikes.
But three hours later, I was released and onto my medical journey. I am on a million medications these days and am a walking pharmacy.
I need to spend time not being down about my health. So I'm working a lot. GF and I went on a couple vacations. My eyesight went horribly wrong, and I ended up with a traumatic cataract injury which was operated on (ironically by one of the eye screeners from the vision fair. Even more crazy, one of the other eye screeners caused it by hitting my cataract when giving me an eye injection.) I had a gall stone, and so my gall bladder was removed. And I had developed nodules on my lungs and went into AFIB at some point over Christmas which required a cardioversion and more drugs.
The funniest anecdote when I checked in with my gall bladder surgeon and told him I was still in a bit of pain, he told me, "Well of course you are. I stabbed you three times and twisted the knife." Ha!
All this to say, I am still ticking. And to everyone who stopped by, sent us food, sent us flowers, visited anyway when I said no, bought me Dino, my stuffed dinosaur... and really showed compassion during this difficult time.... THANK YOU.
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