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My Horrific Seven Months

By ScotCharles

June 13, 2012

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I haven't written for quite a while. My excuse is that I have been careening from one health issue to another and haven't had the strength to write. I have learned quite a lot from these illnesses. I am still struggling to reckon the past seven months.

In November I had a mild heart attack. I was at UCLA for an appointment with my neurologist, Dr. Elyse Singer. The trip to UCLA is always grueling for me. I can no longer drive so I have to rely on a disabled transit service. Since I am prone to profound weakness when stressed, I use a power wheel chair for the trip.

As is always done before seeing Dr. Singer, her nurse took my vitals -- temperature, pulse rate, oxygenation, and blood pressure. This time my blood pressure was 195 over 180, which is a dangerous level. Dr. Singer examined me and determined that I was having a heart attack. I was rushed to the Emergency Room where further tests were done that confirmed I was having a heart attack. I was given aspirin to treat the heart attack as well as some other drugs in an intravenous drip. The doctors told me after some imaging tests were done that I had calcium in my heart tissue and plaque in my cardiac arteries. The protease inhibitors I take for my HIV, the doctors told me, had likely caused my condition. I remember being pissed off that the AIDS meds had put me in this situation.

Over the next several hours with medication my blood pressure came down and the enzyme the heart produces during a heart attack disappeared from my blood.

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I spent the night at UCLA in the observation unit attached to a monitor by probes pasted on my torso. The pain in my chest was bad so I asked a nurse for something to stop the pain and was told that because of the heart attack she could not give me anything for the pain; toward morning the pain subsided.

I could not sleep and channel surfed the time away. I became bored and started to play with the controls on my bed. Something I pushed caused the bed to start sounding "ping-pong-pang." Nothing I did stopped the noise. Finally, I buzzed the nurse to tell her my bed was making noise. She couldn't stop the noise and called maintenance. The maintenance man arrived a few hours later by which time I was going mad with the continuous "ping-pong-pang." The maintenance man couldn't fix it so after a conference between the nurse, the maintenance man, and the resident, it was determined my bed should be switched with one that wasn't making noise. The trouble was that all beds at UCLA were occupied so I would have to wait until a bed became available. Meanwhile, the bed continued to "ping-pong-pang." After several more hours, an orderly came to switch beds. He said, "Why hasn't anyone pushed the 'Call' button on the bed to stop the noise?" and then pushed said button whereupon the noise stopped, after six hours of "ping-pong-pang."

The cardiac specialist came soon after the noise fracas, and told me that my vitals had returned to normal, my heart attack had been caught in time and there was minimal damage to the heart tissue. She released me to go home with some prescriptions. I was a very lucky boy to have a heart attack while at UCLA. Anywhere else and the attack would have been more serious.

Just as I got home, the worst windstorm in 100 years hit the San Gabriel Valley, where I live. The winds rushed down from the mountains in swirling eddies that toppled trees, snapped electric lines and stripped all leaves from every tree and shrub. Oddly, not one of the leaves stripped from the trees and shrubs ended up in my yard. I think all those leaves piled up against the hills at the south end of the Valley. I never did hear who had to rake up all of them.

Of course, the power went out and the weather turned icy. I couldn't get my prescriptions filled as no pharmacy in the Valley had electricity. Luckily, my partner and I had learned our lessons from being in the Loma Prieta Earthquake in San Francisco in 1989 and had a portable generator at the ready. At least for a few hours each day, we could have heat and watch television. We have a gas fireplace in the lounge where we spent our daylight hours wrapped in blankets. We have a gas cooker so we could make meals for ourselves, even as the food in the fridge spoiled. We had just had groceries delivered and the fridge was full.

We lived this way for a week. We got out a few times to see the damage in the neighborhood and get burritos at a Mexican restaurant that stayed open during the crisis. The electricity finally came back on and life returned to normal.

I was once snowed in when we owned our hotel in Blue Ridge, Georgia. My partner, Jim, couldn't get to the hotel because of the snow and I spent my time with two elderly women who lived close by. We had one bottle of Scotch and several cords of wood to keep us warm. However, one of the women finished off the Scotch the first night, so the three of us spent the next four days huddled around a wood stove seething with resentment at the woman who drank all the Scotch. At least the restaurant where we were camped had a gas stove and the walk-in freezer was stocked. As bad as that was, I think the wind storm of 2011 topped it.

As it always does, life returned to normal. I began seeing a kindly cardiologist. My infectious disease specialist went on a five month trip to her clinic in Tanzania so I couldn't see her as I usually did. In February, I began to have severe headaches whose pain only responded to some Vicodins I had left over from a previous lumbar puncture. I told my cardiologist about the headaches and he gave me more Vicodin.

In early March while a nurse and social worker from AIDS Project Los Angeles were making their monthly visit, my partner, Jim, had a stroke. The nurse was wonderful and explained to the 911 operator my partner's symptoms. We had registered with Los Angeles County Emergency Services and the EMTs had our medical histories at the ready. Jim was rushed to the hospital. I got to ride in the front seat of the ambulance with the siren blasting.

At the hospital, Jim was put into a shared room. The other tenant was throwing up in a waste paper basket. After nearly an hour, he was taken to another part of the hospital, while Jim and I waited for the doctors to tell us what had happened. A neurologist gave Jim a bedside neurology test. I have taken enough of these tests to know what an abnormal test result is and could tell that Jim had damage to the right side of his brain. A CT scan was done which showed the damage was minimal. The brain is an amazing organ that can heal itself if given a chance and the doctors said Jim would be back to his old self in a few days.

I went home to rest. I woke up the next morning with a fever and the worst headache of my life. I have never been one to let a little illness stop me and I went on with my day. Jim came home the day after his stroke. We both spent the next few days in bed, Jim weak from his stroke and me with a fever of a 102, despite my usual bravado in the face of illness.

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Reader Comments:

Comment by: Bernard (Philadelphia) Wed., May. 29, 2013 at 2:12 am EDT
Hi Scott...I hope you are doing ok? You have not posted recently and just wondering what's going on in your life? I find your blog very inspiring especially when you discuss your trials and tribulations with the early onset of HIV Dementia. I am currently dealing with the same diagnosis and there are not a whole lot of people blogging about it on a personal level. Well...enough for now and I hope you are doing fine.

Best Regards,
Bernard M.
Philadelphia, Pennsylvania
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Comment by: Bernard M. (Philadelphia) Fri., Jan. 18, 2013 at 10:51 pm EST
Hi Scott,

Very glad to hear from you. I am basically in the same boat as you are except most of the time I have difficulty finding the oars, so to speak. Sharing the details of your life and illness has at a minimum help me locate an oar every once and awhile. Keep up the good fight and I very much look forward to your next blog post!

Best Regards,
Bernard M.
Philadelphia, Pennsylvania
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Comment by: Mike (Los Angeles, CA) Thu., Sep. 6, 2012 at 7:26 pm EDT
A gripping account. It shows you how we are simply not "bullet proof", and surviving is like waiting for the shoe to fall off...
Cardiac issues are incredible with HIV as well as stroke concerns as you articulate. Very fortunate that you were in a medical facility while you were getting this intense "warning alert" that you were going into cardiac failure.
One can only imagine how many others are out there, but only silent, who slip away into the night.
Lifestyle and living with toxic meds that save our life, as we lose our independence (as our careers slide away) is a reality.
Living with a partner who can "back you up", is vital. The lone ranger, doesn't last too long.
Mentally, the awareness of all this does not help, but it is what it is...
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Comment by: Bob (Denver) Wed., Jun. 27, 2012 at 1:14 pm EDT
O.K., but what is your real problem? I sympathize (sp?) totally---I had PCP back to back, and hope you are feeling much better. My doctors told me later--"We'll bury this one".
They have had no such luck!!!!
Again, hope you are recovering nicely--get back to the flower beds--they need you!
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Comment by: Dee (Pennsylvania) Wed., Jun. 27, 2012 at 11:52 am EDT
Your article initally made me chuckle at all the awful things that happened-the rainstorm, the lady who guzzled the Scotch, etc. As I read, however, I grew more pensive. You are such a graceful survivor. Your words truly amazed me-all the illness, the side effects, the stroke of your partner, your physical pain-yet you still make time to get out and plant in your garden, chop vegetables, and enjoy nature. There are people who have endured a lot less but who complain so much more. I'm not minimizing anyone's struggle, but I am marveling at your love of life and endurance. I am sending you and your partner thoughts of of love and peace. I am thanking God for allowing me to stumble upon your story. I will pray for you both and I hope you have a long enjoyable life of love. Keep sharing-people are reading :-)
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Comment by: Brittany (New York) Sun., Jun. 24, 2012 at 10:34 pm EDT
I'm in awe of your ability to remain mentally serene through times of such difficulty. I wish the sense of oneness of which you speak were more easily accessible to you (and to all of us) outside of times of crisis.

Thank you, very much, for sharing your story with us. I wish you health and peace. Happy gardening! : )
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Comment by: Ken Warnock (Royal Oak MI) Sun., Jun. 24, 2012 at 8:34 pm EDT
I know I've had a couple of rough years with relapses of cryptococcal meningitis, but you have had an especially rough and challenging time! Stay strong!!

Peace,

Ken :)
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Comment by: Anonymous Mon., Jun. 18, 2012 at 6:41 pm EDT
So sorry that you guys have been having a rough time. I will keep you in my prayers. Thank you for writing, I have been wondering how you are.
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Comment by: Sheri (Ohio) Mon., Jun. 18, 2012 at 12:10 pm EDT
ScotCharles, it's good to see an update from you. With so many challenges and frustrations, I'm glad you have your lovely garden to enjoy! I appreciate the straightforward honesty in your blog posts.
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Comment by: Green Trees (Atlanta) Thu., Jun. 14, 2012 at 10:46 pm EDT
Hi,
I read your blogs whenever you post. I am very sorry to hear of your recent troubles, both you and your partners. I plan to keep both of you in my prayers. I read your blog today, and I felt humbled. In the midst of everything you're going through 1) you found time to post and 2) you still find a way to maintain hope, be appreciative, and find beauty. You make me want to go out and find beauty in my world too.

Stay well sir, and God Bless!!!
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:03 pm EDT
Thank you for your prayers. The world is full of miracles if we would but see them.
Comment by: Dee (Pennsylvania) Wed., Jun. 27, 2012 at 11:53 am EDT
Green Trees, your comment is so true. This article makes me want to appreciate the beauty in my world as well.


Comment by: Jane (San Jose, CA) Wed., Jun. 13, 2012 at 3:44 pm EDT
Hi Charles,
Wow, what a journey you and your partner went through! I was glued to my computer reading your story of what has transpired over the last seven months! I am glad you made it and wish you and your partner all the best!
Jane
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:04 pm EDT
Thank you for your wishes.


Comment by: Bob (Canada) Wed., Jun. 13, 2012 at 2:58 pm EDT
I don't know how I came across your blog,, but I subscribed,,, and since then this is your first entry,,,
It is received with much gratitude,, your sharing is educational and inspirational,, I admire you in so many ways,,,,
I also am enjoying my garden,,, and yes it is difficult to keep up the energy,,, lilies blooming here, roses too,,, take care and thanks for sharing cheers Bob
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:06 pm EDT
I have posted many times and invite you to read my past posts. It is good to hear from a fellow gardener.


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ScotCharles

ScotCharles

ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to TheBody.com's Bulletin Boards.


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