Mangled In The Medical Machine - 5
This will be a brief entry since I'll be heading to the hospital Wednesday morning for back surgery and not sure when I'll feel up to writing again....Hopefully soon.
I saw my primary care doctor last Monday for lab followup and discussion about about surgery. he did manage to talk to the neurosurgeon and meet up with him at the hospital and told me the surgeon wanted him to talk me out of surgery since he felt it would do nothing to improve my condition. As my doctor said, "surgeons tend to be very egotistic and only deal in black and white." It's binary, cured or not cured, with no room for the various shades of gray in between.
The good news from my doctor visit was my viral load was undetectable this time around with T's in the high 400's, good ratios, everything else looked fine. Even my doctor is amazed that my immune system is limping around to well on it's own after 16 months off the cocktail. Some people claim I'm playing with fire by not being on the HIV meds, but as my doctor said, "if the virus had mutated, your viral load would be increasing and T cell count dropping, but during the past 16 months the viral load has been inching down toward undetectable.
My doctor does feel that I stand to benefit from back surgery, how much he's not willing to speculate on, but he shared his hope that the wasting will at least slow down, or better yet stop and possible reverse a bit. While I was there I got my annual flu shot.
After meeting with my PCP I had a meeting with my peer counselor in the research study. We covered a lot of territory and wound up talking about techno geek subjects, club music, videos, etc. I used my gift card from this visit to buy a good pair of Sony studio monitor headphones since the only pair of headphones I have are a 20 year old pair of Sony professional headphones that have seen better days.
Last Tuesday I drove with Rob to the hospital to meet with the neurosurgeon, then for my pre-op physical. The surgeon still seemed reluctant to do the surgery but said it's the only option open that "might" (big might) slow or stop the progression. We reviewed my latest MRI again, and informed me of the potential risks; infection, slip up during surgery like the surgeon sneezing while he's cutting and severing my spinal cord. I felt a bit more comfortable learning he is well respected and served on the surgical staff at Mass General hospital as well as Beth Israel. At the end of our meeting he asked if I understood the risks and limited benefits. Being of sound mind I nodded and signed the release forms. The surgeon was also surprised that I've been off all meds as long as I have and doing so well immune system wise.
From his office I walked around the corner to the West campus medical center for preop testing. The first nurse chatted with me, took my vitals, drew more blood, checked my reflexes (which are totally missing in my legs due to nerve damage) and ran an EKG. She was also that someone who's been living with HIV for so long looked so well....looks can be deceiving.
Next the anesthesiologist came in, asked questions about medical conditions and allergies, and listened to my lungs and checked lung capacity. She was also surprised that someone living with an antique strain of the virus was doing so well. Finally the recovery room nurse came in and chatted with me for a while, asking more questions. She was also amazed ...yadda yadda, blah blah....about my long term survivor status.
My last stop was having a chest x-ray taken. Being a smoker, I always sweat this part but the x-rays came back normal. OK I don;t drink and never did drugs; coffee, chocolate and cigarettes and high tech toys are my remaining vices.
I've spent most of my time since the exams trying not to think about the surgery, filling my time with naps, burning music CD's, more naps, watching episodes of South Park, The X-Files and Outer Limits on DVD...one means of escape.
I'm trying to go into this with an open mind and positive attitude, hoping I prove the specialists wrong that I will have no improvement. I ask for prayers and healing energy.
I'll see ya'll after this is all over.
I saw my primary care doctor last Monday for lab followup and discussion about about surgery. he did manage to talk to the neurosurgeon and meet up with him at the hospital and told me the surgeon wanted him to talk me out of surgery since he felt it would do nothing to improve my condition. As my doctor said, "surgeons tend to be very egotistic and only deal in black and white." It's binary, cured or not cured, with no room for the various shades of gray in between.
The good news from my doctor visit was my viral load was undetectable this time around with T's in the high 400's, good ratios, everything else looked fine. Even my doctor is amazed that my immune system is limping around to well on it's own after 16 months off the cocktail. Some people claim I'm playing with fire by not being on the HIV meds, but as my doctor said, "if the virus had mutated, your viral load would be increasing and T cell count dropping, but during the past 16 months the viral load has been inching down toward undetectable.
My doctor does feel that I stand to benefit from back surgery, how much he's not willing to speculate on, but he shared his hope that the wasting will at least slow down, or better yet stop and possible reverse a bit. While I was there I got my annual flu shot.
After meeting with my PCP I had a meeting with my peer counselor in the research study. We covered a lot of territory and wound up talking about techno geek subjects, club music, videos, etc. I used my gift card from this visit to buy a good pair of Sony studio monitor headphones since the only pair of headphones I have are a 20 year old pair of Sony professional headphones that have seen better days.
Last Tuesday I drove with Rob to the hospital to meet with the neurosurgeon, then for my pre-op physical. The surgeon still seemed reluctant to do the surgery but said it's the only option open that "might" (big might) slow or stop the progression. We reviewed my latest MRI again, and informed me of the potential risks; infection, slip up during surgery like the surgeon sneezing while he's cutting and severing my spinal cord. I felt a bit more comfortable learning he is well respected and served on the surgical staff at Mass General hospital as well as Beth Israel. At the end of our meeting he asked if I understood the risks and limited benefits. Being of sound mind I nodded and signed the release forms. The surgeon was also surprised that I've been off all meds as long as I have and doing so well immune system wise.
From his office I walked around the corner to the West campus medical center for preop testing. The first nurse chatted with me, took my vitals, drew more blood, checked my reflexes (which are totally missing in my legs due to nerve damage) and ran an EKG. She was also that someone who's been living with HIV for so long looked so well....looks can be deceiving.
Next the anesthesiologist came in, asked questions about medical conditions and allergies, and listened to my lungs and checked lung capacity. She was also surprised that someone living with an antique strain of the virus was doing so well. Finally the recovery room nurse came in and chatted with me for a while, asking more questions. She was also amazed ...yadda yadda, blah blah....about my long term survivor status.
My last stop was having a chest x-ray taken. Being a smoker, I always sweat this part but the x-rays came back normal. OK I don;t drink and never did drugs; coffee, chocolate and cigarettes and high tech toys are my remaining vices.
I've spent most of my time since the exams trying not to think about the surgery, filling my time with naps, burning music CD's, more naps, watching episodes of South Park, The X-Files and Outer Limits on DVD...one means of escape.
I'm trying to go into this with an open mind and positive attitude, hoping I prove the specialists wrong that I will have no improvement. I ask for prayers and healing energy.
I'll see ya'll after this is all over.
posted by The Dreamer @ 4:05 PM
1 Comments:
At 6:53 PM,
Michael said…
Good luck man, my thoughts and prayer are with you. Hugz
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