I have thought quite abit about even posting this, but I have learned that folks do better with information than being kept in the dark. I have some information to share.
In late 2015, I developed a sudden onset of high blood pressure. Nothing my Dr did could effectively lower it. He continued trying all kinds of meds and combinations thereof, but nothing worked. By mid 2018, the high BP damaged my heart, I developed AFIB and I was diagnosed with congestive heart failure. A cardioversion got me out of AFIB, but the high pressure remained, and nothing helped. In mid 2019, I went back into AFIB, and it has been permanent for over 2 years, despite 2 ablations, several attempts at using some very dangerous drugs, and 7 more attempts at cardioversions. During this time my heart was getting worse and worse, to the point that my DR sent me to the University of Florida for a new (still experimental) open heart surgery. During the workup for the surgery, CT imaging was done, and the results were that I has tumors in my lungs, liver, kidney and adrenal gland. I was very sick at that point - oct 2020 - and figured "this is it". Ultimately more testing was done, and the list was trimmed down to "only" my kidney and adrenal gland having tumors. WHEW! The cardiologist wanted to proceed with the heart surgery, but I had misgivings... I felt that my heart was not the culprit, but instead the symptom. Meanwhile surgery was sceduled for early march 2021 to remove my kidney and adrenal gland, as they are considered cancerous.
As time for the surgery closed, testing on my heart was done to be sure I could tolerate the surgery. My ejection fraction was a solid 15%. If you know about hearts, you know what that means. The surgeon cancelled the surgery as he said he didn't think I would survive it. Well, I've been studying and studying about my situation, and come to find out the cardiologists were being blinded by their specialty, and failed to consider the effects of hormones (adrenal gland) on the heart. I was a PITA to my heart failure DR and told him to stop treating me like his other patients, as I am his only patient with a known adrenal tumor. I found a you tube video by a Harvard endocrinolgy research DR that completely explains my situation, and what I have living through with my heart. I got my DR to put me on a drug the Harvard DR said would resolve the issue - Eplerenone. It blocks aldosterone, which causes the kidneys to retain salt and water, and drives the BP crazy, while wearing out the heart. The medicine has helped so much I've been in cardiac rehab for the last 2.5 months, and have brought my EF up to 20-25%. Not good, but not as bad.
Meanwhile, surgery has been rescheduled, and I go in 3 days from now, Sept 8. My kidney and adrenal gland are going to be removed. There is a team of DR's, as they consider this "high risk" and "complex". They probably hit the lotto with me as a patient in a teaching hospital... my situation is so rare no DR even though to consider it, and it was by luck the tumors were found. The medical people have a word for that - "incidentaloma".
I honestly don't know how this is going to turn out. My heart is the wild card. Nobody knows if I can tolerate 4.5 hours of surgery and anesthesia. There is a special anesthesiologist for that. My surgeon (Dr Su) literally wrote the book on robotic urological surgery. The endocrinologist has made arrangements for specialized drugs to be administered if the adrenal tumor turns out to be a pheochromocytoma and it drops a load of adrenalin on me. The result from that could be stroke / heart attack / death. I'm going to try to avoid that.
Anyways, the bottom line here is what this means to you, my customers. I'm not going to be flashing for ??? I can't give a date. Like I said, I don't know how this is going to turn out. For carburetor customers, I have trained the perfect mechanic to do your carbs, using all my equipment and methods. His name is Kevin, and he does a great job. Don't hold out on carb work waiting for me to come back, just reach out to Kevin, he knows what to do. If you email me, I'll auto response with Kevin's contact information.
For my COG friends... it's been a mostly great and always entertaining ride. I have met some of the best people I know through COG, folks that are and will be lifelong friends. I'm humbled and thankful for that. Hopefully my ride here isn't done, but you never know how a ride is going to end up... that's not a reason to ride a couch. Life is better when you are reminded you're alive... like making that curve by the skin of your teeth. That's what I'm doing now... diving into that curve, and feeling very alive.
Steve
In late 2015, I developed a sudden onset of high blood pressure. Nothing my Dr did could effectively lower it. He continued trying all kinds of meds and combinations thereof, but nothing worked. By mid 2018, the high BP damaged my heart, I developed AFIB and I was diagnosed with congestive heart failure. A cardioversion got me out of AFIB, but the high pressure remained, and nothing helped. In mid 2019, I went back into AFIB, and it has been permanent for over 2 years, despite 2 ablations, several attempts at using some very dangerous drugs, and 7 more attempts at cardioversions. During this time my heart was getting worse and worse, to the point that my DR sent me to the University of Florida for a new (still experimental) open heart surgery. During the workup for the surgery, CT imaging was done, and the results were that I has tumors in my lungs, liver, kidney and adrenal gland. I was very sick at that point - oct 2020 - and figured "this is it". Ultimately more testing was done, and the list was trimmed down to "only" my kidney and adrenal gland having tumors. WHEW! The cardiologist wanted to proceed with the heart surgery, but I had misgivings... I felt that my heart was not the culprit, but instead the symptom. Meanwhile surgery was sceduled for early march 2021 to remove my kidney and adrenal gland, as they are considered cancerous.
As time for the surgery closed, testing on my heart was done to be sure I could tolerate the surgery. My ejection fraction was a solid 15%. If you know about hearts, you know what that means. The surgeon cancelled the surgery as he said he didn't think I would survive it. Well, I've been studying and studying about my situation, and come to find out the cardiologists were being blinded by their specialty, and failed to consider the effects of hormones (adrenal gland) on the heart. I was a PITA to my heart failure DR and told him to stop treating me like his other patients, as I am his only patient with a known adrenal tumor. I found a you tube video by a Harvard endocrinolgy research DR that completely explains my situation, and what I have living through with my heart. I got my DR to put me on a drug the Harvard DR said would resolve the issue - Eplerenone. It blocks aldosterone, which causes the kidneys to retain salt and water, and drives the BP crazy, while wearing out the heart. The medicine has helped so much I've been in cardiac rehab for the last 2.5 months, and have brought my EF up to 20-25%. Not good, but not as bad.
Meanwhile, surgery has been rescheduled, and I go in 3 days from now, Sept 8. My kidney and adrenal gland are going to be removed. There is a team of DR's, as they consider this "high risk" and "complex". They probably hit the lotto with me as a patient in a teaching hospital... my situation is so rare no DR even though to consider it, and it was by luck the tumors were found. The medical people have a word for that - "incidentaloma".
I honestly don't know how this is going to turn out. My heart is the wild card. Nobody knows if I can tolerate 4.5 hours of surgery and anesthesia. There is a special anesthesiologist for that. My surgeon (Dr Su) literally wrote the book on robotic urological surgery. The endocrinologist has made arrangements for specialized drugs to be administered if the adrenal tumor turns out to be a pheochromocytoma and it drops a load of adrenalin on me. The result from that could be stroke / heart attack / death. I'm going to try to avoid that.
Anyways, the bottom line here is what this means to you, my customers. I'm not going to be flashing for ??? I can't give a date. Like I said, I don't know how this is going to turn out. For carburetor customers, I have trained the perfect mechanic to do your carbs, using all my equipment and methods. His name is Kevin, and he does a great job. Don't hold out on carb work waiting for me to come back, just reach out to Kevin, he knows what to do. If you email me, I'll auto response with Kevin's contact information.
For my COG friends... it's been a mostly great and always entertaining ride. I have met some of the best people I know through COG, folks that are and will be lifelong friends. I'm humbled and thankful for that. Hopefully my ride here isn't done, but you never know how a ride is going to end up... that's not a reason to ride a couch. Life is better when you are reminded you're alive... like making that curve by the skin of your teeth. That's what I'm doing now... diving into that curve, and feeling very alive.
Steve