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Well.....I got "the" phone call...we are on for Monday morning at 7AM....I will come back later this weekend and fill in background and events leading up to this., but I thought I might as well park a placeholder.
I had promised myself that I was going to try to do a decent job of organizing my thoughts as part of this process. Rather than repeat the background that I had listed in my "I'm New Thread" if you have interest, you can link to it here. I am going to try to come back to this opening post and ultimately tie together some of the other related threads such that I don't ramble all over the place. I am sure the thread is going to evolve and digress in numerous different different directions. However, here goes:
I am scheduled to have an extended myectomy on Monday morning, November 10. The prior angiogram indicated that my arteries and valves are completely clear of any therosclerosis [plaque], calcification, or stenosis which essentially means that the thickened muscle wall [approx. 2.1 cm] is responsible for mitral regurgitation and an LVOT when provoked of approximately 165 which is quite a gradient. However, all of the plumbing and piping in and out is clear. There are no issues with papillary muscle or chordae tendineae so the myectomy itself is supposed to be straight forward without additional side work, though the surgeon did indicate that they might "add a stitch" to tighten up the valve.
I have observed the actual surgery and am very comfortable with the procedure itself, though parts of it are certainly gruesome to watch. I have asked that some photos be taken so I will be able to "memorialize" the process. Prior to having the surgery, an alcohol septal ablation was attempted and terminated due to lack of a suitable vessel for alcohol injection. Up until the date of surgery I have one hospitalization for CHF in early Sept. 2014 and was diuresed for three days, my meds adjusted and have been able to get around without any specific symptoms walking 1/2 -3/4 of a mile regularly to and from numerous destinations. I have never had any issues with arrhythmia or irregular heartbeat, at least to this point. I was initially reticent about having the myectomy done, and ultimately decided to go forward due to the combination of the significant gradient and the realization that having the procedure isn't going to get easier as I get older, and that we know that my anatomy isn't suitable for an ablation.
My overarching most critical concern has nothing to do with the myectomy, rather having pre-existing CKD Stage IIIB, the risk of AKI or ["severe AKI"] associated with bypass creates a very real possibility of winding up with CKD State V [end stage renal disease] and winding up on permanent dialysis or seeking a kidney transplant. Given my professional commitments and attendant travel requirements and lifestyle issues winding up on permanent dialysis would qualify having the procedure as a catastrophic failure. At the present time, the HCM has been manageable with drugs and diet, and the renal disease has held steady. In my case, a significant improvement in the HCM and end stage kidney failure isn't a win on any number of levels. However, after extended discussions with the nephrologist, I have concluded that it makes sense to take the risk at this point. A link to the thread I started on Renal Issues and HCM can be found here. At this point, the thread has some discussion on RCIN which refers to radiocontrast induced nephropaty and limited discussion regarding bypass and AKI. Depending on how this issue develops, that discussion may expand by a substantial amount. Please be very careful with any application of the discussion here regarding renal issues to any situation...mine is a rather unique and has been subject to extensive evaluation by my nephrologist and anyone elses may be very different. It just so happens in my case to play a very significant role in my life. I did manage to fit in a spiritual visit with the rabbi and you can read about that here.
Up to this point, I have been hospitalized twice. The first was for a fracture of the scaphoid in my left wrist.The scaphoid is the most difficult bone in your entire body to break, and can be almost impossible to heal. In my case, it required three tries at bone grafting from my hip. If you have never experienced it, for those of you familiar with the 1-10 pain scale, bone grafting pain can easily fall somewhere between 9 and 12. I was on hydromorphone for close to 90 days at one stretch after sustaining a bone infection, and in a thumb to shoulder hard cast for close to 27 months which made life and work absolute **** for someone that is used to spending 13-14 hours a day on a computer. The second time I was hospitalized, I wound up with a MRSA infection IN MY LUNGS which had me intubated and on a ventilator for eight days. Being intubated for an extended period is easily the most uncomfortable and frustrating experience one can have in the hospital IMO. It is certainly responsible for my decision with the current surgery to literally prevent anyone other than one of my brothers from visiting me in the hospital until the breathing tube is removed. The lack of ability to tell someone to "SHUT UP" was a nightmare from the second hospitalization.
The next issue that I have addressed is likely to be something that many of you haven't had to address. I am 53 and single with no kids that I know about. While I have three siblings, only one is in the Chicago area. Based upon prior experience that I may elaborate upon later, my healthcare proxy is set up in a fashion that is somewhat unusual in that while it provides for my brother to be my agent in cases of last resort, it is very specific in that unless I have literally reached the point that I would be declared incompetent to make decisions for myself by a court, I am to remain the primary decision maker with regard to my health care decisions, particularly life sustaining measures. The document continues to explicitly state that any forms of sedation and pain medication are to be withheld [other than for surgery] if there is any doubt that being under the influence of such medication would cause my judgment to be impaired. Thus I have taken an overt intentional step to decline pain meds to make sure that I retain control over decisions involving my treatment. My expectation is that is a path that most people would not have as their first choice.
When I am finally discharged from the hospital, I am going home to a situation where I live alone, there are stairs to reach my bedroom, and my office is adjacent to my living space and people come to work here every day, not everyone that works for me but around eight to ten people. As a plus, there area I am located in has numerous restaurants, and every type of store one could imagine within a two block radius and everything including the grocery store and the pharmacy delivers. I know this because I have made use of that arrangement every day for years. I am a bit less than two blocks to the gym, and a block to public transportation [CTA] which is the mode of transportation I have used back and forth to Northwestern for every appointment I have had over the past half year, including transportation home from several overnight hospital stays.
I also have a couple of dogs that are good sized that like to make a habit of jumping on me when I am sitting or laying down and that is going to be an issue of some concern when I get home. I have taken everyone's advice and am looking forward to a brand new Lazyboy recliner greeting me on the day I come home and plan to make it a nest for the first couple of weeks after getting home.
I had promised myself that I was going to try to do a decent job of organizing my thoughts as part of this process. Rather than repeat the background that I had listed in my "I'm New Thread" if you have interest, you can link to it here. I am going to try to come back to this opening post and ultimately tie together some of the other related threads such that I don't ramble all over the place. I am sure the thread is going to evolve and digress in numerous different different directions. However, here goes:
I am scheduled to have an extended myectomy on Monday morning, November 10. The prior angiogram indicated that my arteries and valves are completely clear of any therosclerosis [plaque], calcification, or stenosis which essentially means that the thickened muscle wall [approx. 2.1 cm] is responsible for mitral regurgitation and an LVOT when provoked of approximately 165 which is quite a gradient. However, all of the plumbing and piping in and out is clear. There are no issues with papillary muscle or chordae tendineae so the myectomy itself is supposed to be straight forward without additional side work, though the surgeon did indicate that they might "add a stitch" to tighten up the valve.
I have observed the actual surgery and am very comfortable with the procedure itself, though parts of it are certainly gruesome to watch. I have asked that some photos be taken so I will be able to "memorialize" the process. Prior to having the surgery, an alcohol septal ablation was attempted and terminated due to lack of a suitable vessel for alcohol injection. Up until the date of surgery I have one hospitalization for CHF in early Sept. 2014 and was diuresed for three days, my meds adjusted and have been able to get around without any specific symptoms walking 1/2 -3/4 of a mile regularly to and from numerous destinations. I have never had any issues with arrhythmia or irregular heartbeat, at least to this point. I was initially reticent about having the myectomy done, and ultimately decided to go forward due to the combination of the significant gradient and the realization that having the procedure isn't going to get easier as I get older, and that we know that my anatomy isn't suitable for an ablation.
My overarching most critical concern has nothing to do with the myectomy, rather having pre-existing CKD Stage IIIB, the risk of AKI or ["severe AKI"] associated with bypass creates a very real possibility of winding up with CKD State V [end stage renal disease] and winding up on permanent dialysis or seeking a kidney transplant. Given my professional commitments and attendant travel requirements and lifestyle issues winding up on permanent dialysis would qualify having the procedure as a catastrophic failure. At the present time, the HCM has been manageable with drugs and diet, and the renal disease has held steady. In my case, a significant improvement in the HCM and end stage kidney failure isn't a win on any number of levels. However, after extended discussions with the nephrologist, I have concluded that it makes sense to take the risk at this point. A link to the thread I started on Renal Issues and HCM can be found here. At this point, the thread has some discussion on RCIN which refers to radiocontrast induced nephropaty and limited discussion regarding bypass and AKI. Depending on how this issue develops, that discussion may expand by a substantial amount. Please be very careful with any application of the discussion here regarding renal issues to any situation...mine is a rather unique and has been subject to extensive evaluation by my nephrologist and anyone elses may be very different. It just so happens in my case to play a very significant role in my life. I did manage to fit in a spiritual visit with the rabbi and you can read about that here.
Up to this point, I have been hospitalized twice. The first was for a fracture of the scaphoid in my left wrist.The scaphoid is the most difficult bone in your entire body to break, and can be almost impossible to heal. In my case, it required three tries at bone grafting from my hip. If you have never experienced it, for those of you familiar with the 1-10 pain scale, bone grafting pain can easily fall somewhere between 9 and 12. I was on hydromorphone for close to 90 days at one stretch after sustaining a bone infection, and in a thumb to shoulder hard cast for close to 27 months which made life and work absolute **** for someone that is used to spending 13-14 hours a day on a computer. The second time I was hospitalized, I wound up with a MRSA infection IN MY LUNGS which had me intubated and on a ventilator for eight days. Being intubated for an extended period is easily the most uncomfortable and frustrating experience one can have in the hospital IMO. It is certainly responsible for my decision with the current surgery to literally prevent anyone other than one of my brothers from visiting me in the hospital until the breathing tube is removed. The lack of ability to tell someone to "SHUT UP" was a nightmare from the second hospitalization.
The next issue that I have addressed is likely to be something that many of you haven't had to address. I am 53 and single with no kids that I know about. While I have three siblings, only one is in the Chicago area. Based upon prior experience that I may elaborate upon later, my healthcare proxy is set up in a fashion that is somewhat unusual in that while it provides for my brother to be my agent in cases of last resort, it is very specific in that unless I have literally reached the point that I would be declared incompetent to make decisions for myself by a court, I am to remain the primary decision maker with regard to my health care decisions, particularly life sustaining measures. The document continues to explicitly state that any forms of sedation and pain medication are to be withheld [other than for surgery] if there is any doubt that being under the influence of such medication would cause my judgment to be impaired. Thus I have taken an overt intentional step to decline pain meds to make sure that I retain control over decisions involving my treatment. My expectation is that is a path that most people would not have as their first choice.
When I am finally discharged from the hospital, I am going home to a situation where I live alone, there are stairs to reach my bedroom, and my office is adjacent to my living space and people come to work here every day, not everyone that works for me but around eight to ten people. As a plus, there area I am located in has numerous restaurants, and every type of store one could imagine within a two block radius and everything including the grocery store and the pharmacy delivers. I know this because I have made use of that arrangement every day for years. I am a bit less than two blocks to the gym, and a block to public transportation [CTA] which is the mode of transportation I have used back and forth to Northwestern for every appointment I have had over the past half year, including transportation home from several overnight hospital stays.
I also have a couple of dogs that are good sized that like to make a habit of jumping on me when I am sitting or laying down and that is going to be an issue of some concern when I get home. I have taken everyone's advice and am looking forward to a brand new Lazyboy recliner greeting me on the day I come home and plan to make it a nest for the first couple of weeks after getting home.
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