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Myectomy at Northwestern Memorial on Nov. 10

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Jordan Z. Find out more about Jordan Z.
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  • Myectomy at Northwestern Memorial on Nov. 10

    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.
    Last edited by Jordan Z.; 11-08-2014, 09:19 PM.

  • #2
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Will,you have support with you? Perhaps they can update. Justin is not into Internet posting or forums but even if he was, he was pretty out of it for the first four days due to complications. But we will be eager to hear how you are doing! But take your time. Focus on your adventure in healing! Best wishes, Jordan!
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

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    • #3
      Re: Myectomy at Northwestern Memorial on Nov. 10

      Will keep you in prayer. It won't be quite what you planned for.


      Sent from my iPad using Tapatalk
      Joel

      Born 1955 in USA, DX'd w/HCM 1996, in United Kingdom
      2011, 2013, 2014 ablations for Afib and flutter in UK, INOVA Fairfax, VA, and Johns Hopkins
      June 2014 DX HOCM at Johns Hopkins
      October 2014 Myectomy and Cryomaze at Mayo Clinic

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      • #4
        Re: Myectomy at Northwestern Memorial on Nov. 10

        Yup, you are in our prayers. I don't know NW Memorial, but one thing I have learned from this forum and talking to others is that when you get to this level of complex procedures, the are no "B - Teams" when it comes to surgical care. I'm sure you will great care and we wish you nothing but the best.
        Angus Campbell
        Golden Isles Region, Southeast Georgia, USA

        Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
        Myectomy Jan 9th 2014 at Cleveland Clinic
        Drs Lever and Smedira

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        • #5
          Re: Myectomy at Northwestern Memorial on Nov. 10

          Here's hoping that everything goes smoothly.

          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: Myectomy at Northwestern Memorial on Nov. 10

            Originally posted by Redteamer View Post
            Will keep you in prayer. It won't be quite what you planned for.


            Sent from my iPad using Tapatalk
            Thank you for the thought...now that you mention it...I had contemplated performing the myectomy on myself. I was able to locate a publisher online which had previously published guides to do it yourself neurosurgery[the preceeding word is an active hyperlink], open heart surgery, and a colostomy. When one considers the potential cost savings and experience gained..assuming a person has a reasonable pain tolerance it certainly strikes me as a reasonable approach.

            [
            Cautionary note: I am not sure with respect to font color conventions within this forum, however, in many of the forums that I have spend substantial time around, the use of a purple font is exclusively reserved to denote sarcasm. One would truly hope that in the context of the post above, the use of sarcasm would be beyond obvious. However, out of an abundance of caution the post above is highly sarcastic and I would strongly caution that there could be severely adverse and potentially fatal consequence if one was to attempt to perform major surgery on themselves. if anyone fails to appreciate the importance of retaining and actively exercising a sense of humor in dealing with whatever life has planned for them there isn't anything I can do to help them, nor do I intend to dwell on it. Just last evening, a had a couple of friends over who suggested that watching a movie would be a good distraction from the impending surgery. The movie I choose was The Green Mile....it took a couple of minutes for everyone to fully understand the basis for my selection.]

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            • #7
              Re: Myectomy at Northwestern Memorial on Nov. 10

              Jordan, wishing you the best, will be watching for updates - Linda

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              • #8
                Re: Myectomy at Northwestern Memorial on Nov. 10

                Let me extend a preliminary welcome to the club you will be joining on Monday...............the Myectomites!
                Onward and Upward !

                Diagnosed 4/07 HCM with fixed & dynamic obstruction
                Myectomy with resected cordonae tendonae 4/08 CCF
                ICD 10/08

                Comment


                • #9
                  Re: Myectomy at Northwestern Memorial on Nov. 10

                  Jordan,
                  I do recall reading a news story a couple of years ago about a guy who tried doing his own dental work, using a pebble from his driveway to fashion a crown. The fact that it became a news story either means that it didn't work out as he hoped, or that he was wildly successful and put all the dentists out of business. . .

                  Gordon
                  Myectomy on Feb. 5, 2007.

                  Comment


                  • #10
                    Re: Myectomy at Northwestern Memorial on Nov. 10

                    Originally posted by gfox42 View Post
                    Jordan,
                    I do recall reading a news story a couple of years ago about a guy who tried doing his own dental work, using a pebble from his driveway to fashion a crown. The fact that it became a news story either means that it didn't work out as he hoped, or that he was wildly successful and put all the dentists out of business. . .

                    Gordon
                    I had better not have dreams about do it yourself dentistry....there is something about dental procedures that gives me nightmares...has anyone seen Marathon Man?

                    Comment


                    • #11
                      Re: Myectomy at Northwestern Memorial on Nov. 10

                      Best of luck! Hope it all goes well for you.
                      Diagnosed with HCM in 1992
                      Myectomy at Johns Hopkins in April 2013

                      Comment


                      • #12
                        Re: Myectomy at Northwestern Memorial on Nov. 10

                        Best of Luck Jordan....I hope you have hired a dog walker or have extremely well behaved dogs. You don't want them pulling on the leash and straining your sternum while it's healing.
                        After years of symptoms:
                        Officially Diagnosed HOCM 2006
                        Myectomy 3/11/13 at non-COE
                        Extended Myectomy 7/23/14
                        At Mayo with Dr. Joseph Dearani

                        Comment


                        • #13
                          Re: Myectomy at Northwestern Memorial on Nov. 10

                          Originally posted by JillC View Post
                          Best of Luck Jordan....I hope you have hired a dog walker or have extremely well behaved dogs. You don't want them pulling on the leash and straining your sternum while it's healing.
                          Actually....I intend to walk them myself as soon as I am feeling up to it....I am looking forward to seeing them post op more than any human beings that come to my mind. They are both jumpers and keeping them off of me when I am sleeping is potentially going to be quite a challenge [one is around 100 lbs]. I am completely confident that they are going to cooperate when being walked....unfortunately I am not as confident that the neighborhood rabbits read the memo. There is only one way to find out what is going to happen, and in the worst case I am not going to wrap the leash around my wrist so I can drop it in the event of a problem. Both of the dogs are very well trained to respond to voice commands so we will deal with that one step at a time. Your concern is absolutely valid, but, it is another example of a situation where there are choices to be made, and while being aware of potential limitations, I am not going to deprive myself for something I truly enjoy out of the fear of what might happen. If I were to subscribe to that line of logic and extend it I would have to consider whether I should walk outside at all....we are supposed to get six inches of snow this coming week....and if and when I am capable of walking outside..the snow certainly isn't going to stop me either. Life constantly involves making choices and I am confident that my body is going to do a fine job of letting me know in any situation where I attempt to push too hard.

                          Comment


                          • #14
                            Re: Myectomy at Northwestern Memorial on Nov. 10

                            Originally posted by angusjcampbell View Post
                            Yup, you are in our prayers. I don't know NW Memorial, but one thing I have learned from this forum and talking to others is that when you get to this level of complex procedures, the are no "B - Teams" when it comes to surgical care. I'm sure you will great care and we wish you nothing but the best.
                            I appreciate the thought and will share the following thought...I am fortunate that in my situation both the insurance and financial situation would have permitted my having the procedure done anywhere I would have chosen...my surgeon was a Director at CCF before joining NMH. The existence of health issues made Northwestern Memorial my affirmative first choice due to the combination of experience and expertise as well as familiarity with my individual situation. While the majority of the people within this forum have been treated at CCF and Mayo-Rochester that doesn't mean that they are the best choice in every situation. If one peruses this forum the professionals at NMH....McCarthy, Bonow and Choudhury are well known and have treated quite a few patients. If anyone that is contemplating having the same surgery is distressed over not being able to get a referral or insurance coverage for a particular program, it is certainly worth the time and effort to investigate all of the available options. I would personally love to be a fly on the wall to witness anyone suggest to Dr. McCarthy that he was "B-Team"...and I can bet that there are a few people that read this forum that would share the that thought. I am exactly where I feel that I ought be going into this, and look forward to sharing the experience once they let me have my laptop back. While I own an iPad and an iPhone, as if it hasn't been obvious to those that have suffered through my posts I type somewhere around 125 WPM which is a consequence of having spent the better part of the last thirty years in front of a keyboard for > 12 hours a day. Just hoping they don't put snow mittens on me in the ICU.

                            I located a self descriptivebiography of Dr. McCarthythat I will bet many of you will enjoy....his training was at Mayo Clinic, and he was a program director at Cleveland Clinic and he shares his self perception.
                            Last edited by Jordan Z.; 11-09-2014, 02:12 PM.

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                            • #15
                              Re: Myectomy at Northwestern Memorial on Nov. 10

                              Jordan...looks like you are in great hands with Dr. McCarthy as he has what looks to be an excellent history in treating heart disease. I'm curious as to how many myectomy's he has performed?
                              Diagnosed with HCM in 1992
                              Myectomy at Johns Hopkins in April 2013

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