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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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  • #46
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Originally posted by JillC View Post
    Having your experience at Northwestern documented here on the forum is the best testament you can give for those who come here to gather information about where to go for HCM care and Surgery. I'm glad you are having a stellar recovery. Keep us posted!
    There is nothing that makes me feel better than the hope that other people benefit from my experience

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    • #47
      Re: Myectomy at Northwestern Memorial on Nov. 10

      Well......a good path continues....has an echo yesterday...provocable maximum gradient is down to 13 from 165. Nothing resected, all pipes clean, they did add an Alfieri stitch to the Mitral Valve repair. My creatinine which was 2.74 on Wednesday is down to 1.68 today which is the lowest it has been in a year. They are leaving my pain meds as 4mg Dilauded PO which is what works for me due to hydrocodone allergy. I am going home this morning, I am up to approximately 3.5 miles and 8 flights of stairs at a go. I got a greenlight for pistol shooting at 5 weeks and shotgun for approximately 12...and 16 to get back on the motorcycle which isn't a huge issue in February in Chicago.

      I am going to the office on Monday morning going to try and start with 4 hours for a couple of days and then start to ratchet up from there. We are going to start what was described as intensive cardio workouts at 4-6 weeks and hope to be back to the gym with weights at 10 weeks. I am not complaining, and as was explained.....if they see how I do and can push harder then we are going to push harder. All in all it strikes me as balanced with plenty of room for me to intensify assuming everything stays on schedule. I am going to go to Jamaica for two weeks at Xmas.

      Hope everyone has been as amused as I have been Over and out.

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      • #48
        Re: Myectomy at Northwestern Memorial on Nov. 10

        Sounds like you've got a Plan! . You are plenty smart enough to know when to go and when to hold back. I do agree with your earlier idea to not wrap the dogs leash around your wrist in case of rabbits LOL
        Maybe your heart's new efficiency will help your kidney function...or at minimum preserve it at 3B.
        I think the best part of your plan is the trip to Jamaica.....Best of Luck....you have me beat already at 3.5 miles and 8 flights of stairs.
        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

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        • #49
          Re: Myectomy at Northwestern Memorial on Nov. 10

          Originally posted by JillC View Post
          Sounds like you've got a Plan! . You are plenty smart enough to know when to go and when to hold back. I do agree with your earlier idea to not wrap the dogs leash around your wrist in case of rabbits LOL
          Maybe your heart's new efficiency will help your kidney function...or at minimum preserve it at 3B.
          I think the best part of your plan is the trip to Jamaica.....Best of Luck....you have me beat already at 3.5 miles and 8 flights of stairs.
          I don't know how long the improvement will last, but we may be heading back to IIB....or we shall see..in the time being...its watch what I eat, swing for the fences, etc. If my body tells me to slow down, so be it..if not its gonna be a **** of a ride.

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          • #50
            Re: Myectomy at Northwestern Memorial on Nov. 10

            Who's going back and forth? I must have missed that part, but NBD. N'western is a great place and Dr. Bonow is well known for his expertise. I would never dissuade anyone from going there. Enjoy your time back in the office Jordan.
            Onward and Upward !

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

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            • #51
              Re: Myectomy at Northwestern Memorial on Nov. 10

              Originally posted by LindaSo View Post
              Who's going back and forth? I must have missed that part, but NBD. N'western is a great place and Dr. Bonow is well known for his expertise. I would never dissuade anyone from going there. Enjoy your time back in the office Jordan.
              Linda.....

              My sense is that there are some that seem to be convinced that if it didn't happen at Mayo or CCF that it must be third rate medicine. I am sure that they do good work and they certainly have the numbers in HCM....when I look at everything else going on at NMH including the number of complex valve, transplants, LVAD, etc not to mention everything else....and I have no particular need to list anyone else and people are welcome to disagree...NMH was my first choice and if I had to travel I would still have come here.....after seeing the results of his work, Dr. McCarthy was an excellent choice. Besides cardiac I saw an attending from Nephrology every day I was in the hospital, same for Endocrinology and that was important to me. To answer your original question....there is no issue on my side....I made the right choice for me and where initially if people didn't agree I might have said something....and now it is at a point that it is no longer of interest.

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              • #52
                Re: Myectomy at Northwestern Memorial on Nov. 10

                This is the recliner that my two doors down neighbor from high school brought over that is going to be my "nest" for the next couple of weeks

                IMG_1054_zps639f187d.jpg

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                • #53
                  Re: Myectomy at Northwestern Memorial on Nov. 10

                  Happy Nesting! Looks perfect.
                  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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                  • #54
                    Re: Myectomy at Northwestern Memorial on Nov. 10

                    Originally posted by Colorado213 View Post
                    Happy Nesting! Looks perfect.
                    Thanks I am looking forward to it.

                    Comment


                    • #55
                      Re: Myectomy at Northwestern Memorial on Nov. 10

                      Update Nov. 17

                      1. Home health nurse came out listen to chest ,checked vitals, and did a blood draw for Comprehensive Panel and Renal Panel.
                      2. Humana nurse case manager called and went through status update....she indicated that I do have comprehensive cardiac rehab coverage.
                      3. Home visit from Annette, Nurse Practitioner from Dr. McCarthy's team discussed location of shoulder pain and she indicated that cause is likely from irritation of brachial plexus during "spreading " portion of sternotomy likely aggravating dorsal scapular and suprsscapular nerves. Approach to treat like breakthrough pain with regular tylenol and capcesin in arthritis strength. Opioid pain meds not likely to do much.

                      My thoughts......wow...I didn't think healthcare could work like this...Cardiac team makes house calls? Humana reminding me about cardiac rehab being covered at a high level, home health from NMH coming to me to do blood draws rather than my having to travel. NMH Home Health, and Humana have both been through home and office and genuinely seem interested is seeing everything go right.

                      Did 6.5 hours of work at my desk on the day which is ONE week post surgery. Going to Northwestern Gym to walk with a friend. So far this hasn't been an unpleasant 3rd day of recovery at home.

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                      • #56
                        Re: Myectomy at Northwestern Memorial on Nov. 10

                        November 17 Evening Update

                        I have discovered that my right shoulder has been appointed spokesperson for the rest of my anatomy. It wasn't happy this morning and required dilauded, capcesin, and a tylenol to calm it down by around 11AM this morning. It slept most of the day and I was able to be productive for an initial 6.5 hours during the day.....stayed quiet for two hours of walking at the gym and another two hours this evening to finish two letters.

                        A fair number of friends stopped by this evening and brought dinner which was nice. I just realized that my stove hasn't been used in 8 months because I have been storing files from a project in it. May wind up not going to Jamacia as another situation has popped up. I am involved with a project in Oakland that involves the first fully transparent and legal cannabis producer in California. It looks like a second phase is going to get built in Humboldt County in Northern CA. Friends live in Carmel By The Sea, CA...two summers ago I spent a month out their being their uncle when mom was diagnosed with meningioma which is a large benign brain tumor. The tumor was removed at CHOMP [Community Hospital of Monterrey Peninsula] where she was hospitalized and rehabbed for seven weeks. Due to dad's work commitments I was housekeeper, baby sitter and dinner chef for the entire time period, doing my work from 5AM - 1PM when kids started coming home from school.

                        The combination of the new client project and the fact that the weather in Carmel if best between November and year end provides an excuse for me to spend five or six weeks with them right on the Pacific. I managed to clear my entire calendar of physical meetings so I can do what I need to from anywhere......tomorrow morning I am going to try to put arrangements in place. If I learned one thing that summer it was that my intentions to do anything can be subject to veto by three kids with minimal notice. It was -2 degrees in Chicago this morning....it ought not be difficult to make this decision. Now I am going to try to put my shoulder back to sleep and get some sleep myself. Though I should take a moment to introduce Philip, Minori, Julius, Lucien and Bella.....they are available to provide references that I am almost human on occasion.

                        945781_10151777784404708_253258073_n.jpg

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                        • #57
                          Re: Myectomy at Northwestern Memorial on Nov. 10

                          Jordan,

                          It is so great to hear you are coming along so wonderfully!!! My mom and I both love the team of McCarthy and Bonow as that is where we had our myectomy and Maze done many years ago. With your schedule, I hope you will be able to get to cardiac rehab, it really does help.

                          Be well, Janet
                          Believe in the goodness of mankind.

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                          • #58
                            Re: Myectomy at Northwestern Memorial on Nov. 10

                            Thanks Janet, I appreciate your thoughts......I won't claim to make good choices all the time but Dr. McCarthy and his team exceeded my expectations and I am going to try and see this through. The post above is about my trying to get out of Chicago in November/December which is never a bad thing. The Pacific Coast makes it almost impossible....I would literally have to try to avoid getting out and walking or biking and three little kids add a dimension of chaos that decides when they want me to participate.....I lose the choice. Hopefully, the priorities stay where they need to...I had a realization that the myectomy was very successful....the personality transplant failed....the surgery will greatly improve the quality of how my body function....it isn't going to do anything to change who I am, or how I think, though individual acts like a friend loaning me a chair are a reminder that doing something kind where you can help is good. There have been several instances where a person that hasn't me me will ask me if I have two mouths, one on each side of my head and an ear in the center of my forehead that must be rather small....the mental image is horrible, the message is clear. My schedule doesn't control me...that's reversed. Hopefully I managed to respond to two sentences in a paragraph.....appreciate your thoughts. It has become clear that my situation has spared me from the stresses that some endure with insurance and financial factors that make a difficult situation even harder.

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                            • #59
                              Re: Myectomy at Northwestern Memorial on Nov. 10

                              November 18 Morning

                              I realize that I have written about high tech medical issues and how well all of this has gone. Today I had a humbling lesson about how much I wanted two things, a good night's sleep and not to be full of ****. Well, Thanks again to my friend for...the chair made for a wonderful "nest" and except for getting up for pain meds, I slept through a full night without pain which is the first time since surgery a week ago Monday. Second....for anyone that hasn't experienced it [everyone here knows this but, I shared this entry with my Facebook page so I am leaving int in], large quantities of opioid pain killers are a godsend....with one big but, or shall I say butt in that you are always constipated. Well, thank god for stool softeners........the combination of constipated and a sternal chest incision are a brutal combination, and beginning the day with a "dump" [and I am sure all of you can see the smile on my face as I actually have a relevant reason to write a blog post like this] has just made my morning. So its off to a hot shower, and then to start a day.

                              [P.S. Everything had started so well, then it happened....I was just getting dressed and applied the capcesin cream to my right clavicle as part of the pain control and went to put my shirt on....forgot a small step of rinsing off my hands and got the capcesin cream which is full of hot pepper extract into the incision. [I would bet someone is having a good laugh right now its "smartass payback" well suffice it to say that it is burning like **** and feels like I got stabbed with a spear and one of the cream is that is is very "sticky" which means that it won't wash out of the incision and I can't do anything to try and "scrub" it out so hopefully it wears off soon. Finally, an updated photo of my "nest".

                              IMG_1056.jpg
                              Last edited by Jordan Z.; 11-18-2014, 07:32 AM. Reason: added pepper in incision

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                              • #60
                                Re: Myectomy at Northwestern Memorial on Nov. 10

                                See, I need to visit the HCM forums more often! I wish I would have stumbled onto this post sooner.

                                I underwent a septal myectomy at Northwestern about two years ago. Although McCarthy's schedule at the time precluded him from taking me on as a patient, I had the privilege of being the patient of Dr. McGee. McGee and his team treated me as if I was one of their own loved ones. It was a tremendous experience. Mayo is wonderful, but like you've explained Jordan, Northwestern is by no means a b-rated facility. I hope your story will encourage anyone in the Chicagoland area to consider Northwestern.

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