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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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  • #61
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Originally posted by Rick Hall View Post
    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.
    Thanks Steve....NMH was my first choice for reasons I attempted to articulate in earlier posts. Finally, I found some official guidance on what constitutes an experienced facility and surgeon for HCM. The definition is contained in 2011 ACCF/AHA Guideline for the Diagnosis and Treatment of Hypertrophic Cardiomyopathy at Section 6.2.2.3 and it says

    Operator and institutional experience, including procedural volume, is a key determinant of successful outcomes and lower complication rates for any procedure. For HCM, a disease of substantial heterogeneity that is relatively uncommon in general cardiology practice, this is an important issue. As with the recommendations made in the “2008 Focused Update Incorporated Into the ACCF/AHA Guidelines for the Management of Patients With Valvular Heart Disease” about expected outcomes for surgeons offering mitral valve repair , it would be prudent and appropriate for individual centers, surgeons, and interventional cardiologists to demonstrate sufficient success and safety to justify ongoing use of these procedures.

    Although it is difficult to define a precise case volume or cumulative experience required to perform these procedures, at least 1 study suggests that the learning curve relative to invasive therapy in HCM may require the performance of at least 40 procedures. As a consensus opinion, the writing committee recommends an operator volume of at least 20 procedures or that the operator work within the context of an HCM program with a cumulative procedural volume of at least 50 procedures.

    In addition, given the data available from experienced centers, operators and institutions should aim to achieve mortality rates of <1% and major complication rates of <3%, with documented success in both hemodynamic and symptom benefit for their patients. This is best achieved in the context of a systematic program dedicated to the multidisciplinary and longitudinal care of patients with HCM.
    It took a fair amount of searching to fine the source information, but it clarifies that experience is a critical factor, the definition of sufficient procedure volume for surgery and overall number of cases, and the target mortality rates are specified. Thus, a person making a choice of COE for treatment or surgery has criteria to identify an "experienced center" with a quantitative measure, and can inquire about mortality and complication rates at a facility...most publish outcomes once a year in news letter, and it clearly suggests that higher procedure volume is an important factor in success, so one might infer that more is better, but the sole definition provided is what is the minimum threshhold to define experienced.
    Last edited by Jordan Z.; 11-19-2014, 12:09 AM. Reason: Found authoritative statement and added

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    • #62
      Re: Myectomy at Northwestern Memorial on Nov. 10

      Update Nov. 19

      Today was relatively uneventful..a box came from amazon.com with a wrist based watch/continuous display heart monitor with re-chargable batteries that doesn't require a chest band. I also got a portable pulse-oximiter. Both were items that the person in-charge of cardiac rehab asked me to get. I didn't wait for rehab to start as I am already up on the bike at the gym and am walking. I did 45 minutes at a fairly slow steady pace on the bike. This may come across as sounding dumb, but my stamina is 3-4X what it was before the surgery already. I am just walking or biking at this point, no running but, it feels like "normal" stamina has already returned, and so I am wondering what cardiac rehab is going to be like. I had a brief conversation with the physical therapist about it, and what he indicated was that in the absence of a specific reason not to, we should progress to the point of being able to actually run on the treadmill or outside fairly into cardiac rehab. They are also going to allow me to swim laps. The other aspect that I found fascinating is that the workouts are definitely going to ratchet up in intensity, and that their philosophy was to not automatically exclude any activity but consider them specifically water sports - snorkeling and scuba [they did say that scuba wasn't an automatic exclusion but we would certainly wait a year to see if anything else develops.

      I had the acupuncture guy over this after noon for three hours...he has a bunch of needles in me with power applied to them and I was jumping like a maroinette.I had a friend bring a pastrami sandwich for lunch...which is my "cheat item" for a week. Gonna take the dog out to the dog park now.....I can run him there with no leash and not worry about getting stretched.

      Hope everyone else had a good day.

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      • #63
        Re: Myectomy at Northwestern Memorial on Nov. 10

        Nov. 21 Update

        I made it through the night sleeping from 1AM to 7AM without getting up for pain meds.....first time. In my book, that is the most important step in the recovery process given the real potential for becoming dependent on them. I won't say that I am done with them...but that is a healing sign if there every was one. Off to get a blood draw today...if we can just see a downward trend in creatanine it would make my day. I got a call from the nurse practitioner from the Plastic Surgery team that is assigned to Dr. McCarthy's staff today to set up an appointment to get some silicon strips to apply to the scar once it is at the point that it has closed up to prevent keloids and hardening of the incision. Once again, there are facilities which provide a level of excellence in care beyond the two top choices, and for me NMH was the right choice.

        I hope everyone enjoys their day as much as I will mine. The one request I still have is to turn up the temperature in Chicago as 26 degrees outside is brutal. I have thanks giving plans, and have reached the mid point between the myectomy and my follow up visit with the surgeon. I continue to be amazed at the progress I have made and after having read the paths to recovery that some have been down realize that luck is more important to this process than I had ever earlier thought.

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        • #64
          Re: Myectomy at Northwestern Memorial on Nov. 10

          Nov. 21 - next Monday will be two weeks post myectomy. I was at work for a full week this week minus Thursday afternoon when I needed to take a time out. I have been back to the gym and on the bike for 45 minutes again today. I am doing everything I need to take care of myself, including putting on shoes and socks. The incision is closing beautifully, it itches but I can do 15 draws on the inhale device and pull it up to 2,000. I have no arrhythmia of any kind and my lungs are completely clear, stairs are no problem and no SOB. My stamina wasn't terrible before surgery, and it has improved quite a bit.

          My meds:
          • Metoperlol XL dropped from 300 mg/day to 100 mg/day.
          • Norpace 150 TID dropped entirely.
          • Lasix 20mg dropped to as needed and hasn't been needed.


          The diabetes, kidney and asthma meds stay the same, and the vitimins stay the same.

          After last night we are going to try moving the pain meds to 4 hour instead of 2 hour intervals. I don't think I am done with them by quite a while but if I don't take them it isn't a bad thing.

          It is very clear to me from reading the posts of other people that have traveled this road the I am exceptionally fortunate. However, I am not taking anything for granted and we shall see what next week brings.

          I did have an unusual experience this afternoon. I went for a blood draw and after five times trying they gave up and told me to come back tomorrow. Is it possible that after all of the poking in the hospital that they have gone on strike.

          I hope everyone has a great weekend and gets well along with their Thanksgiving plans.....It looks like I am going to have a dozen people over for the holiday and do a fried turkey.......I have more than enough to be thankful for this year and intend to enjoy it.

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          • #65
            Re: Myectomy at Northwestern Memorial on Nov. 10

            Nov. 23 - slept in my own bed last night, could sleep on either side still prefer sleeping on my back When I lay flat on my back by morning my neck is pretty sore..so its back to the recliner for another week. I have been successful at stretching the time interval between dosages of pain meds from 2 to 4 hours and for me that is real progress. I am gonna get up and go to the gym this morning and try to put in 45 minutes on the bike. Onwards and forwards seems to be the only path to take. Two weeks in, I can't say if this was or wasn't what I expected since I wasn't quite sure what to expect.

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            • #66
              Re: Myectomy at Northwestern Memorial on Nov. 10

              Nov. 24 - Two weeks post myectomy and ten days until I have my follow up visit with the Cardiologist and the Surgeon. A mid-point rest stop for some Turkey.....no shortage of things to be thankful for this year.

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              • #67
                Re: Myectomy at Northwestern Memorial on Nov. 10

                Nov. 27 - Happy Thanksgiving to everyone.....this has been a wonderful holiday for me......I did cringe when I looked at the turkey that had been stuffed and put back together and then at my incision....I hope no one approaches me with croutons it won't be pretty. I did see a change in the Thanksgiving meal....rather than merely looking at food quantities, i am very focused on avoiding sodium. I have had a couple of water gains this week which has caused me to push to 40mg lasix and check my weight a couple times a day. Lasix is great for controlling fluid retention but makes kidneys angry. I am going to go or a blood draw tomorrow to see what it did to my creatinine levels.

                My progress continues nicely....today is 17 days since my surgery and one week to go to my follow up check up with the cardiologist and the cardiac surgeon...and I expect the lifting of sternal restrictions. I don't know if they are going to xray...but I am going to ask.

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                • #68
                  Re: Myectomy at Northwestern Memorial on Nov. 10

                  Nov. 30 -

                  I made it through an entire day without the hydromorphone [Dilauded] or Tylenol...that is an entire day with no pain meds twenty days in...so that is the end of daytime pain meds for work....I am not ready to give them up at night, not just yet. My follow up visit with the cardiologist and the cardiac surgeon is Thursday, 12/4 which should be the end of driving and sternal restrictions, and a full on return to the gym. [For anyone reading this post, my understanding is that I have had an exceptionally quick and smooth recovery, so please don't take it as something isn't proper if you aren't following the same path.

                  I wasn't planning on doing this, but a couple of people have asked....there is a minimal amount of scaring left near the bottom of the incision, and the chest drain incisions are healing beautifully. I should start with the silicon strips and the wound care team to work on minimizing the scar starting next weekend. So here goes:

                  IMG_1059_zps7866e1e3.jpg
                  Attached Files
                  Last edited by Jordan Z.; 11-30-2014, 08:01 PM. Reason: Added pretty photo

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                  • #69
                    Re: Myectomy at Northwestern Memorial on Nov. 10

                    Dec. 4 - went for my check up after myectomy saw surgeon.....sternum is healed and incision is just fine. Cardiologist was concerned due to some fluid retention in my legs.....so its back to the hospital for a couple to three days to get the water off....they are going to use Bumex which is 40X stronger than Lasix...so this should be interesting.

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                    • #70
                      Re: Myectomy at Northwestern Memorial on Nov. 10

                      Jordan....I was just going to post and ask how your GFR was doing....I assume they think your fluid retention is renal and not cardiac?
                      I gained 15 pounds of fluid after myectomy but it came off in 5 days with lasix. However, I don't have CRF.
                      Well get on your track shoes ... And if you position your hospital recliner far from the bathroom you can probably log a few miles.
                      Also... Don't bring home any pets this time
                      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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                      • #71
                        Re: Myectomy at Northwestern Memorial on Nov. 10

                        All I can say is Holy Bumex Batman.....FIVE Liters in one day......they kept me in the hospital and we did IV Bumex which is 40X the potency of Lasix.........11 lb drop in ONE DAY.......so I get go home tomorrow.

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                        • #72
                          Re: Myectomy at Northwestern Memorial on Nov. 10

                          Two more liters.....I think I may have set a record....and don't even want to describe what it is.

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                          • #73
                            Re: Myectomy at Northwestern Memorial on Nov. 10

                            Dec. 6 - ok....still in the hospital....fluid is coming off nicely.....every so often we do get to run into a resident that is a budding genius. Like the one that ordered an extra dose of IV Bumex for 1:30AM last night.....they got an extra 500 ml of fluid out of me....at a cost of 5 hours of sleep.....why would they ever want a patient to sleep.....well...I love having access to the pager system so the attending will get a "love note" and we can have the conversation live this morning..and what a beautiful morning it has been....just barely 5AM and we have already done weight, blood, and a round of meds......and I should be going home today so I can't complain.

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                            • #74
                              Re: Myectomy at Northwestern Memorial on Nov. 10

                              Dec. 6 - Late Afternoon

                              I am home....the final tally was 11.5 lbs and 13 liters of fluid removed......and they have switched my diuretic from Lasix to Bumex. I have been finally been able to do some reading and it was stunning to see that Bumex is 40X more potent than Lasix by weight..hence 40mg of Lasix is replaced by 1mg of Bumex twice a day.....and Bumex supposedly doesn't cause the potassium reduction nearly as severely as Lasix does....which is interesting since my Potassium "bottomed out" twice during the two days in the hospital and had to be augmented. A second surprise given the level of diuresis being done is that my creatinine actually continued to drop....from roughly 3.1 immediately post surgery to 2.75 to the point that I was admitted to the hospital on Thursday to approximately 2.4 today. Two other interesting measures....BNP was 1,700 on Thursday which would normally be cause for alarm, but the believe it spiked due to the fluid build up only...BNP was down to 110 today. Finally Troponin dropped. from .08 to .02 which are both normal values. A discussion of BNP and Troponin gets complicated quickly and rather than attempt to get into a long discussion, if anyone has questions, ask your doc. Simply, they are both viewed as highly accurate predictors of CHF.

                              So, I am back home on the new med...nothing else changes....all of the restrictions [save for my motorcycle which is going to be another eight weeks and is a real problem as it is the sole form of transportation I own] are lifted, cardiac rehab to start up aggressively [or shall I say as aggressively as they will permit me to undertake] and I have follow ups with the cardiology fellow, the asthma management, and the nephrologist. The nephrology being of most concern at the moment, as the goal at this point is to start an ACE Inhibitor once creatinine stabilizes [the use of ACE inhibitors with HCM is a whole discussion unto itself].

                              This hospital stay [some of the following paragraphs may be of interest to anyone that has been or is contemplating being treated at NMH...and probably less so to people treated elsewhere] was fascinating in that I got to see an entirely different floor at NMH. Just to provide some perspective, the 7th floor CTICU is the cardio-thoracic ICU that all open heart procedure and major thoracic procedure post surgical patients are taken to [there is no "recovery" per se]. From there, the step down unit for the CTICU is 11 West Feinberg which has all kinds of post surgical open heart patients, heart transplants and LVAD....a very loud and busy unit.

                              The sister unit 10 Galter is an entire floor which is divided between cardiac observation [for people with chest pain, post-percutaneous procedures, etc], and patient rooms the majority of which are for non-open heart procedures, ICD implantation, and "electrical issues". It answered a question that I had always wondered about which was why I almost never saw a Cardiac electrophysiology doctor on the 7th Floor ICU or 11 West....most all of their patients are on 10 Galter.

                              As a final point of interest, the NMH MyChart patient portal system continues to expand in both scope and available information. In several instances, I was able to communicate with my attending doctors faster than the hospitalist teams were able to reach them, and test results were available in real time on the patient portal system. This was particularly satisfying in that on several occasions, my attending specialty doctors actually made a physical appearance on the hospital floor and were able to intercede with their expertise and experience with my specific situation which is certainly reassuring whenever I find myself admitted.

                              The adventure continues, and if it hasn't been clear let me urge anyone just starting down the path towards an invasive procedure that finding the right doctors and right facility provides tremendous comfort and adds me to the list of people that have had excellent results.

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                              • #75
                                Re: Myectomy at Northwestern Memorial on Nov. 10

                                Dec. 10 - today is one month post-Myectomy

                                I had an appoint with the PA-C [Physician's Assistant] for my Cardiologist today as a follow up to my being in the hospital over the weekend. The good news is that I am down 14 lbs [mostly water] and everything cardiac is doing great. The bad news.....the current diuretic Bumex 2mg BID has gotten my creatinine up to 3.2 which is a GFR of 22...not good, kidneys angry......we are going to try to cut the dosing on the Bumex to 1MG QD and see what happens. The reality of the situation is that there seems to be fairly fragile equilibrium between cardiac and renal function.....retaining water creates SOB and leads to CHF while kicking up the diuretic isn't helping the kidneys. Going back to see the cardiologist and the nephrologist in the middle of January. In the interim, going to do blood draws weekly [Basic Metabolic, TSH and Liver Function] to try and watch weight carefully to see what happens.

                                Had an appointment this afternoon with allergy/immunology doc that manages my asthma. I have have had asthma for many years and it has been well controlled to the point that I was off of the controller for over two years. I went to see him approximately seven weeks prior to the myectomy and he put me on Symbicort 160/4.5 as a controller. I had used Advair Diskus prior to that but the new insurance doesn't cover Advair. [Just as a wonderful aside, the inhalers cost roughly $300 each with the insurance carrier's discount...ouch]. The Symbicort worked incredibly well and there have been absolutely no pulmonary function issues since that visit and my lungs stayed clear the whole way through the myectomy and recovery. The doctor spent a few minutes explaining the bidirectional relationship between cardiac and pulmonary function...my take away is if you have asthma/COPD in addition to cardiac issues it is both important and helpful to have whomever is managing the asthma involved with your other providers.

                                If I forget to mention it to everyone that is reading this thread.....best wishes for a Happy and Healthy Holiday Season.

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