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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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  • Jordan Z.
    replied
    Re: Myectomy at Northwestern Memorial on Nov. 10

    January 18, 2015

    Well today is 68 days post myectomy, and I thought I would share an overall update which would seem to be the end point of one journey and the start of the next phase. Let me start by being very clear that my understanding is that my situation is exceptional and please don't use it to benchmark anything in your own journey. I am relatively young at 53, and had been exceptionally active on a continual basis throughout my life up until Nov. 2012 when I first had any symptoms. The particulars of the rest of the background to my situation are scattered through this thread. I saw my Endocrinologist on Jan 9, Nephrologist on Jan 14 and Cardiologist on Jan 16.

    Overall:
    • Stress Echo - insignificant LVOT Gradiant, completed full treadmill cycle without exceeding heart rate target.
    • BP 115/78, Pulse 68
    • Weight down 27 lbs post surgery...estimate that 18 lbs of that was fluid.
    • Lungs clear no wheezing or rales...maintain controller inhaler
    • Creatinine decline from post surgery from 3.2 to 2.5 still an issue but doing much better....staying on 1 mg Bumex, BID, conclusion is that need for diuretic is NOT due to cardiac issues, rather moderate renal impairment.
    • A1C which had been at 5.5. for 3 years, increased to 8.9, indicating that Glipizide isn't working any more, need for major change in diabetes control both to control blood glucose and protect kidneys. Started Victoza at 1.2ml and Lantus Solomark Long Acting Insulin 8 units on Jan. 9 Jan 15 labs blood glucose 59....so back down on the Lantus...holding off on further titration for a week or so. The Victoza should substantially aid in weight loss and contribute substantially to blood glucose control...goal to phase out Lantus. Victoza has potential for nasty side effects so need to watch and regular blood draws.
    • Sternum substantially healed, all restictions lifted, save for shooting shotgun..rifle, pistol shooting, hitting at batting cage, ice skating, swimming and callisthenics ok....start easy on push ups.
    • Been able to jog/run 4-5 miles a day and run 2 miles exerting but keeping pulse in target zone. Cardiologist decides that there is "no point in sending me to cardiac rehab as it would only slow me down". I almost fell off of the chair on that one Reduce Metoperlol to 50mg BID.
    • Absolutely zero arrhythmia or electrical issues of any kind...discontinue Amioderone immediately.
    • Per Cardiologist "cardiac is on cruise control"......next appointment in Sept. 2015.
    • Concentrate on steady weight reduction, control of blood glucose with expected decline targets for A1C and GFR.
    • Next visit to Endocrinologist April 2015, Nephrologist May 2015 and Asthma Doc in July 2015.
    • Standing orders written for specific blood work for each of the docs, through Sept. 2015 - draws every two weeks and action taken if anything shows up.


    The summary is...after all of that I still have and will always have HCM. Cardiac outcome is off the chart successful. Diabetes should be controllable weight loss and stabilization of Victoza should make a big difference...potentially eliminating need for supplemental insulin. Asthma is very well controlled. Renal function is the wildcard..we are not going to try to decrease diuretic for six months based upon extensive renal function testing.

    I am back to work full time+, able to engage in every one of the recreational activities that I did constantly up to the HCOM flare three years ago with the sole exception of scuba diving. We will review medical fitness to dive in Sept. 2015. In conclusion, despite numerous comorbidities, and a homeostasis that has a substantial number of factors that need to be watched, I am essentially back to a normal day to day existence at full power with restrictions limited to following appropriate diet.

    Oh by the way...scar substantially healed...no keloids...
    IMG_1092.jpg

    In summary, I have my day to day life substantially returned to normal function. I can go for a run...working up to doing 10K's again, ride a bike, swim, travel, etc with no limitations. Every one of the doctors, particularly the cardiac surgeon and cardiologist has been surprised by what they have termed exceptional progress that exceeded expectations......I am greatful for everyone's efforts.

    Permit me to share very loud and clear message to everyone looking at whatever procedures are required through the windshield.....they wind up in the rear view mirror sooner than you imagine. Set reasonable expectations and hopefully be as delightfully surprised as I am. My decision to stay local and stick with Northwestern Memorial was the right choice.

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  • Jordan Z.
    replied
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Dec. 10 - I almost forgot the last special "gift" of the day.....I finally got a Pneumococcal (23-valent) vaccination today....and tonight it is swollen and painful as all ****....it is easily worse than a tetanus booster....Ouch.

    Leave a comment:


  • Jordan Z.
    replied
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Originally posted by JillC View Post
    Yes, it is quite tricky sometimes between HCM and Asthma. Before this last surgery I used to go in and out of diastolic failure....my symptoms would be exercise induced wheezing, coughing and SOB and night time wheezing coughing and SOB. Sounds a lot like asthma right? my Cardiologist and my Asthma allergy specialist agreed that telling which episodes were which was difficult.....because bronchodilator/ inhalers can help both.....just not quite as well for the cardiac. So I would use my inhaler or nebulizer and if the symptoms didn't resolve I'd weigh myself and take extra lasix.
    So far, since this past myectomy, I'm not having diastolic failure issues.
    My worst cardiac/asthma disagreement happened for thanksgiving in 2011. I was just finishing 9 days of steroids and q4hr Albuertol nebs when I developed continuous chest pain and a BP of 80/50, troponins were mildly elevated and my EKG changes were off the wall! So off to the cath lab ...everyone thought I was having a heart attack. I even asked the cardiologist if it might be a septal infarction and could cure my HCM obstruction ( hadn't had myectomy yet) He looked at me with the wierdest look..LOL.
    Turns out I did not gave a heart attack but had an episode of TakotSubo stress cardiomyopathy which dilated my ventricle like an old balloon leaving me with an EF of 35% and a huge clot in my left ventricle. They think it was all the asthma drugs that triggered the event.
    Anyway, just say in' the combo of heart and lung issues is tricky.....add in the kidneys and you really scored a trifecta didn't you!!
    Take care and watch the weight daily....I just put on 5 pounds in 5 days and am back on a few days of lasix . However, I think I'll skip the bumex, Batman.
    Thanks Jill.....that was quite helpful......you ain't kidding about the trifecta....but thankfully, the reality is that I am absolutely greatful for is that the asthma is so much better controlled over the last three years than it used to be....if I went back ten years in an average year....using my recovery plan I would have to start a Solu Medrol spike on myself a couple of times, use oral Prednisone perhaps five or six times, and was using the albuterol a couple of times a week. I haven't touched the Solu Medrol or the Prednisone even once during the past three years and have had to hit the albuterol perhaps a half dozen times. The control over my asthma and being able to control my Type II Diabetes with 5mg Glipzide and no insulin...A1C <5.5 for three years has probably saved me from having a MUCH more difficult time with the cardiac and renal issues. The cardiac issues other than water retention which I view as predominantly a renal issue have been excellent post-myectomy on 75mg of Metoperol BID. My average for the past two weeks is roughly BP 115/60 and pulse around 60...where two years ago...it was BP150/110 and pulse 120. I am completely devoid of a-fib and electrical issues as well. In fact, there have been a number of times when pulse <60 starts to get me worried that I might have to skip the Metoperol to avoid instigating bradycardia.......and I could only imagine what it would be like to try to take Bumex and wear a Batman Costume.

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  • JillC
    replied
    Re: Myectomy at Northwestern Memorial on Nov. 10

    Yes, it is quite tricky sometimes between HCM and Asthma. Before this last surgery I used to go in and out of diastolic failure....my symptoms would be exercise induced wheezing, coughing and SOB and night time wheezing coughing and SOB. Sounds a lot like asthma right? my Cardiologist and my Asthma allergy specialist agreed that telling which episodes were which was difficult.....because bronchodilator/ inhalers can help both.....just not quite as well for the cardiac. So I would use my inhaler or nebulizer and if the symptoms didn't resolve I'd weigh myself and take extra lasix.
    So far, since this past myectomy, I'm not having diastolic failure issues.
    My worst cardiac/asthma disagreement happened for thanksgiving in 2011. I was just finishing 9 days of steroids and q4hr Albuertol nebs when I developed continuous chest pain and a BP of 80/50, troponins were mildly elevated and my EKG changes were off the wall! So off to the cath lab ...everyone thought I was having a heart attack. I even asked the cardiologist if it might be a septal infarction and could cure my HCM obstruction ( hadn't had myectomy yet) He looked at me with the wierdest look..LOL.
    Turns out I did not have a heart attack but had an episode of TakotSubo stress cardiomyopathy which dilated my ventricle like an old balloon leaving me with an EF of 35% and a huge clot in my left ventricle. They think it was all the asthma drugs that triggered the event.
    Anyway, just say in' the combo of heart and lung issues is tricky.....add in the kidneys and you really scored a trifecta didn't you!!
    Take care and watch the weight daily....I just put on 5 pounds in 5 days and am back on a few days of lasix . However, I think I'll skip the bumex, Batman.
    Last edited by JillC; 12-11-2014, 09:29 AM.

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  • Jordan Z.
    replied
    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.

    Leave a comment:


  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • JillC
    replied
    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

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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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  • Jordan Z.
    replied
    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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