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What was your journey to myectomy like?

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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    So I saw my local HCM doctor today and they are pretty confident that I have pericarditis so they started me on Colchicine (which apparently is what they use to treat gout, eek) and they put me back on Lasix since I have water weight in my abdomen and am up 5 lbs in a couple of days. Fun stuff!! The good news is the colchicine should help with the recent symptoms of SOB, pressure and swelling below my sternum, and issues breathing while laying flat within the next 2-3 days....thank God for that because I'm pretty miserable as of late!

    I'm glad I didn't drag my feet and try to tough it out but rather decided to call Mayo and then see my local HCM team...I sort of felt bad "bugging" people with my issues but hearing its pericarditis makes me think if I didn't go, I wouldn't be doing myself any favors sitting at home. You really have to trust your body and if you think something isn't right, it probably isn't!


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  • angusjcampbell
    replied
    Re: What was your journey to myectomy like?

    I had that 10/10 shoulder pain about a week after coming home. Woke up early one Saturday morning just about crying. Called the post-op patient line at CCF and the nurse quickly put me through to the cardio-thoracic surgeon on-call. He explained the complex network of muscles cris-crossing the chest that had been disrupted my the sternotomy and that something had likely been pinched or irritated. He advised me to max-out my pain meds - something I had never come close to before - and to call back at the end of weekend if no improvement. I was OK in a few hours. It was my only case of post-op pain besides the usual modest chest discomfort. But boy it hurt like heck.

    We all react differently.

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  • JillC
    replied
    Re: What was your journey to myectomy like?

    No matter what you have read...there is Always a bit of three steps forward and two steps back in the healing process with something as major as open Heart surgery. Don't compare yourself to others or feel you are somehow behind....The healing process is very individual. You are doing all the right things...contact with Mayo and with local MD. Ongoing Or worsening SOB and needing extra pillows to breathe at night is concerning. Could be you are a bit fluid overloaded...I had 12 extra pounds of fluid on board when I got home....also sometimes antibiotics and things like ibuprophen can cause you to retain fluid...also the fact that you had suspicious chest tube sites might mean there is some collection of old drainage under that site causing tenderness.
    It seems you may need at least a chest X-Ray or something......Keep pursuing with your docs until you get answers that satisfy you. Do you have a scale, BP cuff, thermometer at home? so you can give accurate data to your docs....Keep a record of your symptoms...then when you speak to the docs you can be very specific about what is happening and how long it's been going on.
    Hope you get answers and feel better soon.

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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    I'm 2.5 weeks post-surgery and I feel worse in a lot of ways the past couple of days than I did right after I got back home. I was starting last week to sleep with just one pillow but now I can barely sleep even propped up. I've developed an odd pressure at the base of my sternum (between my sternum and belly button). It almost feels like someone is pushing on the spot right below where my sternum ends if that makes sense. I have no idea if that is just part of the healing or if there's something else going on. And the shortness of breath is there still and feels worse in some ways the past couple of days. I am waiting to hear back from someone on Dr. Schaff's team at Mayo where I had the procedure to see if this is all par for the course or if something needs checked out by my local cardiologist. It just sucks because I feel worse now than a few days ago and I've read a lot of post-myectomy posts that it's usually just part of the healing but I can't help but feel like I've been set back.

    I also went to my primary care doctor on Saturday because one of my chest tube sites was looking like it could possibly be infected so they did a culture and put me on Bactrim to be safe. I feel like when I started taking the Bactrim is when these additional problems started so I don't know if the antibiotic is kicking my butt or if it's coincidence. Either way, I definitely feel like I was feeling better 5-6 days ago than I am now. Trying to stay positive but blaaah


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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    I got one the one day and asked for one yesterday several times but the still didn't come good news is my shoulder does feel much better. It was the most painful part of this whole thing.

    Getting ready for discharge now. Staying local until Sunday when we fly home. What a crazy ride it's been. I'm mentally and physically drained but I wil be just fine before I know it

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  • mbcube
    replied
    Re: What was your journey to myectomy like?

    Mayo has on staff massage therapist as part of the pain management system. Ask a nurse to order it.

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  • JillC
    replied
    Re: What was your journey to myectomy like?

    I may get yelled at for this suggestion....but a really good chiropractor may be able to do more for your pinched nerve than allopathic medicine can..... The caveat being .....a really good chiropractor. I have one in Denver but don't know about anywhere else. Hope it subsides soon.... Good Luck glad you are on your way home.

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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    Still in the hospital, should be discharged tomorrow. Saturday ended up being a really good day but Sunday through today have been really difficult. The nausea still isn't fully resolved and I have a pinched nerve in my left shoulder which has been causing so much pain. 10/10 pain and me sobbing through it. It's been hard to breathe deeply because of the shoulder too but they said this can happen when being stretched out on a table like that.


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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    Oh yes...I've been spoiled with the aromatherapy baggies and the quease ease!! Amazing how much it helps. I also have been quite a few meds to control the nasuea but I can say compared to Friday morning and last night? It has gone down so much. The ICU nurses are incredible and helped fine a routine that works for me. I also am so surprised how well I'm doing on 3!! It's amazing and I just am so thankful for my progress. I've been so strict about using the spiromometer and have taken 3 walks so far.

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  • JillC
    replied
    Re: What was your journey to myectomy like?

    To be online typing day #2?? Awesome recovery. I also found the chest tubes exceedingly uncomfortable every way I turned they poked me in painful ways.....you will feel like some one freed you from jail once they come out. Also, I had terrible nausea
    ......it took 3 drugs and 3 days to get rid of it. In between meds I had aroma therapy sticks that the nurses got for me, they really helped. They gave me a choice of scents and I said I'll take all three thank you.....LOL
    Congratulations and hope you continue with your rapid recovery.

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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    I am two days post op and am definitely making small improvements every hour. I am so glad I came to Mayo because we ended up doing an apical myectomy and Dr Schaff is the best for that. A brilliant guy but maybe lacking on the bedside manners lol.

    I should be getting the chest tubes out tomorrow and I am excited because I think is probably the last thing throwing me off. I got rid of the swan line, catheter, the second heart catheter, and one of my IVs. I only have the two IVs and chest tubes. I am also doing everything in my power to get up and walk around as well as using the spirometer as much as I can there, too.

    I am so thankful to have the last 2 days behind me, it was really painful on Friday and Saturday and I have insane amount of nausea and threw up. But even on my walk around the hospital I ca.n tell how much better I am breathing. I am also so relieved that I came out of this alive!!

    Thanks to everyone for sharing your experiences and I will try to post more about my experience when I'm feeling better so that one day my story can help someone else's,




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  • Redteamer
    replied
    Re: What was your journey to myectomy like?

    Hartzell Schaff is awesome. Did my myectomy on Oct 15. I can't imagine a finer thoracic surgeon. Google his name and check out his YouTube videos.

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  • krysteno
    replied
    Re: What was your journey to myectomy like?

    Wow, what a story.....I am so happy that you seem to be stabilized and have things very much under control. Sounds like you're battling quite a bit over there and it must be really hard with all of the different doctors. Modern medicine truly is amazing and I am glad your doctors are working together to provide you with the best and proper care!

    I am curious, since you mentioned you're an avid tracker- do you track your symptoms related to HCM? I started a heart diary in excel back in the beginning of the year when things picked up for me and I'm curious if others do that and how they track their symptoms. It's hard because I think some symptoms are just there more consistently and I don't necessarily track them (SOB is an example of that, and overall fatigue) but I do track my BP/HR, palpitations, flutters (PVCs for me), breathing issues (more like when I have episodes of SVT and am breathing fast as opposed to SOB when I just can't get a good breathe in),dizziness, light-headedness, whether or not I think I feel my pace-maker, and more recently I've been tracking chest pain as that's a relatively new symptom. I'd love to hear what others do.

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  • Jordan Z.
    replied
    Re: What was your journey to myectomy like?

    I had a quick journey getting there...but perhaps more significantly, at 9 months post surgery, I am down to roughly the same weight I was at when I graduated college 35 years ago. My meds are 75 mg metoprolol BID, 10 mg atorvastantin, 325 asparin ETC, 2mg bumex BID, and basal/prandial insulin as needed for diabetes, and Symbicort. Long and short version, my life has been returned to me, BP 115/65, Pulse 62 at rest, a1C 5.8, no breathing issues, no cardiac electrical issues of any kind, renal function sucks, my file has been submitted for UNOS listing for kidney transplant even though State IV and progressive disease, expect to get to top of list before any need for dialysis arises.

    I saw cardiologist 2 weeks ago for stress echo and 24 hour Holter.....absolutely clean...per cardiologist "cardiac is the least of your problems, make your next appointment for 18 months out, you are medically cleared to scuba dive, run, resubmit FAA-Pilot Medical Clearance and resume regular exercise [in my case that is running [notice I said running not walking or jogging 4-5 miles/day], swimming several miles at a crack. I have regained dive certification and FAA ultralight license. I have spent three week diving since March...limiting to a depth of 130' which is ok, been taking flying lessons in a Quiksilver Ultralight, and am actively teaching defensive pistol again. I probably would try to enter the Tour De France, or compete in MMC fighting, but that is about the level of restriction on my activities.

    I am fanatical about diet, meds, and I test and chart, chart and chart more. I have a completely integrated team with Endocrinologist, Cardiologist, Nephrologist, Allergy/Immunology and Pulmonary which I am and the lead on, having taken over from my PCP with her available as needed. I see Endo, Allergy and Nephrologist on 3 month staggered with blood draws every two weeks, so my labs are never more than two months old [we do rotate some of the tests], and I never go more than a month without seeing one of my specialty doctors...AND THEY ALL COMMUNICATE WITH EACH OTHER, and we share information through NMH's my chart. My endocrinologist let me titrate my insulin by myself with my judgment permitted to make adjustments of up to 40 units/day without consult....in 3 months a1C went from 9.1 to < 6.0. There is a general agreement that my mortality expectations, but for the renal issues are 20% or better above the general population.

    Long story short...I am not "cured" with HCM the only way that happens is with a transplant. But, at this point, its pretty easy to forget...eight or ten flights of stairs is no problem at this point. Somewhere along the way, they removed my viewing being ill as a career choice, I am working 60 hours a week consistently, and play hard. Somewhere along the way the bag of regrets and potential regrets got thrown in the dumpster. I realize how blessed I am and am very thankful for healthcare team I have....I am going to be featured in an article in the near future talking about NMH Cardiology being listed as a Top Ten Program this last month. NMH overall is the same group as Mayo and CCF and it takes me twenty minutes on my BMW Scooter to get to the hospital, or 40 minutes if I take my bicycle....imagine that an HOCM patient riding his bicycle to appointments.

    Everyone isn't going to be lucky enough to get my results, and some people seem to be happier when they are bitter which is their problem. if they make those choices I don't have one iota of empathy or sympathy....being sick happens, being miserable is a choice that curmudgeons make. Hello to everyone, enjoy the remainder of your summer.
    Last edited by Lisa Salberg; 07-31-2015, 02:36 PM. Reason: We have a welcoming community - lets keep it that way ;-)

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  • gfox42
    replied
    Re: What was your journey to myectomy like?

    Waiting is the hard part for most people. It was for me.

    Gordon

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