What was your journey to myectomy like?

[krysteno]

I've had HCM for a long time but only recently developed a gradient within the last few years and my overall quality of life has been going downhill. I've been on beta-blockers for a long time but can only handle so much, so I'm on a low dose now (metoprolol er). I also tried verapamil but that made me feel worse in a lot of ways...more recently I've been put on disopyramide. The diso hasn't done anything for me and today was actually one of the my really bad days for symptoms.

I have a mid-ventricular gradient of 73mmHg at rest, my septum is 2.6cm (mid-septum), and I have a small apical aneurysm. From what studies I've read as well as convos with my cardiologist, less than 2% of people with HCM have mid-septum hypertrophy and an apical aneurysm. I'm sure some of you are on this forum so I'd love to hear your stories.

Long story short, I am being referred to Mayo for evaluation for myectomy. Apparently only a few surgeons that do myectomies are skilled enough to do them when there's mid-septum thickness and the apical aneurysm. One of those Drs is at Mayo. I am very nervous I'll get evaluated and find my anatomy won't be operable. We will talk about transplant at that time if it comes to that but I wonder how often people go to Mayo and find out they can't be performed on?

I am just getting the news today that it's time to get the evaluation for myectomy and I'm very curious what the whole process was like for those that had it. I'm calling my insurance tomorrow first thing and then making the appt with Mayo, but I don't know what really to expect. My cardiologist today told me they schedule testing and a bunch of appointments, and will perform the surgery within that week. It sounds like a lot of you knew your surgery dates prior to going to Mayo and I'm curious if you've made multiple trips there? It was explained to me that I'd only have to make one trip for testing and the procedure but I'm having a hard time wrapping my brain around that.

I have a feeling the next few months will be wild but I don't even know what feeling normal is like anymore and I think the myectomy will give me my life back so I welcome it with open arms. I'd love to hear everyone's stories on what everything was like leading up to the myectomy including testing and finally scheduling the procedure.


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[mbcube]

Re: What was your journey to myectomy like?

Lets think positive here!
The evaluation process is over 2 days (they often cancel 2nd day - but in your unique circumstance, I doubt it). The Mayo is actually two tall buildings connected by an elevator tower. You'll go to several locations - ie: 6th floor one side, 3rd floor other side, 5th floor one side etc. - think habi-trail for hamsters. Your echo will be the longest you ever had. But one thing you'll notice, very little waiting, incredibly nice and caring techs and nurses. They will spoil you for healthcare! At some point late in the afternoon, you'll meet your doctor who will go over the results. You may meet with your surgeon the next day. Do write down any questions you have from now until then and ask them. Any new ones that pop up while your there - ask them! You'll find many "reports" on this site regarding the visit, surgery and recovery. Use the search feature - hoping one day, you'll post yours for others to learn from.

[krysteno]

Re: What was your journey to myectomy like?

Thanks so much....I guess I'm nervous right now because I'm in the process of gathering all of my records to send to mayo for dr Schaff and team to review before anything is even scheduled and I just want to want to know whether or not they will want to move ahead with testing/procedure as recommended by U. of Penn. It's very nerve-wracking!

I've been glued to this forum since I found it and have been reading all the posts I can. It's been very helpful and I'm so thankful people have put their experiences out there for everyone to read.


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[JillC]

Re: What was your journey to myectomy like?

I did gather all my Echos , MRI, and reports by hand from the different hospitals they were done at and mailed the disks and reports overnight to Dr. Ommen. Steve Ommen is the head of the HCM clinic. In general a HCM cardiologist at Mayo reviews all the reports and gets a really good idea of whether you are a surgical candidate or not from your records.....he consults with Dr. Schaff or Dr. Dearani ( The experts in HCM surgery including mid septum and Apical ) and they concur whether to put you on the surgery schedule or not. Sometimes they will ask if you want to do this in one trip or not.....All being said, It is easier to get off the surgery schedule on short notice than it is to get on, so if you are a candidate at all, they will put you on the schedule.
The battery of tests may seem in some ways repetitive of what you've had before....but having techs and MDs who are experts in HCM gives the tests a very specific slant towards what needs to be known about your HCM. Tests include, blood work EKG, chest X-ray , echo.... And then any number of possibilities such as a cardiac cath or a stress test depending on your needs.
I had the same fears as you, that I might be canceled after I got there.... It's a common fear, but not a common happening. If you did get turned down or asked to wait and be followed for a while....it would only be because it was the best and safest thing to do.
Best of luck .....keep us posted.

[krysteno]

Re: What was your journey to myectomy like?

Thanks so much Jill- your response is very helpful. Do you remember how long it took once they received your records to let you know you were a candidate for surgery? And then after that point, how long did it take for you to actually schedule the surgery?

[JillC]

Re: What was your journey to myectomy like?

I pestered the office staff ( they were quite gracious) to let me know when Dr Ommen had gotten the records and read them ...I think that took about 2 weeks.....then within another week or so they called to set up a date to visit, do testing and have surgery. At first they said there were no surgical openings for 3 mos.....then she said wait a minute....let me check something and she gave me a date only 4 weeks away......I'll never forget this because I had a waking dream where someone told me I would go to Mayo on July 21st....... When I heard the secretary say, could you come on July 21st....I was speechless!!!
So know that the Universe will get you there at the exact right time to have the exact outcome that is right for you!

[krysteno]

Re: What was your journey to myectomy like?

I have been pestering both Mayo and my local doctors! My cardiologist actually talked to Dr. Schaff about my case on happenstance (they were talking about another patient and my Dr. took the opportunity to fill him in about me and my records coming their way) and now we are just waiting for the last of my medical records to arrive (which should be today). They said surgery looks to be out to early September so depending on the official recommendations we could be less than 6 weeks away. Getting anxious and just want to know if myectomy will be my course of treatment or not. My short-term goal is to wait for that bit of information!

[gfox42]

Re: What was your journey to myectomy like?

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

Gordon

[Jordan Z.]

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.

[krysteno]

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.

[Redteamer]

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.

[krysteno]

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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[JillC]

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.

[krysteno]

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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[krysteno]

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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