6 Week Post Myectomy Check-Up

[silverlux]

Well, I can't believe it's finally here! My 6 week check up at the Clinic was on Wed. the 20th. All went well except for the fact that I opened up my big mouth and told Dr.Lever about some symptoms I'd experienced recently! Two or three times I had some heart palps, shortness of breath and such for a few minutes. He was not too thrilled about that since after the surgery my gradient is 0 and my mitral valve is working just fine. He increased my Toprol and is making me wear a heart scan monitor. It's basically a smaller holter that I can take off when I shower and stuff, but I have to wear it for 30 days! Whenever I begin to have any kind of symptoms, I press a button on it and it records the scan. I then call a # at the Clinic and the tech can read the scan through the phone by listening to the holter playback the recording....how about this technology, huh? Well, today (Sat) I used it for the first time. I was having some pretty bad symptoms including dizziness and feeling like I could pass out, throw up or both. I called it in and the tech told me my heart rate was pretty high. He said he would pass it along to my doc on Mon. and for me to keep aware of my symptoms. A few minutes later, a doc from the Clinic calls me and says he reviewed my scan and it worried him. He asked me a few questions and then told me he thought I should go to the ER and get checked out just to be on the safe side. Before we hung up I asked him what my heart rate was....in the 190s was his reponse! All I did was walk up my steps to my apartment carrying a bag!!!!! I was scared, tired and kinda pissed off! Wasn't this surgery supposed to stop all of this??? So, I called a friend and she and I headed to the hospital (luckily it's right down the street). Once I was in a room, and they told me to put on a gown, a part of me wanted to bolt! Not this AGAIN! Then there was talk of an IV and I refused.....I was not having any symptoms right then, this was just a precaution....no way was I getting an IV. They're lucky I let them put the wristband on me!! Long story, sorry, Basically they made me promise to get my new prescription filled as soon as I left the ER and keep up with the heart monitor and go back in if I have any more symptoms. I'm so frustrated cuz I DID NOT expect any of this. I want answers and I want to feel safe in the fact that I can walk up my stairs and not be afraid that I might collapse! So, that's my update thus far....any kind of feedback would be MUCH appreciated! Thanks so much all.....Steph

[Reenie]

Hi Steph. The myectomy got rid of the gradient but the tachycardia isn't related to obstruction at all. You might also need an ICD to help protect against sudden cardiac death if you are having dangerous arrhythmias. The myectomy can't help anything at all about the electrical conduction in the heart. I hope all is fine and the meds take care of the problem. Please keep us posted.

Reenie

[Lisa Inman]

Dear Steph, sorry you are so frustrated--I bet it is hard. We can't get rid of HCM, just mitigate its effects. So having no gradient is still a really good thing for your heart. But sorry the other stuff is coming up. I'm hoping that the new meds help and things start feeling more positive. Best wishes, Lisa Inman

[Lisa Salberg]

Myectomy's remove obstruction...not HCM...and thus we are left with non-obstructive HCM which is still HCM and subject to the symptoms of HCM. Having your heart rate into the 190's is not something we want to see in HCM. The monitor is a great idea. It is also a great idea to take those meds on a regular basis and drink lots of water.

Please take care.

Lisa

[silverlux]

ICD here she comes!

Hi All, this is Sally, Steph's mom. You know if I'm writing, she can't! She is in ST. Luke's Hospital in Bethelehem, waiting for an ICD implant. I'll let her tell her story when she gets out, but let's just say the past 5 days have been quite a trip!! Steph has been in the hospital since Monday with a monitor on full time. Last night she had an episode during her sleep that she wasn't even aware of. Her heart rate was close to 200. Today she has an IV with a lidacane(sp) drip and is having the implant done tomorrow afternoon. She will have the pacer/ defibrillator. We're hoping this, with meds, does the trick. Now we can't wait to travel!! I'm sure Steph will have lots of questions once she gets home, so I'll save any I have for then. Wish her, and us, luck and keep praying! Thanks, Sally

[Reenie]

Best of luck! I'm sure the ICD will be a big relief once it's done.

Reenie

[progers]

Hi Steph,

I am really sorry to hear about your problems. But I do know what you are going through - I also had a myectomy in March and I am also having some problems - though not, it seems, as bad as what you are going through. I hope things settle down and that the ICD provides reassurance for you.

Take care of yourself,

Paul

[silverlux]

Hi all,

Thanks so much for your concern. I'm finally out of the hospital and home recouping. I'm still kinda in shock that I needed to get this THING!!! I'm trying to come to peace with the fact that this is just how it is and there is nothing I can do about it. I have a hard time because I feel fine! I don't feel sick and so it's hard for me to grasp the reality of the situation. But, I'll look on the bright side, now I can chat in the myectomy forum AND the ICD forum I go to the doc's on monday so they can check my incision and then it's the beginning of the 3 month interogation cycle. Thanks again to all who have helped me through this sidetrack on the ridiculous ride called LIFE! Steph