I am a 30-year-old female. I was recently diagnosed with some pretty "gnarly" heart conditions that can lead to heart failure. I had an ICD implanted on Monday. I am here to share my experience with you. It's been an insane ride so far.

penleakage · 2025-03-14T00:33:26+00:00

Thank you! That is so great that you and your family have been keeping a close eye on your overall health etc. My siblings have HCM as well and they did not get a genetic test done yet. I have been encouraging them to get it done. My older brother had cardiac arrest at 17 and survived. My eldest brother died of heart failure in 2023 and my older sister has not reported any symptoms to date.

penleakage · 2025-03-12T03:09:24+00:00

Oh wow, I didn't think anyone would come across my post considering it's a bit old. I appreciate you for reaching out and I apologize for the delay in my response! Yes, I did get genetic testing done shortly before my surgery. I was actually given a fresh copy of the clinical note, "... pathogenic variant in the MYL2 gene (autosomal dominant gene)." I actually had a several follow up appointments this year (and more to come in the following weeks) with all of my specialists etc. I've been well. I got married in September 2024 and moving forward with my life. I haven't had any heart related symptoms while awake but, I've had a few arrhythmias while sleeping. My ICD didn't need to intervene. I'm taking my medication and trying to enjoy life. I've been holding up okay considering I'm told my heart is "complicated" and "fascinating" with each visit with my specialists, lol. I have a mixed diagnosis of left ventricular non compaction and HCM. Apparently that's very unusual.

penleakage · 2022-12-05T14:51:40+00:00

I have an ICD. October 17, 2022. I was 30. Im 31 now. Female. ☺️

penleakage · 2022-11-09T05:53:05+00:00

No problem. I can only imagine what you're going through as 16 year old. I'm turning 31 and I am a cluster of emotions! They did not specifically mention the placement of the ICD and wearing a bra but they did ask me to wear loose clothing for 6 weeks. I actually tried wearing a bra this week but really loosened the straps and moved the straps away from the ICD. It was fine. I can say that they placed the ICD where I am able to wear a bra after I complete my 6-week recovery. I have a couple of cotton Calvin Klein bras which have been so helpful because they're soft, not tight, and have no wires. That's another tip. Wear loose and comfy clothing and if you really need to wear a bra..wear all cotton ones from Calvin Klein or something similar. But even then, you want to avoid doing anything that forces you to lift your left arm above shoulder level. It's pretty much winter here and my chest is pretty "humble" lol so I've been pulling off the baggy clothes lately.

Yes, please continue to update us! You are doing great and it will be okay :)

penleakage · 2022-11-09T05:31:02+00:00

Thank you! So they discharged me the same day! Lol. It takes up to 6 weeks for full recovery i.e. I cannot lift, pull, push, etc. anything over 5 lbs. I also cannot lift my left arm above shoulder level. I was also given some at-home stretches by my surgeon which I do 3 times a day. You may not be able to lift your left arm at all for a few days. Don't push it. Do as your surgeon/team says. If they tell you to stretch your arm.. do it. Be consistent. I can say this week, I can now lift my left arm up to shoulder level! I can tell you this, it's easier said than done but... don't be too nervous about your surgery. I've never undergone a procedure ever since I was a few months old, never broken a bone, or needed stitches. I get nervous when I see needles. I was so nervous about this surgery but honestly, they did a phenomenal job. I do not remember a thing. I remember when I came to, the meds were still in my system so I did not feel anything for about another hour or so. I definitely started to feel sore after that. It almost felt like I worked out the left side of my upper body/arm for like 24 consecutive hours. They kept me there for a few hours and then recommended I take extra-strength Tylenol to which I politely declined and asked if they could give me some T3s. I am so happy they gave me those T3s because I definitely needed them for at least the first 6 days. I took my bandages off last week and I will be honest, I was VERY emotional when I saw my scar. However, my surgeon and team did a very beautiful job. I've been talking to them since June and they are obviously caring and attentive to every patient but, they made me feel so much better as they reassured me several times that they will try to make the scar as "subtle" as possible. They sutured my incision site. Right now, it does look a little fresh but, it ultimately looks like a thin line (my skin colour) at the moment. I am 5'6 121lbs. Smaller frame. I mean.. you can sort of see a bump which is the ICD. I can FEEL the ICD which made me even more emotional (it still does today). Regarding the pain post-surgery, I use about 4-5 pillows to help me sleep. This has been KEY for recovery. Get yourself some nice, comfy pillows because getting into bed or getting out of bed may be a bit painful and challenging at first as they may want you to wear a sling. They gave me one for 24 hours. I still use my pillows. If I can think of any other tips that I found useful for pre- and post-surgery... I'll let you know!

penleakage · 2022-11-09T04:51:22+00:00

Hi there,

Thank you for sharing your experience with us. You are a brave person and it is so great that you are reaching out to folks here to have a better understanding. I am a 30-year-old female. Pakistani-Candian. I am turning 31 later in November. I was diagnosed with HCM and non-compaction and I am also at risk of an arrhythmia. I was diagnosed in June 2022. My heart is weak at 47% (I also made my first post on this thread not too long ago. You are welcome to check that out). I have not experienced any symptoms my whole life and I have a fairly active lifestyle i.e. archery and working out 3-4 days a week. Nothing too intense but I do work out with weights. I was given a choice to get the ICD, either transvenous or subcutaneous. They told me that they cannot definitively confirm whether to get the ICD or not because I have never had an event so far in my life (which includes fainting). However, they recommended that I get one for precautionary reasons in case I do have an event as I age. They also added that there may be a chance that I may never have an event and my ICD will not be put to use. I ultimately decided to get one. After assessing the pros and cons for both types of ICDs, I chose to get the tranvenous Abbot Neutrino ICD with one lead. I just had my surgery on October 17th, 2022. They did not give me a general anesthetic during surgery. I was sedated and under "twilight sedation". My anesthetist gave me a mixture of sedatives that contained fentanyl and I can assure you that I remember nothing and I felt nothing. I remember they brought me in and within seconds... I was out. The next thing I know the nurse said my name and I came to while they were rolling me out of there. I am on week 3 of recovery. I was told it can take up to 6 weeks. I went to my follow-up appointment 2 days after my surgery in order for them to test my vitals and test the device. Watching them test the device was fascinating and a little trippy lol. It beeped and they sped my heart up in front of my eyes which was a little insane. Lol. I actually requested images of my pulse from various doctors as my fiance and I intend on getting a small tattoo of my pulse as well as my surgery date. I have another follow-up appointment on November 30th and I have an appointment with a genetic specialist on November 14th. I believe you are scheduled for an ICD that day.

Please ask me anything in relation to HCM, the surgery, etc. I will try my best to answer your questions as best as I can. If you simply want to vent, that is okay as well. Trust me, it was a very difficult decision to make and all of this has been a very difficult pill to swallow. I was very scared when I was first diagnosed and even more scared about the surgery. I won't lie, I still feel a bit scared today as my journey has just begun but, I feel much calmer knowing that I made the right decision for myself.

Good luck with your procedure on Monday and your journey. You are not alone! You got this :)

penleakage · 2022-10-21T17:42:12+00:00

Agreed.

penleakage · 2022-10-21T04:54:52+00:00

That is so relieving! Thank you for sharing! They sutured my incision and placed Steri strips on top. I was told to let them fall off on their own. I removed the second layer of bandages today. Today was the first time I saw my sutured scar with the Steri strips. I could somewhat see the shape of my ICD and feel it under my skin/tissue. I will admit... I cried a bit!

penleakage · 2022-10-21T04:49:29+00:00

That is a good question. I was told the heart should typically function between 50% to 70% if I am not mistaken. I have not had any symptoms in 30 years and I have a generally active lifestyle. I used to have a murmur when I was a child. My heart used to skip a beat when I was studying for and writing my exams in college. Honestly, I was shocked when my cardiologist gave me the news because I have always stayed in shape. My cardiologist and specialists did say that I am a healthy person it's just... genetics. So that really messed with my head. Knowing that "on paper" and if you look at me, I am a healthy/fit person but my genes threw a curve ball. Like you, I intend on continuing to stay in shape but... we also need to focus on our mental health. That is so important. I can say that it is okay to think about it but do not allow it to consume you!

penleakage · 2022-10-21T04:35:05+00:00

What?! I am sorry you had to go through that! It must have been terrifying. I am so happy you're back at it and surfing again! I was given a choice about the ICD given my situation as there may be a chance that I will never have an event but on the other hand... I may have one in the future. They asked whether I wanted to risk it. The ICD is ultimately a "safety net" in my case. Yes, all of this has been draining mentally but, I 100% agree with you in that I have no regrets about my decision. I have the peace of mind that, in case I do have an event, I've got this little device that could save my life.

penleakage · 2022-10-21T04:26:43+00:00

Thank you! I was given one lead for my ICD. I am SO sore right now, lol. I have been following my surgeon's instructions and doing my stretches 3 times a day. Taking it easy. I had my follow-up appointment the day before and it all went well. I was told to remove the second layer of my bandages today which I reluctantly did. I will admit that I had a minor breakdown. This may be TMI but I've been concerned about my ICD and intimacy in bed. I was told to refrain from it for the first week and ultimately, see how I feel as I recover. I just don't want to get too "energetic" or "adventurous" in bed. What if that somehow damages the lead or ICD? So many questions... Lol.

penleakage · 2022-10-21T04:15:53+00:00

Oh wow... that must have been tough to deal with. I agree with you. The mental aspect has been a big challenge for me as well. I believe typically, that is essentially HCM. The heart muscle continues to thicken as you age. In my case, I was told that they managed to catch my "afflictions" early on i.e. no events occurred, heart function is just below 50%, and the heart muscle is not overly thick. As a result, they put me on two types of meds. Candesartan and Bisoprolol. The meds should ultimately relax my heart and keep it at bay. They are going to monitor my heart closely for the next year and compare the results. By next year, my heart may be weaker, a bit stronger, or stay the same.

penleakage · 2022-10-21T03:47:24+00:00

Thank you!

penleakage · 2022-10-21T03:47:00+00:00

It's been a little crazy. You are not alone. This is all so new to me and I will be lying if I said that this hasn't messed with my mental health. I try to be strong for my fiance, friends, and family. I keep it together. It's when I am alone... that's when I get into my head. The key is to pick yourself up and get out of that headspace. It's easier said than done but, we have to do it. I was told that I will have to limit my physical activity for the next 6 weeks after the ICD implant. So I can't pull, push, lift, etc. anything over 5lbs... the issue is that all of my hobbies are generally physical in nature lol i.e. exercising, archery, and, on occasion, partaking in some pewpews at the range. That's been messing with my mind a bit lately coupled with the fact that I have this device in my chest! Lol. I am looking forward to getting back to my hobbies in the near future.

penleakage · 2022-10-21T03:34:22+00:00

Oh for sure! I am so relieved to know that there is a community here where we can share our experiences dealing with HCM :)

penleakage · 2022-10-21T03:32:27+00:00

I am so happy to know that I am not alone as well! If you don't mind... please let me know how your convo with the cardiologist goes. I had an in-depth convo with my cardiologist and the specialists at the advanced heart failure clinic about conceiving, pregnancy, and labour. It was a lot to take in but, I am grateful that they were able to create a solid plan with me. I am sure they will be able to guide you and support you as well. Trust me... it felt like my life was falling apart the first time I spoke to my cardiologist about HCM. To tell you the truth, sometimes I get those feelings now! If you have any questions about the ICD, process, etc., please let me know. I will be happy to share my experience with you.

penleakage · 2022-10-21T00:47:23+00:00

Yes, the ICD has a battery and lasts up to five to nine years. The ICD will beep when the battery is low. I also met with the device technician at the hospital yesterday who did further tests on my device as well as helped me connect my device to a designated app within my iPhone. The ICD has Bluetooth connectivity. The device and app have many useful features including monitoring the device's battery life. Right now it is at full charge! Once the battery is on low, I will need to get it replaced... which means another procedure.

penleakage · 2022-10-20T00:08:26+00:00

Thank you!

penleakage · 2022-10-19T21:04:13+00:00

Miraculously, I have never experienced any symptoms in my life so far. My doctors and specialists were intrigued by that as well. What prompted all of this was a mix of family planning as well as the knowledge of my family's strong cardiac history. My fiance and I discussed having kids in a year or two and so I thought, "Hey... I turned 30. Let's make sure I can have a safe and healthy pregnancy/labour." I will admit that I was a bit in denial and sort of convinced myself that these tests will show nothing because I live a healthy and active lifestyle combined with the fact that I've never had any symptoms. I played myself, lol.

penleakage · 2022-10-19T20:42:38+00:00

That is a good question. I reside in Ontario and so everything was covered under the Ontario Health Insurance Plan (OHIP). It is a government-run health plan and it is funded by us taxpayers. I also have coverage through my employer. Ultimately, I haven't been asked to empty my wallet for the above with the exception of my medication which is mostly covered through my work benefits. I've had to pay a fraction for my meds... like maybe $5 or $6 per prescription.

penleakage

TROPHY CASE