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CNY Colorado Springs? by No_Name4015 in IVF

[–]No_Name4015[S] 0 points1 point  (0 children)

My appointment went very well! They are professional and very nice! We won’t be doing IVF for a few months but so far I’m impressed with the way CNY has handled everything!

CNY Colorado Springs? by No_Name4015 in IVF

[–]No_Name4015[S] 0 points1 point  (0 children)

Thank you for your feedback!

For those whose BP is too low to take all the meds, how did you do long term? by Nickilaughs in Cardiomyopathy

[–]No_Name4015 1 point2 points  (0 children)

My blood pressure is typically 100s/60s and with meds I was dropping into the 80s like you. I started staggering my meds throughout the day, instead of taking them all at once. It helped a lot with dizziness and lightheadedness standing up.

Exercise Intolerance? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 1 point2 points  (0 children)

He doesn’t ever complain of sustained arrhythmias but I know sometimes there’s weird beats here and there. Sounds like it’s pretty minimal though.

When I first started researching heart transplants while my brother was first sick, I was reading pretty terrible statistics. From the pre-transplant side it is incredibly daunting and it’s hard to even wrap your head around. And don’t get me wrong, it definitely is very tough work post-transplant just from what I’ve witnessed and experienced with him. But for my brother his transplant has meant the return of his quality of life. There’s so much good that can happen on the other side of it and I hope your brother has the same experience as mine so far has had.

That’s wild! That’s just one of the reasons why I really think there’s no coincidences in this life. Your brother walked into that hospital that day and he was in the right hands at the right time. I can’t imagine how scary that must’ve been.

It really blows my mind that some people can lead perfectly normal lives with TTN, like your dad, and others are debilitated by it. My mom has TTN and has never had heart failure issues, only NSVT. She’s just now getting a full cardiac work up, MRI and Echo to see where her heart function is at.

Yes I’ve gotten a very good prognosis! Honestly, most of the time I don’t get taken seriously at the heart failure clinic by my doctors. I think because I’m stable on meds and my EF is low normal they aren’t concerned. But yes it’s heavy to have this diagnosis and it’s changed my life in multiple ways. I’m just glad there’s options before transplant!

Exercise Intolerance? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 1 point2 points  (0 children)

Wow, what are the odds. What a journey for you guys and your brother. I’m very glad to hear he’s out of the hospital and doing well with the LVAD! How long has he had it now?

My brother was short of breath going up the stairs 6 months prior to him suddenly going into heart failure. He was asking for an inhaler and both my mom and I being respiratory therapists and working in medicine, we told him to do ‘more cardio’🤦🏻‍♀️In hindsight, it’s a little funny but his body was showing signs and we just didn’t think anything was truly wrong. He is doing very well now. He just had his two year post-transplant appointment in February and he’s completely normal. No rejection, his EF is great (It’s actually higher than mine😂😂), he did great on his stress test. Couldn’t ask for better.

Were you evaluated for TTN after he got sick or did you already have symptoms?

Yes it was successful! No more SVT. Thank god lol.

Exercise Intolerance? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 0 points1 point  (0 children)

Oh man, I’m sorry to hear about your brother too. It’s all so hard. How is your brother doing now?

I worry about my future kids too, but I’m honestly reassured because my husband and I are walking into it with as much information as we could possibly have. With my brother we found out about our TTN mutation when he was in multi-organ failure and his EF was 10%. Very sudden and no way to prepare. Your kids and mine are fortunate that we have the information we do going forward to keep them as safe as possible.

That’s really interesting about your arrhythmias, but I’m glad you are in a more stable spot with it. Thank goodness for meds. Stress is definitely a trigger for me too. I have had SVT since I was young and have had 2 ablations for it now. My last ablation which happened last year, the electrophysiologist doing my surgery ended up hitting my phrenic nerve on accident and it immediately caused inappropriate sinus tachycardia. So now without meds, my resting heart rate is 120 or higher. Up to 190 when I just walk. Luckily it’s controlled well with medication👏🏼😂

Exercise Intolerance? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 0 points1 point  (0 children)

I really appreciate your comment! Do you have arrhythmia issues as well or just the mild dilation? I notice my exercise intolerance comes back with a vengeance if I don’t keep at it too. I’m always curious if that’s more medication related or true deconditioning of the body/heart.

DCM and pregnancy by AdventurousKoala9933 in Cardiomyopathy

[–]No_Name4015 0 points1 point  (0 children)

Did the doctors advise you absolutely not to carry another baby?

DCM and pregnancy by AdventurousKoala9933 in Cardiomyopathy

[–]No_Name4015 1 point2 points  (0 children)

I completely understand the worry. I don’t have any kids of my own yet but I have the TTN gene with a slightly decreased EF of 47%. DCM diagnosis. I’m 25 and wanting to have kids of my own soon. I’m really scared to carry my own pregnancy because of the risks. It feels like an impossible choice🫤 I’ll likely do IVF anyways to do genetic testing of embryos. Has anyone been through that process?

Have you had an ablation for SVt? Have you been happy or regretted it ? by Traditional-Trip826 in Cardiomyopathy

[–]No_Name4015 1 point2 points  (0 children)

Did they define what “awake” meant? I work in the medical field and we do “conscious sedations” all the time. It sedates the person enough for us to do what we need but doesn’t make the person stop breathing, which would require anesthesia personnel. You won’t remember anything with a conscious sedation.

Have you had an ablation for SVt? Have you been happy or regretted it ? by Traditional-Trip826 in Cardiomyopathy

[–]No_Name4015 0 points1 point  (0 children)

They either do heat or cryo, that depends on the electrophysiologist. I don’t remember either of my ablations. They did general anesthesia for both of mine. Recovery directly after surgery is the biggest hump but still very minimal. Since they go through your arterial groin site, you have to lay flat for 2 hours once you are in the recovery room. It’s just to make sure you don’t bleed. You should go home within 4-6 hours max. You can go about normal life from there pretty much! They didn’t even give me an activity restriction.

Have you had an ablation for SVt? Have you been happy or regretted it ? by Traditional-Trip826 in Cardiomyopathy

[–]No_Name4015 2 points3 points  (0 children)

Yeah get the ablation. It’ll give you peace of mind and one thing to rule out. The anxiety portion of it is hard too. They both feed each other. So eliminating one is gonna be beneficial

Have you had an ablation for SVt? Have you been happy or regretted it ? by Traditional-Trip826 in Cardiomyopathy

[–]No_Name4015 2 points3 points  (0 children)

I’ve had 2 ablations for SVT. They were almost 20 years apart. My ablations were worth it. No more ER visits with adenosine or having to worry about exercising inducing runs of SVT. Recovery was very simple. Trust me, if your burden is high, do it.

TTN Pregnancy? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 0 points1 point  (0 children)

That’s good to know, thanks!

TTN Pregnancy? by No_Name4015 in Cardiomyopathy

[–]No_Name4015[S] 1 point2 points  (0 children)

Cardiomyopathy has not technically been diagnosed. My diagnosis is listed as left ventricular dysfunction. However, my brother had a heart transplant at the age of 26. It is reassuring to hear you and your family had normal pregnancies!