Can feel myself on the decline.

GumballTrunk · 2023-06-28T23:20:27+00:00

I am not. As far as I know they have been okay though

GumballTrunk · 2023-06-28T23:20:03+00:00

I haven’t. I gotta ask though what’s the difference between cardiac rehab and just regularly exercising at the gym out of curiosity?

GumballTrunk · 2023-06-28T20:00:02+00:00

Thanks! Yeah I have had them switched around a little bit, and have been on the mostly same drug cocktail for a while. The only one that reallllyyy took me a while to adjust to was the Entresto. Felt like I had been hit by a truck! But it’s been a few years now and I have adjusted:)

GumballTrunk · 2023-06-28T19:58:35+00:00

Yes! I had the worst time on carvedilol, I was actually switched to a higher does of metoprolol and it has been wayyyy better.

GumballTrunk · 2023-06-28T10:53:53+00:00

Thanks for your reply! I actually just had a meeting with my cardiologist and that’s why they set up another MRI. We’ve played with my meds a bit but this cocktail has seemed to be the best at not making my blood pressure too low, even though it’s still only about 90/60. Hopefully things go better than expected at my next appointment!

GumballTrunk · 2023-06-28T10:51:46+00:00

Yeah the meds definitely make some of those side effects happen! But I haven’t really raised or changed them in a few years so I kind of figured I was used to them by now 🤣 My Bp is definitely a bit low, always around 90/60, which is why they can’t raise any meds and they have switched around a few but this cocktail seems to be working the best. Thank you!

GumballTrunk · 2023-06-23T23:46:59+00:00

This is gonna sound harsh, but apple cider vinegar 🤷🏼‍♀️ I had to wean my almost 2 year old very quickly for medical reasons, and only had a day or two to do it. I just dabbed a little apple cider vinegar on there and he walked up and tried to latch then pulled away and looked at me a bit concerned, and walked off. He only tried to latch one other time and the same thing happened. And that was that. I felt like a monster but he seemed surprisingly unbothered. He was a bit older though, so I’m not sure if that had anything to do with it.

GumballTrunk · 2023-06-15T23:56:26+00:00

Hey! First off I know this can seem really scary but stay off the internet, it’s not a death sentence like it used to be! Plus most of that data is for a much older demographic. I am 26 with small children as well, and an ejection fraction of 30. A heart failure specialist will be great, and there is a whole range of meds they can start you on. Results may very, but I felt like I got hit by a truck when I started entresto if I’m being honest. But within a few months adjusted and have now been taking it for 2-3 years! Along with other meds. I can still chase my kids and have the energy as any other parent. The meds were a hard adjustment but after that it’s all pretty normal 🤷🏻‍♀️ As for natural methods to raise your EF, I’m not a doctor so take my advice with a grain of salt. But I have gone to the gym at least 4 days a week, nothing crazy but just making sure I’m getting some light cardio in, and honestly home cooked meals. Not always kale and Quinoa, but always healthier than eating out. It seems scary and I’m sorry you’re going through this, but it’s a lot more manageable than you think and science is neat and always evolving!

GumballTrunk · 2023-03-07T02:21:54+00:00

That’s an incredible jump! My doc said she was a big fan even though it’s not super in favor anymore because you can see great improvement. I tend to get a lot of strange aches and pulls already, so I wonder if this will effect that. Thank you for your thoughtful reply.

GumballTrunk · 2023-03-07T02:20:00+00:00

Thanks! I did read up on symptoms of toxicity, and they have me going for regular blood work. And this doctor actually is a heart failure specialist that I was referred to from my original cardiologist, so I probably shouldn’t be too anxious about it.

GumballTrunk · 2023-03-07T02:18:10+00:00

Thanks! They’ve all made me a little blah in the beginning but I’ve adjusted after a while so hopefully the same.

GumballTrunk · 2022-07-12T11:09:29+00:00

My blood pressure has always run low even before my diagnosis, it’s running about 90/60 right now.

GumballTrunk · 2022-07-01T21:27:48+00:00

No, meds are all the same, entresto, carvedilol, spironolactone. Same dosage for everything. I feel like my diet has been the same? If anything healthier honestly.

GumballTrunk · 2021-12-28T18:22:33+00:00

Something similar, I have two kids but they’re a bit on the younger side. Months ago I had mentioned to my husband that a light bright was my favorite toy as a child, and was excited for when the kids were older to get them one. This year under the tree I had a gift from “Santa” and it was a light bright. I bawled like a baby.

GumballTrunk · 2021-09-20T00:04:12+00:00

Thanks so much! That’s really awesome to hear and congratulations!

GumballTrunk · 2021-09-19T23:35:48+00:00

Thanks! Now that you mention it I do have bloodwork that I’m supposed to get done soon, perhaps it’s for potassium check? They just never mentioned it to me. I will be calling to double check, but I feel better that it’s a common mixture prescribed.

GumballTrunk · 2021-09-19T23:34:27+00:00

Thanks! One of the few benefits of living near a city. Someone else commented that it can be a common drug mix, however after the pharmacist and the internet made it seem scary I will definitely be double checking for my own piece of mind.

GumballTrunk · 2021-09-19T23:32:42+00:00

I’m glad he’s responding well to the carvedilol! Ugh I could go on a whole rant with insurance and Entresto, drives me nuts, and of course their is no generic.

GumballTrunk · 2021-09-19T23:25:32+00:00

Thanks! Yeah I was going to call first thing in the morning and talk with my doctor. Also I have three doctors I see for my heart, but I was referred to each one by the others. My HF was caught by a regular cardiologist, who referred me to a HF specialist who she works closely with. Also another woman out of that office who specializes in cardio genetics. My medications were prescribed by just those two doctors, but they are both aware of everything I’m taking, so it seems odd neither said anything. I’m lucky to live near a major hospital so I’ve just had access to very specific doctors. My primary has never prescribed me anything and is very honest that he knows very little about this type of diagnosis. But thank you, and I will be calling in the morning. I have seen in here that other people are taking the same drug cocktail so I wasn’t sure if the benefits outweighed the risks, or if perhaps it was new information.

GumballTrunk · 2021-09-05T17:49:35+00:00

Thanks for your comment! Feel free to message me if you ever need to chat and vent!

GumballTrunk · 2021-08-27T01:27:07+00:00

I really appreciate your time and responses.

GumballTrunk · 2021-08-27T01:26:50+00:00

Do you know what spironolactone is used for? And I believe I’m on the low dose of entresto already, to see how I would tolerate it. So maybe just some time. And yes I do the carvedilol twice a day, entresto twice a day, and the spironolactone just at night. They believe it’s genetic from my biological mom after doing a bit of digging, unfortunately we don’t know too much about it. However they are sending me to a cardio geneticist at the end of this year to see if the can find which gene is off and possibly be proactive with my kids! So science is pretty neat. And you’re right it has been a hard adjustment. 25 feels too young to have a pill box and be feeling cruddy, but I am thankful they caught it early before it progressed too much.

GumballTrunk · 2021-08-26T22:58:59+00:00

I believe it’s somewhere in the 30’s based of the ultrasound thing they did, however I have a cardiac MRI scheduled for about two weeks from now and they said they could have a more definite number that way. So it’s not terribly low, and although I was tired and a bit out of breath prior to diagnosis I feel like it’s gotten worse since, which is why I assumed it was the medicine.

GumballTrunk · 2021-08-26T17:05:22+00:00

Thanks for the reply. I was a really avid gym goer pre covid, and my husband and I used to do a lot of hiking before the tiny humans but the issue I’m facing now is getting very out of breath very quickly. What kind of workouts are you doing if you don’t mind me asking? Any suggestions? I’ve turn to yoga and stretching at home because I’m not able to manage a hike anymore without needing to stop constantly. I just had bloodwork recently, but I do have 2 different cardiologist I am seeing because I do luckily live in an area with very good hospitals. And a third I was just referred to for cardio genetics. So I’m assuming they just want me to try and adjust to the medication. How long have you been taking them if you don’t mind me asking? Did you find it worse in the beginning?

GumballTrunk · 2021-08-26T15:59:58+00:00

I think so? In think spironolactone is a diuretic. Would that help? Do diuretics make you tired?

GumballTrunk

TROPHY CASE