I don’t know what kind of resource that I would need in order to help. I know that there’s several apps and websites that I can go to now, but other than that, I’m not really sure what type or if anything would actually help.

Resources. Man, I think the dream for most of us is an artificial pancreas, and that is coming up on the forefront, probably within the next 10 years. I think one of the things that I wish I had too was better graphs when I had my bypass surgery six months ago, because I’ve been told that the vein graphs that they use would probably last three to five years. That’s such a huge surgery to go through and the thought of maybe having to go through that again is just mind boggling.

The only resource that I can think of that would help me would be like a personal trainer or a personal nutrition counselor that could be there to help me with my weight loss efforts, which will indeed help my heart condition improve. But other than that, that’s pretty much it, just somebody’s like more of a personal person that I could go to and to be as a guide to help with weight loss.

I don’t know that I have an ideal support resource other than I wish there was something that would help me lose the weight faster than what I’m doing, because that’s what my doctor wants me to do. But it seems like for insurance purposes that’s not possible because my insurance will not cover medication that they want me to take. But other than that, I believe that is it.

I would love a TH or a diastolic heart failure support group in southern rural Oregon. The closest thing is three to five hours away and that just doesn’t work for me when you don’t know day to day how you’re going to feel.

I don’t really have any resources that I can’t find or need. I do think it would be wonderful if there was a center set up just for the heart disease where I live at and maybe certain nurses either to come out to the home or more support groups. There’s not much here for that. All of those things, even if it was a focus group, support group, just something so you know you’re not alone.

I think having a one-on-one coach or mentor to text with, maybe even to FaceTime with. Somebody who is in the same situation, not a medical person per se, but somebody who understands and is willing to talk and process and just have the shared experience together.

I wish that there was better services to help people with heart conditions and probably a lot of different conditions, to help them do the normal things that you need to do every day, but aren’t physically or mentally able to do very well by yourself. And for instance, when I first started this track after I had my heart attack and then was being diagnosed with all these heart problems, as I said, just trying to manage all the doctors and hospitals and tests and medications just always have been overwhelming. And trying to manage all that and just becoming overwhelmed and then sometimes just hitting a brick wall where the insurance won’t pay or you need to talk to someone specific, or you need your doctor to talk to someone specific, but you can’t be bothering them every day. And so I wish that there was a coordinator to come to your house and help you deal with all these things and give suggestions of how you could be more organized and to motivate you because a lot of it is like, I can’t. It’s too much, I can’t deal with all this by myself and be sick. And so I think I would do that. I think, like I said, I think that that would have to come from the insurance company, that they would give you some sort of a coordinator to help you manage everything. And some of these things need to be done by a professional, not by a layman that has no idea how it works. So sometimes the specialists want all my medical records and all my tests records and they want to put them on disc, they want them FedEx’d to them and blah, blah, blah. And it’s got to be by a certain date, a month before your visit. And it’s like, I don’t even know where to start with that. And then you call to get your medical records and they say, “Oh, we can’t just send you your medical records, we can’t just fax your medical records. You have to come between this time and that time and for this date and that department.” So it would be really nice if you had a coordinator. And as I said, that would be great. It’d be even better if they could come to your house and help you coordinate the things like your medication and stuff like that too, so that they could see everything that needs to be done, and the paperwork.

I work for a non-profit and they don’t pay for nursing hours through our insurance. I just wish that we had more nursing hours and more insurance, maybe more support from family that would come and help out more, maybe more support from her father.

I actually didn’t find this at the time, and I’m not sure for sure if this exists now, but I kind of was looking for sort of an all-encompassing app that tracks all my healthy habit changes, the tons of new medications they gave me when I was dismissed from the hospital, because they sent me home with, I think, six or seven new medications, which was just so much to track, especially because I was trying to track if there were any side effects, et cetera. And I was hoping it would also have a social aspect, kind of like the Facebook groups that I had joined. You know, kind of just an all-encompassing app that would have all of those things in one, would be amazing. I mean, I don’t necessarily know that I really need it now, but something that track all of that would be amazing, I think. I guess I might even use it now too. Would be super-

Well, it would be nice if there were some resources out there that were comparable to some of the cancer resources that specifically help the patient get through their daily day to day activities, such as meals being delivered post surgeries and deep house cleanings like once a month. You know, these are all things that cancer patients get. You know, they have so many resources for them to help the patients with little things and I don’t feel like heart patients have those same resources. So sometimes just some help around the house would be ideal since doing basic things like dusting or vacuuming or mopping a floor can really cause a heart patient to get out of breath very quickly.

A stable doctor who actually works with the obstructive cardiomyopathy, because it’s hard to find the doctors that are in that field. There’s a lot in regular cardiomyopathy, but since being diagnosed, I’ve had like three different doctors. So, it’s a little annoying that there’s so many doctors, and there, for a while, I actually didn’t have a doctor who was really educated in the field.

As they say, “You don’t know what you don’t know.” I’m not familiar with any other resources that I haven’t checked or don’t currently use. There may be some out there, but again, I’m unaware of them and henceforth, don’t know that I need them. I’m confident and comfortable with the resources that I’m currently utilizing.

Maybe a group of people that are going through the same problems, or have had the same issues. I really don’t think that there’s any one specific resource that would be ideal. It’s a combination of many different things, lifestyle changes, eating habits, things like that. And maybe someone to speak to that has had the disease longer than me to see what the outcomes, could be, or how to maintain a better lifestyle.

Well, I honestly feel that there’s as much support out there as you can find. If you have a computer, you can touch the world, basically.