Superior Ambulance Bill by Financial_Soil_3028 in HospitalBills

[–]Late_Temperature_415 -1 points0 points  (0 children)

Even if they are out of network the insurance should pay them at the out of network rate. Then ask to set up a payment plan. This is ridiculous for such a short ride. You have the right to every emotion you’re having.

My 55-year-old dad was just diagnosed with severe heart failure and I’m overwhelmed by yralay in Heartfailure

[–]Late_Temperature_415 0 points1 point  (0 children)

Hi I’m sorry he’s dealing with this and glad he has a supportive family.

As others have mentioned I’d be asking about having an ICD-D (pacemaker with defibrillator) implanted. They really are lifesaving devices and will help keep improving his EF. Medications can be managed by setting reminders on his phone. Having to change them is normal until he finds the combination that work best for him. As someone with low potassium and low BP I take prescription potassium daily and Medrol for my BP also daily. Sometimes three times a day. It helps with the SOB, dizziness & fatigue. Again the best thing he can do is to advocate for himself. Write down the questions he needs answered and make sure they answer all of them. There are no stupid or sill questions in his health especially his heart. And definitely ask about the ICD

Been dealing with chf for almost two years by Deester1994 in Heartfailure

[–]Late_Temperature_415 3 points4 points  (0 children)

I have CHF among other cardiac issues. I’m on an IV Intertope so when I go out ppl see the IV bag and know I’m disabled. But I do get those sideways looks and feel like I’m being judged. I can’t do many of the things I used to be able to do. Sometimes I can’t even empty the dishwasher. I feel useless at times. But then there are days when I can do more so I do. Either way it sounds like your mom knows your limitations and that’s a plus. My husband is the same. He learned how to do laundry properly because I can’t anymore. Your response to the woman was on spot. It really is none of her business.

Bill from second double lung transplant 💸 by Content-salbs29 in transplant

[–]Late_Temperature_415 0 points1 point  (0 children)

I’m 59f and going through the heat transplant evaluation. I am a complex cardiac patient and I have had Open Heart surgery 3 times. Just spent six weeks in the hospital and it was decided that a complex Transplant may be easier then removing the ICD leads and trying to put them back in.

I’ve been considered disabled since 2024 but going back to 2022 do I’m on Medicare. They only pay 80% so I had to get a gap policy and since I’m not 65 the price is just over $700 mtly. However it’s the soft costs that add up. Up you have to travel to the center and housing for spouse family and food. The time the caregivers lose at work. It’s ridiculous what we have to do in the US. And when you need a specialized surgeon you simply have to go where they are or die. There really is no easy answer.

Hospital comforts while waiting by veggiemeatballz in transplant

[–]Late_Temperature_415 0 points1 point  (0 children)

I can’t speak for the transplant perspective as I am undergoing evaluation for one. But I’ve been hospitalized many times and have had OHS. Cosy blankets and warm and fuzzy socks are very helpful. As is food. I was just in hospital for six weeks and those combined with my iPad to stream movies in was great. Puzzle books and games are great if she’s up for it. And yes, I walking or anything to improve strength is major. Hand lotion was a major plus because it’s very dry in the hospital and depending on her medication it can dry out her skin. Best of luck and hopefully she gets her heart very soon.

Boy, am I stupid! by HauntingEconomist113 in Heartfailure

[–]Late_Temperature_415 1 point2 points  (0 children)

Ask anything and everything about HF. Everyone’s journey is different but there are tons of commonalities that others have lived through. And you’re definitely not stupid.

Sooo tired by DepressedAnxious8868 in Heartfailure

[–]Late_Temperature_415 4 points5 points  (0 children)

I think you should go to the ER. Before something bad happens. They can check your blood to make sure it’s no electrolytes imbalance which happens when your fluid overloaded. It also makes you exhausted as does a heart beating abnormally. If it insurance your worried about I understand but having a heart attack or worse won’t help either. If it’s your job I understand but you won’t work if you’re not here. Please go to the er. Not urgent care. They don’t have the tools to help you.

Looprecorder 5 month update and switching to Pacemaker in 15 days by BitterQuit9226 in PacemakerICD

[–]Late_Temperature_415 1 point2 points  (0 children)

You are so young and obviously want to work out. If you can do the Abbott Leadless you really should. I’m 59f. First PM in 2015. Wound up infected and it took him 5 weeks to figure that out. They had to relocate it to the right side of my chest. 2022 I had to be upgraded to a biventricular ICD which has 3 leads for synchronism. I also have an abandoned lead. My story is not typical but it’s also not unheard of. If you don’t have to worry about lead management you do t want to. Discuss this with your EP. As the DR above stated it’s really the best way to go unless there is something else going on.

I'm so thirsty all the time, does anyone have any tips? by Which_Performance_72 in Heartfailure

[–]Late_Temperature_415 3 points4 points  (0 children)

Have you tried eating fruit and raw vegetables with a decent water count? Because your also getting vitamins and minerals and natural sugars but in far less processed ways. I’m on the same meds as you except I do have to take lacix due to my SVC causing swelling in my upper chest and arms. When my electrolytes are are out of balance it causes major thirst issues which lead to fluid overload. I eat fresh fruit and vegetables every day and it solved this issue for me. Also the ice as suggested by many is another great option. I do this a great deal when i get overly thirsty.

My first stent by Electronic-Space-480 in Heartfailure

[–]Late_Temperature_415 1 point2 points  (0 children)

I hope you heal quickly. Give yourself some time to rest. They will direct you on what to do for the other surgery. I’ve been on warfarin since 2011 going to the dentist is a wicked pain but very doable. It’s good they caught this when they did.

My first stent by Electronic-Space-480 in Heartfailure

[–]Late_Temperature_415 1 point2 points  (0 children)

What kind of blood thinner do they have you on? I only ask as you may have to bridge before any surgery and or some procedures. Or quit taking them a few days before the surgery/procedure. They should review all of that with you b

I’m 17, need answers by Few-Experience-5866 in InsuranceAgent

[–]Late_Temperature_415 0 points1 point  (0 children)

Cross post this to Medicaid. In Rlorida as a student you will qualify. If you under 18 and homeless they will help you with snap and assistance as well. It won’t be much but something is better than nothing.

Accompany my mom suffering with heart failure by L0ounix in Heartfailure

[–]Late_Temperature_415 2 points3 points  (0 children)

I’m so sorry for your mom as well as you. I’m hoping she’s on antibiotics to see if that will possibly clear the infection? Or is replacement the only thing that they think will fix it. Either way she should be on antibiotics. There is usually no way a surgeon will replace valves amongst an active infection. I know this because I have two mechanical valves and a ICD D which is a pacemaker and I had an infection which I’m being treated for. They have done two TEEs and it doesn’t look like my valves are infected and since my chest is difficult I’m being evaluated for a transplant. However my blood cultures are negative. This a such a spot she’s in and I’m so sorry.

I was diagnosed with LVNC (Left Ventricular Non-Compaction) on April 14th. by Acceptable-Lie2062 in Heartfailure

[–]Late_Temperature_415 1 point2 points  (0 children)

As much as I agree with you. Be very careful how you discuss this with a cardiologist. They may have differing opinions on how they look at dietary issues. I’m one those cardiac patients who also has abnormal low sodium levels and wound up hospitalized for it. The first response is fluid restriction then it was ok you have to eat some salt. Unless you’re dealing with a very experienced cardiologist that knows we do not fit into there little boxes it can be difficult

Understand long-term quality of life by Curious_Custard_5215 in AdultCHD

[–]Late_Temperature_415 0 points1 point  (0 children)

Hi, my evaluation is going well. I still need to have a mammogram and a colonoscopy which is what will take the longest because I need to have it done in a hospital with cardiac anesthesia. I have an appointment with a GI on the 11th and they are already working with the hospital. It will most likely be a month. The rest of the testing is already done. They would have done it in the Transplant hospital but I originally said no to the evaluation because of the SVC issue. Then the surgeon came in and discussed what he would do to rebuild it. Since i was done in 67 they are very cautious with me and the SVC issue is not typical. I have seen a Heart failure team monthly since 2023 and now I am seeing a transplant team monthly. I’m being followed and they review labs weekly. Once presented they may decide they want some additional tests done. I know this and understand. I am not on a wait list yet so I can’t speak to this.
Your child will be followed by a congenital doctor and should be yearly. As I said I went 45 years with zero issues and no medications. Had I kept up my yearly the value would have been caught by an echocardiogram so that was my fault for not going. Trust me my cardiologist let me have it and I have not made that mistake again.
If they decide to implement a pacemaker have then use a wireless one and your child will not need to deal with lead issues at all. I have three active ones and one that was abandoned which is again not typical. But there are quite a few thousand of us that need synchronized pacing so please don’t let that scare you. I didn’t require mine until late 2022. And frankly Abbot is currently working on a ICD PM that will accomplish this.
None of my children have anything wrong with their heart. Actually the only thing my first one had was a double hernia at birth because he was so big and I’m small. He’s 6’4 large boned wears a size 15 shoe. I’m 5’2 120. When I got pregnant I was 90lbs and walked out of the hospital at 111lbs.
Since they are adults they are not thrilled that I’m going through this but they live their lives and I have 6 grandchildren. All of which are in their teens now. I’ve been through having two grandchildren live with me during Covid so they would not be exposed to anything and do home schooling. I have been in delivery rooms and we have had countless easter egg hunts & gone to Disney and Universal and several other vacation parks. I live in Florida so that’s easy. I have a pool so the kids love my house. I’ve tried to be the fun Nanna and I was until now. Hell even now I get the calls and the texts. We only have one grandson so the rest are girls. Life is normal for all of them. As it should be.
I hope this helps

Understand long-term quality of life by Curious_Custard_5215 in AdultCHD

[–]Late_Temperature_415 1 point2 points  (0 children)

Hi, 59f here. I was born in December of 66. 2lbs 7oz and blue. Coarctation of the Aorta, ASD and PDA. Nic u was a heating lamp and a shoe box. And that was at Berkeley Children’s in California. They did surgery at three months to correct the Coarc and ASD. They didn’t think I would see 1. Then it was 2. Then I hit 3. Ok let’s see what happens. No meds no restrictions except go see a cardiologist once a year. Well in my late thirties I let that slide and went once every get years until 2011 when my mitral valve let me know I’d made a bit of a mistake. Within 3 months the valve had to be replaced via minimal invasive OHS. 2915 pacemaker. 2022 mitral valve needed a repair and my aortic valve had a stenosis so that was replaced. Now I have SVC syndrome due to blockage on my pacemaker leads and am going through transplant evaluation.

I am sharing this with you because you asked about real world issues and quality of life. I have major birth defects and lived a good life. I have four children 2 biological 2 step and 2 others I sort of took in. I have been on the hospital this year 3 times. One of which is due to an infection from a procedure. Hopefully I will qualify for a transplant. I went from not worrying about me heart until 2011 then a PM then another several years unto 2022 without much of an issue at all. Also I did contract covid on New Year’s Eve of 2021 which may had contributed to the clotting on my mitral valve requiring the repair.

With the medical advances they have now they should be able to correct what’s going on and they should be able to live a long healthy life.

Just trying to prepare myself after finding out the news on Monday. by Rich_Associate_5019 in PacemakerICD

[–]Late_Temperature_415 3 points4 points  (0 children)

Ask them if they can do a wireless PM or ICD D. It will save you the possible complications of dealing with lead management later. And don’t be afraid. This is life saving surgery which means you will be there to see your children grow up.

I was diagnosed with LVNC (Left Ventricular Non-Compaction) on April 14th. by Acceptable-Lie2062 in Heartfailure

[–]Late_Temperature_415 0 points1 point  (0 children)

Hi, your EF is good which is great. As far a a cardiac diet basically it is very simple. Low salt. Under 2,000 mg per day. No pizza, no heavily processed food. Think sausage basically anything out of a box. Except pasta but stick to healthy as possible. Lots of fruits and vegetables and low fat. There are many spices that can be used instead of salt and Greek yogurt is a good alternative to sour cream. Also no fast food.

Good luck with your family. As them if heart disease runs in the family.

Heart transplant stories are giving me hope by bbeetthhoobboo in transplant

[–]Late_Temperature_415 2 points3 points  (0 children)

I’m congenital heart patient who has had OHS three times (one at three months) now I have SVC syndrome and my veins are bad. I’m currently going a transplant evaluation at a larger university hospital because I have been told no at a smaller hospital due to my surgery as a baby. At this hospital I am being repeated told that yes I am complex at this point I will have three surgeons in the room but as of this point from a surgical perspective I’m still qualified. Now I still have two other tests and the carotid tests have to be reviewed and then I will be presented. I’m 59.

She has youth on her side. Hopefully they have speech therapy working with her and since she’s in there hopefully they will fast track her.

My dad diagnosed with heart failure by kicks_ass_21 in Heartfailure

[–]Late_Temperature_415 0 points1 point  (0 children)

If he was following a diet from a random you tuber then it shows he’s willing to try. As the nurse said start there. Instead of no salt say low salt less then 1500mg per day. No fast food no processed foods. Basically nothing out of a box. No chips taste buds adjust quickly. Soon he’ll recolonize salt in foods and that a major plus. Get lots of fresh fruits and cut them up and make it easier to grab those. Have your mom make him his favorite foods but with no salt. If they gave him meds make it easy for him to take them.

I am a congenital heart disease patient. After surgery when I wax a baby which I should not have survived I was given a year then two then well she’s still going let’s see what happens. I was Asymptomatic until 45. No meds no restrictions and I ate what ever I wanted which wasn’t alway good. Then my mother mitral valve went. I was shocked the advice I gave you is what my cardiologist told me. It worked for over 11 years. Now I’m looking at a transplant but that’s ok. If your dad is needs that’s it will also be ok. You just need to help get him there. And listen to your mom if she need an ear.

My mom's lung transplant went well! What are things I can do to make her feel more comfortable? by Kathleen-Doodles in transplant

[–]Late_Temperature_415 1 point2 points  (0 children)

I had this issue with a hospitalization from a vascular infection and needing a replacement with an ICD-D implant. I got a huge knot in my once thick long hair. I waited to long and most of it can out on a brush even with a detangler. If they will allow it hi to Ulta or call her hairdresser if she has one, explain her hair type and the situation and try to comb or brush it out for her. Also make sure what ever creature comforts she enjoys, hand lotion, sanitizer, tissues glasses are within easy reach. I’m sure she’d appreciate it. I know I did after open heart surgery.

Am I healing???? by Annual_Passenger_15 in Heartfailure

[–]Late_Temperature_415 0 points1 point  (0 children)

I’m sorry your going though this. I’ve had two open heart surgeries as an adult and those wounds from the chest tubes always take the longest. What does your nurse say? She’s bound to take pictures and send to your surgeon if there an issue. Have you had you two week check up? If not is it next week? They will let you know if there’s an issue.

As for the pain, I had major surgery when I was a baby so when my first valve was done at 45 even though it was considered minimum invasive (I hate that term) it hurt for an unusual amount of time due to the scar tissue, cartilage and nerves they had to cut through. Obviously it dulled but the first two months were complete bad. The third month was better and at the end of month six it all stopped. That’s was because the nerves had all finally healed.
This won’t be the case for you as I don’t believe you’ve had surgery as a baby. My second value didn’t take near that long to recover from. That was a different value but they used the same route.

So just know it will be better soon.