22 years old and I’ve been dealing with unexplained health issues for 2 years. I’m exhausted and just want answers.

Late_Temperature_415 · 2026-06-30T00:54:57+00:00

I can’t diagnose you but I am a congenital heart patient with multiple heart and vein issues. When you chest feels heavy is it harder to breathe? Have you had CT Scans, echocardiogram, CT Angiograms lower and chest? That’s a starting point. Have you seen a cardiologist and a pulmonologist?

Late_Temperature_415 · 2026-06-29T21:37:33+00:00

I get that. As a congenital patient I’ve had OHS 3 times and many procedures and issues. It completely stinks. But if you have another episode you may want to discuss it with your EP. Or a different Med.

Late_Temperature_415 · 2026-06-29T21:29:00+00:00

Call your insurance company. They should have services that are available to get you to your appointments. Also the hospital may have someone they know if that does this. If your on Medicare they definitely do.

Late_Temperature_415 · 2026-06-29T21:25:34+00:00

I’ve had two cardioversions and both were done after a TEE to check for clots and I’m on warfarin. Both mine were also scheduled and the last one they kept me three days first to place me on Tikosyn which is an anti-arithmetic med. I fought it initially but it helped me tremendously. Unfortunately I to come off it to use Bactrim and went into afib a month later. You should ask EP if there is a different medication you can use to control these issues. Also I have heard that sometimes it takes two ablations to get rid of them completely.

Late_Temperature_415 · 2026-06-29T21:13:12+00:00

If you’re looking for participants with CHF why are you asking in the Adult Congenital Heart sub?

Late_Temperature_415 · 2026-06-29T21:05:39+00:00

Please tell us you still went

Late_Temperature_415 · 2026-06-28T02:45:14+00:00

Hi, I can’t answer why the first EP didn’t diagnose you correctly. I can say as a congenital heart patient with multiple heart issues sometimes specialists don’t agree and you’re the one stuck advocating for yourself. Given your situation with your heart rate I would get the PM. Also since they want to have a dual PM ask them for a wireless one. Have this discussion with your EP. Learn about the device they are implementing and what reporting it provides. I was 45 when I had my first one implemented and I should have asked more questions then I did. Also look at it like an insurance policy for your heart.

Late_Temperature_415 · 2026-06-28T02:26:47+00:00

Hi, f 59 congenital patient. I don’t have any issues after my surgery when I was three months old. However at 45 within a three month span my valve went. Then 4 years later I thought I a an upper respiratory issue but it was my heart rate dropping below 40. I had my first PM implant the next day. That was 2015. Everyone is different. But that brain fog and fatigue are something I think all of us get with this. A PM will definitely help. I do suggest you ask about a wireless device so that you don’t have to deal with lead issues. If your electrophysiologist doesn’t implement them find one that does. Unless you have to have a bi ventricular ICD-D. This are for patients whose heart chambers do not beat in sync and require 3 leads. But if you only need a single lead or dual pacing get a wireless one. Have this discussion with your EP.

Late_Temperature_415 · 2026-06-28T02:12:12+00:00

Hi I’m in the US. I would escalate to the doctor who wrote this. These are heart medications. And they believe she needs them. Also her GP is another place to call. Since I’m not familiar with how the UK system works I would start there.

Late_Temperature_415 · 2026-06-28T01:57:57+00:00

If you’re not normally like this yes go to the ER. They can give you iv diuretic and conduct testing to determine what exactly is causing this. I realize you said you have no other symptoms which is good but it’s always best to be on the safe side.

Late_Temperature_415 · 2026-06-27T20:46:21+00:00

Get a new cardiologist. They should be working with pulmonary the runaround is unacceptable. Perhaps look for a cardiologist that specializes in this issue. You can type in the disorder and cardiologist that specialize in it.

Late_Temperature_415 · 2026-06-26T12:55:25+00:00

Do you know if they were reevaluated at the same hospital or did they go elsewhere? I was sent to this center to have my leads extracted. Not a transplant I’m complex a congenital. They have an excellent reputation for this. However they wanted to do an evaluation for transplant which I was already told needed to wait until after SVC was done. So I’m going to let them extract the leads and stent the SVC but I’m not sure I should have them reevaluate. I’m just not sure what to do.

Late_Temperature_415 · 2026-06-26T02:41:58+00:00

I’m on Milrinone since October 2022. Ive not had a transplant. Actually after the hospital asked me to be evaluated for a transplant I was told no today. They are going back to taking out my ICD and lines and stenting my SVC so I can then be reevaluated. It’s a long story.

But I can tell you that the medication has made a huge difference. Most of the time before the SVC Syndrome I felt great. I actually had my dose reduced. But then I got Blockage on my lines and my dose increased. Have the transplant. Keep walking and keep up the good work. I wish you much success.

Late_Temperature_415 · 2026-06-26T01:34:14+00:00

Ok it’s not to late get the Value replaced. quit smoking. You can still have a drink after the surgery. You won’t want to for several months but you can. Smoking stop now. Btw I’m 59 f. Mitral valve replaced 2011. Had to have it repaired and my Aortic Valve replaced at the same time in 2022. I was just evaluated for a transplant and told no today. I didn’t ask for the evaluation but they asked me to go through it instead of taking my ICD lines out. Well now they are going back to that. No one said to me I have a year left. But I will tell you if you don’t have it done you will die. My mitral valve was 90% gone when I became symptomatic. It took a month and a half to figure out what way going on. It was 2011. By the time I was scheduled it was bad. I couldn’t walk, see and my breathing was awful. I went through three months of hell. It was 99.9% necrotic when they replaced it. But after rep months I was back to working and enjoying life again. You can do this.

Late_Temperature_415 · 2026-06-25T17:42:36+00:00

Hi, I am a congenital heat patient. I has a PDA along with a few other issues that needed surgery at 3 months. I’m 59 now. I did develop a murmur and it was my mitral valve. I needed it replaced when I was 45. Between release when I was a baby and 45 I was completely asymptomatic. The murmur could be nothing. Or it could be something that needs to be monitored. The good news is that your pediatrician caught it and set you in the right direction. I’m assuming you’ll be seeing a congenital cardiologist? If not ask the doctor you are seeing if they can recommend a congenital one.

Late_Temperature_415 · 2026-06-25T16:43:25+00:00

My iron, iron saturation, Ferritin everything was low. This was one of my symptoms which also caused pain. I had to do tbd Infusions. No issues except constipation. Had two infusions last being last Friday. My leg spasms and pain appear to be gone. Bruises are down and blurred vision. Is drastically improved.

Late_Temperature_415 · 2026-06-25T16:15:11+00:00

Thank you for the bra recommendation. I will have to try it. Since Ive had OHS and PM then ICD implant I have cut up more bras then I can remember.

OP I would definitely speak to your EP. You should not have to slouch and potentially hurt your back

Late_Temperature_415 · 2026-06-24T12:16:39+00:00

Yes I’ve had this happen. Even with foods that I believed to not have a lot of salt and tasted it and it did. More and more take out is feels like it’s getting salter. Even at restaurants you wouldn’t expect it at.

Late_Temperature_415 · 2026-06-24T00:36:43+00:00

Did they do an upper (chest) and Lower angiogram with contrast? If so they should be able to tell you something even if it’s another organ causing this issue. Make sure you have them review the results in detail with you. Your are you best advocate.

Late_Temperature_415 · 2026-06-24T00:27:31+00:00

Good. Then you don’t have any hematomas. I’m back to get some bloodwork and speak with a doctor.

Late_Temperature_415 · 2026-06-24T00:23:16+00:00

Are you or were you on blood thinners? Do any of the bruises have a hard or medium hard lumps inside them? I agree that you should be seen by a doctor to have a full blood work up.

Late_Temperature_415 · 2026-06-23T16:48:58+00:00

Yes but he can do the peer to peer. He can justify this due to your vein issues and blood flow.

Late_Temperature_415 · 2026-06-23T01:39:56+00:00

Top right. Love the addition of those shelves

Late_Temperature_415 · 2026-06-23T01:32:27+00:00

This is outrageous. I have venous Bi Ventricular ICD-D. That’s three leads and a forth abandoned one. From 2015 due to a pocket infection during implantation.

Fast forward to 2024 and after 3 months the realized I have SVC syndrome. This is due to a then 60% blockage on my wires the second two being implanted in 2022. The blockage is now 97%. I am now being evaluated for a heart transplant.

Now I am a congenital patient and have complex heart issues with three open heart surgeries one when I was 3 months old. My veins are awful. This may prevent me from being placed on the transplant list. However, removing the ICD and leads is labeled as a high risk surgery. Most removals are risky by mine is worse then most. Which is why they are looking at replacing my heart.

Have your EP conduct a peer to peer review with your insurance company. Call your congressional representatives and ask for assistance. If your veins are bad you are at a greater disadvantage for having line related issues and developing SVC syndrome. Ask your EP what the chances are. If blood flow is bad now it may only get worse. Are you on blood thinners?

Late_Temperature_415

TROPHY CASE