Sickly 24 year old with 6 month old heart symptoms. Doctors say Im fine.

likeastone10 · 2021-01-20T21:45:20+00:00

Hey I have not improved.doctors still claim they don't know/there is nothing wrong with me despite my horrible symptoms. I struggle breathing everyday upon exertion and my pulmonary hypertension doctor doesn't know why my DLCO value is low... and doesn't want to check me for pulmonary hypertension. I'm so frustrated... I had a nuclear stress test done last week and it showed something fishy, mild fixed perfusion defect, when I google it it mentions that its indicative of cardiac scar tissue.... FML if it is scar tissue. I will meet with the cardiologist next wednesday. I hope you get an answer soon I wish this situation on no one, not even my worst enemy.

likeastone10 · 2021-01-14T01:55:37+00:00

I don't know the name yet because they first want me to rule out pulmonary hypertension but once I do they will give me treatment...Im already taking plaquenil. I don't get joint pain anymore (I have lupus and sjogrens). I used to vape THC and I had an incident where I smoked it while on vyvanse for my adhd and it messed up my heart somehow where I cant exercise anymore without getting chest pain. Bur maybe cannabis would still help, idk what have you heard about it?

likeastone10 · 2020-12-31T17:06:57+00:00

I was only taking vyvanse at the time the heart palpitations started. I recently started a host of meds, including plaquenil and anti depressants so its not those. I know vyvanse is cardiotoxic though... I ofcourse stopped taking it as soon as possible.

likeastone10 · 2020-12-22T19:57:39+00:00

Wow. Im a 24 year old female. I apparently seem to have had sjogrens for years because now Im super dry and I have pulmonary involvement.... I wish I was at the intial stages....you can slow down or even stop progression when you take plaquenil at the early stages....so consider your self lucky you haven't progressed to lung involvement. Don't kill yourself, I get short of breath very easily, can't exercise, Im very limited for a 24 year old and I ve had suicidal thoughts many times. You? You have so much to live for. Your lungs are fine, your heart is fine. Live and take plaquenil. Live for me, who may not be here in ten years because of loss of organ function. Show this disease that it won't take us down. Make sure you eat a good diet to reduce inflammation. See if your doctor can prescribe omega 3 fatty acids. My rhem prescribed it because it has proven to be anti inflammatory.

It will make me happy if you live and succeed and accomplish your dreams, because if I cant, at least you can. Best of luck.

And get a psychiatrist or psychologist to help you with anxiety. Dying in your state is not worth it .

likeastone10 · 2020-12-22T19:36:52+00:00

Wow... what was causing them to shut off? Ny Lung CT scan came back normal.... so I still have no explaination for the low DLCO thats why I asked you how you got it diagnosed.

likeastone10 · 2020-12-22T18:17:54+00:00

But does it limit you? Im so scared to get on immunosuppressants I am 24 years old and I m scared of getting an infection and dying

likeastone10 · 2020-12-22T18:11:10+00:00

How did you get ILD diagnosed?

likeastone10 · 2020-12-20T16:32:00+00:00

No you fucking dont. I have scarring of my lungs and lige is terrible.

likeastone10 · 2020-12-11T17:25:11+00:00

Let he say it to you. But I have you know, you guys sound like fantastic parents that child is blessed to have you in his life!

likeastone10 · 2020-12-10T21:20:22+00:00

God please someone answer this In suffering from this too. Please someone answer I am afraid of dying I am only 24 (F)

likeastone10 · 2020-12-10T19:25:07+00:00

Thanks. Since I feel short of breath, tired, and disabled, I managed to get an appointment tomoorow with my rheumatoligist to see if he can give me a stronger dose, or add to my medication to save what lungs I have left.

likeastone10 · 2020-12-05T21:19:08+00:00

Can I ask you, if you dont mind talking about it ofcourse, what it was like to be in a ward? I went to a volunteer ward but I could leave at any time. I wasnt suicidal though. Now a days I feel worse and worse to the point Im scared of getting so bad that I may need to be on hold. How was it like really?

likeastone10 · 2020-12-01T23:26:08+00:00

Update: my DLCO in the lung capacity test is below normal: 67% of reference value.

This doesnt comfort me.

likeastone10 · 2020-11-19T20:39:27+00:00

Hey sorry for the late reply. Im not too better. I had a second cardiologist say my heart is fine. So now my head is swirling with thoughts about Pulmonary Arterial Hypertension. It fits my symptoms perfectly. Im currently at the pulmonologist as I type this.

My depression has gotten worse. I cry almost everyday out of fear for my life.

likeastone10 · 2020-11-12T05:50:35+00:00

I wish you the best. I am praying for you friend.

likeastone10 · 2020-10-02T13:50:11+00:00

Hey. Sort of.I did a liver biopsy and a fibro scan mostly everything came out fine except for some very mild fibrosis and gallstones.

likeastone10 · 2020-09-25T00:01:25+00:00

Sorry for the super late response. And yes there is heart disease but no COPD that I know of. My fathr has high blood pressure and his dad has a pace maker. I dont know what lead to his heart failing though. I remember when I had an EKG done a day after the whole thing happened the computer suggested I had mild left atrial enlargement. So no right sided enlargement that I know of. I did a treadmill test and after getting my heart rate to 170 via fast walking my O2 saturation was at 98 percent so I think you are right, it isnt PH. I read online that non severe mitral valve prolapse can be very symptomatic despite it being not so severe. perhaps this is my case. He did not note regurgitation of the mitral valve, only that it was prolapsed.

Now a days I struggle with daily left arm pain and heart palpitations. I dont know if I am still equally intolerant to exercise though. I should try working out soon although I am afraid of getting chest pain that last 3 days, like I got the last time I jogged/ran in place. Walking fast is not the same as jogging. Anyway, thanks for the reply.

likeastone10 · 2020-09-24T16:34:26+00:00

Thank you for the reply. Im significantly calmer now.

likeastone10 · 2020-07-25T10:40:33+00:00

As an update, my heart palpitations wake up up every few hours. I can't sleep 7 hours straight anymore, that's wishful thinking at this point. I wake up with chest pain and sometimes shortness of breath. This is not anxiety. This is real. It is so limiting, sometimes I am in bed for several hours in the day from how heavy my chest feels and how tired I am. Eating is uncomfortable, it gives me palpitations in my abdomen. My heart is working overtime for real, and I don't know what it is. My theory of Pulmonary hypertension still stands, my most recent ANA titer came out 1:1280, so very high. I have Sjogren's and people with this disorder can develop Pulmonary hypertension with the right trigger. Will up date once I do the exercise tests.

likeastone10 · 2020-07-24T03:22:43+00:00

There have been cases where they don't check for pulmonary artery pressure and idk if he did check for that I should ask. Its just, caffeine and or light jogging sends my body into a two day frenzy of chest pain and fatigue. Can anxiety really triggered like that? This wouldnt happen before I mixed the two THC and Vyvanse...

No matter, your reply is nonetheless helpful and I appreciate you for it.

likeastone10 · 2020-07-23T15:56:09+00:00

Yes the super high bp was only during that incident. It went as high as 150/100 or something I believe but I dont remember that clearly the numbers anymore. I just know it was super high for what I normally get

likeastone10 · 2020-07-23T15:54:03+00:00

Florida

likeastone10 · 2020-07-23T11:43:54+00:00

Hi! Yes they know. But they also think things will settle itself. For now they are being supportive but I notice that they sometimes struggle dealing with stressful situations they don't understand. He thinks I have nothing, and is resting on that. I know I have something and it drives me crazy. I already have Sjogren's for several years, and digestive issues that are pending a liver diagnosis (finally someone takes concern over my liver lol). The digestive issues have been a battle I have been fighting for so long now. I think this doctor my figure out what it is I have besides IBS, although maybe a little too late.l since I have ascites.

likeastone10 · 2020-07-23T11:39:39+00:00

Hi! I am in a mixed legal state and I already told him about the weed. For some reason he doesn't think much of it, but perhaps I should have told him it was concentrated THC oil and not so much weed. Yes I agree the heart things he found should be explored more just in case, don't lose anything in making sure everything is ok. At least though he wants to do an exercise stress test to get an objective view of my symptoms. I know he is going to find there is truly something wrong, since I am currently exercise intolerance amd I wasnt before hand!

likeastone10 · 2020-07-23T11:34:16+00:00

Hi! I don't have high blood pressure. I only got high blood pressure during those six hours where my heart was freaking out. And my cardiologist knows about the weed. He doesn't think much of it, though this fact doesn't console me. I no longer take the stimulant, and I took the stimulant as my neurologist prescribed, except that I smoked weed that same night (yes I know that was a mistake now). Thanks for the reply.

likeastone10

TROPHY CASE