u/sidetwotrackfour

Hey yall, is this normal bruising after a left heart cath done on Monday 6/29? I’m trying not to be paranoid, but I am. All of this has got my brain going in 1,000 directions. Had it on Monday, referral made Monday afternoon and the CT surgeon called Tuesday. They were trying to get me in Wednesday for my consult, but I’m going next Tuesday to discuss the OHS plan.

I was trying to upload a pic, but can’t 😞

I had a left heart cath and TEE yesterday morning. They found zero blockages in my arteries, but the aorta is so calcified they had to stop the TEE to avoid damage. Super sore today (throat and groin) but wondering how soon after your diagnosis of critical stenosis was your valve replacement surgery scheduled? Did you have OHS or TAVR? What was recovery like? Etc. My cardiologist is referring me to Dr Peter Plutsch in Mobile, AL… anyone else have him as your CT surgeon? He’s supposedly one of the very best. I’m not very scared/anxious/nervous about the procedure, but I am in regards to recovery, dos and donts, etc. in self-employed and guessing terrified of being out of work for 3 months.

Thanks for any info and your time in responding.

Just found out i have this goin on. Should this be covered under extended warranty?

Hi all, 58/f here who was just dx with sever aortic stenosis and told I’ll need OHS within the next 3 months. I have a TEE and left heart cath scheduled for 6/29 then we’ll go from there. I’m terrified as I’m considered higher risk due to a paralyzed hemi-diaphragm and hereditary hemachromotosis. My cardiologist wants me going to Mobile for the surgery, but of course, that depends on insurance.

With all of that being said, I haven’t been told all the dos & donts, hell, I don’t even know what valve I’ll get except he says it will be mechanical. Anyway, I’d like to know how to prepare myself, my adult kid/caregiver, home, family for what’s to come. What to purchase for my home once I’m discharged. I live on the 2nd story… will this be a problem?

Ugh… I’m so nervous and feel so uninformed. I have a trip to NYC in July, which my cardiologist said I could go but don’t need to be farther than. 2 miles away from a hospital. I asked if he was kidding and he said, “nooooo” 😳 but I’d get excellent care in NY. 🤷‍♀️🤦🏼‍♀️

Thanks for any help you can offer me.

Hey all… I’ve posted several times and been in this subreddit for a while. I have shared my journey, experience with specialists, tests, meds etc. last year I had all of the heart tests run and the TTT for POTS with my cardiologist. I was dx with POTS & moderate aortic stenosis and yesterday I had my annual ECHO. I’ve progressed from moderate to severe in a year. Just curious if anyone else has experienced this? If so, have you had your valve replaced and which procedure did you have. Can’t help but wonder if this is part of the heart damage caused by Covid. I’ve read a couple of journal articles that say yes, it definitely can cause stenosis. If you have anything to share, I’d be interested in hearing your story. Thanks.

Health update regarding my LC/POTS/MCAS journey

I’ve officially started checking specialists off the list.

I saw the rheumatologist and although my ANA markers are elevated, I tested negative for RA, lupus, and psoriatic arthritis. She did diagnose me with inflammatory arthritis, which very likely could be related to Covid. She referred me to PT and pain management. Specialist #1 checked off the list.

Then I followed up with neurology and learned I have degenerative disc disease in my cervical spine, which explains a lot of the headaches and possibly even some of the shoulder pain. I also have it in my lower back, which likely contributes to the SI joint and hip pain. Dr. Mishra also recommended PT and pain management. Specialist #2 checked off the list.

My pulmonologist is still trying to get old records and imaging from when I broke my back because we are trying to figure out when my phrenic nerve became paralyzed. She also believes some of my cervical spine issues may go all the way back to my accident and could have been overlooked at the time. Meanwhile, insurance is fighting the ventilator I need to breathe while I sleep… despite multiple tests clearly documenting the paralysis and how much it affects my breathing.

The hematologist didn’t really have any new answers other than I’ll continue therapeutic phlebotomy for life.

I start PT this week and I’m waiting to hear from pain management, even though I really don’t want to go down that road.

After 6+ years of this taking a toll on me physically, mentally, emotionally, and spiritually, I finally decided I needed someone to talk to. Somehow I ended up at Right Track, where I met with a psych NP for an assessment. After a LOT of questions and two ADHD evaluations, I was diagnosed with ADHD.

Since they don’t prescribe stimulants to medical marijuana patients, she started me on Auvelity, and y’all… it has been absolutely mind-blowing how different I feel. Truly. It’s helping with more than I can explain. Even though I hate taking it because of my swallowing issues and the panic that comes with that, the improvement has been worth forcing myself through it. I’m also waiting on approval from insurance to start SPROVATO, but even if insurance approved me, I may not be able to use it because of the aortic stenosis.

Cardiologist: Tomorrow I go for my annual ECHO to monitor the aortic stenosis and now they also want additional scans to check for iliac vein compression and thoracic outlet syndrome. 😳 due to the coat hanger headaches, the dizziness, light-headedness and falling.

BUT… ending on an upbeat note:
This morning I officially hit 30 pounds down, which means I’ve lost the 25 pounds I gained after Covid PLUS 5 more. I know getting this weight off has helped my joints and made standing on my feet all day so much easier.

Little by little, I really do feel like we’re making progress.

It’s been one of the longest, strangest, most exhausting trips of my life, and honestly crazier than I can even fully explain… but I’m finally feeling better, thinking more clearly, and hopeful that we’re slowly getting pieces of my life back through this process of elimination.

Now if we could just figure out why I keep falling. 😅 The NP did say ADHD itself can contribute to coordination and spatial awareness issues, especially since the MRIs showed no lesions, no signs of MS, dementia, or Alzheimer’s.

Thank y’all for the continued prayers, patience, grace, support, and for checking on me through all of this. It truly means more than you know.

Has anyone else here been prescribed auvelity for their depression? I know everything is different for everyone, but this medicine has made such a huge difference in my life in 7 days. It increases glutamate transmission, which can make you feel more energized, motivated, and less burdened by depression symptoms, which is exactly how I am feeling. It’s wild how different I feel than a week ago so I’m curious if anyone has experienced improvement in some areas while taking it.