Chrissy's Posts

My aorta valve was closing. It went from immediate to serious in three months so I decided to obviously do the Taver, which works for me. That's all I know about what happened. He just told me that it was closing and I could die. I mean it could just I wouldn't have any blood coming out of it so I would get more explanation about what they would have to do. I never really got that explanation but good luck. I'll pray for you.

John, thank you for clarifying that. My EF is still above 50%. Ill have to keep an eye on that now. I am so glad you are doing well now. I do hope your other problems get figured out, but at least you are able to run and work. My shop is all I have now. I'd love to be able to run or even walk more than a block or two when really pushing my pain level. My ribcage, scoliosis and degenerative disc disease make it hard. Something I did not have a problem with before, which just keeps adding to the growing list. I just am struggling with what to do first, second etc. with so many tests, specialists and such. Almost want to just scream STOP and take a break from it all for a while. The past 8 months have been rough and a break would be so wonderful. Maybe I can ask my Dr if I can just not do anything for a couple of weeks and give myself and my son a break from everything and regroup. I do not think a couple of weeks will make any difference in the grand scheme of things. Thoughts anyone? Haven't had a full week without either a DR apt, ER visit, In- Patient stuff, testing of some kind or rehab, etc. since my surgery last Sept.

Kim, that is really rough. I'm so sorry. I was happy when I got a couple months break between October and December. It had been 2 years since I had a break from doctors that long. I'm mostly down to annoying stuff like my fingers don't bend/straighten completely plus my drugs make me feel like crap 3 days a week. It's not fun but it's manageable, like a perpetual hangover. I prioritized: 1. heart 2. arthritis 3. fingers. All these problems hit hard in 2024. I'm working on rehabbing my fingers now and hoping the new drugs help as well.

John, thank you for the response. just typing this is really difficult. I am also trying to prioritize my stuff. 1. Adrenal nodule doubling in size since starting rilonacept and getting all testing done for the endocrinologist 2. Get a plan together to try the Flecainide they insist I try before an ablation or pacemaker. 3. Get updated testing from pericardia specialist and get apt to see him asap for this follow up testing from 6 months on rilonacept injections. 4. Draft a serious letter and send through MyChart to all of my specialists to take into account all information, testing, bloodwork, etc. and all make informed decisions according to MY individual profile, not "go by the book" as my case is NOT "by the book". I am so sick of trying to go from Dr to Dr and they NEVER talk or communicate with each other. How can you care for a patient if you are not all communicating efficiently!? 5. FIND SOME PEACE🙏❤️

I wish you luck. I constantly pepper my doctors with MyChart messages, especially when things are changing or I'm having lots of tests or I'm worried about medication interactions. I remember having to really push my surgeon's staff to talk to my rheumatologist after surgery. The surgeon didn't want me going back on methotrexate while recovering and I kept telling them, "if I'm not on it, I'll swell up with edema and my joints will freeze."