Anyone have any experience with recurrent pericarditis?
In May 2015, I had OHS to repair my aortic valve, which was damaged from endocarditis. I had pericarditis a few weeks after surgery and then again 2 months later in July 2015. In July, it was treated aggressively with Prednisone (steroids) for a couple months plus a 6 month course of Colchicine, which has been shown to have some efficacy with pericarditis. I was tapered VERY slowly off the Prednisone.
Much to my dismay, 2 weeks ago I got pericarditis again - for the 3rd time. I am back on Prednisone and Colchicine and hoping for the best. There really aren't any other treatment options that I know of, except maybe IV Immunoglobulin, and even this is not supposed to be a silver bullet. Recurrent pericarditis seems to be uncommon, understudied, and not understood that greatly.
Has anyone out there dealt with this or know of any experts that might be able assist me?
I just wanted to share something I went through recently, as I haven't heard it discussed on this site. Last Sunday, 5/24, which was 3 weeks after my aortic repair surgery, I had a fever. At the recommendation of a nurse on-call I talked to, I went to the ER. I was admitted to the hospital and stayed until last Friday (5 nights total).
I am fine now, but the fear was that I may have contracted a serious bacterial infection, such as endocarditis. I was put on IV anitbiotics immediately and, I endured numerous blood tests, CT scan, X-rays, pleural fluid test, over the week I was in the hospital. As it turns out, the doctors believe that I may just have pericarditis (inflammation of the pericardium) or post cardiotomy syndrome (inflammatory response due to heart surgery). I am back home now, feeling pretty good, but still taking anitbiotics intravenously through a PICC line for another week.
I hope everyone out there is feeling good. I am curious if anyone in the community has dealt with a similar situation.
I can't believe how good I feel. I mean, I don't feel perfect. I still am taking Oxycodone daily. But I never thought I would feel this good not even 2 weeks out. I sleep 7-8 hours straight every night. I take a few walks around the block every day. I'm up and about in my house. I can fix myself a simple meal.
The post-op stay in the hospital was tough. There was a lot of pain and it took a bit to figure out what medications were best for me. However, after flying back home from the Cleveland Clinic, things have been going really well.
I have a meeting with my cardiologist in early June. My plan is to start cardio rehab after that meeting and head back to work in mid-June. I think it will take some time to do the activities I enjoyed before the heart issue (lap swimming, mountain biking, running around with my little kids), but I'm confident that I'll get there.
For those with upcoming surgeries, best of luck! You can do it. Go in with a positive attitude and I believe you, too, will be shocked about how good you start to feel.
And to those recovering, I hope things are going well and you are experiencing little successes.
Day 5 -
Getting out of the hospital tomorrow. Feeling a little bit more clear-headed and stronger every day. The narcotics made me really dizzy, disoriented, and messed with my GI tract, so I am now only taking high doses of Tylenol and Motrin.
I'm just beginning to wrap my head around how long this might take to lead an active life like before surgery. It's going to be a lot of work and frustration, but I feel like any sports related (or old man) injury I get in the future will not feel like such a big setback anymore.
I have a long road ahead, but I am so thankful that my surgery was a success and I got to keep my original BAV. My friends and my wife's friends have shown so much support and character that I am also glad to have had this opportunity to take a "friend inventory" and see who I mean a lot to. I now know which friendships are worth investing in. Seeing my funeral attendee list is a little too late.
Anyway, just some thoughts here on Day 5.
I'm at about 72 hours post surgery. I'm less sore and able to get in and out of bed with more ease. However, I am extremely foggy headed. Has anyone else experienced this haze? How long did it last for you?
Hi all, this is Jeff's wife sarah. I just wanted to let you know that Jeff's aortic valve repair was a success!! Yesterday, Dr. Svensson at the Cleveland clinic met with us and said that there was a 70% chance that a repair would work. Well, I am happy to report that the surgery went very well this morning. No complications. Jeff is able to keep his valve!! Jeff has told me repeatedly how wonderful this site and it's members are. It has been such a great source of comfort and support for him. Thank you all. ❤️
I'm going to the Cleveland Clinic in a couple weeks for an aortic valve repair and I'm a little concerned about my care when I return home. The issue is that I have 2 really small kids (ages 2 and 5), so not only will they not help out, but my wife will be running around caring for them.
Has anyone had any experience with hiring a home health aide/nurse? Do you need someone available to assist 24/7? If I were to hire someone, how long post-surgery do you think it is necessary?
Hi all -
I'm new to this site. I'm 40 years old and recently got over a case of infective endocarditis. Unfortunately, the bacteria created a perforation in one of the leaflets of my bicuspid aortic valve. I am now lookiing into getting this leaflet repaired.
Does anyone have any experience with this type of repair?