Kimberly's Posts

I know, I do remember that and we were very close in timing for our surgeries. Mine was sept 26th 2025. Im wondering if anyone had right sided thoracotomy as well. I wonder at times if it really was not the way to go for the tricuspid. From what I have learned, that entry and particular way of repairing tricuspid has a much higher rate of pericarditis, which is what has led me here with so many complications now. Being on Rilonacept injections once a week, damage to my stomach and gastro system is horrible from the high doses of prednisone and ibuprofen and colchicine I was on for months before the biologic was given and tapering after starting it. They did have me on a PPI, pantoprazole, but took me off right away after starting the injections, which I think may have caused a rapid increase in my stomach acid levels and thrown my gut into a terrible state now. Now have gastroenterologist and endocrinologist among other specialists that I never had before and just has been an ongoing battle from one thing to the next. Tests like a HIDA scan for possible problems now with my gallbladder/pancreus and acth to check my adrenal gland that a very small nodule that was seen a few years ago and stayed the same for years has doubled in size in just past 6 months since being on rilonacept, so seeing what's going on with that. So many CT scans and zio patches and cardiac MRI in January. I should be glowing from all the radiation and contrast. Not to mention the junctional arrhythmia that has not resolved and may never resolve on its own. That alone has made it very difficult to do so many things because it makes me lightheaded and fatigued and just feel terrible most of the time. Yes, my tricuspid valve is back to mild leakage versus massive, but boy has the repair cost me quite a bit of collateral damage problems now. It was strange in the ER a little over a week ago in my chest x-rays I could finally clearly see the 4 surgical clips and the actual Medtronic contour ring in my chest! I also wonder if my body did not like these titanium clips or the ring and mounted an attack on them a month after surgery and started all of this cascade since then. I guess it doesn't matter at this point though because they are in me now and are not going anywhere, lol! I am grateful to be here and walking and talking for sure, but boy I just was not ready for this I guess. Rehab was a bit different for me because of it being so far out from my surgery and being in the arrhythmia, but I guess was a little helpful in that I know what I can do. I will be joining the YMCA and trying to keep the few machines I used at rehab going and maybe join a water aerobics class since that's safe for my arrhythmia. Sorry for the long rant, but honestly thats just a very tiny portion of what I have been dealing with these past 9 months. Maybe I will add to my story a bit and try to be a bit more active here again. I do miss everyone. Thank you again Melinda and everyone else who was there to cheer me on before and after and who I will always be grateful to have known and think of as my heart warrior family. You are all so kind, caring and just plain good people💕

Really sorry to hear that Kimberly :( I hope you get to a full recovery and all symptoms will be resolved! I’m now planning my tricuspid valve repair later this year, and it will be right side thoracotomy. All surgeons I met in Germany and Switzerland were recommending that option. They have a good statistic on this working well for patients even in case of isolated tricuspid valve repair. Curious why some surgeons are against that option.

Anastasia, I am not saying anyone said it was not the best choice for the tricuspid, as it has been said that it is. I am just saying that, for me, it may have not been the best choice. I just typed out a very long explanation and details about my experience before and after surgery, but deleted it for a lot of reasons. I will say though that it is just my experience and you should go with your Drs advice and do what is safe for you and will have the best outcome overall. I just happened to be in that percentile that got pericarditis and it would not get better on the regular meds they use to treat it, so am now on Rilonacept for a few years. My case is very rare, as I am told, and in no way to be taken as the "norm". Please know you are in good hands and you will be just fine! I just like to be honest with my own experience and not sugar coat it, as that wouldn't be helpful either. I am very grateful my tricuspid is mildly leaking now instead of massive, so I can say that is a good thing of course. I believe Germany and Switzerland are extremely vigilant with surgeries, follow up and testing to make sure you are getting the very best outcomes. You are definitely in the right place. Please keep us posted on your surgery and I am sure you will do GREAT!. I've done way too much research I think, but pericarditis is supposedly more prevalent with right sided thoracotomy. Ask your Dr and have the information on what to look for after surgery if it does show up at some point, that way you're prepared. ❤️

Thank you very much, Kimberly! ❤️ And thank you for honestly sharing your experience! I really think it is much needed and we can ask more questions and get better prepared for the post surgery period. I really hope your symptoms will be resolved step by step. It is annoying to be a rare case (especially since isolated tricuspid valve repair is rare too).