Kimberly's Journal

Had a virtual visit with my cardiologist yesterday for a follow up from my echo a few weeks ago. Things look stable and not much has changed, which is always good news. However, I also asked her some hearder questions and not too optimistic about the answers she gave me. Primary Tricuspid surgery is not done often and there are no FDA approved devices to repair or replace Tricuspid. There are only "Trials" at this point. It frustrates me because I see so many people here who have their tricuspid repaired if they are getting other valves done already. Also told the outcomes for primary Tricuspid surgery is very risky and not very good outcomes as far as survival rates and such. It is hard for me to understand why outcomes seem to be o.k. when done along with other valves, but not when ONLY the tricuspid is done. Also long term outcomes are not good either. I am sorry if I am a downer today, but it has really put things into perspective for me. She did say if I begin to have swelling in my legs and ankles and my regurgitation goes to severe, that is when the surgical teams would consider surgery for me. Hopeful they will really do more for tricuspid and make some progress in next few years. I will try to stay positive and get my brain to turn off the worry and anxiety over this every single day.
Maybe Adam can ask some questions for me. I have sent him some questions to ask the experts when he does his interviews.

Going for my 6 month echo this afternoon. Always nervous on these days, but hoping for stable results Go downtown on the 30th to see Dr Rigolin at Northwestern Bluhm cardiovascular institute in Chicago and go over my results. Best wishes and thoughts for everyone here, and hope everyone stays away from this nasty flu bug going around.

Had a little scare yesterday with racing heart after bending down to pick something up from floor. Strange, because all I did was bend down and all of a sudden my heart kind of skipped, then started beaing fast. Took BP and it was 117/90, which the diostolic is very high since it is normaly in the 70s. Episode only lasted about 2 minutes, but was offputting. No pain, just felt so strange. HR went back down as fast as it started, literally from 115 to 69 in a couple seconds. Spoke to cardiologist and will wear a monitor for two weeks starting on Monday. I know its not a big deal compared to all the things most of you go through, but just scared me a bit and my 18 year old, very sweet, shy son was worried, which I hate. My Blood pressure cuff shows if I have irregular beats and I was not having them during this episode. Ive been a bit dizzy on and off lately also. Guess we will see what monitor shows. Anyone else had similar experiences?

Does anyone have tips on sleeping better? Ive had trouble sleeping for a few years now and tried so many things and still struggle. I cannot take sleep meds because of the blood pressure meds I take. Tried benedryl, all kinds of natural remedies, but nothing seems to help me go to sleep and stay asleep. Average like 3-5 hours a night and just sick of living this way. Ive talked to Drs and just say same every time. Benedryl, take a walk, create a good bedtime routine. I have done it all, even sleep therapy. I know I have some sleep apnea, but numbers show I only have 4.3 episodes per hour, and Nueroligist will not prescribe CPAP unless it is 5 or more.
Thank you all in advance. Hope I get some suggestions I have not found yet :)

I still have not found anyone here that has primary tricuspid regurgitation as a diagnosis (also have ascending aortic anuerysm). It is hard some days thinking that the tricuspid is such a rare thing and according to my cardiac specialist, says all of the surgeries for tricuspid are pretty much experimental still. I am not at the point, moderate to severe regurgitation, for surgery yet, but I constantly am thinking about it and what the outcome would be for me. Some days are harder than others, but I try to just take it a day at a time I guess, as I have no other choice.
Thank you all for this site and for listening and supporting each other, it really makes one not feal so alone in this.

Had my 6 month echo on Monday and will have a video visit with my cardioligist on the 1st next week to go over the results. I am hopeful my tricuspid valve is staying the same as well as the right side of my heart not becoming dilated because of the moderate to severe regurgitation. I do know from the echo tech that my aortic anuerysm is staying same at 4.0-4.1, so that is good news :) She also said me EF is at 67, which is better than last few years! Yae!
Wishing everyone a beautiful Holiday weekend with family, friends, or just relaxing on your own and enjoying nature.
Much love, prayers and hugs to you all!

Has anyone had a cortisone injection in their knee and had a reaction like high heart rate upon standing, insomnia, irregular heartbeat? I had an injection yesterday and am not happy with the side affects to say the least. The orthopedic Dr said, when I asked about side effects and interaction with my high blood pressure meds and heart problem that there are NO side affects. Rushes me in and out and now I am so sorry I let him do it. Have contacted my cardiologist and now need to go get an EKG. My knee was swollen and xrays showed bone on bone, but I was not in any pain at all, just a little stiffness. So sorry I did that, but guess now I know no more cortisone shots for me! Also made sure to let Drs office know how I was rushed in and out and the injection side affects were not dicussed at all, as it states in my visit summary, as well as all of the other things in my visit summary that were not explained or discussed at all with me. They just write all this stuff in your visit summary and it is all lies and none of it was done or talked about at all. Just give you shots, tell you you need silicone injections to help, given a pamphlet about this stuff they want to inject and sent home.
Sorry for the long post, but I did not need this extra stuff right now, and I was doing fine with just a little swelling in my knee and no real pain. Sheesh!

Going tomorrow morning downtown Chicago, Northwestern, for an Echo stress test and see my cardiologist. Wish me luck :)
Sending good wishes and much love today to everyone!

I know it is probably not the best practice to do this and I am a little embarassed, but here it is. I have an online shop that supports my teenage son and I, and sales have been down this year, so looking for ways to boost just a little to keep us afloat. If anyone is interested in affordable gifts for family and friends, please consider my small Etsy shop and I will be forever grateful. I am putting together a coupon code for anyone who orders from this site (use code, HEARTWARRIORS and get 10% off your order)
Thank you
https://www.etsy.com/shop/RusticMidwestCharm

Sooooo Happy to know Ana is doing well and am excited to know about her experience whe she is home! So much Love, Hugs and Blessings to all Here, as well as those that have not found this site as yet. I always tell every Dr. I speak to about this site and ask that they please let their patients know about it, as it can be so helpful to those of us struggling.

Hello, I have been reading a lot of patient stories and it helps me to stay positive about when it is my time for surgery. I just had my yearly echo in April and my tricuspid is now almost severe and my aneurytic aortic artery has gone from 3.9 to 4.1 in the past 2 years. I also have mild regurgitation in mitral valve and slightly enlarged right side of heart because of leakage. I do feel much more winded and have difficulty doing things I did not have such difficulty doing a year ago. I have decided to schedule an apt with a cardiac surgeon at Northwestern University Hospital, Dr. Malaisrie, who Adam has interviewed several times. I want to ask him what my options will be as well as at exactly what point I will become a candidate for surgery. I have read that mortality rate with early intervention with the tricuspid valve is much better, so would like to be sure I am not waiting too long. I would really appreciate anyone who has similar diagnosis to cotact me or communicate with me, so I do not feel so alone through this. Thank you to everyone, and especially Adam Pick for making this website and this community possible.