Adam's Guestbook

Hi Adam!  If and when you do another Q&A with the experts, I have one.  7 years after surgery with the Edwards Inspiris valve, my current echo shows some valve thickening with increased gradient.  Cardiologist said there are new study findings that small blood clots can form on bio valves causing the decline.  I'm waiting for a CT scan to see if it's small blood clots or actual stenosis causing the decline.  I adhere to healthy eating habits and regular exercise, so if CT scan does show actual stenosis, that will be a hard one for me to accept so soon.  Especially since this valve was designed to last longer than previous bio valves.   So, my question is, are they starting to discover small blood clots forming on bio valves and how common is it?

Adam, Is there any way you can help me find Elizabeth Darwish? I had spoken to her before here, but now cannot find her. She is one of the few I found who have Primary Tricuspid and has had surgery.

Thank you,

Kim

Hi Adam, my name is Dana.  I had mitral valve repair on March 11th, 2025 at the Cleveland Clinic.  The biggest struggle is that I still have Pericarditis, which for me is stabbing pain, and feeling of tightness in my chest and shortness of breath.  I try breathing exercises but it makes the Pericarditis worse.  So does even mild exercise ( I miss exercise so much).  I realize I am only 6 weeks out, but I felt better 6 days after surgery than I do at 6 weeks out.  Can you connect me on here with other folks who have struggled with Pericarditis.  I need some emotional support.  

Adam,
I had my virtual visit with Dr Davidson Friday morning and was told best option for my tricuspid would be minimally invasive as he said my fix looks to be an easier one. The problem is insurance does not want to cover it because it is newer and cost is higher. He told me around $100,000! He did put me on Furosemide 20mg, that he hopes may lessen the severe leek, but we wont know for a month until I get a TTE. I wish there were an easier way to get help with insurance for those of us who may not have the best insurance and need these types of surgeries, as it literally can mean the difference between life and death. This should not be able to be decided by an insurance company. We all deserve the same care no matter our financial situation or social status.

Hi Adam, just several days ago I could see a very clear diagram with the human blood circulation in  the patient news feed and now I can not see it. Could you tell me where I can find it?. Thanks a lot.

Hi Adam, I would like to thank you for this wonderful blog, which provides information to heart valve patients, giving us support and guidance. I write from Madrid (Spain), so I want you to feel that your forum transcends the United States. Great work. Thank you very very much.

Adam,

I have touched base with a new person here who also has Tricuspid regurgitation. I am wondering if you can please ask more questions when you go to the conference about primary Tricuspid surgeries and outcomes of them as well as timing. I am still being told at moderate to severe to wait. I am getting more symptoms and have done a lot of research, but it is upsetting that the outcomes for tricuspid are so much more risky and not anywhere near as good chances of success and living thourhg it, much less long term outcomes. I am a single mom of a 19 year old that lives with me and have 2 much older kids and a granddaughter. I know you have interviewed Dr McCarthy in the past, but wondering if you can please reach out to him about my case and help me perhaps get him involved in looking into my tests and ask his opinion about my prognosis and options.

Thank you,

Kim

Hi Adam,  I wanted to thank you for setting up this forum.  Unfortunately I found it after my surgery.  I had a mitral valve repair.  I was doing well with the healing until 6 months after surgery. I collapsed and  couldn’t feel my leg & also fell on the floor once during shopping.     I had 15 test all with little things wrong but nothing conclusive except a severe vitamin b6 deficiency which I have been taking for three month.  I just fell again on city street and have breathing pain in the same spot I have told the doctors.   I’m thinking to go to st Francis hospital because it hurts to breathe same spot ( had mra, mri, ekg,eeg, blood work, droplet test and stress test.  Had monitor fir 3 month. 2svt 1vt. I know you’re not a doctor but did you ever hear of anyone having episodes like this?  

SHOUT OUT

To founder Adam, current and soon-to-be heart warriors, gladiators and last but not least Richard’s angels:
We did it again.  HVS is the number one (1) cardiac website.  Fours consecutive years and going strong.  😎🎉‼️

Hi Adam. I am 12 days with my new valve, installed via TAVR. I've been surprised and distressed to be experiencing brain related issues, having been under the misapprehension that those were common to OHS patients, and related to use of the heart-lung machine. Alas, it appears the literature is sparse; my sister was worried enough about me that she was prompted to undertake a big search in the cardiology literature, and came up almost empty- handed. I think she turned to the psychiatry literature next, and I told her I think that'll be equally unhelpful. 

On this website, a lot of patients are telling me this is common, and the length of time before returning to normalcy seems to vary. While my TAVR doc was thorough in reporting to me largely vascular risks of the TAVR, and knew exact incidence statistics for all of them, she made no mention of brain related (other than stroke) changes. And yet, it seems they are common. 

Do you know any good sources for better information, either from research or specific doctors? I would be eager to hear what the latest is on this. I also wonder if you might put up a patient survey to see if that could reveal something of use. I offer myself for writing such a survey, or thinking about it together with you. That is something I would be very good at, as I'm sharp with language, words, putting things in a way that is more likely to yield the information being sought. Etcetera.

I look forward to reading whatever your response to this is. Thank you. 

Hi Adam ,
I hope that you are okay.
Smiling emojis appear when I click on them but then they aren’t appearing on any messages .
They might work if I use my own off my phone . I shall try 😊 xxx

Hi Adam

I am on this site for about four or five month and I just love it.

Finally the Kaiser TAVR team has schedule my surgery/procedure for valve replacement on August 27. Obviously a little nervous. 

My dentist has already cleared me and sent the dental clearance form to Kaiser Cardiology.

In November 2023 while I was visiting overseas, I broke my front tooth/crown. My dentist extracted the tooth and did the skin grafting to prepare the site for dental implant. After waiting for 4 month she did the surgical placement of implant on May 28,2024. So practically all the invasive procedures are done. The only procedure left is to putting the abutment and the taken the impression. The dentist will put the abutment on implant on September 17,2024 then after a week or so will take the impression for crown and place that on custom abutment. Per dentist these are non-invasive work. This will finalize the implant process. 

Is that timeframe OK for me to undergo this final step with the dentist to complete the implant process?
I am asking because that will be 3 weeks post TAVR and I want to make sure that there are no concerns with the timeline.

Any comments will be highly appreciated

Sincerely

Mirza Baig



  

Hi Adam,

I haven’t been to this site for a couple of weeks, and this morning I have some extra time before church, so I decided to check out news on this site, and I found that my profile picture is replaced with Teressa Phillip’s latest photo. I think it is probably a computer bug or human error in the backend? I can change my picture back, but it might be better for me to leave it as is for now so your developers can debug? Will be happy to help in any ways you need😀

Hi Adam,

 I found out from my heart surgeon's letter today that I have a BAV. I'm going to have a Ross Procedure on Thursday, July 11 at Stanford. Thanks for this website I am learning so much!