Kathy's Journal

I am having a redo surgery for the aortic valve done 1/28/2019, 12/17/2020. I have an uncomfortable keloid near the bottom of my Mini Sternotomy. Does anyone know why thoracic/ cardiac surgeons don't use subcuticular suturing technique(underneath the skin so no sutures on outside) or do they? I have never had problems when this rupturing technique was done in past operations. Thanks

Since my last post by the end of Sept after the Metoprolol ER had been increased to 50mg bid some things became clear. The dynamic (super pounding) heart had improved to where I only felt it with exertion yet I still had significant exercise intolerance and shortness of breath all the time. My heart rate was usually in the 50’s at rest with BP 90’s/50’s yet the loud murmur hadn’t changed and I had noticed I could see my R Carotid pulsating (so weird). There were so many things I was noticing that I started thinking maybe it was an overworked imagination from anxiety. I was definitely depressed from the life interference and unknown so PCP started a low dose anti-depressant.
Saw my Cardiologist 10/1 she recommended a 2nd opinion or surgery etc at Brigham and Women’s Hospital. She ordered a right and left cardiac cath and angio to rule out blocked coronary arteries and measure pressures and thought it would be done within a couple of weeks as she preferred one of two partners to do it. 10/5 it was booked with one of the MDs she had mentioned to me for the 12th, amazingly quick! Then the next day the scheduler called back saying my cardiologist preferred the 2nd md and the next date for him was the 20th. I was disappointed but it was only 1 week more.

10/7 I had an in-depth conversation with my cardiologist stating that after she reviewed my echoes with the md doing the cath thought the problem most likely is Prosthesis Patient Mismatch but because I had Pericarditis he recommended a breathing Echo to rule out Constrictive Pericardium. She still advised an out of state center and my insurance covered NYC not MA so she had a cardiologist.name. Because I had researched on this site I had decided if possible I wanted to see David H Adams MD as a surgeon. She had the same name. Her plan was for me to reach out which I actually had already done to see if they needed a referral and how to proceed. Since I knew they would need the cath results I was going to wait until it was done. Echo scheduled for the 19th.

On the 12th I received a call to tell me the procedure had to be rebooked because the dr had to take an exam and was changed to 11/3!!! Of course this poor person had nothing to do with this but I was shocked and politely expressed my dismay and concern about it re; now severe pulmonary hypertension and Covid ramping back up. Then was told the dr knew my case and had discussed it previously with my cardiologist and he said I could wait!!!! Easy for him to say he’s not the one impacted by this and I have been waiting since at least May getting more and more symptomatic not knowing if this could cause permanent pulmonary damage. I was beyond discouraged and disheartened by the consistent scheduling issues with this practice. If I didn’t have such a competent cardiologist who has treated me for over 20 yrs and always honest and transparent I would have left before now. Then I decided enough is enough I called Dr. Adams’ office to see if I might be able to get an appt there having them take over. Kim was great! After they received info they would see what came next. My recent Echoe results were faxed and the next am Kim called and said the surgical APRN said that I needed a surgical consult. The soonest appt is 11/11 so to do the Echo and Cath and get cd and reports to them asap in time for then. So it seems now I have hope to get this sorted out and taken care of in extremely competent hands. I’m so grateful for this support site!

Yesterday the breathing Echo was done and did not show any constriction of the pericardium which was a relief and she is still believing it is Prosthesis Patient Mismatch. I am showing signs of CHF and have started Lasix. I just hope when sorted out there is no permanent damage.
Thanks everyone for your help and support. Please stay safe and well!

i managed 11 mins @92 % max HR and got through the test though I was extremely short of breath and heart pounding . No SAM noted. The consensus is: "This study demonstrates subaortic valve stenosis in the setting of hyperdynamic LV function/LV outflow obstruction and exercised induced pulmonary hypertension." The PASP was 73mm which is in severe range but with heart condition they say it is Class 2 not true Pulmonary Hypertension. Somehow I can't find anything positive about that when the simplest activity is exhausting. She said it is being seen now after the valve replacement because there's nothing holding blood back. I started Metoprolol ER 25mg and it was last increased last Fri. to 50 mg because I wasn't tolerant of feeling like my heart was going to pound out of my chest until the next week. There is less pounding without activity but minimal endurance for even simple activities of daily living. I am beyond frustrated. The left ventricle outlet has been 1.8 for years it was part of the ECHO for TAVR measurements in case I failed my pulmonary studies.
My cardiologist was patient while I was semi freaking out. At my age I have tons of patience for children etc but little for time wasted. After all each day is precious. I had aortic valve surgery to get better now I may never be back to my baseline and activity level.

As for a plan, other than pleading for them to move faster than a at snails pace, I don't know what options are out there when the real cause hasn't been found as to what caused this obstruction. I told her that there must be other testing or some way to get to the bottom of why this is happening that simply putting on a bandaid (pill) was no answer for me. I am now not trusting the team who did my surgery. I never did as well as I anticipated or read others do and I couldn't get anyone to investigate why I was so short of breath months after surgery. Granted I had a bout of Pericarditis with cardiac and pleural effusion but I think the signs were there within the first week of surgery but it was not investigated by Echo. I am descending into a place I don't like where my life is impacted so that I can barely stand in line at the bank and these days it can be quite awhile lol.

If anyone has had something like this post SAVR I would appreciate any advice or hearing how you progressed.
Thank you and keep safe and well!

It has been more than a month since i posted about the possible problem with my aortic valve replacement and still have no answer just more questions and yes fear! Yes the calcium is an issue but seems rather minor at this point although my endocrinologist is still investigating that. The review by the valve clinic found that while there is a problem they don't feel it is the replaced aortic valve. That should be and is good news accept for the next determination. As explained by my cardiologist every valve in my heart has blood being pumped through under a high pressure causing the strong murmur because there is a larger volume of blood in the heart... High Output Heart Failure. All the simple metabolic and medical issues that can cause were ruled out before they met. Finally Monday I will have a Treadmill Stress Test with an Echo during it to check that the mitral valve is closing and not allowing blood to flow back during exertion because the aortic valve was not leaking at all. I am not looking forward to that test at all! I get very short of breath even bending over or walking but it shouldn't take long to see what they need since I get tachycardia with minimal activity. i am feeling so frustrated because my ability to function is worse than before my valve replacement and there is little written about this so all I have then is my imagination which has had plenty of time to worry and imagine the worst, another valve replacement, acquired arteriovenous fistula(better most likely) or never finding a cause which is the worst. Sorry this is such a downer post.

Sorry for length up front! My last post was concerning Post Pericardiotomy Syndrome, pericarditis and symptoms. It came under control with Colchicine and Indocin so I was able to start and complete rehab in June with keeping HR under 100 and didn't flare.
Everything seemed fine except I still had elevation of HR going upstairs with some sob but I felt well otherwise. This year before shut down I was still having the same going upstairs problem but EKG was ok and I graduated off my pericarditis meds without issue in Feb. In March I began having more sob, fever, exhaustion, then loss of taste. Of course everyone thought I had Covid but after 2 mos of symptoms 4 neg. tests I was sure it couldn't be. 2 months of quarantine was not fun and lonely. Turns out the only thing different around that time was the doubling of an antidepressant started in Sept after some family issues. The med was stopped and miraculously all my "Covid" sxs resolved that is except the SOB which was so bad before stopping the med,that after walking up 2 flights of stairs as I had done many times I was huffing like a freight train! It barely got any better after stopping. I started feeling like I did before my surgery. SOB with minimal exertion, dizziness especially after bending over and having to rest with little activity. I am someone usually in denial because I a RN but also my personality. If my MD says there's nothing wrong oh well I am just getting old etc etc until I recalled 3 visits to different MDs and they all remarked about my "murmur". I still had a slight murmur after surgery so I didn't pay any attention. My Visiting nurse had noticed it and had me listen to it. So after a particularly tough day I decides to listen and what a surprise! The loud squeak was back😳😬! So I started browsing and was convinced it had to be my Mitral Valve because. there was regurgitation and a lot of calcium in the annulus when the aortic valve was done. After all the valves in someone in their 60's last at least 10 yrs. Called my Cardiologist and told her what was going on and had an ECHO done last Monday and saw her Tues. She said there is a huge amount of calcium that is up against a leaflet. Peak flow is 3.6. It was 3.9 when replacement was done and 6 mos after surgery she said it was 2.6 and felt that it should have been in the 1s but I had pericarditis so she felt that it was reasonable. She also doesn't know why I am so symptomatic or why I get dizzy bending over which happens at least 2xd when I feed and water my canine companion. Her plan is to torture me on a treadmill when I can hardly stand my stairs so that is not a fun prospect. She spoke to the Interventional Cardiologist and he wants to do a Transesophogeal ECHO neither of these tests were done before my first AVR and they are reviewing my "pictures" and my case at Valve Clinic tomorrow.
I'm trying to stay calm but inside I am freaking out calmly if there is such a thing. I know I will have no choice if it comes to that and living like this is not an option for me I am too active and busy but I remember very vividly the pain I felt. No smiles for me post op and I had 4 children without any medicine so I have a high pain threshold. I should also add I had 3 1/2 parathyroid glands removed 2013 for Hyperplasia and had early cardiac calcification. Endocrine on the fence if there's an issue or not again.
I'm scared it will just keep happening.
Has anyone had this happen so soon after a replacement? If so what was recommended?
Thank you for your patience. Stay well and wear masks😊

Hi!
I have questions about my heartrate because I don't know if it is a concern or not.

Had AVR 1/28 and did well with that but have been struggling with Post Pericardiotomy Syndrome since March. Neg ekg, exam and inflammation markers at 6 wk check with cardiologist thought was symptomatic. Thought to be from surgery.
Went to surgeon 2 weeks later with increased pain and he didn't have anything to offer. Went to visit my sister for 3 weeks out of state and 2 days had pretty intense pain with breathing, miild fever and sob. Sounded like pleurisy so just did my best to be comfortable and during last week it went away. 2 days after coming home started to have pain with breathing again. Diagnosed 4/4 with moderate pericardial and pleural effusions ie Post pericardiotomy syndrome. Started on colchicine and ibuprofen and though it's been very difficult I have been painfree for one week for the first time since surgery. I was wondering if anyone has experienced increased heartrate into 100's when bending, and eating after surgery or because of PPS?
Because of PPS I have not been able to go to rehab because my heartrate is not supposed to go over 100. That is a flare up trigger. MD had to take me off Metoprolol which obviously kept my pulse under 100, when she switched me to Indocin which I can't tolerate but it did knock out the last flare up and it was over 3 mos.
It was upsetting to learn that colchicine during early post OP period could have prevented PPS especially when I specifically asked surgeon to tell me every little thing and he never mentioned PPS as a complication for about 30% of population. Not a guaranteed preventative but I would have opted for it.
Thanks for reading and look forward to your experience with this. Definitely not Afib pulse is regular.