Sommer's Heart Valve Journal

I am 6 weeks post OHS sporting a new mechanical valve and enduring Coumadin therapy. I have started really noticing a lot of hair loss. At first I thought it was just from stress of surgery, but now realize this is a big side effect from Coumadin. For my Coumadin folks...does this level off and the hair grow back as your body adjust? How much thinning are we looking at?

Late to post. My amazing surgeon Dr. Paul Moore!

I am 4 weeks post op from aortic valve replacement with a St. Jude Mechanical Valve and Ascending Thoracic Aneurism repair. Surgery was uneventful, but 2 weeks later was readmitted with pericardial effusion and pleural effusion. The pericardial effusion was treated with window that will prevent fluid from accumulating around my heart for some time. A chest tube drained my lung. I was feeling good. Had finally started feeling something like my old self. I had some beautiful days of clean easy beautiful fresh breaths. I had never had anything that satisfying before. Yet, the past few days have left me falling short. Back to not being able to get that big satisfying taste of air. Was this common for anyone else this far out from surgery? Talked to my surgeon and he put in orders for a chest X-ray. I really REALLY do not want another chest tube.

I did it!!!!

This is her husband and Sommer wanted me to update the community. The surgical team has taken her back to get prepped. I expect the surgery to taken 3-4 hours. Will continue to update.

This is her husband and Sommer wanted me to update the community. The surgical team has taken her back to get prepped. I expect the surgery to taken 3-4 hours. Will continue to update.

Had my cardiac cath yesterday. It was definitely an experience, and much like the stress test, I am A-OK if I never have to do it again. It wasn't horrible, but more a bit uncomfortable. All in all, everything moves so quickly so any discomfort that I had- it was gone in 1-2 seconds.

I had never had the procedure before and never really knew how the process went. Maybe this will be helpful to anyone that hasn't had a cath yet.

Arrived for registration at 8 with cath scheduled for 10 am. Everything went smoothly and I was up in the cath lab by around 830. Then several nurses are bedside, each with their own job to do. Very efficiently. A nurse was doing the check in stuff- medications and history, a nurse was hooking me up to everything and a nurse started my IV that she used for labs. Soon, my cardiologist Fellow came in to discuss the procedure and to see what I understood of the procedure and then he filled in the rest. While I love this particular Fellow and he is understandably the best of the Cardiac Fellows- I opted for my cardiologist to do the left heart cath.

My cardiologist soon arrived and gave me a big reassuring hug and told me that everything would go great. Then, in no time, I was in the procedure room with a team of professionals that were amazing to watch. Each person doing exactly whatis needed to be done before it was asked of them.

The next part. The prep. I thought this would be so embarrassing, and I spent more time on typing that than it actually was. One nurse is holding a drape waiting to throw it on your body as soon as another nurse starts pulling the sheet back. I was never completely exposed. As the blanket is raised another tech that has 8 arms throws a towel on anything that a bikini should cover. Then a sticky sheet. I'm not sure how that worked, but it seemed to have places of tape that was pushed down on possible sites the cardiologist might want to access.

The possible access sites are washed with the coldest soap and water that has ever been made. Next my cardiologist is in and numbs up my wrist. He said that it was going to hurt, but it really didn't. At this time, the nurse pushed Versed (and I am now hands down thinking that may be the best stuff out there). I was calm and really didn't care about much at this point. The "cocktail" came next (medicine to keep stuff open)and it was supposed to be painful, but see my versed comment. They had told me to count to 7 and it would be over. I never even counted and think I spent my time asking the nurse if I could have some versed to take home or if it could be mixed in essential oil. I think I felt the catheter going up my arm to look at my heart, but I don't know if I only felt it because they told me I might feel it. Then, he had to push something to get a picture of my aortic root and they told me I would feel my chest get warm. What I actually felt was warmth in my throat and suddenly warmth like I peed myself. Luckily, I didn't pee myself and it was the effects of the medicine- that also passed in about 3 seconds. Then, it was over. My cardiologist came over and showed me shots on the big screen and said that the valve is really-really bad with much worse regurgitation than could be shown on an ECHO. He said that OHS is absolutely the best decision for me at this point. He added that everything else looked really good with no blockages. He showed me my aneurysm and where they would cut and remove it and replace it. My BAV was gnarly to look at. It didn't look like a valve at all but reminded me of 2 large open pouty lips that have failed me miserably.

They placed a band on my wrist to hold pressure. Truthfully, that band was the most annoying part of the experience. It is made to cut off circulation (or to stop the bleeding from the arterial stick), and it was tight. They come in every 15 minutes to deflate the band UNLESS your body doesn't cooperate and decides it doesn't want to clot. Then, it is pumped back up to the previous amount with time added. This process took the longest because I kept wanting to bleed.

I used my first ever bedpan, because you are restricted to bedrest during this time. I failed at this and believe the bedpan design is the worst design for the task. Though, I guess the design doesn't matter when you cup runneth over!

So, again, it wasn't the worst thing ever. My experiences with procedures are from 3 C-sections, thyroid biopsy, and then this. I believe I would rank the thyroid biopsy as worse than the cardiac cath because they didn't sedate me for the thyroid biopsy. The radiologist only numbed the area and then commence to jabbing my neck over and over collecting a biopsy. Somebody should tell them about Versed! Hope this is helpful for anyone awaiting a cardiac cath!

OHS on Thursday.

Recovery Recliner delivered today and the oldest 2 have claimed it! Long shot of just a 2 day recover, but I hope to be on my way home to them this time next week.

1st purged the deep freeze to make room for some planned ahead meals for my family and me. Anyone have any favorite freezeable casseroles that a novice cook could whip up?

In 14 short days I will be in OHS at this exact hour. I feel as if I have questioned myself out with the important stuff and now am interested to hear about the more less important and possibly even stupid stuff. I will start with the more important and then move to the sillier stuff.

I understand and am agreeable to needing a recliner chair. I'm in the process of narrowing this search down, but would like to know if having a lift in the recliner is necessary? I am looking at a less expensive recliner (because we are not keeping it once I no longer need it) and it has heat, message and electric recline, but it doesn't have a lift. I would really like to keep cost to a minimum if it isn't necessary.

Then the other thing. Anxiety continues to show it's ugly head at different times and I'm trying to deal with it. I worry that the day of surgery I will be ugly crying with snot bubbles and causing stress to my husband and family. I don't want that at all. Was anyone given anything for anxiety upon arrival at hospital?

Then, I am working on my bring to hospital bag- toiletries, chargers and electronic stuff with a Netflix list (would love to hear of any great series to look up), chap stick, chewing gum, favorite blanket and pillow, and I am going to bring a hook and yarn just incase I fill up to passing time. Any other must haves that helped during this time?

Then, what does one wear while in the hospital? Do you just stay in the hospital gown the entire time (I don't want to be in a gown gallivanting with therapy down the halls? Surprisingly enough, I don't have many button up shirts or any PJ's. I have ordered 2 button up PJ sets and bought 1 button up shirt. Should I be planning on only wearing button up for the first few weeks? I have plenty of overly large shirts that should slip on easily.

Anything else that was silly post surgery that made you scratch your head and think, I should have thought of that? Or that would have been nice?

I have had to tell myself that little saying over and over the past few days. It gives me comfort that I have to be the one to endure this hardship, because I am strong. What do you all whisper to yourself to keep yourself going?

I had my follow up yesterday and had a very LONG and serious talk with my cardiologist. He placed me in front of the computer and he went over the images of my Echo and compared it to my Echo from 6 months ago. We also went over my MRA. In the end, he told me that he is only 50% of this decision, but his recommendation is to refer on to the cardiac surgeon. He told me that I could keep trying to run from this, but it isn't ever going to get better. We can continue on with coming in every few months and repeating the same test until I start having symptoms of heart failure, or we can go ahead and have the procedure as elective. He is recommending the elective while I am healthy and without comorbidities. We went over the risks associated, but ultimately it is his recommendation for the surgery eval for AVR and aneurysm. So, I have an appointment next week.

I am very interested in the tissue valve, because I do not want to be on Coumadin. I am interested in the mechanical valve, because I never want to have another surgery again. My doc's are pro mechanical and he assured me that Coumadin will be obsolete, but it is going to be a few years out. I asked if I could trial one of the other medications and he didn't like that idea.

So, I have done some research and know what I have found, but those patient's that went with the tissue valve, how did you make that decision?

Thank you for this site and everyone here that lets me know that I am not alone.

My Puppies!!!! They have really helped with my nerves over the past few months.

I had follow up testing this week and see cardiologist Monday. I knew about the BAV and aneurysm, however I just found out I have a bovine arch. Anybody else have this? And, why can’t I win the lottery instead of rare cardiac anomalies?

Hello everyone. I have BAV and an aortic aneurysm to be repaired in a couple of months. I also have suffered with bad migraines since I was a very small child. I recently set in on a cardiac symposium and found out that migraines can be directly related to heart valve regurgitation. Even better, I understood that a significant number of people no longer have migraines after having their valve replaced. My question is- how many people here suffer with migraines, and then also, can anyone say if their migraines improved after valve repair? I have classic migraines and average around 15 per month. I get the aura for about 45 minutes and then a debilitating headache w/ nausea and vomiting after the aura.

I've seen a few post about OHS cost and insurance nightmare's. I had previously looked into this and thought I understood what my worst case scenario would like, but as I read a few posts on here I realized- I really had no idea. I am employed and I do have insurance. I carry my children and am on a family plan. I was looking at my out of pocket expenses and deductibles and noticed that even with all the testing for my heart, thyroid, and ovaries (it's a long story getting me here) with each area having their own MRI, MRA, Echo, Ultra Sound and/or biopsy my deductible was still $0 and everything going toward out of pocket expenses. I finally decided to call the insurance company and had a lady explain things to me not once, not twice, and embarrassingly enough after the third time I finally started to understand a little about what to expect and what my worst case scenario would look like. And she did tell me, that with that type of surgery I would be looking at the worst case scenario and would reach my deductible and out of pocket expenses. Yikes! My worst case scenario will be $9,000 for me alone. I kind of freaked out at $9000 and looked into the hospital's financial website and found payment plans that could stretch that $9000 out over 60 months. I'm not sure if I would qualify for that, but it does make me feel better to be able to make payments over a lengthy amount of time. I did try and get a number on how much this surgery would cost, and she said that there was no way that she could possibly even estimate such a complicated procedure. I also discussed maybe trying to delay the surgery until the next plan year and getting the better covering insurance at that time. She then gave me some very great advise. It is their hope not to have to raise insurance premiums, but that seems to be the trend each year. If I wait, I have to start over working toward that out of pocket again and then it will likely be more expensive with less coverage. That was really good information in helping make this incredibly hard decision to have an elective, not elective surgery. I had been using insurance as an excuse to wait. I really can't do that now. So, what is healthcare prices looking like for everyone else? Did your hospital work with you to set everything up on a payment plan?

Had my older 2 children screened today for Congenital Heart Defects. Hope to have the results back sooner than later!

In memory of those that fought, served, and protected in any walk of life- military, police, fire and EMS. Warm thoughts for families that had to carry on. Well wishes for those that work in a field that do not get holidays or weekends off. Thank you for those that make the choice to continue to pursue those areas and God Bless to all.

Has anyone been advised to screen direct relatives for the congenital BAV defect? I am in the process of getting my 2 older children tested and have made the suggestion to my parents and my brother. Has anyone else had their direct relatives screened? If so, what were the findings?

I thought I had posted this yesterday, but I'm not seeing anywhere that I did. So sorry if I duplicated posts. I spoke with the Open Heart Nurse Liaison yesterday. I wanted to find out more about how my facility performs the combined BAV and aneurysm repair. He totally blew my mind. He asked why I felt like I had to wait 2+ years for the BAV repair? I explained that I was told that timing was very important so that the aneurysm and BAV could replaced at the same time. He then suggested that I should likely proceed on with surgery now without fixing the aneurysm. He explained that the aneurysm was very small at 4.3cm and that may never need any additional attention if the BAV is replaced. I was relieved not to have the combined surgeries. Does anybody have any insight on this?