Sommer's Journal

Prayers for the past 7 months of easy breathing, a calm heart, and sound mind have become less frequent. I am feeling so much better than even last month. It is AMAZING. I am even starting to get use to the sound of my ticking heart. I try to predict my INR by how loud the sound is, but I'm wrong more than I am right. Encouragement to my fellow heart warriors that are gearing up for surgery or just out of surgery: things do get better! I spent so much time in the beginning counting the days- thinking that I should be feeling better because it has been 2 weeks, then 4 weeks, 2 months, 4 months etc. It wasn't until recently that I realized that I should have focused on how well I was doing making the days count instead of counting the days. Doing the small things until I could do bigger things... learning to crawl before walking so to speak. I'm not 100%. I am closer than I have ever been, though. The only grief I deal with now is keeping my INR high enough. I am on 10 mg's x's 5 days and 12.5 mg's x's 2 days a week and still continue to run low on my INR. I am a big green eater, and it has been a struggle removing these from my diet. The plan is too get a therapeutic INR and then I can add back greens slowly. Unfortunately, even with a very low Vit. K diet I rarely test between 2-3. The migraines continue to frequent me daily. I am able to control the pain for the most part with Tylenol, but I have about 3 a month that hit hard and are debilitating. Hope everyone is doing well with their recovery!

I have decided to pick up journaling on here and maybe connect with a few people that are sharing similar experiences. I have a learned and observed a few things along the way that could be most useful to anyone gearing up or going through recovery. Let me start with that I am a very literal person and take everything as it is being said to me. Sometimes I am asked by my husband what the color is in the sky in my world, because my reality tends to be way off! Like with OHS. What I heard about OHS vs. what was really meant... 1. YOU WILL FEEL LIKE A TOTALLY DIFFERENT PERSON. - Does not mean right out of the shoot. Not even on day 2, 2 weeks, or even 12 weeks. What I can say is that each and every week I felt stronger than the week before. 2. OHS IS NOT THAT BAD AS FAR AS PAIN GOES. - Does not mean that it doesn't come with pain. It is painful, your chest is cut open. And, as the OHS RN explained to me prior to surgery, the younger you are the more painful it is. Yet, I still went into surgery thinking that I would need something to pass my time after surgery with the few days that I would be spending in the hospital. My sky was seriously a lovely lavender on the days I thought this. That wise Open Heart Nurse also told me that as time goes by, you will forget about how painful it was. I'm 14 weeks out, and this is true. I have to say that for me, I didn't receive Morphine or even a hydrocodone until the following morning of my surgery. My stomach took a really long time to wake up, and so anything that made it down came immediately back up. And, I declined the morphine for being afraid of being made sick. I had IV Tylenol and a strong NSAID. Even with just those medications, about 12 hours later I was ready to sit up in bed and call my husband and tell him that I was okay. He had visited at every visiting hour, but he didn't see me in my glory. I was up and walking before 24 hours of the surgery. That is what people need to hold on too. I also need to add, that I was awake at about an hour and half post surgery and extubated around the 2nd hour. I should have just slept, but I was telling myself to wake up and breath. It would have been ok to sleep a little longer. ;) 3. THE HARDEST PART IS THE WAIT FOR SURGERY. - This one is difficult for me. The PTSD that I have from the months of worrying about surgery has stuck with me. I am so happy that this surgery is behind me, but I also wonder what if I had waited just a while longer. Recovery is really difficult and emotional. There are so many questions about what is normal and not normal. And, really the best advise comes from people that have actually had the surgery. There are text book answers that the doctors have read about, but then there is the intimate details that they can't possibly know unless having went through the process. Like, what it actually feels like on the inside to go through this life changing experience. To be continued....Time for cardiac rehab. My most favorite part of recovery.

Too cute not to share. A friend suggested that I reach out to her friend that recently had OHS with a mechanical valve placed. The fellow heart warrior and myself hit it off and have been a great support texting back and forth. Yesterday, we got to meet up for the first time at Cardiac Rehab. After our workout we walked out together and were in a quiet area. I heard a "tic" but it wasn't the way my tic sounds. It was her tic. We must have looked hilarious to everyone passing by with us putting our ears on each others chest to listen to our valves! Funny that I can tell the difference in the clicks to decipher which was mine and hers. Hers is the mitral valve and mine the aortic.

Here I am, back to work! Got so much in the rearview mirror and really happy for that. Everyday and every week I feel myself getting stronger. All the agonizing over the past year has left me somewhat depleted and even sad. As the problems that I had crept up slowly and my body was able to compensate (well until it couldn't) I didn't realize I was entering a crisis. My husband new, he saw that effects. For me, I became use to it. The new problems that I am experiencing, those came on quick and I am taking notice. My first hope was that I would be cured or at least suffer from fewer migraines. This hasn't been the case. My migraines have increased by 500%, I'm not mathematical and I'm not saying that is a true fact, but I have migraines daily now and sometimes multiple migraines. They are easily triggered now with a bright flash of light. To make it worse, I had to stop my preventive because I was having serious side effects from it. Now, I am on Coumadin and can't take a NSAID. I HEART Nsaid's. They would really help alleviate my pain prior to surgery. Then, my heart beats so hard sometimes that I can feel it in my throat and neck. The sensation leaves me feeling like I have something stuck in my throat. It is comparable to when I had a cyst on my thyroid. It doesn't hurt, but is very uncomfortable. The good about this, is that I'm starting to have fewer days with that sensation and more better days. I just wonder what is normal. I also suffer with being Air Hungry. I have a hard time getting my physicians to listen to this one because on pulse oximetry I am at 97-100%. The last I was told was to meditate and keep doing my breathing exercises. For someone that works in healthcare, this is the worst thing to hear. Once you are labeled that it is "just anxiety related" then that tends to stick and the doctors don't look for other reasons. The best way that I can explain it is- I get short of air and that air hunger (the need to take incredibly large deep breaths and constant yawning) then causes a little bit of anxiety. I do have to admit, that this symptom is also improving. I have good days and they are starting to outnumber the bad ones. The biggest thing, and it is completely measurably is that I have Sinus Tachycardia almost every morning upon standing up. Sometimes metoprolol controls the rate, but is definitely on the side of more bad days than good with this one. It is captured at cardiac rehab with me being able to do any exercise as hard as I want as long as I am seated. When I stand up to exercise I cannot push myself very hard at all without going out of my target zone and being told to slow down by the nurse. After cardiac rehab, my heart rate will continue to beat fast- typically around 130's standing and 110's seated for the rest of the day. I have learned to titrate my metoprolol on these days to get my rate back down. When it comes down, I feel so much better. I haven't seen my cardiologist since around the 3 week mark of being discharged from OHS. I see him in 2 weeks. I have talked with my surgeon and he is scratching his head and says this isn't something that he has seen before. He said this is a cardiology question. We have talked in passing with my cardiologist, and he says that he really isn't sure why I have this now. I foresee being referred to an EP cardiologist at my follow up visit. I really don't want to do this. I don't want to undergo an EP study. I really want to give things time to rest and heal. I'm very curious if anyone else has experienced the sinus tachycardia upon standing as described. We have talked with several cardiologist and their best thoughts are that my heart was just so deconditioned that it is going to take dedicated cardiac rehab working out in the target zone to get my heart back in shape. One cardiologist said it was the classic definitions of POTS. I just want to know when it will get better. I'm back to work and feeling so tired by lunch time and go home most days with heart racing.

I’ve not been as active on here. I’ve been busy with rehab and weekly INR checks. Everything is progressing nicely except I am still short of air. I yawn all the time trying to get a deep enough breath. Chest X-ray was fine. Echo was fine. Oxygen saturation is fine. I am always short of air. Have any of you experienced this?

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?

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.

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.

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.

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?

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?