Sharon's Heart Valve Journal

One year out and I feel great. My porcine valve is doing exactly what it should be doing and I have no afib. I know at the time of my surgery last year I was scared and now I am thankful. I had major family issues at the end of the year and would not have been much help if I had not had the surgery. So my belief that everything has its time was reaffirmed. For all of you awaiting your surgery try not to worry too much, you really will feel better.

One year out, today:)

I am 3 and 3/4 months out after surgery. I have a lump to the left of my scar. This area hurts sometimes and other times not. it's about the size of a silver dollar. I was supposed to see my cardiologist tomorow but he cancelled on me, again. Now they have me on the calendar for Nov 30. I thought the lump was swelling from the surgery but most of that is gone now. Just wondering if anyone else has had anything like that? I am a little concerned, not sure if I should be looking for a new cardiologist, which freaks me out at this stage of the game. Just like to hear some thoughts from you all.

Home and feeling better. Never completely discovered the cause. Pumped full of many antibiotics. Had more blood drawn than before or after valve surgery. I meet with my cardiologist tomorrow but I don't know that any additional insight will come. I know they are going to push the cholesterol meds again and I really afraid to play that again.

So my cholesterol went through the roof and my blood pressure is having more highs and lows than a typical teenager. Then my cardiologist put me on lipitor and I had a severe muscular pain reaction to it and then I caught some kind of bug an now I find myself back in the hospital. So not happy. I had just gotten back to work and was in my 3rd week of cardiac rehabilitation. The docs at the hospital just aren't sure what is going on so they don't want me out of here. Been here 2 days already and I'm going nuts. Has anybody else had wonky cholesterol and blood pressure this far out.

6 weeks and counting.

Tomorrow I will finish up my first week of cardiac rehabilitation. I think it's as good for my brain as it is my heart. Met a guy that had a heart transplant In February. We are basically at the same place in our recovery. So thankful to be doing well. So thankful to this community for the support and for all the information every step of my journey.

For the most part I am doing well. Having some trouble with low blood pressure. Saw my GP today and he thinks my system is still adjusting to a properly working heart. Still having mood swings but they seem better. I hope everyone who had surgery is doing well. And prayers for those coming up this week,

Sorry for the delay on my post surgery post. I had some computer issues to get worked out. Today I celebrate the one week mark. I can hardly believe it. Now I am going to do my best to describe this journey, as that was really helpful to me. I am going to start with the final prep. First, I cut off my hair. Sooooo happy I did that!!!!! (picture to follow) No tape, sweat or other yucky stuff in it and it’s never in my face. Then came the “magic showers.” That made it imminent and that was scary. Got some sleep the night before, but I had to be there at 5. I think I slept better than my family. I have some meditation/affirmation/touchy feely music that I listened to for the month prior to my surgery to help keep me calm and for the most part it worked. (if interested they are called Health Journeys by Belaruth Naprastak).

Got all checked in for surgery met everyone signed stuff and was IV’d up. 3 to be specific. One arterial line. Then the surgeon (Anthony Rongione) said lets head down the hall. Next thing I remember was waking up hearing my touchy feely music. We brought it with us and my daughter persuaded the CICU nurse to let her put on the headphones. Best thing ever!!! So as I woke up I heard it and knew first, I was alive and second, that the tube was coming out of my throat soon. The music helped keep me calm. Then the tube came out approximately 4 hours after surgery. YAY! Another note please let your loved ones know how you will look when they see you after surgery. I though I had prepped my 20 and 23 year old daughters but there was so much more. Let them know your eyes will be taped shut and that you will have more things hanging off of you and being dripped into you then you can count. Finally, that you will be extremely pale and I had blue lips. A bit terrifying if not prepared.

Then things started coming out. The 3 worst were the central lines in my neck, the chest tube and the pace wire. The last 2 didn’t come out for a couple of days, but so much better out than in. I was moved to the step down in less than 24 hours. They told me that I was an A+ even if I felt like an F.

The step down is about healing and care. The days are long. If you are receiving insulin you will have your fingers pricked regularly, painful but necessary. Your vitals are taken less frequently as time goes on. My first full day in the step down my pressure tanked, found this out as they were having me walk and I just couldn’t, hearing went crazy as well. The next day they had that worked out but I hadn’t done much walking so still had chest tubes and pacer wire in. Surgery was on Tuesday final tubes finally came out on Friday afternoon. Got discharged home mid Saturday.

Things are going ok at home. I am dealing with some emotional issues. I freak out over everything I feel. Am I ok, should I call the nurse. People keep telling me I am ok, but i’m not quite there yet. Home Care RN had her first visit here today and I visit the surgeon on Thursday. Hopefully, this will help.

Sorry for the length, but I wanted to tell you everything before I started to forget. I am so unbelievably grateful for all of the thoughts and especially the prayers.
Prayers to everyone who’s surgery is pending. We are here for you!!!!!

Seeing your name on the list of upcoming surgeries is met with mixed emotions. Glad it's almost over and scared it's almost here. Spending this weekend having a Southern Maryland summer. Boating, hanging with family and eating crabs. Last day of work was yesterday. It was very odd. Lots of hugs, some tears, and even a bit of relief to not have to worry about it for awhile. Prayers to everyone that had surgery last week and those going next week with me. We are all going to do great!

Well yesterday was my last hope for reprieve. Finished all the tests (5 + Hours) and they handed me two bottles of soap for my showers the night before and day of surgery and told me they would see me at 5:00 am on June 2. Made it all feel very real, not like a bad dream that I was going to wake up from. So that being said, I feel kind of peaceful today. I am tackling the things I have decided are important and letting go of what I cannot control (as a total anal retentive control freak this is not an easy thing). I now just want it to be done so I can begin the healing and move on.

Weird thing about yesterday, as they were doing all the tests on me they placed a surgical/hospital bracelet on my arm and told me I had to keep it on until after my surgery when I go home. Everything is linked to it. At first I was a bit freaked out, but now I have decided that my lovely red and white bracelet goes with everything, from hospital gowns to ball gowns. Wore it proudly to the nicest restaurant in town last night and am wearing it to see Heart in concert tonight. How ironic is that:) Hopefully they still rock as hard as they did when we were all much younger!

Sooooooo many things to get done! Both at work and at home. I'm just overwhelmed by it all! Not sure what should be priority, not sure what can wait, just not sure in general. Can someone tell me what that must haves or must be dones are at home. Is it the re-arranging of items so they are reachable or the pre-cooking meals, or the contingency plans if things may go wrong or making sure to spend time with those you love and saying TV dinners will be just fine. I just feel like I'm drowning in it. Everybody wants/needs my time and attention. I just don't know what I should be focussing on. I want to make a checklist but that is yet another task that I just don't seem to have time for. And the sad thing is, work is even worse! Is it too late to change my mind:(

To celebrate the 3 week countdown, I went to the dentist. Had a slightly achy tooth and the surgeon's office said see a dentist just in case. So of course there was a drilling in place of tea this morning. Well, now I can check that off of my list. Every time I think I am getting a lot checked off I realize there are a gazillion more things to do. I have a quite visible position in a continuing Care Retirement Community and last week we let the 500 residents and the 250 staff members know that I would be out for a while. That was a big check off. Quite the out pouring of love from them though, it’s pretty awesome.
One of the residents told me a story that happened to her after her AVR and I have to share. It was right after surgery and she was still intubated and had various other tubes coming out of her. Her son in law was the first in to see her. He noticed a really large mass on her side. He started to panic and hit the nurse call. His wife (her daughter) came into the room at that time. He was apparently quite freaked out and was pointing and babbling to his wife about this large mass. His wife proceeded to burst into hysterical laughter. She looked into his very puzzled eyes and said “That’s her boob “. This made my day! Hope you all are well especially Donald, Jacqueline, Patrick, and Jerry as there surgeries are today.

Our wet dogs:)

Forgot to mention we have a cat too.

One of my co-workers just pointed that out, it really surprised me. So much to get done. My recliner did arrive yesterday. The dogs cock their heads when I use the power button and it moves. Cracks me up. Speaking of dogs, I have 2. A 70 pound Lab mix and a Pomeranian (really my daughter's but currently they both are residing home). They both want to be on or next to me all the time. How have any of you all out there managed your dogs? The small one launches herself in your lap and that scares me as much as the large dog using his nose to flip my arm up and over him to pet him. They obviously will not understand and I am just not sure what to do. At this point we are thinking barricade around the recliner. But the problem with that is then I will have to move whatever to get out. Any words of wisdom would be welcome.

41 days. I was here before. Made it down to 28 days, then I was granted reprieve. I don't think that is going to happen again. At least I have had the extra time to get used to the idea that I need open heart surgery. As people find out they seem to have a need to tell me about everyone they know of that has has heart surgery and their outcomes. The thing that seems to escape everyone is that everyone is different and the surgeries of others, though statistically helpful do not really do anything for how I feel about mine. I thank people for their "helpfulness" but inside I want to tell them to stop. People though well meaning have no idea what I am feeling or going through unless they have been there. I am thankful for this site.
I also want to send Robyn some good thoughts and prayers. I hope she is telling us her story soon!

I have been following many of the folks I that I started my journey many many months ago and they are all on the other side and looking and feeling pretty much back to normal. Back in December 2013, my docs said it wasn’t necessary yet and kept repeating that phrase until yesterday. Seems now is my time. I am hoping I do as well as all the people that I have been following. I see there are many new faces having surgery soon, even today. My thoughts and prayers are with you all. I will be watching your successes as I prep for my own journey.

I had my cardiac cath on December 17. My cardiologist then had a long conversation with my surgeon. I met with my surgeon on the 18 and he confirmed what the cardiologist said to me in the OR surgery is not necessary at this time. Turns out that the echo was off thankfully in my favor. They are thinking that I won't need surgery for at least a year, possibly two. Best Christmas present ever! With my daughter graduating from college and my son getting married in the next 7 months I am unbelievably thankful for this gift. This is why second opinions are important as well as finding quality medical care that you are confident in. I am so incredibly blessed and thankful for all the prayers and love.

One month to go. January 14 is the day. I think I have actually gotten to a place where I just want it over. I have my cardiac cath this Tuesday and meet with my surgeon on Wednesday. My recliner will hopefully be here next weekend, got to break it in so it's comfy. Christmas is providing a wonderful distraction and keeping me from being too self obsessed. I love Christmas!
Today I am greatful to have my family returning to the nest, for the wonderful smell of cookies coming from my kitchen and for my fabulous friends and famiy, I love you all.

Had an appointment with the cardiologist that will be doing the cardiac cath. I liked him a lot and feel good about it. Significantly better than with the old cardiologist. Not a chance in Hades I would let him clip my toenails let alone a do a cardiac cath. The cath is set for Dec 17. I hope I am over this hateful cold before then. One of the unexpected joys in having all the kids home from college is they bring their little viral friends. Don’t want procedures to start sliding. Surgery should be mid Jan. I don’t have an exact date but I should get that in the next couple of days. It times out so that by the time the Olympics are on I should be able to enjoy them. I do love the winter games. I hope everyone out there had a wonderful Thanksgiving even our friend that spent it in the hospital. Today I am thankful that I saw soooo much family last week, that my job lets me work from home when I am sick, that Rachel seems to be heading in the right direction, and this site that I cling to like a life raft on my bad days :)

I was just delivered my short term disability and FMLA paperwork from our HR department. Talk about making it real. Yikes. Discussing getting Doctors and surgeons to evaluate your job and decide when they think you will be able to come back to work etc. is just not something I am loving. Right now the dates aren’t even officially set. That won’t happen until December sometime after my cardiac cath. Another term I wish I didn’t know. Time seems to be speeding by and yet not going fast enough. I want this over and yet I wish I could put it off. I know this is normal but it doesn’t make it fun.
I've been following our friends that have had surgery. I know we are all continuing to pray for our friend in the UK. Everyone else seems to be doing well, and for that I am thankful. Today I am also thankful for the 94 year old gentleman that just serenaded me, the 101 year old woman that stopped by just to say hello and the 93 year old woman that just showed me a picture of her latest great grandchild. In short I am thankful for my job

So happy to have received good news on our friends that have had their surgeries this week. The happy news did all of our hearts good both figuratively and literally. We will all continue to pray for their return to good health and their swift return home.
Well, I finally let my boss know that I would be having AVR in January and that I would be out for an extended period of time. He was very supportive as I knew he would be. I think the hard part of telling him was that it made this whole thing real. It’s not just a family secret anymore.
Also, this week as part of my job I attended a conference on bereavement and grief that was put on by the National Hospice and Palliative Care Organization. It was unbelievably informative but it was really hard to listen to things that are all about death and dying when I am trying to avoid thinking about my own mortality. Many of the presentations were uplifting and they gave me a great deal to think about both in my job and in my new reality here in aortic stenosis world. The final presenter gave me the most to consider and I think her words can be helpful for all life issues ranging from life threatening illness to the housework that you just hate to do. She talked about life giving you “POWS”. Things that knock you down or try to knock you out. She talked about getting power from these things by overcoming or adjusting in some cases to these things positively. Finding the ways to adapt positively. This makes you powerful. Finding small things everywhere and in everything that you are thankful for was something she stressed. Look for positives every chance you get. So at this moment I am thankful that our friends are recovering, I am thankful that my husband has started reading Adam Pick’s book and I am thankful that my daughter called me this morning just to chat about research for an article she is writing and other NORMAL stuff.

I think I have rounded the corner to the acceptance of my situation. I still burst into tears on occasion, which annoys me to no end. Owner of a Lonely Heart by Yes came on the radio. One line is much better than an owner of a broken heart. Burst into tears. How totally ridiculous it made me feel. But I guess that is part of the process. In the week since I found out surgery was a matter of 2 plus months away I have managed to tell my immediate family. Glad that's done. The daunting task of telling my employer is still looming. Hoping to be prepared to do that soon.

I live in a small town where the medicine leaves much to be desired. I contacted Adam Pick to find a 2nd opinion and he referred me to a heart group in Virginia. Met with them yesterday and they think I should have my valve replaced sooner than later. Not quite what I had expected. I'm a little bit of shock at the moment. I feel a little overwhelmed. My local cardiologist basically said that the stenosis had gotten worse but he'd see me in 6 months and check it again. The heart group seems to think that waiting is only going to cause more harm to my heart and that I shouldn't keep putting it off. They also seem to think that when my Aortic valve is replaced that the mitral valve will leak less because the pressure will be less. Has anyone else out there heard these things before? I guess I just want to hear it from someone that has been in my shoes.