Shannon's Journal

My two year anniversary today. So thankful to have my surgery behind me. Been busy working to shed the extra weight i have packed around for years with lots of exercise and its slowly working.
INR is stable and i am only testing every 3 to 4 weeks. Very manageable.
Planning on taking a plane trip in November to the canadian BC coast to see family. Bit nervous about that. Does anyone know what to do about the security. Do i ask for a pat down...or what??
Thankful each day for the energy i have. Think of everyone often here.

Coming up on my six month post surgery anniversary. Despite a few hiccups along the way, I am steadily recovering. was back to work on January 1st, finishing up my cardiac rehab next week and my INR has leveled off finally.
Still have twinges of what I think is nerve pain daily especially if i get over tired or over do it. Been having lingering muscular pain in upper left quadrant of my chest. Its hard to remember to not carry things with my left arm. I get rather impatient trying to still take it easy. Anyone else have these struggles??

8 weeks post op
My infection has cleared up and the "hole" I had at the top of the incision is now the shape of a well. I get it packed every second day instead of every day now. Although I have gotten to know my local health centre quite well during this recovery...I am looking forward to all this being done. I look forward to it healing up soon. I can also drive again. Although I an still sore in my upper chest, shoulder areas, it is good to be back on the road with a little independence again. I start my 12 week rehab program and am heading back to work as of January 1st.
Every day I feel a little better and didnt realise how awful I felt before surgery until now. It is nice to have sustained energy every day.

Good luck to all those heading into surgery this week. With the marvels of modern medicine you will all be on the other side of this and healing before you know it.
Cheers to every one.

Reopened Incision.
I m still battling an infection but now it is mostly at the top of my incision. I feel it all across my chest and all across the top of my breasts. I am on my third course of antibiotics and when the surgeon found out, he ordered me in to see him (a 2 1/2 hour drive). when he saw the incision....he reopened it up and packed it. So now i have a lovely gaping hole at the top of my incision...about the size of a walnut...which has to be packed by the home care nurse everyday if not twice a day.
Which once again restricts my movements. Can't move around too much as I dont want it to bleed too much.
It is all a bit disheartening. I have been a bit on the blue side. I am so done with all of the "sick" business. Any I can't get out of my house. We have snow and ice on the ground here.....so no so safe for me to go for a walk on my own. Plus of course I cannot drive so I have a bit of cabin fever. I am a fiercely independent person and can't even clean up myown house as it is too much.

Anyone else have struggle dealing with the desire too do so much but inability to do it.

Sighing...sort of
Ever since surgery ever once in a while I breathe in real quick(like 8 to 10 times per day)....almost like I have been holding my breathe. This comes on sudden and uncontrollably. I find if I am tired it happens more and is usually followed by a yawn. I have tried to control it but cant seem to. I am not holding my breathe at all, and have been practicing my breathing.
Hope this isn't my sub-conscience freaking from all going under....that whole thing still is quite unsettling to me even after I went thru it.

Two Weeks Post Op
I have developed an infection at the bottom of my incision. Was at the dr today and the perscribed antibiotics. Hope that helps me get past this extra pain and out of the non stop sleep mode.

More Pain
After stepping down to just using regular tylenol.....I thought I was getting a handle on the pain....but now I am back to wanting those pain killers every 4 1/2 to 5 hours instead of every 6 hours. Now I am afraid of getting an infection. Guess its back to the doctor for me. Feeling frustrated.

Exercise Schedule Post-Surgery. Was anyone given a guideline to follow for how much walking to do after they get home from hospital. I have looked thru all that was given to me. Cant find any kind of guideline to follow.

Adverse drug Reaction
I came home from hospital on Monday, Oct 3, and upon leaving the hospital they gave me a new(to me) pain killer-tramacet so i took it as prescribed Monday night. Had serious night sweats all night, the shakes, was drowsy,dizzy, headachey, and had migraine auras. But with all that, thought I better stick it out. Took my two pill dose again in the am and the above described symptoms continued. At lunch I took two tylenol, as an alternative. At 8 in the evening, after a conversation with my pharmasist, I took just one pain pill...by 9 all the symptoms were back along with vomitting. Let me tell you after less than a week post op....vomiitting is not on the list of things to do.
Off to emerg for me. Talked to the doctor, discussed the meds. everything else was fine. Decided to stay away from tramacet as it seems I have an intolerance to it. He then gave me some t3s for the night which gave me serious migraine. I made it thru the night and then went for blood work this morning and stopped in to see the home health nurse. She was on my side. Not happy about the pain control for me...so she pulled some strings, and booked me a dr appointment for tomorrow.
To add to the mix of pain med troubles with all the sweats, and taking lasiks...I am super dehydrated. So the dr and I have a few things to discuss.
On the good news side my inr is at 2.5 so i take 2mg tonight and 3 tomorrow with testing again on Friday.

Home....5 days post op, I am home. It was a rough trip but the nurse made sure to have my meds ready pretty much just before we walked out the door. we drove all the way home in just over two hours with me clutching my heart pillow......fortunately we got home as the pain killers were wearing off.....now on to healing.
Healing vibes for those on this side and much patience and calm for those waiting to go for surgery.

Hello all. Happy to report i made it through to the other side. So far got chest tubes, pacing wires, art and crotid lines out. Now just dealing with the severe sternal pain.
Thank you all for the thoughts and prayers.

Wow, I really jumped up the roster here in the upcoming surgeries. Yikes. Spent the day going thru the motions of my Pre-op appointment. Met with my surgeon, anesthesiologist, respiratory therapy, several nurses, did my pre-admitting stuff, had a chest exray and did my blood work. It was all very tiring. We stopped for a snack break then it was time to drive home...a 2.5 hour highway drive. Needless to say I am exhausted.
Unfortunately, my sister and my mother insisted on coming with my husband and I. I spent most of my day being rather embarrassed by their inappropriately timed questions, comments that are were basicly unnecessary, and my mother over sharing with anyone and everyone in the waiting rooms about my childhood and her own guilt that she caused this issue somehow in her pregnancy with me. I was incredibly frustrated thru the day. It was so bad with the first nurse we saw, she pulled me aside after they all left the room, and asked if they will be with me during the surgery stay. She recommended they don't all come as that time is for healing for me. It will be hard for me to recover when i am the strong one and shoring up family who are dealing with their own issues over my surgery.
It all came flooding out when my husband and I finally got home with twenty minutes of ranting and raving. I feel bad for my husband. but he just gave me a big hug, hes got my back.

So anyone else got any tips to share about dealing with this??

Phew one week to go. It is all getting very real now. two days of work left. Then on Friday I have my pre-op appointment, I get to come home and spend the weekend together with my kids then its back to the city on Tuesday night in a hotel and surgery on Wednesday morning.
My sole goal for now is to stay healthy. All around me everyone is coughing, snotty and sick. Hope I dont catch anything.
So far I am keeping calm...just keeping busy and checking things off my list.
Good luck and prayers to all those with surgery this week. I will be thinking of you.

I am two weeks out today....by this time two weeks from now I shall be on the other side ready to recover. Myself, my husband and kids are feeling the stress and riding one heck of an emotional rollercoaster ride. I am doing my best to keep it together unless I find myself alone....then I fall apart.
I am keeping busy working and doing my best to keep a regular routine around here, giving the kids as many opportunities to talk and have as many hugs as they want.
14 days and counting.....

Hello All. This is a question for those who returned to work after OHS. How long were you off work?? Did you do cardiac rehab before going back to work?
Myself and my boss work in a busy HR department for a large construction company. My boss thinks I should be back after 8 weeks. My surgery is on Sept 28 and she is planning on me being back by December 1. I told her it all depends on surgery, recovery and what the surgeon recommends but I am certainly not going to rush anything. I was thinking closer to January 1st.

I am now three weeks out, I can hardly wait to be on the other side of this. By all accounts, I am remaining calm, but friends and family around me are very anxious. I had no idea it would be me that had to calm them down.
Continued prays and good wishes for those that are having surgery this week, and speedy recovery wishes for those on the other side.

Update from me. my surgery was postponed now until September 28, 2016. Very disappointing as I am very ready to be on the other side of this. Mid July i had a severe gall bladder attack that caused pancreatitis and I was hospitalized for week. My surgeon wanted to wait until it was all cleared up. so here we are waiting again. Thinking of all of you who are in for surgery this week.

Phew, what a week. Just got out of hospital. Had an acute pancreatic attack dew to gallbladder/gallstone attack. This came out of no where. I now need to have my gallbladder out as it is full of stones but with AVS so close(AUG 9), the surgeon would not risk it. On Monday I have to contact my Heart Surgeon to see if I can still keep my surgery date or if this will change it. I never thought I would have other organ issues before heart surgery as my doctor did a full check up and blood work a few months ago.
Keeping my fingers crossed I don't have to wait longer for my valve replacement...I am ready to get on with my life and put these health issues behind me.

Careful what you wish for! so after lamenting about waiting, I got my call today from the surgeons office. Pre-op tests on Friday August 5th and Surgery on Tuesday August 9th. Yikes. Now the countdown has started at our house.

Had my contrast CT Scan last Thursday.....that was quite a "rush". No one told me it does that. I thought i peed my pants. Made for a few embarrassing thoughts!!
Still waiting to hear from the surgeons office. I am feeling like such a burdon on everyone around me. Seems like we are all putting our lives on hold and waiting to find out my surgery date. I am ready for this to be done!
I know most of you from the other side say the waiting is the worse part....I am praying that is true cause it is true agony!!

Got a call from my cardiologist today.... finally. I have been accepted by the surgeon and my aortic replacement will be done within the next 8 weeks. After the last six month wait, it all feels like it is all happening very fast. I have a ctscan scheduled for next Thursday to be sure i don't have any blocked arteries. Now i wait or the surgeons office to call with my date. I am ready to be on the other side of this for sure

After two days of appointments, including one very uncomfortable echo, my cardiologist confirmed my valve has gotten narrower and it is time for surgery in August/September. My case will be discussed by the team this week and the cardiologist will then call me with a more firm date.
I did ask her about having a tissue valve over a mechanical. She is recommending the onyx mechanical valve, but will discuss with the team further. I will also have a CT Scan to be sure there are no blocked arteries to be repaired, which she said was unlikely and also meet with the surgeon. Looks like it will be a busy summer for me getting ready.
I am relieved that this is moving forward. Cheers to moving forward.

My appt is finally here. After a long six month wait and a growing list of symptoms. I am finally going back to see the cardiologist and also having a pulmonary stress test and an echo on Thursday/Friday. Last time I was there, in Dec 2015, my Aortic Valve was at .6 ans severely narrowed.
Last night I made mashed potatoes and almost passed out. Ending up with an hour and a half of chest pain from the exertion. It is definitely time for a check up. I will be pushing for a surgery date.

Heart Palpitations - phew today it seems like i have lots of these, and now this evening I am exhausted. Also had some mild chest pain on and off. This whole waiting thing is getting old. Only 28 days until i see the Cardiologist. The countdown is on.

Good luck to all those in surgery this week. Will keep you in my prayers.

question for all those on the other side. when you are on blood thinners, is it possible to have surgery again. How does that work? Do the wean you off ?

Did anyone sew their own heart pillow. I am looking for recommendations on material, firmness, size and washability. My hospital does not provide one.

I have been on this site since this past December and although I don't always post, I visit every day learning all I can. I have Adams book which I have read thoroughly, so I know what I will be facing.
I am doing all I can to be prepared. I see a counsellor, and my doctor regularly, I am gathering my team, talking to my kids and husband, prepping my employer for potential time off, and getting my insurance in order.
But after reading all that Barbara Laurie has been through, reality stood up and smacked me in the face.
Don't get me wrong, I know each person is unique in their situation and although I only know Barbara as a fellow member of this site, I feel connected to her, and have been waiting with baited breath for updates saying she is just fine.
I didn't realize how worried I really was and still am for her....and in turn, for myself until it hit me this past weekend. I cried most of the day on and off whenever I thought about it. It really is a sobering reality to know that it doesn't always go as planned.
I know there are risks and a person has to remain positive despite all the risk. but after some reflection this past week, this is just more learning for me. I really cannot sit and stew about it all. As they say, you gotta live every day to the fullest.
So as I continue on with my days, marching closer to ohs and the other side, and as I send prayers up, everytime I think of Barbara and Dave and the struggles they are in right now, I learn that this is my reality. I cannot dwell on the negative, I have to rise above and look to the future and have hope and faith that all will be ok.

So as my disease progresses and we march forward toward surgery seems like my new symptoms are coming one after another. I have been to my GP and she is concerned about the ongoing manifestation of all the new symptoms and is monitoring me continually.
First it was chest pain, and after having that on and off for awhile, it just became something I live with. I know to take it easy and it goes away eventually. Along with the chest pain has come numbness in my left arm. With some tingling in my feet and right hand sprinkled in for good measure.
Next there is the shortness of breathe. At first I didn't notice it so much, but slowly ever so slowly it creeps up on me when I least expect it. When I take a shower and I am trying to wash my hair, when I do laundry and I have to get up and down the stairs, or just trying to run some errands. At first, I thought, I was holding my breathe. But I stop and make a conscious effort to check myself. Nope, I was not holding my breathe, I simply have shortness of breathe which is forcing me to take things a little slower than before. I take my time in the shower, I stop a few times on my way up the stairs after I put laundry in and only do one errand at a time. I have adapted my life to accommodate it.
Then there is the brain fog. Things get forgotten a little more often then I would like and sometimes things get a bit fuzzy. The worse thing so far was confusion over what season we were in. I was completely worried in the moment that I couldn't remember, but since then I talked myself off that cliff, and am learning to not sweat the small stuff.
Heart Palpitations. Oh yes I have those too. Mostly, when I wake first thing in the morning. But occasionally I get them at random times in the day and evening. I try to take a deep breathe and roll with it. I like to lay in bed and listen to my heart swish at that rapid pace....imaging it just running a spin cycle to catch up from all the regurgitation. Again, I make a mental note of the time, and if I have any other symptoms.
Fatigue, tired, exhausted, done, etc. What ever you call it....it sucks. Being a 45 yr old mother of a nine year old boy and a ten year old boy, means I am supposed to have endless energy, which just isn't possible right now. I have little spurts here and there, and I can push myself but I have learned the hard way, that if I do that, I pay the price. I become overwhelmed and crave rest and it takes a few days of lying low to get back to 'normal' again.
Which brings me to welcome the newest, latest and greatest symptom yet, being lightheaded. It comes on when I least expect it. Very often when I am sitting calmly at my desk at work, or checking out the candy bars at the store(for my kids easter basket), or just making some dinner. My rational side says, it wont last long, and to just be still. So I stop what I am doing, I make a note of the time, I assess what I am doing, if I have any other symptoms, etc.
And so I write it all down, I tell my doctor, but as we review it all, we discuss that all of this is nothing new, but rather symptoms of my heart valve problem that will soon be addressed.
To keep my anxiety at bay, I try to educate myself on what it all means, and I laugh. I read funny auto-correct posts on facebook, I watch funny shows on tv and watch comedians on utube. I keep reading that laughter is the best medicine.

So now I just carry on. Time moves day by day closer to my next Cardiologist Appt in June, where I will have a stress test.....and from there, hopefully a review of all my notes, and I will be scheduled for my turn at surgery and a new lease on life.

Feeling so depressed these days. I have been having lots of symptoms these days. Especially pre-syncope, and brain fog. I am doing my best to take it easy but I feel like this surgery and heart issue is all a big secret that no one wants to talk about. Like the elephant in the room. My spouse doesnt want to hear about it and if I do mention anything that is going on then he gets angry with me. So i dont talk about it much with him. I have been keeping in contact with my GP and I have been seeing a counsellor every few weeks.
I am scheduled to see the cardiologist again in June for a stress test and then the will schedule surgery after that. But knowing there are still so much time to sit and wait....I feel like I am going crazy. I am rattling around in my house unable to do alot and just feeling depressed about the whole thing. I am sure all of this is normal. I just want to get on with it so i can get on the road to recovery.

Hello everyone. I am once again sick at home with bronchitis. I seem to be catching everything that comes around these days. I am pretty sure I am on the mend. Did anyone else have this problem before surgery??

So very frustrated. So over the last two weeks I have had chest pain on and off. On Friday, it seemed to peak. I also had upper back pain, numbness radiating down my left arm, and so i took it easu this weekend doing relaxing things like scrapbooking. So Sunday, i did groceries etc, to get ready for the week and ended up going to bed early with chest pain. I woke at 4:30am with my heart racing, and chest pain, and a burning sensation. So with much trepidation I went to the ER. After all the appropriate tests, they found no other problems other than the critical aortic stenosis. So the GP in the ER told me to take some Tums and that i most likely imagined it all. He told me its unlikely that i have any chest pain associated with aortic stenosis. I must have fainting and shortness of breath. He talked to my cardiologists office, and my cardiologist is away until next week so I need to follow up next week. I am so frustrated with people not taking me seriously.

Having a terrible day today. :(
So I live in Canada and although there are some good things with our health care system, there are other things that are not so great. So the cardiologist I see is at a hospital 2 1/2 hour away from my home. I live in a small community with a little community hospital and one doctors office. It takes me a month to get a doctors appointment. So when I last saw my Cardiologist she told me I would need OHS and that I am to come back in june for a stress test. My appointment showed that I have only a 0.6 aortic valve and severe regurgitation.
So today and all during the past week, I have had chest pain. A steady heavy feeling in my chest with pain. and lots of shortness of breath with any kind of exertion, (having a shower, going up stairs, doing laundry).
Now, they told me to call if I had a problem. Just not sure if this is a problem......I don't know how this stuff presents itself. Its all new to me. I am so scared that something serious is going to happen while I wait for my appointment in june.

ACK. Feeling horrible

ok, so my cardiologist wants me to loose weight but not to exert myself. So i figure this needs to be diet related. Anyone got a healthy food diet plan they have followed that helped them lose weight. I am scheduled to see the dietitian but couldn't get an appointment until the end of March.

Went water walking tonight and now I heavy a heavy feeling in my chest, with some dull aching pain. Rather disappointed that I can not even do that. I quit swimming a few weeks ago cause I had resulting chest pain. I think its time to move to yoga or just walking on the treadmill. So very frustrated.

This may sound like silly question, but here goes. When in hospital do you just wear gown with opening in front. my problem is....i have a rather large chest( bra size j - sorry if too much info) so the idea of being exposed is a little worry some to say the least.

I don't think i am alone with this. But my family and friends think I am making more out of it than what is really going on. Basically they think i am faking it. I am looking to the future. I want to talk about it, to work thru it all. But no one wants to talk about it with me.
How do you deal with family and friends who seem scared to talk about surgery and what all that means.

Ten years ago, I discovered I had Aortic Stenosis, and now as they predicted, I need to have surgery. No surgery date yet, but I have lots of symptoms,including regurgitation, that seem to be increasing. I am not in the sever range. I go back to the specialist in June for a stress test, and schedule surgery from there.
Just wondering if anyone else has done the stress test before surgery and wondering why they do that??