My journey - pre, post and during my cardio rehab...

[LTRING]

Hello to all. I have never been a participant on an internet forum before...but after finding and reading this forum, I decided it was time to take the plunge!

A little about me:
58 years old professional. Desk job during the day, but active otherwise. Traveler. Adventurer.
I consider myself to be fairly fit - I took a 35 mile trek in the Andes in 2015 and recently returned from gorilla trekking in Uganda.

My bicuspid aortic valve was first discovered in my mid 40's when my heart murmur was detected for the first time. "Watch and wait" for the last 12 years. Now, the calcification of the valve (I'm at .8 cm2 surface area) and aneurysms (4.5-4.7) at both the root and the ascending aorta require corrective surgery.
I am going to have the Bentall procedure...replacing the valve and the affected aorta.

I have never had surgery before, and since my mom died during 'elective' surgery to correct an abdominal aneurysm, this whole ordeal has me scared.
But I know it needs to be done...so life goes on.

I plan to document this adventure here...in this thread...in the hopes that others after me might gain some insight.

After it was determined that surgery was necessary, I found myself struggling with the tissue vs. mechanical dilemma. After research and discussion with a family member who is a cardiologist, I've decided on tissue...cow tissue, to be exact. Managing daily doses of warfarin was not something I was too keen on. And while I realize I may have to do this once (or twice) again, based on the functional life of my bovine valve, I am banking on the future...that when my bovine valve needs replacing, they can do so with a much less invasive procedure other than OHS. So fingers crossed as to the future of valve replacement surgery!

I had an angiogram done last week to look at my coronary arteries. Two of them have 40% obstruction...the rest are wide open and clear. This is not enough obstruction to require bypass surgery, so those will simply be watched over the coming years and, I suppose, stented in the future if the obstruction continues.

Last week, about three weeks before surgery day, I had a contrast CT scan so my surgeon could get a detailed picture of 'what's going on inside'.

My surgery is scheduled for 2/6/17...
my pre-surgical consult with my surgeon and his PA is on 2/1/17.

Anyway, that's the situation in a nutshell.

I will continue to post to this thread...and add my own experiences, thoughts, opinions...as I get to...through...and after my surgery.

 

[pellicle]

Hi and welcome
I think posting and following up back to the same thread as pato of your journey is an excellent idea.

Thanks for posting

 

[Paleowoman]

Hi Larry - welcome to the forum !

I was 60 when I had my bicuspid aortic valve replaced. The murmur had first been heard when I was 25 but not really followed much until I was in my early 50's. I was very fit, even the day before surgery doing a long walk and weights, and I never had any symptoms at all. I chose a tissue valve due to not wanting warfarin and not wanting a ticking noise (I have super duper hearing which can be a nuisance in some situations). I chose tissue, with the approval of both cardiologist and cardiac surgeon, knowing I'd need surgery again at some point down the line, though I'm not counting on a less invasive procedure next time as my valve is too small for valve in valve TAVR, but I'm sure that surgical techniques improve always as time goes by. I was given a CE Magna Ease valve which is bovine pericardial tissue (cow - moo !). All the best for your surgery date and for a speedy recovery !

 

[epstns]

Hi, Larry!

Your history is similar to mine. I was unaware of any heart issues until I was in my early 50's. At that time, during a physical to try to figure out why my exercise tolerance was decreasing, a doc asked me "How long have you had this murmur?" Went from there to a cardio and an echo, where I was told that I had moderate to severe aortic stenosis, potentially the result of a possibly bicuspid valve. We watched and waited for years, until finally at age 63 I decided I was tired of being tired. I, too, went for the bovine pericardial valve - not because I have any illusions about TAVI being 100% mainstream by the time I need another valve, but because the third generation valves were (are) expected to last longer than the 15 or so years expected of the prior generation valves.

I, too, was very active. I lifted weights; I ran, then slowed down to jogging as my valve progressed (surgery when it hit about 0.8 cm2) - right up to the week before surgery. From the moment after surgery onward, I became the poster boy for hitting all the speed bumps in recovery. I won't regale you with the whole tale now, as it is ancient history. Regardless of what I hit then, I am still here living the dream. I'm older now, so I have slowed down, but I am still in the gym 5 days a week. I lift weights and do floor exercises in the mornings before work. Then I go to my office job for 10 hours or so, then the gym for cardio exercise. (Now on an elliptical - knees refuse to cooperate.) And although I'm 69 years old now, I don't plan to slow down any time soon.

Hang in there. It sounds like you have a plan - a good one that will work well for you. Just be prepared to accept anything life tosses your way on the road to recovery. Do keep us posted. Many of us chronicled our surgeries and recoveries, but few are recent. When new members join to ask questions, it will be great to have recent experiences to share with them. Techniques change. Things get better. You can help us to share current knowledge with other new members.

 

[jwinter]

Welcome to this forum and look forward to your documents along the way.

I had a porcine valve put in 2012 and just got an On-X this past November.

 

[neil]

hi and welcome, I have a porky pig and still honking after 9 yrs

 

[epstns]

hi and welcome, I have a porky pig and still honking after 9 yrs

Yeah - Those piggies are always the loud ones. . .

MOO!

 

[honeybunny]

Welcome to the forum. You will find a great deal of support here. Keep us posted.

 

[LTRING]

Have spent the past week doing research...reading...and talking to folks who've had OHS...
Thought I'd share what I've heard/learned for those waiting for their surgery day.

First off, the book, "Coping with Heart Surgery and Bypassing Depression" by Cohan/Pimm/Jude is excellent. Cheap to buy on Amazon, and a book that patients should read twice...and family members should read, too. Can't say enough about the information this book has to offer!

In talking with three folks who've had OHS...the following snippets of insights were most memorable to me:

1. Before they put you under, remind yourself..."when I wake up, there will be a tube in my throat". One person I talked to said this was the ONE thing she wished her doctor had warned her about...because when she woke up in the ICU, she panicked because she was intubated. I thought that nugget was an interesting one.
2. Be prepared for an "weird" sensation of instability in your chest after surgery...during the healing process of your sternum. One male patient I talked to said that was the one thing he wasn't prepared for...the sensation of instability/shifting in his sternum while his chest healed. He said it was just a very odd, disturbing feeling...so he told me to be mentally prepared for it.
3. Get off the opioids/pain meds as quickly as possible. One person I talked with got addicted. Not because of the pain he was experiencing post-surgery, but because the opioids just made him feel so good...so invincible, I think, was the word he used. It was a long, hard process to beat the addiction...and in hindsight, he'd wished he'd actively weaned himself off the opioids early on, controlling the pain with less detrimental medications. Taking a page from one of our forum member's posts, I'm gonna try like hell to control my pain post-discharge with over the counter meds...and/or non-opioid prescriptions. I know how important is is to "...stay ahead of the pain...", so I won't let it get away from me...
but I do plan to be proactive in my weaning off the opioids.

Those were the three take-aways from this week's research and discussions.
I will certainly report back in this thread post-surgery regarding these insights...
but for now, I just store them in my memory bank for future use.

With my surgery set for 2/6/17, I must admit I am starting to feel very anxious...which is a normal emotion.
It dawned on me just yesterday that this is the riskiest thing I've ever undertaken in my lifetime (in terms of statistical probabilities)...
but I can only take solace in the fact that my doctor and his support team is well-versed in this procedure...
and God...and my deceased mom, dad and sister...are all looking out for me!

With that, I close today's post.

 

[pellicle]

Hi

2. Be prepared for an "weird" sensation of instability in your chest after surgery...during the healing process of your sternum. One male patient I talked to said that was the one thing he wasn't prepared for...the sensation of instability/shifting in his sternum while his chest healed. He said it was just a very odd, disturbing feeling...so he told me to be mentally prepared for it.

well I've never heard of that outside of it being "a bad thing" which is called a mobile sternum. It is not as I understand normal, and is something a surgeon is worried to find.

So if you feel it report it because its not ordinary at all

 

[Paleowoman]

First off, the book, "Coping with Heart Surgery and Bypassing Depression" by Cohan/Pimm/Jude is excellent. Cheap to buy on Amazon, and a book that patients should read twice...and family members should read, too. Can't say enough about the information this book has to offer!

I bought this book two years befoe I had surgery as my cardiologist forecast it would be roughly two years till my surgery date. I cannot priase that book enough, both for the help, advice and suggestions for me, the patient, and for the help, advice and suggestions for my DH.

Re your other insights below - do bear in mind that everyone is different:

1. Before they put you under, remind yourself..."when I wake up, there will be a tube in my throat". One person I talked to said this was the ONE thing she wished her doctor had warned her about...because when she woke up in the ICU, she panicked because she was intubated. I thought that nugget was an interesting one.

I was very, very worried about this as I hate the feeling of gagging/choking. The night before surgery the ICU nurse came to see and told me what to do when the tube was taken out which really freaked me. In the event I was totally unaware of being intubated, or rather extubated. I vaguely remember it being terribly dark and someone talking loudly/firmly to me - I suppose I had my eyes shut tight and someone was telling me what to do ? But regardless, my first proper memory is waking up in ICU and feeling great. No tube, nothing.

Prior to surgery I asked my DH to take a photo of me when I was in ICU and intubated as I wanted to know what my body went through when I was unconcious. The ICU nurse let DH take the photo which I'm pleased with as it has helped me appreciate what happened, at least in ICU - for me it's awful not knowing and can actually lead to more PTSD than we might all get to a degree after this kind of invasive surgery.

2. Be prepared for an "weird" sensation of instability in your chest after surgery...during the healing process of your sternum.

For a couple of weeks or more after surgery you will occasionally get weird popping sensations as the ligaments and things settle after all that pulling apart in surgery - that's quite normal and I was told about that. But your sternum is fixed very securely by wires. A week after my AVR I fell over a box and landed on my sternum - excruciatingly painful - but no harm was done. The other thing to bear in mind is to have a firm cushion or rolled up towel to hand at all times to hold against your chest firmly in case you sneeze or cough as that is pretty shocking for your sternum.

3. Get off the opioids/pain meds as quickly as possible. One person I talked with got addicted. Not because of the pain he was experiencing post-surgery, but because the opioids just made him feel so good...so invincible, I think, was the word he used. It was a long, hard process to beat the addiction

I'd suggest making sure you are on the correct pain meds. I was probably on morphine when I was in ICU which meant I had little pain, could do the specific breathing exercises that they get you to do right away that you are awake. I could eat and drink fine too when in ICU. As soon as I was moved to high dependency - after being in ICU just under 24 hours - I was switched to tramadol and dihydrocodeine - these did not work for me. When I told the nursing staff they just gave me more of those. The result was that I was in constant bad pain and I got side effects, eg I could not do the breathing exercises and got pleural efffusions, I could not eat or drink more than a couple glasses of milk a day with the result that I lost 4 kilos (9 pounds) in a week. I was already underweight prior to surgery so this took me to very underweight and my muscles were catabolised. My gut also stopped working prpperly - constipation is not the word. I also started getting hallucinations (tiny red insects crawling on wall and my skin, and smoke coming from my computer). I took myself off the tramadol and dihydrocodeine as soon as I was discharged. GP put me on oramorph but it was too late due to the fact that my gut had effectively stopped working. I therefore had no pain meds as I am unable to take NASIDs like ibuprofen due to history of duodenal ulcer which also excludes aspirin. Paracetamol does zero for even the mildest of pain for me. I discovered subsequently that a person needs certain liver enzymes to be able to process opioides, like tramadol, dihydrocoeine, co-codamol, to turn them into morphine (what a roundablout way when you can take morphine directly) and that for about 10% or more people those pain meds don't work. The hospital I was at should have made sure I was on the correct pain meds and that is the job of any hospital - if you are in serious pain there is no sense in trying to endure it as you won't be able to do the breathing exercises and walking etc and other things which help you recover well. But maybe you will recover quickly with or without the help of pain meds - everyone is different !

 

[LTRING]

I am posting my experience in a journal...on a complimentary sister site...
feel free to join me.
heartvalvesurgery dot com
forward slash journals
forward slash user
forward slash larryring
Thanks for all the words of wisdom and support!