1st post - 6 days post op! Intro and questions :)

[mikestorm]

Hello everyone. I found this forum back in the (very short) pre-surgery haze and didn't obtain my credentials till a few days after surgery. Today I feel well enough to post.

38 YO male diagnosed with BAV at birth. Was fairly good at keeping up with a cardiologist every 1-2 years, until around six years ago, when I decided that (very early 30s) I was going to live forever. My cardiologist at the time was particularly enamored with stress tests (I had many cardiologists as I've aged/moved) so (my words) trying to coax a heart attack out of me on a treadmill seemed counter-intuitive to the overall plan of longevity. Freed from the nuisance of facing up to my reality, I went on to carpe diem with abandon.

Fast forward six years later, and I'm now married with a newborn. I felt I owed it to my son to stick around for as long as I can, so promised my wife/son/mother/self I'd finally go back to see a cardiologist. Bear in mind up to this point I was still fully asymptomatic. Met with him on the 13th of December and thanks to my proclivity for frugality (read: I'm cheap) I asked for the echo before the year was out as my health insurance deductibles were all maxed out due to my son's birth. Had the echo on the 20th of December, and at approximately 5:45 PM that evening received a phone call that changed everything. My valve was still in fairly good condition (he confirmed when he listened to my heart) but I had profound abdominal aortic aneurysm (5.7-5.9 cm). "Alarming" was a word he used more than once, and said that surgery in the next 30 days was strongly recommended. Till surgery, although my blood pressure was good, I was placed on a beta blocker and told to take it easy.

The first week after hearing the news was the worst, as I had to now deal with anxiety attacks, which had the very unfortunate side effect of causing my heart to race (talk about a self fulfilling prophecy) but I found this site, and reading many posts, was comforted to learn so many others are going through what I am going through.

Additionally, I live just outside Boston where two of the top ten hospitals in the country exists to handle this sort of procedure, which was also a comfort. Specifically, I was referred to Brigham and Women's Hospital. My surgery happened on the 9th, with an On-X aortic valve plus aortic graft on the docket. Surgery (for the most part) I'm told was routine. Given my age and desire not to go through this again in any capacity, the mechanical valve seemed like the right choice for me, even with all the 'strings' attached to that decision. Could have been discharged as early as the 13th, but my temp spiked to 101.1 which caused me to be held for an extra day. Discharged yesterday and today will be meeting my visiting nurse for the first time.

Here are my questions:

1) It would seem I am a very barrel-chested individual. This could explain my asymptomatic nature given such a pronounced aneurism. However, due to the same, a night nurse divulged to me that they had a hell of a time buttoning me back up. They apparently snapped three titanium wires on my sternum. Moreover, I feel a very faint click in my chest when I reach a certain way. Unfortunately the click happens despite my strict adherence to the weight restriction, so I’m being extra careful in this regard. My question is, is this click normal at first?


2) When will the chest pain subside and I start feeling more like myself? Every day is an improvement, and right now I’m at 65% or so. In fact, only getting in and out of a horizontal position (in and out of bed) causes me to be in any material discomfort. Just wondering when this too won’t seem like such an ordeal.

3) I was adequately warned about hearing the valve tick by my surgeon. Does it really get better? I hope so. I heard it for the first time on day 3-4 and since then it's always there. I feel like Captain Hook being constantly reminded of his own mortality whenever he hears Tick Tock the croc. Just disconcerting is all.

4) Anything they don't tell you at the hospital I could be doing to expedite my convalescence? I gently nudged myself to eat in the hospital despite my very much not wanting to, and my appetite seems to already be on its return. I gently urged myself to walk as much as possible in the hospital as well and seemed to have been rewarded with some extra stamina. Lastly, while not depriving myself of sleep, I'm trying to gently nudge my circadian rhythm to something more conventional (vs sleep whenever over a 24 hour period like the first three days post op) and this seems to be producing positive results as well in the stamina department. Anything else I could be doing if I'm up to it?

I think that's it for now. Thanks in advance for any replies, and just want to reiterate how thankful I am for finding this site.

Mike

 

[drewg]

our stories are very similar. cheers to that. haha

90 days post op now

1. i never had a clicking from moving around so cant comment on that.

2. moving around and all still gives me a little discomfort, but since surgery it does get better everyday.

3. every time someone asks this i laugh. (maybe because Ive gone crazy from the ticking) it does not go away, at least not within 90 days for me. haha

4. i still have trouble sleeping some days, but i think that is more work related. i went back to work 2 weeks post-op (few hours a day for the first week i returned) i believe this helped me the most as i am not near family or have anyone at home, cabin fever is real. getting back into "normal life" helped a lot but id suggest don't jump in to fast as it can become overwhelming.

background on me. bav found when born. im 28 now. did not have a check up the past 6-7 years (decided i was going to live forever like yourself). car accident last july, ct found 6.0 cm aneurysm. oct 16th was the surgery. onx valve and graft put in.

 

[AZ Don]

Welcome to the other side.

1. Not sure if it's related to your click, but I felt (more than heard) something like a click in my chest from time to time. I imagined the sternum shifting slightly and was told not to do the type of movements that caused it. I was a little concerned when it continued up to 4-5 weeks post-op, but then it stopped and hasn't happened since.
2. It just gets better continually. I'm 8 months post-op and I still feel a little twinge every now and again, but I would think you would feel pretty close to normal by 1 month.
3. NA
4. Walk, but take it easy, at least for the first month.

 

[mikestorm]

3. every time someone asks this i laugh. (maybe because Ive gone crazy from the ticking) it does not go away, at least not within 90 days for me. haha

I suspected this. It's not the end of the world, just right now with the aches pains and other discomfort 6 days post-op it's like adding insult to injury. I'm sure eventually I'll internally make piece with this new aspect of myself.

background on me. bav found when born. im 28 now. did not have a check up the past 6-7 years (decided i was going to live forever like yourself). car accident last july, ct found 6.0 cm aneurysm. oct 16th was the surgery. onx valve and graft put in.

Wow. I've never heard of such an almost literal hand of fate intervention. Simply amazing.

Not sure if it's related to your click, but I felt (more than heard) something like a click in my chest from time to time. I imagined the sternum shifting slightly and was told not to do the type of movements that caused it. I was a little concerned when it continued up to 4-5 weeks post-op, but then it stopped and hasn't happened since.

This is it exactly. It's more of a feel than anything else, and doesn't hurt in the slightest. Glad to know it did eventually stop after 4-5 weeks. My new baseline before I start getting very nervous.

 

[Jkm7]

Welcome, Mikestorm. Happy you found us but sorry for the reason.

From your comments, it sounds like you are doing very well post op. You have lots of healing to do and it is not a straight line right to the goal of being fully recovered. They likely told you at Brigham you'll have good days and some days a little less so. That is usually the way it goes for us.

I had two OHS at Mass General and for me, both times, walking was the single best thing I did for myself. Yes, avoiding stress, observing weight lifting restrictions, eating healthy and sleeping well are very important but the walking daily (sometimes several times a day) made the biggest difference for getting my stamina back.

I found it important to get out of bed at reasonable time each morning, shower and dress for the day. If I needed a nap, I took one but tried to not sleep too much as it kept me from sleeping at night if I slept much during the day. I never looked at myself as 'sick' post op but rather that I had healing to do.

I have tissue valve so cannot help re: the clicking but many here say in time they stop noticing it.

Keep up the good work of getting well. Before you know, you'll be back to your usual activities.

 

[The Thief]

I had my OHS on Nov 25, 2013. On-x with an ascending aortic aneurysm repair. I have a thin frame. I am 5ft 10in, normally 155 lbs.

1. I was also asymptomatic pre surgery, so you being barrel chested, and me not being barrel chested doesnt necessarily mean anything. They did not report any problems putting my sternum back together, but I did experience clicking/popping for several weeks after surgery. There was no pain associated with that. The noises have gone away, and my sternum feels strong.

2. Chest pain for me went away at a regular rate. I am at week 7 and I feel zero pain. I lift light weights without any pain.

3. Being reminded of your own mortality is an important part of being human! I hear the clicking too. My friends can hear it across the room. My girlfriend can hear it quite loud sometimes . I'm getting used to it.

4. I forced down whey protein shakes when my appetite was sub-par. I actually continued to drink them daily, and still do. I am still underweight, so i figure I still need the protein to rebuild muscle. During the first 3 weeks, I took short naps after walks. I set an alarm so I didnt sleep too long during these naps. It took me 2 weeks to get my sleep cycle down, mostly because of upper back pain. COntinue those walks, and walk more each day, without harming yourself.

 

[big_L]

I'm maybe 16 weeks out and the noise is non-existent now. Reading your post made me think about it for the first time in months.

 

[mikestorm]

I'm maybe 16 weeks out and the noise is non-existent now. Reading your post made me think about it for the first time in months.

That's encouraging. I guess it really is specific to the person, and only time will tell.

FYI regarding question #1: For the time being I have limited myself to moving one arm at a time whenever possible. That is, any particular arm doesn't begin to move until the other is at rest by my side. The click feeling triggered most often when both arms were doing something simultaneously, so this has greatly diminished the frequency of my feeling the sternum click.

In general, the pain is still very, very slowly getting better. Things that hurt like the Dickens a few days ago hurt like the dickens today (note the progression into lowercase territory).


A few new questions/concerns:

1) Fingertips of left hand are numb. All the time. The main reason for this would be ibuprofen, but my pain isn't such that I've been taking ibuprofen. Wondering if this is common?

2) Stamina doesn't seem to be improving. Going up or down steps requires me to stop and rest for a bit. I can't go more than 50 yards without resting either. Could this be due to the lopressor I'm on, keeping my hear rate artificially low?

 

[Paleowoman]

Mike - I had my surgery around the same time as you. Tissue valve. I get a clunking noise occasionally from the sternal region - others on the ward I was in had that too - I think the explanation is that it's the sternal bones or ligaments slightly shifting after all that manipulation during surgery. It can sound a bit alarming I know.

Stairs are exhausting me. We only have one loo upstairs and my gut very upset so need to visit the loo often - sleeping downstairs on sofa - Red Cross lent us a commode which is wonderful for when I have really had enough of doing stairs. You can only climb them so many times a day or the exhaustion backfires.

 

[Jason]

Mike,

Welcome to the forum and glad to 'meet' you! I am about your age and had a similar history with my BAV leading to an aneurysm that forced my surgery. You should now have your deductible all paid off for this year as well, I am guessing! Was your aneurysm in the abdomen as you wrote, or the ascending aorta? Mine was in the ascending section, which is more 'normal' I think with the restriction at the AV. I can help answer some of your questions, at least as they relate to my personal situation:

1. During my two week check up I asked the surgeon if it was normal for my sternum to click when I breathe. He placed his palm flat on my sternum and asked me to breathe in deeply, and during that breath my sternum clicked under his hand. He explained that the sternum wasn't seated perfectly and that over time it would settle in and heal over. He told me not to do the activities that seem to be contributing to the clicking, to which my wife pointed out it was BREATHING. He laughed at himself and said I should continue to do that, but avoid anything else that seems to cause it... I am happy to report that my sternum fully healed just as he said it would.

2. I can't really help you here. I never had noticeable chest pain, aside from some small stinging zaps that were explained to me to be the nerves coming back together. I had to have help from my wife to get in and out of bed, but that was more to mobility than pain.

3. The valve ticking was something that was driving me crazy for a good two months, if I remember correctly. About the time I went back to work I stopped noticing it. I don't know if this was due to the wearing in of the valve and reduced swelling of the angry tissues or simply due to having other things to occupy my mind, I don't know. I can tell you that I was sitting in a boy scouts meeting with my kids (quite a loud forum) and was concerned that I COULDN"T hear my heart! Funny how things change over time. I am happy to tell you that now I do not notice it unless I consciously think about it.

4. Try and push for physical therapy as soon as the doc's team will let you. I went through the observed and monitored therapy and this was the best thing I could have done for myself. I felt fragile after the surgery, and they helped me to push myself to do what my new components would allow. This helped me to determine what I could do on my off-days, and gave me the confidence to do it. There were also educational sessions on diet, lifestyle, etc. It was a great program. Up to the point that I could do this, I was walking as much as my body would allow around the neighborhood. They warned me to stay inside if it was 40 degrees or lower, but thankfully it was above that for much of the time.

I look forward to hearing more of your recovery. Remember, your heart is better than ever before now, as you don't have the restriction at the highest pressure point in the system and your weakened aortic wall has been replaced!

 

[dornole]

Mike,
They warned me to stay inside if it was 40 degrees or lower, but thankfully it was above that for much of the time.

Jason, is this a common restriction, temperature exposure? I see you had your surgery in Fargo. Living in Minneapolis, I'm thinking this might be a factor in scheduling surgery IF circumstances allow. A lot of months where 40 degrees is a distant dream and I would hate to be trapped inside.

 

[traveler]

Jason, is this a common restriction, temperature exposure? I see you had your surgery in Fargo. Living in Minneapolis, I'm thinking this might be a factor in scheduling surgery IF circumstances allow. A lot of months where 40 degrees is a distant dream and I would hate to be trapped inside.

I was told to stay inside if temperatures were below 40F and to avoid becoming chilled. I had my surgery in Feb and just put up with the restriction.

 

[clay_from_nj]

Regarding staying in if the temperature is under 40, I had my surgery at the end of September and was given no such restriction. Of course, here on the Colorado front range it gets below 40 most nights and above 40 most days, and sandals-shorts-and-coat is a common everyday outfit.

 

[Jason]

I don't know if it is a common restriction, but my hospital/rehab goes by it. They explained that below that you are forcing your respiratory system to do a lot of work to heat the air on its way in. I don't know if all docs follow this, but it is worth a discussion with your rehab/physio section before you go under the knife.