John's Journal

So. I have mentioned over all my posts.. depression has been an issue.. I dealt with it before surgery.. but after it has almost been unbearable some days. I know sort of.. that this surgery has saved my life.. sort of... I have lost my real voice as of yet.. which is a big problem for me... I have lots of aches and pains.. and lifting restrictions..etc....all a constant reminder of my defectiveness at least at this point.. as if the voice wasn't enough.. each and every time I try to talk it sounds off ... I know in time the aches and pains will go away.. and maybe if I am really lucky I will get my voice back.... Here is what has me down.. and has had me down even before the surgery.. I am 44.. the bovine valve.. has something like 8-20 yr range.. as long as nothing else goes wrong.. So I am looking at probably 2-3 more replacements?.... The mech valve was more like 30 yrs.. but at 44 that isn't lifetime either.. Depression isn't logical.. or does it make sense.. So yes I know.. 8-20 yrs is a long time from now.. but.... I am so frustrated to have been forced to have this surgery because of the aneursym.. to replace a leaking valve... that could have waited. with a replacement that we know won't last too long.. especially with my active life... And even if the mech valve were more of an option.. my lifestyle would have been at odds with it.. 4x4 ing.. motorcyle riding.. etc... I often wish I had never known.. and rolled the dice.. I love my wife very much.. and my family.. and I did it purely to stick around for them.. but I am really struggling.. with feeling like there is a big clock on the wall with the hands counting down till the next replacement... I honestly don't know how to deal with these feelings..? I am so sad some of the days.. it is all I can do to get out of bed... and go to work.. My wife is trying her best.. but knowing I will need more surgery... even years from know is my problem... The surgery has lots of drawbacks... for sure.. but my single biggest issue before the surgery was the breathing tube... and as it turned out it was the big issue for me.. the chest incision was not a big issue... If that Dr.. had only come back in a few hours when I was awake.. it could have come out.. but he chose to make it a low priority... and as such I am even more petrified of ever having to have a breathing tube again... Like I said.. not logical.. exactly... and I know that.. and depression isn't logical.. or as some people like to quip "just be happy"... believe me if I knew how to just flip the switch I would..... For me the bad days aren't really pain.. etc.. Is is the mental aspect.. Am I alone in this? Does anyone else deal. or did deal with those feelings? Wishing they had just skipped it all and let nature take it's course? Thanks

So..here I sit.. It's Friday.. 1/23/15... Glad another week is over... My energy level gets better each day... but still not nearly 100%.. Last night another family bday celebration.. After working all day.. a late night is a struggle to enjoy and be fun... :( At my desk at work.. thinking.. 2 more ish hours... then the weekend... It's been a long journey.. .voice still sucks.. well.. it comes and goes.. almost sounds normal sometimes.. loudness is still way off.. and apparently it is only the temp injections.. making any of this possible.. :( Worst part is the injections suck to get and only last 3-6 months.. so I don't have much time left before I will need more.. if the cord doesn't start moving.. As of last week.. still paralyzed.. :( My voice was seeming so much better.. it was really hard to have the cam down my throat again.. only to see it still paralyzed.. Trying to suck it up.. but the last 2 days have been some of the worst 2 days of the whole thing.

Wifes bday... Wow... I want to say I married an angel... This is my second marriage.. and I did much better.. the best!! She has been with me for almost every appt.. She stayed in the room with me every night they let her.. She has been awesome.. Crystal has been the only thing that truly got me through this... and she continues to do that... Especially with all that happened I wanted to make sure we celebrated her bday. So worked all day.. got the family all together at one of her favorite restaurants... It was great.. too band my energy drops off so badly at the end of the day.. I made it.. but probably wasn't nearly as much fun as I normally would be at 10pm... :(( So glad we were able to celebrate with her.

Jan 5, 2015.. First day back at work... I drive about an hour each way in traffic on a good day... so make for a decently long day.. Did pretty good.. at work.. stayed most all day.. Noticing that the cough is still here.. :( Never remembered my desk chair so uncomfy... :( and how my temp is on auto pilot.. :) I am always hot.. even in the snow at like 13 degrees.. long sleeve shirt.. jeans.. perfect.. after surgery not so much.. I walk in to work.. hot.. and it is genuinely pretty hot most of the time in the am.. too much heater... By 3 pm.. or earlier.. I am cold.. and it really isn't cold.. :( The hooded sweat jacket comes on.. and normally people walk by and say go home.. as I must look tired.. and cold... so I try to stick it out to the end of the day.. but don't always make it.. :( then 1-2 hrs in traffic home.. Once I am home.. I am pretty tired.. and ready for a quick dinner if at all and bed.. Still not sleeping well.. at all.. again the pain is ok.. but constant.. affecting my sleep for sure..

Wow... just a little over 3 weeks.. has passed and I was afraid I wouldn't wake up.. I went to a family Christmas lunch.. I have to admit I was pretty miserable.. No chairs were comfy.. I had slept terrible.. the night before.. I was feeling really depressed. My voice is till MIA.... I mean I can talk.. but I have to repeat everything... I like to talk.. so it is really hard not being understood.. In a large room with lots of people and noise it is really hard to be heard...... In many ways I just sat there not part of the conversation.. wishing I was home.. bad day for sure.. :( Everyone who visited me had some kind of a cold.. hacking up a lung.. :) On top of having to cough after surgery...I think I have a cold with an awesome cough... at least I am not sneezing much.. as anyone who has had the surgery.. knows.. coughing is bad.. sneezing is worse..

12/22/14.. Monday.. back at USC surgeons office.... I had enough of the sticky tape that holds you chest incision.. so I had peeled it off a few days before.. much better.. feels more human.. This appt.. is to take out the stitch in each of the drainage tubes I had... (6 in the chest 1 in the groin area) Not much of an appt... Still not driving....so my wife has had to take off work and be my driver. Talked to the PA about limitations. especially driving... I was 2 weeks and change out from surgery.. but being helpless was driving me nuts.. We negotiated to wait 4 more days.. which was still earlier than he wanted... What can I say.. I started driving that night.. took my wife out for dinner.. been driving ever since.. In fact the next day I drove to my office and delivered some presents to my co workers.. wished them a happy holiday.. etc...

So now I have been home for 5 days... got a new recliner and couch for my days of working from home. It's Monday 12/15/14... up early when my wife leaves for work 6 am... in my recliner working.. I balanced my laptop on my lap.. and it worked .. but wasn't too comfortable for 8+hrs a day.. I ordered some items to make it more comfy.. a hospital table... a dual monitor arm for my laptop and a spare monitor.. wireless keyboard and mouse.. much better once it all got delivered and assembled. Haven't sleep well at all at night.. The pain has never been horrible, but is constant. Pain seems to come from just about everything.. breathing.. laughing .. coughing.. sneezing.. getting in bed.. getting out.. moving in the chair.. rolling over... you get it? Not horrible.. but ever present.. I am a side sleeper.. so 30-45 min then I have to roll over.. because it hurts.. can't get comfy at all.. sucks... Tried the recliner.. not much better... Depression has been a constant battle.. some good days.. mostly bad

So I did leave the hospital on Wed 12/10/14. I was up early at 6 am like usual.. The last tube was out by 7 am.. and was told to be ready... I was ready.. more than ready.. I ended up sitting there all day till almost 4pm before I got to leave. :( So the next day I saw the ENT... got the cord injections.. waited for my 2hrs... not talking .. eating .. etc... Tried out my new voice.. and almost cried.. no.. wait I did cry... I felt tired... sore.. worn out.. and my voice was worse that it was before.. I was so deflated.. and angry... and depressed .. I can't even explain it. Before surgery.. I had a nice deep . loud voice.. I used to sing and I sang bass. After waking up I sound nothing like my old self.. I was already pretty depressed about all that occurred in the last few weeks.. and now one more thing broken...

So it's Monday... 12/8/14... Up at 6 am for meds.. blood.. breakfast etc.. and move to the couch.. and started working on the laptop... Mon Tue.. and Wed.. all day working.. The only breaks were lunch dinner.meds.. vitals.. etc.. ;) Voice is still bad.. starting to get worried.. ENT Dr. comes in.. convinces me to let her put a cam up my nose and down my throat. I am a huge gagger and was pretty nervous. She said she would stop if I started to gag, but would be gentle. I let her because I was worried about my voice. Unfortunately the reason my voice is funny is my one vocal cord (left one) is paralyzed. Turns out the nerve for the cord wraps around your aorta in your chest and my was damaged. I was told it might come back it might not. It could take 8-9 months.. If not back by then it isn't coming back. The short term solution is for injections in your cord to make it fat so that the one working cord can touch it. I really didn't want those.. but my voice was an issue. She couldn't do it until the next day which meant another night in the hospital. I said no way... I am leaving.. Luckily I could come back the next day to her office.

So..Its Sunday... 12/7/14.. decided the vacation was over.. and time to get back to work. I was tired of the bed and the chair. I was lucky enough to have a big room with a sectional couch and coffee table. So I got up and moved all the tubes etc over to the couch.. Fired up my laptop and started working. I spent Sunday catching up on work email and see what fires needed my attention. The nurses and staff thought it was funny that I was working from the hospital. Feeling good.. throat is still sore and voice sounds funny, but overall doing ok

So tubes are starting to come out... Catheter came out yesterday. They told me I had 6 hrs to pee or I would need it back in.. Talk about pressure.. but I performed.. :) I got 2 chest tubes out.. so now only 4 more chest tubes. Feeling ok.. wanting to go home..

So finally got the breathing tube out... on day 2.5... Got moved to my step down (regular room) got some ice chips.. Man I never knew how good ice can taste.

So I woke up in ICU breathing tube in ... and it was left in for almost 36 more hours.. Totally sucked.. Gagged for most of the 36 hrs.. and wrote notes on a white board. Worst part of the whole thing. Other than the breathing tube I felt decent considering