I just had the opportunity to see Mitch in the ICU and he looks good. As he requested I took pictures of him in all his glory, breathing tube and all, and no I won't be posting them. The breathing tube will come out later today and everything is on schedule. I hope to have an update for you all tonight.
I arrived at Mitch's hospital room at 5:30 am to find him still sleeping which was a good thing as he was thinking that he would not get much sleep. The on duty nurse woke him soon after and he was his usual chipper self. At 6:15 he was taken to pre-op accompanied by Mitch's Mom, aunt, Shep, Debbie and me. We all hung out for about an hour as the nurses checked his bracelet twice against his chart to make sure that they had the right patient for right surgery. I guess the nurses got wind of the practical jokes that we have played on each other back in the day. The anesthesiologist then came in to explain what he should expect and the length of the surgery. From the time that he was taken into the operating room (7:30) until he is in recovery should be about 5 hours. There will be no updates from the OR so I won't be posting until then. He is great hands and surrounded by the most caring professional staff one could imagine. He is grateful for everyone's support and thanks you all.
The Dr. Just came into the room to inform Mitch that he has been moved up to the early shift. Mitch will be taken to pre-op at 6:30am. Mitch is in great spirits and has a full stomach courtesy of Elio's. For those who have never been its one of Mitch's favorite restaurants. He has been up walking around and is making friends with the staff. I will be posting throughout the day tomorrow so stay tuned.
Hi everyone, it's me (Mitch). Just heard I have the second slot for surgery, which should be around 11. As you have seen already, I have left the updates to the capable hands of my childhood friend, and best man at my wedding, Larry. I don't think we will be getting any updates during surgery, but Larry will pass along all he knows.
I feel great and am ready. Surrounded by lots of family and friend right now, plus all of you. I feel held. Thank you all for your support.
Good luck to Carmen and Kelly who also go tomorrow.
I just received a txt from Mitch's sister who informed me that the cardiac cath went smoothly and that there were no surprises. Also his mom called to say the same. Mom just saw him and says he is in good spirits.
Sticking with the musical motif I would like to introduce myself to everyone who is following Mitch's blog. My name is Larry and I am honored that Mitch has asked me to update his blog before, during and after his surgery. As you all know by now the surgery is scheduled for Thursday morning but the exact time is yet to be determined. As soon as I find out I will send an update. It is unclear if there will be any status reports during the operation but if there are you can be certain that I will post any and all information passed along to me by the doctors. If anyone has any specific questions plese feel free to contact me at Berman.Larry@gmail.com.
New day, new attitude. BIG shout out to Jeff, as thanks to him, I am now addicted to Jimmy Cliff' 'I can see clearly now.' And a big shout out to Claire who has surgery today. My thoughts are with her.
Today, I am back to my confident self. I really recommend everyone listen to Jimmy Cliff when feeling blue. Plus, go for an 80 minute massage, and stop working. It will change everything!!!
I had dinner with a friend and the conversation veered toward one of his family members that developed stomach cancer, finally the frequent saying from many here "we are lucky to be able to get fixed" really resonated. Yes, we are the lucky ones.
I am looking forward to my 'all about me' day today. Plan to work out a lot before I go in tomorrow for cath and overnight leading to up to SURGERY. Yeah, you ain't so tough, bring it!!!! I have no clue about my timing. The hospital will call me at some point today with my schedule for tomorrow. On Weds, I need to call my surgeons office late afternoon, to get my slot. My guy does a few a day, he is a machine! I like that.
I probably will not get to reply to everyone that has written to me lately, as per my norm. But, I do want to thank everyone for their support. It helped me tremendously to get over the hump. A special thanks to those who simply thanked me and let me know my post helped them. Knowing my struggling out loud was a help, really, really, really, helped me. Amazing how that works.
More in the next day or so. Yes, I have made plans for updates to be made when I can't make them.
I debated about the title of this entry..."not so tough after all" and "roller coasters" both seem to fit. Bottom line, I just wanted to share that while I still know 'Yes, I can do this' I am feeling less bold right now. Woke up at 4:30 with massive night sweats. When I am awake I feel tough, but bad dreams last night made it all real. So, I guess they call that denial, huh?
I read Jeff's posts about motivational music and just seeing the listing for 'I believe I can fly' helped me get my edge back, so thank you Jeff! I know I will be fine and even debated about posting. But, I started this journey of my HVJ with a commitment to be honest with myself, to not go into denial and practice living out loud to get through this. So, here I am, not quite so tough today, my last day of work, but still ready to take this on, with the help of my friends. I love you all.
I decided to lay low for a few days as it was feeling like "all heart stuff, all the time." So I stayed away from HVJ. But I am back now and getting very close. I go in on Weds for my cath and surgery Thursday.
I must admit I can't believe how the last 3 weeks have flown by. Even though at times, it felt like I was living in slow motion. Peak training is basically complete now, I only missed 1 workout in my 3 week plan. And that was to be with my daughter when she woke up on her 6th birthday, instead of being on the treadmill. A good trade in my book!
Janis had a recent post about having a mantra. I have been saying all sorts of mantras to myself lately. Her post helped me focus on the one that seems to resonate, usually during a moment of fear or when I am trying to work my stress out at the gym and feel I can't finish something, I would keep saying, almost yellling at myself "COME ONE! You can do this." And her post helped me realize, there was also a soft voice in my head that gently answered "Yes, I can do this."
Well, I am happy to say, lately that soft voice has grown quite strong too. I am in the home stretch now, and I just want to say, out loud "YES, I CAN DO THIS."
OK, tears in my eyes now, so I'll end here, except to say again, to everyone, thank you for all of your support!!!!
I called my surgeon's office to get my CT scan results and they said they would have the PA call me back. Around 6:40PM my phone rang, it was my surgeon. BANG, as soon as I heard it was him calling, I had my answer.
He proceeded to walk me through it all and ended with "your lower ascending aorta is 4.5cm and it needs to be replaced." Now as I waited for the news, in my head, I thought I would need one of those air sickness bags in case I heard I needed a new root. However, oddly, I felt a huge sense of relief. I was relieved to finally know the answer and even more relieved to know everything was getting fixed at once.
In hindsight, my biggest fear was him saying you are at 4.4cm, and then I would feel like I had a ticking time bomb in my chest and have to convince him to replace it now so I could be at peace.. Hence, I guess I am lucky. I hit the trigger and out it goes. Goodbye swollen, enlarged lower ascending aorta, hello dacron graft.
While on the phone with my surgeon, I also told him I have decided to go with a tissue valve. (He uses bovine valves)l Hmmm.....new valve, new lower ascending aorta... I am starting to understand what Steve Austin must have felt like, "....we can rebuild him, we have the technology, we can make him stronger and faster than he was....."
Also, I think this is a great example of how the waiting/perception is far worse than the reality. Good lesson as I count down the days until Feb 2. Things that make you go hmmm.......
I decided to look back over my journal entries just now and realized yesterday marked one month since my first journal entry. I find that astounding!
A month ago I was gripped with fear, completely overwhelmed, and did not know which direction was up and felt very, very alone. Plus, I had very little clue about anything around heart valve surgery. Fast forward a month, today I sit here 10 days away from surgery on Feb 2, and feel ready. I feel very well informed and most of all, I feel an abundance of support around me. Words cannot describe the emotions I feel for all of you that have provided their support to me. As I put in my second post, I feel humbled. Thank you for your help in this journey.
I still have the big day ahead of me and recovery to look forward to. I know I will have more moments of fear and some steps backwards to slow my progress. But, I am ready. Just hope I did not peak too soon and am a mess as we get closer. Ok, off to the gym to erase that thought. Btw, no news yet on my scan results.
I had my CT scan today and completed all my pre-op tests. Even got the huge packet of info welcoming me to hospital and stuff about my surgery from my surgeon's office. I should get results of my scan early next week.
Well, I freaked out at the start of my scan. I thought my surgeon said contrast was not needed, so I was expecting a simple scan. After I got into the room, the tech said "we are just waiting for the nurse to connect your IV for color." I immediately froze (probably went white) and was like WHAT?!?!?! Anyway, I contained it all inside so no problems getting the IV or with the scan.
When she mentioned the IV, I was suddenly struck by the reality and the magnitude of all of this. Then, I was like a little baby about the IV prick and felt it really hurt! Then I started to wonder how I would deal with the pain and all the tubes, needles, etc. in ICU after surgery. I quickly realized all I was doing was making myself nuts, so I tried to calm down and get through the scan, which I did.
After the scan, I found myself thinking I was about to throwing up or start crying. I did neither. I went for a walk in the sunny, crisp (noisy) air of NYC and calmed down. I realized lots more moments like this will come. Lots of little surprises, maybe even some big ones, but hopefully not. I then went to get my pre-op tests. Easy stuff, EKG and blood tests, plus some paperwork for the hospital. However, I still can't help feeling like a pin cushion and knowing this is nothing compared to how I will feel after surgery. So, this journey, and surgery in particular, seem much more real today. But I also know that is part of the process of getting ready. So, while I was so hoping not to get this stuff done so early, now I am really glad I did.
So, in the "careful what you wish for" category I just got scheduled for my CT scan and all pre-op labs tomorrow (for my Feb 2 surgery). I guess I called my surgeon's office so much, they thought they were doing me a favor by going early in the 2 week before surgery window. I probably should have told them, I am just type A and want to have a date, but make that date as late as possible.
I am glad to be getting the scan and an answer early next week about if I also need my aoritic root replaced. But, I can't help feeling nervous about getting this info. The rational part of me hears my surgeon telling me if the root needs to be replaced it is no big deal. A sentiment echoed by many here, but still, it feels like this is a big deal to me.
Good news is I have been listening to my body and it has told me to "go for it" so my peak training continues this week. Ran at 5:30AM today and have my trainer tonight. Thursday is my big workout day. So, now I have plenty of stress to workout tonight. At least I have that going for me.
I am feeling good! This was a hard, but good week for me. I got a lot done for my surgery prep (bought jammies, robe, slippers, called hospital for some answers, etc.), had plenty of "Holy Sh*&" moments, but above it all I got back on my workout horse.
When I heard I needed surgery, understandably, I fell off that horse. I lost my motivation to work out, decreased my frequency and lacked much of my hallmark intensity. Please understand that working out is very important to me, so slacking off was huge and was not helping my head much.
Last Sunday I decided I would get back to it by ramping up both the intensity and frequency of working out for the next 3 weeks before my surgery. As of today, I can say "I did it," and I feel like I am back to the old me. IT FEELS GREAT! And, my head is in a good place about surgery. Sure, I will continue to have my doubts and fears, but it feels like they are less frequent and I can deal with them better.
BTW, as is often the case with my condition, I am asymptomatic. My cardiologist has always told me, then and now, there is nothing I can do to help or hurt my condition (well, except lifting real heavy weights. which he says is real bad. So, I do avoid that, I mean I am dumb, but not suicidal). That said, a friend of mine who went through this suggested I don't work out too hard right now. His words resonated with me, so I have dropped my intensity a tad vs. what I used to do. I would get my heart rate up VERY high, not doing that now.
Also, I am still waiting to schedule my CT scan to figure out if I need to replace my aortic root. Approval from my insurance company is the hold up. But no big deal, I talked with my surgeon's office about doing it the week before my surgery (Feb 2) so I still have some time.
I hope to keep it up with my working out this week. I really feel like I am training for the race OF my life. or is it the race FOR my life? However, I am pretty sore right now after a hard work out today. So, for the coming week, I am going to make sure I listen a little better to my body and maybe take an extra day off. I mean when I am in recovery, I believe I will need to listen to my body and not my mind that will want me to push myself. Given that, it seems a good idea to practice that now. Hey, maybe I am not that dumb after all....
I am trying not to get too consumed by all of this, so I tried staying away from this site in general, but it is hard. The truth is when I try to stay away, I "visit" here for a little while, but end up getting completely drawn into all of it, then get lost for hours, then feel all consumed again. I guess I need to realize how all consuming this really is and perhaps try little doses of dealing with this stuff.
For a few days, I felt invincible and ready to take on anything life can throw at me. I was ready for surgery and even embraced it. As another valver whom I met here, and have been speaking to, so aptly put it, I had genuine excitement about all of this. In hindsight, I think it was actually relief after having met the surgeons and having all my fears allayed. They really do, do this all the time and I really will be alright!!! Phew!!
Now I am a little more grounded. I still am doing well overall. However, I find myself with sudden moments of reality. Like I was on the treadmill this am and suddenly had tears in my eyes. I don't know what triggered it, but I am prone to these moments lately. There goes that tough guy, New Yorker image I was trying to project. So, yes, the waiting is hard. I am busy at work, but finding it a little hard to focus and trying to be organized in my prep for Feb 2.
I also found out my surgeon wants the CT scan in advance, not day before surgery, as he told me last week. So, I am in the process of scheduling that. I started to make myself crazy about this change, as in, it will be great if they tell me my aorta is fine, or OMG what happens if they tell me it needs to be replaced. Wouldn't I rather find that news out as late as posible, and.... And..... Oops, there I go again. Guess what, it will be whatever it will be and repeat after me,"these guys really do, do this all the time and I really will be alright. Phew!"
I got the call today. My surgery with Dr. Len Girardi is scheduled for February 2 at the New York Presbyterian Hospital/Weill Cornell Medical Center (I figured I should give this place the respect it deserves so I used the full name).
I will be admitted on Feb 1 so I can have a CT scan to determine the size of my aortic root and if it needs to be replaced too. I have only had echo's done and I am told they are somewhat inaccurate when it comes to measuring the size of the aortic root. Mine seems to be at 4.2cm, which I am told is close to my limit of 4.5cm. So, my surgeon wants a better look to know in advance what he is doing in surgery. Hey, I'm ok with that! I will also have a cardiac cath on Feb 1 as part of my surgeon's SOP.
FYI for other valvers, once I am in the OR on Feb 2 and fully sedated, they will perform a TEE before surgery.
I am still feeling really good about all of this. For now.....
As they say on TV, “Man these guys are good…” I am very fortunate to live in New York and have access to many, truly, world class surgeons. I had the opportunity to meet with two of them this week. Both are outstanding, highly skilled individuals that have literally done thousands of these procedures. The good news is they both were in complete agreement about the clinical aspects of my situation, ex. I need surgery now, what needs to be done, what else might be going on with me (more on that in a moment), how to do it, facts, figures, considerations, etc. So, I at the end of the day, I was completely comfortable with both of them. I feel very lucky to find myself in this position.
I was lucky enough to have the opportunity to consider other “less important” factors, like which side of town do I prefer the hospital to be on (10 minutes from home or 15 minutes from home), etc. For me, the deciding factor came down to my cardiologist. He only has privileges at one of the two hospitals I was considering. Therefore, if I went to the other hospital, I would have a new cardiologist for that time period. My cardiologist even explained to me that, if all goes well, his involvement would be “superfluous, at best.” However, I trust my cardiologist implicitly. So in the end, I have chosen to go with the surgeon he initially recommended and have my cardiologist involved every step of the way.
I am hugely relieved to have chosen a surgeon (at New York Presbyterian Cornell Medical Center – not NYP Columbia Medical Center). I am now awaiting a call back with a date; ideally, the week of January 30th (sorry Linda!) Plus, meeting with the surgeons has made me 10,000 times more comfortable about the surgery and recovery. WOW, what a relief.
I did also learn my aortic root is now in the equation. There are concerns that it has enlarged to a point that it might need to be replaced. Apparently, this is pretty common for people who, like me, have a bicuspid aortic valve. Did not see that one coming, ughh! But, both surgeons seemed to take this in stride. Their calm, cool “I will fix whatever necessary when I get in there” and “only downside is might add 20 minutes to your surgery, absolutely no other issues involved” attitudes were calming. As I said, “Man these guys are good…”
A CT scan will determine if my aortic root needs replacing. I welcome thoughts and comments from everyone. Especially if you think I am missing something.
Happy New Year everyone! For me 2012 will surely be a big year as I expect to have my aortic valve replaced, hopefully in the next month or so. After a great week of vacation with my daughters, I am now back to the reality of all of this. It was a nice break as I tried not to think too much about this, but did get caught up in insurance hassles (thanks for the warning in your book Adam) and also kept track of the progress of some new friends here.
This coming week is a big week for me as I start to meet with surgeons here in New York. First I have to go meet my new primary care physician and introduce myself, explain to him who I am, my condition and ideally get the referrals I need for insurance to pay for those world class surgeons I want to meet. Oh, the joy of it all!!!
I feel ready to meet the surgeons. I have done my homework, have my questions, have someone coming with me to my appointments and am really hoping I find 'the right one for me' in these meetings. I hope to have a clear direction this time next week as far as making decisions on my surgeon and hospital, valve choice, surgical path and the big one...a date!!!!!!!!!! I know it may not happen in a week, and will try to be patient, but that is where I am at right now.
On the one hand, it has been three weeks and i just want to get on with all of this. On the other hand, I can't help but get overwhelmed and kind of prefer to stick my head in the sand and hope it will all go away. I know that is not going to happen, but as one of my friends so aptly put it "this sucks!"
More to come. Thanks again to everyone for their support.
I have to say, I am truly humbled by the outpouring of support I have received from my family and friends (old and all the new ones who have posted replies). Friday was an emotional roller coaster as I anxiously jumped on my computer everytime I received a notice of a new post to my guest book, got some really good laughs, and struggled to come to terms with all of the realities of this surgery. I took in a movie Friday night, after losing myself for a little bit, at the end I found myself hoping this was all a bad dream. No such luck!
Thank you all so, so much. I am so happy I started this journal and asked for help. I love you all.
And...please keep the answers to my questions coming, I savor everyone.
OK folks, my journey has begun. With this post, I decide to openly ask for help and guidance as I realize I can’t, and shouldn’t, do this all on my own. I am not one who asks for, or accepts, help easily. However, I realize I need to change that fast to get through this. So, after some encouragement from other valvers here, I now start my own journal. “Yeah me” for taking the first step in changing!
10 days ago I learned I need to have my aortic valve replaced. Since then, I have been scared, overwhelmed, had a few “holy s*&t” wake-ups at 4AM, etc. Standard stuff I guess. Today, I am in a pretty good place (ok, I did wake up at 4AM today, but I had my trainer at 5:30, so no big deal, only 45 minutes early....).
I have decided to have 2 surgical consults scheduled first week of Jan with doctors in New York City – Dr. Len Girardi at Weil Cornell and Dr. Allan Stewart at Columbia.
My main question right now is minimally invasive vs. full sternotomy? I know minimally invasive is not for everyone, need to discuss it with your surgeon, etc., etc. I am also clear on the pros of minimally invasive. But I am missing something. If it is an option, why wouldn’t everyone choose minimally invasive since recovery is supposedly so much easier? Sure, my surgeons will tell me, but my appointments are not until January and I am really curious now!
So, I would love thoughts on this:
****What are the pros of the full sternotomy and the cons of minimally invasive?*****
Also, I am considering going mechanical. My cardiologist mentioned if I do this, it would likely be the St. Jude’s valve.
*****To folks who have the St. Jude aortic mechanical valve….really, how noisy is this thing???******
That’s all for now. Thanks in advance to everyone in this community. I have already learned so much, and gotten great comfort from reading your Journals and comments.