To my fellow 3/31's Karhleen, Susan, Justin and Debbie ( I love that we have a cool sounding group name ), may today be the first day of getting our life back! And may you and your familes get thru the day with the best possible outcomes.
It has been quite the ride so far. It's like that monster roller coaster ride- and right now we are at that point of going up the climb for the first big drop! You know it's coming but don't know really what to expect. All the emotions are at the forefront- anxiousness, nervousness, neausousness , excitement to say the least are all fighting for the front row seat right now.. Last Thursday the 26th was my last full day of work, but by the end of the day it never really dawned on me why I would be off for the majority of the summer. The realization came the next day as we travelled to Boston for a full day at Brigham and Womens Hospital. The first Appointment was to meet our new surgeon and see if we would be moving forward. My original one had to leave for a medical leave of abscense just a few weeks ago. Certainly a 180 in terms of approach and style, but we liked him. He had his way of making us feel comfortable and that we would be ok. We had to leave and start all of our pre-op tests- meeting with the nurse practioner to get a physical and going over the surgery pre and post op. Moving on to getting lab work done including a fresh ekg and chest x-Ray. We also had time to get pre-admitted, get a tour of the ICU and recovery areas and get our proxy form all squared away before the big heart cath to round out the day. Overall the day was good, however a long day and a trial run for the big surgery day.
We spent the weekend trying to get ourselves ready and the only true accomplishments were getting a great post surgery recliner from our aunts house to ours and getting together with family and friends on each night. For support. Saturday night my wonderful sister in law Patty, whom will be covering journal duties in my abscense, had a cozy get together at her home. It was awesome since it was heart themed, straight from the plates and dishes to the foods all being in the shapes of hearts! Sunday night was our family get together for a bite, which we also did Monday evening but who's counting! A nice few days with friends and family leading up to today is highly recommended! Monday was rounded out with enjoying breakfast with my best man from our wedding Paul, where he presented me with a painting his young beautiful daughter Charlotte created for me to have in my room. Love how she said it was made for me and how I was going away to get my heart fixed. That's worth many munsons candy coming from aunt Debbie and uncle Jim!
But today is the day, the clock will soon stop on 1:30 p and I hope I'll be ready to go! That sense of calm has yet to envelop me, so yeah I am pretty nervous right now. People continually ask me how it feels to go thru the open heart surgery process and my reply- generally pretty good until the day I go in and they crack my chest open! But I like to thank everyone who has been a comfort and a part of my support over the past year of getting to this day. The past couple of weeks I cannot express how kind and wonderful all my family and friends have been and how their words and actions will get us thru today and recovery!
My love to you all and to my fellow 3/31's- Today is our day, let's make the most of it and look forward to chatting with you all during recovery!
Part of my support team that gathered last evening for a heart themed evening. Missing a few honorary members that could not attend due to illness or other engagements....
freak out day
Journal posted on March 26, 2015
So i am 5 days away from my procedure and today is my "freak out" day. Part of it is today is my last day of work before all the festivities. Then tomorrow is a 8am meeting with my new surgeon in boston aftrr my previous one had to go on a medical leave of absence. So thinking of leaving central conn a lil early to be sure to try and miss all that traffic. I felt totally comfortable with my previous surgeon and i have great recommendations on my new one along with knowing his resume as an excellent surgeon. We just hope for that instant connection and comfort. Right after is all my pre-ops- labs, blood work, ekg, x-rays etc....then following that is my heart cath...quite the trial run for Tues. Certainly will need to get my fill of food before midnight for my all day fast ha ha ha.
The weekend is final house prep and getting things ready for our pet sitter. As well as getting packed and travel plans set. Nice fun gathering sat night with close friends to wish me off in style. And a nice quiet Sunday with family for a meal. Monday we set off for the hotel and get ready for tuesday.
Folks are constantly telling me not to worry and i am going to be just fine. That is all good if it is from you all That have been thru it already. but some people are making me feel i am making it to be a bigger deal than it is....perhaps if it was their body it would be a different story...
Anyway, today the anxiety, stress or as my wife would say," edginess" is at a all time high....how did you all handle the final week leading into surgery?
Well my surgery is only 12 days away and I am just really beginning to think about it. We have had a welcomed distraction for the past 6 to 8 weeks of planning for a wedding. That's right we replaced the stress of future OHS surgery with the stress of preparing for a wedding. So this past Friday the 13th in the white mountains of New Hampshire, Deb and I were married. A small caravan of 11 of us left on Thursday morning for the 4 hour drive up north, but not after the best surprise of my life. My sister in law Patty, flew my 2 daughters up from Arkansas to be a part of the wedding and make it very special to deb and I. The best sister in law anyone could have! The ceremony was fun yet memorable and was truly a great distraction for the other half of our full month.
But now, with just days ahead, the surgery has really taken a lot of my thoughts....last Monday we got our will in place along with advanced directives and now this week is getting the final paperwork prepped for my short term disability and FMLA. Not long ago we were thinking in months and perhaps weeks, now it's down to days, lil surreal. Next Thursday will be my last day of work, which many of my co-workers don't know yet and for why. Friday the 27th will be meeting new surgeon and all the pre-op work, then on to theweekend of final prepariotions for home and travel. Don't know how each day will change my thinking but time waits for no one so onward and forward right?
Deb and I got married this past Friday March 13th in the White Mountains of New Hampshire. We wanted to be married before my surgery on March 31st
Back on track....
Journal posted on March 10, 2015
March indeed has proven to be quite the month. I am 21 days from my scheduled surgery, but only 3 days from getting married! I think subconsciously, we decided to plan this wedding and all that stress to take the place of constantly thinking of the surgery and all that entails. Though there is only 9 of us heading up to the White Mountains for our nuptials in a nice small cozy affair, it still feels like planning a huge big thing. All relative since your still shopping for dresses, rings, flowers, the meal etc.... Still had issues such as documents and checks that haven't arrived till last night, the jeweler messed up on deb's wedding band 3 times and still not what we ordered. They are taking it back and starting all over after the wedding, so no perfect ring she envisioned for our day and pictures! Still working on making pet sitting arrangements while we are gone as well as our travel plans for the caravan up north. So still a lot of moving parts but taking our minds partly off surgery for now...
The big thing for the surgery was a couple of weeks ago when my cardiologist called me and let me know the surgeon we had researched and felt comfortable enough to do this, had to take a medical leave of absence. Felt like a ton of bricks hit us. We didn't know what to think or what would happen next. Our cardiologist got a hold of his brother in law that works up at Brighams to find the next best recommendation that we can look into. The consensus between him, their staff, some of you heart family here, friends and family was that Dr. Shekar will be my new surgeon. Well for now....my original surgery date was March 31st and many thanks to the staff at Brigham, we can still keep that date with Dr Shekar and all the plans we have developed with work and family. we meet dr Shekar on March 27th for a consult and if all goes well and we are comfortable, pre-op immediately to follow that am. If we don't feel good after consult, then it will be a reset and start over with a new search. We of course would revisit Dr adams in NYC and thankful to our close friend Tim, one of my family support staff and a ICU nurse, he developed a new list of surgeons somewhat local to interview if need be. We are beginning to feel how close this is getting ha ha ha.
Had my last tune up visit with my cardiologist yesterday and went over everything from our current surgeon decisions, to valve choice, to pre-op work to after care, I think we are getting closer to being ready! If it wasn't enough, we also saw our lawyer yesterday and did our will and advanced directives, talk about feeling mortal! The next few weeks will be fun, so let's get this show on the road!
So my cardiologist himself calls me late this past Friday afternoon and informs me that Brighams has been in contact with him. In my mind I am thinking they probably want me to change plans and have my heart cath done there as part of my pre op work up and not done locally here as I was planning. Nope. What actually happened was that I learned my surgeon has to go on a medical leave of absence and not sure he will still be in line to perform my procedure. A month away and looks I will have to take another consultation and possibly make a surgeon change. Ughhh....and just when I was getting comfortable with it all. One name they gave me so far is Dr.Shekar also at Brigham and Womens. Has anyone here had their procedure done by him or others at Brighams that can lend some insights?
33 days and counting.....it was not that long ago that I found my surgeon on Jan 15th on a visit to Brigham and Womens. as you all know, finding the one your comfortable with to do your procedure is both anxiety filled but in a sense, exciting. Our first impression of the facility was that it would not be difficult to get to for family and friends who traveled up to Boston- off the highway and down a couple of miles and take a right, nice. Second thing was the valet parking-right in front of the main entrance and across the street from the Shapiro center. Somewhat reasonable rates for the short/long term and especially for us since we found out we will be able to leave our car there for the time we are admitted.
So my fiancé Deb and I, arrived about 15 minutes before our consultant we go to check in and I realize I left my recent cd's in the car ofmy last Echo and recent TEE. Deb goes to check me in while I run back to the valet staion to see if the car had been moved. Too late, it was on its way to be parked and I became frantic. However, they were on it and got it back down within 10 min. When I got back up in the waiting room, deb had most of my paperwork completed and we were escorted into our room within 5 min. Vitals were taken and i would say not more than a min that Dr Byrne and his PA, Sarah came in and were the most gracious people. Very warm and welcoming, thanking us for taking the time to come up and see them to consider Brighams. We started to have good feelings. He took our recent images and showed us what we had,and complimented the local hospital for doing a great job with the TEE and getting good pics. In a rather calm yet humorous tone he said, " wow, got some pretty good regurgitation there." He took a considerable amount of time with us, answering all our questions and explains how he would approach things. His desire is to approach it as a repair and only replace if necessary, and if so with our wishes would be a bovine replacement. We asked all of our questions on procedures and he was pretty open on all of them but ultimately it's our call since it is our bodies. We asked the one, " if it were you or a family member, what's your choice?" Pretty interesting how he replied " if it were me and someone was working on probably the most important organ in my body, give them the access they need to work, open me up, what's a little sternum if it is going to ultimately take care of the problem to give you a long and lasting life." Now he did mention there is advantages and disadvantages to everything and choices are made depending on the condition or severity that you are in. The meeting was winding down and told Dr Byrne we were thinking of consulting with Dr. David Adams at Mt Sinai. incredible how if you looked at all the stuff Dr. Adams puts out on his website or listen to him on here thru webinars, and you take a meeting with Dr Byrne, they are very similar. Come to find out, they are very good friends! Studied together, had worked together, know each other's famalies well and even indicated his golfing handicap ha ha ha. He said you cannot go wrong with him and he obviously talked him up like they were joined at the hip. Hearing that , we knew they were of the same mind and approached things the same way. It was a done deal for us,we went ahead to start setting things up. That ease started to come knowing we made the choice and on to the next steps. March 31st am surgery with pre-op being done on March 20th.....everything moves along!
So if it wasn't enough that having open heart surgery was on the table, deb and I decided to get married ahead of the surgery. On our 10 year anniversary of being together we will be wed in the White Mountains of New Hampshire on March 13th. Try planning a surgery and a wedding while working at the same time! Let's just say March is going to be a very interesting month!
I would like to say my condolences again for Dr Davidson who tragically lost his life the following Tuesday from this meeting. I hope his family and friends are dealing with their loss as best they can....
Today I finally have my first surgical consult. Originally set for last week, however a emergency arose for the surgeon and he had to postpone. The drawbacks were : 1. We were already driving up to Boston and 2. It just added to the anxiety of not getting the next set of information in this process.
For me, I am anxious to hear what the surgeons think and what their recommendations are. Let's pop the cd's of my latest Echo and TEE up on the screen and have them walk me thru what I am seeing like a sports commentator using a telestrater. To hear in detail what the surgery will be like and their thoughts on the recovery.
I have my list of questions in regards to his credentials and what he foresees as risks in the procedures he recommends, but what else did everyone ask during their meetings? How was everyone else's consultation like and what are we in for In a meeting such as that? Granted I have had surgeries before for such things like a hernia. A meeting like that is Nothing like one for open heart surgery!
Living in New England, I am right in the middle of two great cities Boston and New York, which both have renowned surgeons and hospitals. Our first consult is at Brigham and Womens with Dr Byrne. And our second will be with Dr Adams at Mt Sinai in NYC. Two great choices which will ultimately come down to comfort level .....we shall see
With the new year begins my journey. Next week I have my first surgical consult at Brigham and Womens in Boston and I get my first glimpse of what's ahead as well as recommendations. We also were able to get a consult with Dr. Adams at Mt Sinai in New York, however not until the beginning of March. I find it ironic that being a Boston sports fan, that my surgical choices will come down to Boston or New York
I was wondering what everyone does for work and how it affects your valve issues, if at all.
I am a driver for UPS and it is without saying our busiest time of year. I naturally get fatigued but the nature of my job has me going all day on top of having time constraints that at times may cause a little stress. I naturally will do handful of stops and take a quick min or two break to catch my breath and let my heart rhythm catch up.
This replacement is coming about a year ahead of what we anticipated and we needed time to get affairs in order. Since we got the OK from my cardiologist, I can wait just a smidge longer to do this and not leave my job in the lurch during he worst time. But it also means we have not been able to meet with surgeons yet, so the peace everyone talks about when knowing their surgeon and surgery date is not here yet for me.
i have my first consultation on Jan 8th in Boston then hopefully soon after one with Dr Adams in New York....
so, how does everyone's job affect their issue?
this past weekend we visited a friend in the hospital who just had a spinal decompression and fusion surgery. It automatically drew me to all of our own serious surgeries that have occurred and will occur. I was checking out everything, asking questions to the nurses and our friend readying myself for the big day. Have to say it Probably gave me more anxiety thinking of what's to come....how does everyone level things down going thru this?
Went in today to confirm the results of my birthday TEE procedure and it garnered the approval of my cardiologist to move forward in ernest to finding the right surgeon....he indicated off the record, to not stay local. I am outside of Hartford and hartford hospital used to be known as a good place to go for heart issues of the like. But it seems that recently the surgeons of choice have left so it is on to either mainly Boston or possibly New York. The names I was recommended so far are Dr john Byrne and Dr. Mike Davidson at Brigham & Women's in Boston and Dr. Adams at Mt Sinai in New York....just wondering if anyone here has had any experiences with any of these doctors, their staff and even hospitals...
So today the shock is beginning to set in that this is really going to happen! due to the nature of my work, the following month will be crazy and hectic so will not be able to interview surgeons until the beginning of the year then develop a plan from there in in....let the anxiety begin ha ha ha
I go into this weekend cautiously anticipating my cardiologists appt on Monday...I've had a couple of echos since last spring that showed moderate to severe leakage of my mitral valve and at that point my doctor wanted to keep monitoring. However, after the last one I kept impressing on him my continually feeling fatigued and worn out after not much effort...it was decided to take a better look and on my birthday recently, I had a TEE ( fun and exciting on my bday I know ). Preliminary findings from the doctor performing it were that it is now at severe leakage and that my anterior and posterior leaflets are damaged...so nervous about my follow up visit seeing that they are recommending we look into the next steps of possible surgery. We thought we had a year plus before getting to this stage...so maybe moving quicker than we thought...