Jim did 3 laps and 3 sets of their practice stairs - some with the PT and some with me!! He has a great appetite -Jim wanted to tell Ernie that he satisfied that very important discharge requirement with enthusiasm and vigor - having dinner now. He hopes everyone is recovering well and wishes those with pending surgeries the very best of outcomes!!
Jim is doing well -they moved him to a regular cardiac unit Thurs night , and he even walked once around the unit today with the help of PT. His appetite is coming back as well, as he is eating more whole foods. The progress is hard to believe in such a short period of time.
I attended a very useful "after care" class given by Dr. Adams' staff today, and they certainly emphasized the benefits of walking , as Joe had mentioned to us.
We are extremely fortunate, as wonderful friends from both Massachusetts and the Nj/Ct/Ny area have visited this week, and this has certainly cheered him up. The staff on this floor has been terrific as well.
He wanted to make sure that I wished those in the hospital and those with pending surgeries all the best, as with Jim , only better days lie ahead for sure! Thank you for all your words of support, as they mean so much to us!!!
Hi all - wonderful news - all the doctors have told us that the surgery could not have gone better - very large valve to deal with, but these doctors and their team are truly miracle workers (and I am sure all your prayers and good thoughts helped:) Jim came down to ICU close to 2 - he responded by moving to the nurse's commands just recently but is still very sedated - they believe he will be more awake in the next several hours!! The staff and doctors in ICU are terrific!
We thank you for all the wonderful support you have all shown - Joe, your visit to the hospital this morning to chat with me and "the girls" was priceless-- will keep you posted!
Good morning all. We will head out in a bit. I'm serene and focused. My shower with the stuff is done and my nose is next. You know the drill. Anna, Lynn and Dan ( and those I am forgetting for this week!) my best thoughts and prayers. You can do this. I'm confident in each of you. You're ready. Boston and New York are fierce rivals as you know. I think however that the tragedies and triumphs of our recent marathons have tied us closer together. I am delighted that New Yorkers will heal and care for this Bostonian pilgrim with the funny accent. Today, I am a guest New Yorker.
I love you all. You all have contributed meaning to my life. My thanks. If I wrote notes to you all I would miss my surgery so I won't. Please support Lise in the next few days. I know you will and I know what it will mean to her. I am not afraid of the surgery. My deepest fear is that she will steal my journal.
Adam, you have been one of God's servants with this journal. (I will buy your book once I heal and I will look back. I confess I knew I would terrify myself with my active mind if I read it beforehand. All right, I am a chicken!) Now off to my most excellent adventure.
Had a wonderful dinner at Candle 79 last night with our NYC friend's Stu (a Yankees fan ) and Betsy. Just returned from pre-admittance tests. It went smoothly. A dear friend is arriving in minutes to be with Lise tomorrow. I am handing over the journal to Lise now. I will post later this week as I recover. I now have a laundry list of things to do. Schedule is 530am arrival and 700am surgery. I want to take a moment to thank you all so very much! We sure have bonded over the last few months. Thanks for everything you have shared. The very best to everyone that goes in this week. I will forget some folks (sorry) but certainly Anna tomorrow and Lynn on Thursday, my very best wishes for wonderful outcomes! You will do fine and be healed. Best to all!
We are now in our suite- the hotel is Marmara Manhattan. The hotel has a deal with Mt. Sinai. For the cost of an average NY room they give you a suite with a living room, dining area and kitchenette. Lise could be here for 11 nights, often with friends, so it is ideal. Nice, nice place. Arrived at noon, checked in and went to Nick's Pizza. Touted as a top 10 pizza place in the US, Nick's delivered. It was superb. They use a coal fired oven, one of the few allowed in NY. Three thumbs up. Walked around, quick nap then a 55 minute run( ok, run and jog) in Central Park around the reservoir. Wonderful. They are preparing the route for the NYC mararthon tomorrow. Love the excitement. Had a great Thai meal tonight. You can see NY is truly a city of neighborhoods. We love the area, it is Yorkville. Now we are mellowing out listening to Pandora. All in all a good day. Best to all recovering. Barb goes home tomorrow!
Heading to NYC. There is a very healthy group of travelers on the train. Lots of marathoners heading
to the NYC marathon. Day is beautiful. All the best to those going in soon and those recovering. Barb, I do not want to see you on TV at the duck boat parade! Looking forward to getting this started.
We are now packing and tying up loose ends. We will travel by train to NYC and intend to travel back to Boston by train the day of discharge.
The plan is to take Amtrak Acela train from NYC to Boston-128 with Red Cap service at Penn Station. The trip will be 6 hours door to door with 3.5 hours on the train. Going 1st class (we never do that) to obtain more space, bigger seats and more assistance. Some one will meet us curbside at the train station in Boston and get us home. I would love some insights from those that traveled longer distances the day of discharge. I have no idea how you feel when they release you. Does this seem doable and do you have any tips? Any thoughts would be extremely helpful. Thanks!
All the best that are heading in to surgery or recovering. I am thinking of you all. Thanks also to all that offered hospital packing tips. We have a mound if items now for my overnight bag thanks to my lovely wife Lise!
Well, the days are flying by. All my efforts are focused on wrapping up client work and preparing for surgery. I am not worried about the surgery or the breathing tube. I am concerned about the recovery and the predicable complications. My brain is leaning away from the anticipated pain. The unknowns - what complications will occur and how do I react to them and how long will the recovery take are my "worry thoughts". Nighttime and middle of the night are peak worry times. During the day my activity consumes my brain with other thoughts.
One next step is making the shopping list and buying the required items online and at the mall. Another next step is to review everything to see what pills to stop taking, who to contact, what preparations need to made for the trip, etc. There will be plenty to do.
Many thanks to all of you who have provided excellent advice. My best to all of our courageous, intrepid travelers on this site. Have a great day!
Hey folks- two weeks from now it will be go time. Nov. 5th is the "healing date" at Mt. Sinai.
Gentlemen, help me out. What should I bring to the hospital to wear for the stay?
Ladies and gentlemen, any thoughts as to stuff I should bring to the hospital?
All thoughts are welcome and appreciated.
(Since August, I have concluded that underpants matter. I still remember Higgy's dad posting about Higgy in the hospital sans boxers. I continue to have occasional nightmares since reading that post.)
Just returned from the Brigham in Boston. Arrived there at 5:40am. Dr. Shah performed a radial cardiac cathertization. It was an interesting and eye opening experience. A great dry run for NYC in three weeks. I will not forget this experience for a while. Dr. Shah is a true professional. He did a wonderful job. Going in I was concerned. My dad had three heart attacks and two triple bypasses - a real tough guy. I was concerned that genetics would catch up with me. I was gratified and surprised with Dr. Shah's comment in the OR " your arteries look fabulous!" I'll take it! I have not heard fabulous associated with my health in a long time! One less thing to concern myself with for NYC. Now I am waiting for the sedation to wear off. So today I am grateful and relieved.
I hope everyone is doing well today. Thinking of you all.
Hey folks. Good morning to you all. It seems hard to believe that what I have been planning for and thinking about is actually going to occur! Still seems like the most life affirming and life extending thing I can do for myself. Your own journeys and my research continues to support the surgery. I have solved the worry part ( or at least much of it!). Just worry about something else! I am in the busiest part of my work year. In the fall I facilitate corporate strategic planning retreats. In the last 3 weeks I have traveled around to do 5 retreats and one other event. It's a blast and a very positive experience for me. Variety, new people to meet, a 100% in the moment focus, etc. Lise, my wife, has been invaluable, traveling with me and being a huge, huge help. I have had my middle of the night moments but they have been few. So I have my formula- go to Italy for 2 weeks, come back and work like mad on stuff I like! October will be the same as I continue all the pre- surgery tasks.
Now I have to get myself to the gym so the "good shape" folks assume I am in isn't past tense. I am finding my exercise energy level isn't where I would like it to be. It is tough pushing myself out the door. Hoping for more energy after November.
I am thinking of each of you that are healing and each of you with upcoming surgeries. All the best!
OK, folks. One month to go before surgery. I have a question for you. What things helped you the most in your recovery? I am starting to think about the post- surgery phase. Any advice is appreciated. Thanks!
Authorization received - Now this is really, really Real!
Journal posted on September 23, 2013
Well, well, well. Looks like Monday is medical mail day. I received authorization for the surgery on November 5th! Looks like Blue Cross also thinks I need this done!
Plus BWH sent the paperwork and pre-lab sheet, along with lots of folders for the cardiac cath. on October 15th. These guys are serious. Guess I must go to the calendar, erase the pencil and write these bad buys in ink??? I hope everyone is doing well today. Best to all. More later.
Alrighty then! The date for the cath. is October 15th. It will be done at the Brigham in Boston. This includes a 6:00AM arrival. They do a radial cath. which should help with recovery and discomfort. It feels good to get it scheduled and on the books. (I guess I really am going to have this surgery!)
Good morning all. So glad that the late August HVJ patients (Cindy, Rebecca, Aubrey and Nathan) are recovering. It has been wonderful to read about their progress. I bet you are all glad the waiting is over!
And it is wonderful to see that "September Ernie" is doing well just a few days after surgery. Ernie, hoping you get out real soon! Great hospital toga photo by the way. Thanks for facing forward!
My wife Lise and I had the pleasure of touring Italy for 2 weeks. Just returned on Friday. Rome, Florence, Venice and back to Rome . What a great time. It is amazing how a trip 4,000 miles to the east in a different culture reduces the "waiting" thoughts. Plus we kept real busy.
Now we are back. I need to schedule the cardiac cath. for early October. That is job #1.
On a real positive note, we also returned to see an email from a medical friend. She had gone ahead an coordinated an important part of the surgical event for me. What a kind act. When you experience something like this you are moved. People just go out of their way to help.
Hope everyone has a great day. I will post more now that I am back.
For the last 4 years we have continued "watchful waiting". Until this year, that has worked. This year I have hit the wall. Energy level is way down. Racing times have fallen off the cliff. During my April visit with my cardiologist we decided it was time. As a result, on July 15th my wife and I traveled to Mt. Sinai to meet Dr. David Adams. Joel, who did my work up that day was amazed at the robust sound of the murmur. He said teachers would love to have me in a class with medical students-you can hear it from my back as loud as a train.
Dr. Adams was focused and instructive. He has two LCD screens on the wall. On the left we viewed a heathy mitral valve in action. On the right, we saw my echo. The valve looked like a sheet flapping in a very strong breeze. A pretty strong indication that it needs to get fixed! We also saw several significant regurgitation jets- in the middle and on the side. The visuals were excellent tools.
I have Barlow's syndrome. Both leaflets require repair. The posterior leaflet will need a lot of attention. He said he can repair it and will use a number of techniques to fix it. Dr. Adams said it was time. My wife was comforted with his confidence.
We booked a November date that day and since then have been getting ready. I am looking forward to it. Don't kid yourself, I have the same concerns we all have mentioned. My other thoughts, however, are about the long term "quality of life" benefits post surgery. My valve has done an amazing job for 61 years. It just can not keep up any more so we will give it some expert help.
The HVJ continues to be extremely helpful. I need to know what is ahead and everyone's journal has been educational. It has been wonderful getting to know some fellow travelers. All the best. JJ
Let's "slow forward" from October to December 2008. After two months of doctor visits, various scripts of antibiotics, fever, night sweats and such, a blood test on Dec. 20th says "endocarditis. I received a call from my doctor on the Saturday before Christmas. He says "why don't you go to the ER and they will treat you with an IV." I thought, hey, day trip. What he failed to say was, "And they then will admit you into the hospital for 4 days, insert a pic line in your arm and start you on a 6 week course of penicillin!" I suspect he wanted to surprise me....or was afraid I would never show up. I felt like the dog that got tricked into going to the vet. For folks that like to count things, I calculated that I received 500 million units of penicillin over the 6 weeks not including what they slipped me in the hospital. (please don't ask me how big a unit is)
After the holidays my wife and I went on a 6 month pursuit to answer the question, "Is immediate surgery on the mitral valve indicated?" I had zero interest in an operation. That period was nerve wracking with lots of twists and turns.
We were able to find a great cardiologist in Boston (at the end) and after months of many conversations with cardiologists and surgeons we opted for "watchful waiting".
Since June 2009 we have been waiting quite "watchfully". More recently in 2013 we changed our approach. I will share with you the rest of the story in the next post.
I want to say to all that are recovering, my very best wishes for continued improvement.
I also want to say to all undergoing surgery in the next two weeks, I am hoping for the very best outcome for each of you. All the best.
I will be writing a number of journal entries in the coming days to tell you my story.
Here are the brief highlights of the beginning. For years I have been followed for a mitral valve prolapse. I don't think I ever thought I would need it fixed. (wrong...) I have run for 47 years and during that time was competive in local races.
Well, in October 2008 I returned frm a business trip on the west coast. After a hard day, I ran out of the house for a hill workout. Then I sat down to eat. Then I shivered and spiked a fever. Two months later they diagnosed bacterial endocarditis. For two months, I had worked, took pills periodically and finished in the top 3 in a 5k in Cambridge, ma. I remember thinking as I warmed up, geez, I really feel weak! I guess I did. I also believe I was 1st in the unofficial active endocarditis division. Let me post the next journal later this week to continue my journey to this community. Cheers to all
Good morning to all. I just signed up for the site this morning. I have been following the journeys of a number of you over the last few weeks. My surgery (a mitral valve repair) is scheduled for November so it seems like a good time to begin the journal. Thank you to all that have created journals. They have been extremely helpful to begin to understand what will be occurring in the coming months.
All the best: