Well, I thought I was on my way to the surgery being a fading, distant memory. It seems a twist has come in the road.
After feeling that it was odd for the "snap, crackle, pop" of cartilage popping to be continuing, I posed the question to JBT. After but a few minutes of delay to my text describing the phenomenon , and asking "Normal?", i got the reply. "No. Call my office to see someone"
After 10 days of waiting for the insurance company to approve the CT scan of my chest, I had it done last week thursday. Friday I got the call from JBT.."What have you been doing???" It seems that I have a 1/4" separation in my sternum at some point along the cut line, and that I am experiencing a "pinch" of sorts in my left chest area that is likely from a stainless wire used to pull it all back together.
Good news is that "it should heal", bad news is that we will verify with another ct scan in 6 months, and I am not supposed to use my arms for anything strenuous in the interim.
Now I suppose that wouldnt be too formidable if it werent for my right hip finally failing. Today, my right hip replacement surgery was scheduled for Aug 30. So with that event, it will be 3 surgeries in 9+/- months, with one good leg left and no arms to use through the recovery. Frankly, given the hip pain and the near term probability that it will be gone, I can find a way to get through it.
Nonetheless, I am still one of the luckiest people I know, and am thankful we live in a time that these miraculous procedures and devices and medical professionals are available to enable a long and productive life!
I would be interested in hearing from other post-op patients experiencing similar healing issues, and to learn of how you have handled/facilitated the healing process.
Thanks All. Hope to see many of you this coming saturday at our annual summerfest. invitations went by email to all that were subscribed here. For Mercy/CHS folks, I forwarded the invite thru CJ and others, hopefully it made its way around!
6 months from discovery to recovery - released back to life
Journal posted on July 24, 2011
I wanted to share what is likely my last update for some time, and once again extend my thanks for your collective support.
Going through this process since my 1st visit to the cardiologist in early January 2011 has been a humbling yet invigorating experience. The people along the way have been extraordinary, and the discovery of the extent of the talents available to us here in Western New York has been nothing less than astonishing!
Reflecting on my personal experience, and on the experiences shared by others who have ventured down the same path, I offer a few observations.
Be your own, actively involved health care advocate. Your primary physician may be well intentioned, yet despite your relationship with them, its not their life or their body. We want them to be the quarterback of our health care team but i think it is often true that they occupy the role of trail guide, handing you a map (referral) and an encouraging wave sending you on your way. Someone needs to be in charge, and my experience is that it must be you. Dont shy away from the responsibility or the experience, because even if you are not well versed at the start, you will become so as your journey evolves.
Listen to everyone that cares enough to share their ideas on what may be the best direction for you. After you have done so, and after you have thoroughly researched the options open to you (venue, surgeon, after care, etc), make the decision that feels best FOR YOU. Thank all that offered their opinion, but reserve the right to make the decision that in your circumstance and soul fits the best. This is your life and for this one time, it has to be all about you.
Be cautious about returning to work/full activity too soon. In my case, I jumped back in at the earliest moment I could as I was fearful that feeling disconnected would lead to a bout of cardiac depression that I just dreaded. I did push too hard, and battled fatigue - a continuing albeit fading issue. Listen to your body, give it the rest it needs to heal.
Accept that there will come a moment where you will feel that the surgery was a real game changer for you. Even with the wonderful benefits of a well functioning heart, there still come the moments of regret for not having done something about it earlier or simply being unaware (or kidding yourself into believing you were ). I have been counseled that cardiac depression has its root in the physiological stresses and changes of the process. I thought that once I distanced myself from the surgery a few months, that the likelihood of it occuring to me wained. I was wrong. In the face of all of the benefits of the aortic valve replacement, I have found myself tugged by the conundrum of leaving my life as it was behind and beginning anew, accepting that my new lease on life is only as good as what I do with it, and feeling far more mortal than I had ever admitted to myself. Having this feeling that I am starting over at 55 is scarey, and the looming right hip replacement only exarcerbates the sense. For the first time in my memory, I have found it difficult to keep focused on completing extended tasks that require - for me - emotional and mental energy and balance. Notably, writing assignments have been principal victims - a significant challenge given the nature of my work. Nonetheless, I know that this is not a permanent state of mind, that I will sort it through and get to the other side of it, and that help is there if I come to believe I need it. The caution is to be mindful that when going through something like AVR, there are three dimensions of healing - Physical, Emotional and Mental. Prepare for each as well the other and in due time you will emerge stronger, healthier and with clarity of purpose. Dont be shy about asking for help.
Lastly, I urge you to share. Share your story with others on the same path. Share your feelings with your loved ones. Use the experience to help you articulate in clear terms what the truly important things in your life are and then create a plan that you can share with others of how you will elevate these truly important things to the stature they deserve, front and center of your life.
Last week, I visited my Cardiologist to review the results of my echocardiogram. After declaring it to be the new baseline for measuring my future heart performance and telling me that all is well, he shook my hand and said the words waited for in great anticipation.." See you August 2012!" and with that he was off to his next patient and I was off to my new post AVR life. 6 months from discovery to recovery..wow.
Thanks all, good luck to all the AVR and other valve replacement patients working thru the process. Dont hesitate to write if I can be helpful in your journey.
PS for the few folks that will "get" this..I declare this post to be the very end of the worst case of writers block I have ever experienced! :-)
Its been some time since I posted. Now that I have reached three months from my February 24 aortic valve replacement surgery it seems a good time to update you all.
Most importantly, it is time to reiterate my thanks for all the love and support I have received from each of you. This has been a life changing event for me, one that I am certain would have redefined me in ways I wouldnt have cared for a great deal had it not been for each and all of you.
I recall John Bell-Thomson telling me before surgery that assuming no complications, infections or self-inflicted damage to my recovery, that at 3 months I could move ahead and live my life as normal and consider this behind me. Of course, there were the ordinary cautions about regular cardio checkups, losing weight, etc but the essential thing to me was that at 3 months, I would be free!
Wooohoooo, I made it :-) Today is the day!
Aside from some remaining fluid on the heart found in my post-op echocardiogram that otherwise revealed excellent results, my energy level is increasingly higher, color is great, breathing is better than it has been in years, prior decade long problems with cramps and spasms have subsided to virtually nil, incision site is already fading (thank you mederma), and weight is coming down due - I think in part - to a far better functioning metabolism. That said, I dont expect to be a contestant in any swinsuit contests this summer ..or at a least a winner in any :-) My hip is another issue, although I am able to walk passably with pain most of the time.
It is true that many thousands of people experience cardiac surgery of one sort or another every year, and I am sure that most of us come to find that all of our horrific fears and apprehension were, in the end, not all that different than that which every other cardiac patient experiences. Fortunately these deeply felt emotions prove to be largely unwarranted for most.
Yet, there are people and events along the way that leave a profound impact and often contribute to a life-changing perspective. That is certainly true for me when it comes to the skillful experiences and warm care that I received from everyone at Buffalo Mercy Hospital. From the surgical team to the cardiac care unit staff to hospital administration I could not have wanted for a better, richer, genuinely quality experience. It was a deeply human experience, one centered around me and my needs, delivered well at every turn. It was everything I was looking for as I searched for my surgeon, care team and venue, and I found it right in Buffalo minutes from loved ones and my support group.
My strong feelings about my care led me to accept an invitation for a brief on-camera interview for the Catholic Health System a few weeks ago. If it survives the editing and becomes available, I'll forward a link. I am truly thankful to all at Buffalo Mercy and to CHS.
I am working on a paper focusing on the importance of self-advocacy in health-care choices inspired by what I learned through my experience and that of others through this process. The sincere desire to give something of consequence back has been very powerful, particularly since the night a few days post-op when in the silence of the night I heard my heart beating and realized that it was the first time in a long time that I had really heard that rhythmic, powerful sound. A really long time.
I had been so close to the exit and never really knew it.
You would be correct if you guessed I fell to sleep with tears in my eyes that night, as I likely will tonite as I recall the moment. Good night all and thanks for participating in all that enabled my successful recovery. I'm back!
I am a bit over a week in Panama enjoying the beautiful temp, rain forest, sunshine and friends. Today, Carrie, Larry and Dawn left for Buffalo. We had a great and fun week. I know they were anxious to be there to experience the long awaited changing of the seasons :-). For me, this is the first time I have actually been "alone" in almost two months. A bit of alone time for reflection has its place too :-)
The last week has been big progress of me. While I still experience episodes of mid day fatigue (eg we went fishing Thursday for 5 hours on Lake Gatun (the canal), I slept for 4.5 of it..lol) I am feeling stronger and more normal daily.
I am sure that JBT wont like this one, but I was standing next to a staircase being formed for concrete where one of my workers was on the "ramp" of the form when he slipped and began to tumble down the ramp. I was standing perpendicular to him when it happened and instinctively reached my arm out to catch him. Fortunately, we averted his tumbling 15 feet and I had no adverse consequence for my healing chest. That was a bit close!!!
I find my little hideout here in Panama to be very renewing. Whenever I seem to get caught up in the pursuit of the fruits of the here and now, it takes but hours to days when I am here to remind me that life is less about means than it is methods, and good fortune comes in all sizes, shapes and packages.
So, late in the afternoon I found myself drawn for some reason to research (internet of course) the life expectancy post-op for aortic valve replacement patients. Much has been written, most of which isnt really authoritative, but my sense that I may well go through this again in 10-15 years was only buttressed by what I read (despite much more authoritative predictions for the longevity of my new pig friend). Most of what I read suggested a mortality rate that was less than pleasant, so a redo ended up sounding like a pretty good deal. A funk descended despite my best efforts.
I felt called to dial up my sister Sharon. She has been to my home here with me and it just seemed like a moment to reconnect. After the pleasantries, she began to tell me the tale of a friend/acquaintence who was also scheduled to have an aortic valve replacement. Trouble is that he has leukemia and has been undergoing chemo. Upon arriving to have the surgery performed - after much of the same anxious waiting as I experienced - he was turned away as at this time, he could not be helped. Details are fuzzy at best, but in that his surgeon too is JBT I can only surmise that his current condition made the operation impractical and conferred too much risk for him to survive it now.
It didnt take long for me to reflect - again - that I am a pretty damn lucky guy. The bouts of feeling sorry for myself are growing less frequent and certainly do not gain a welcome reception in my brain. Alas, the human condition being what it is, we all tend to succumb to the siren song that inspires our self-pity and our longing for a day well remembered when we were immortal superhumans destined to live forever. Where is Marvel comics when you need them?
So now, as I type these few words and feel tears come to my eyes, it is not because I am afraid for what the future may hold for me, it is that I once again have been reminded of my good fortune and find myself more taken with thoughts of how my sisters friend will find a sense of closure for his conundrum, and be able to find a way to move on and through it.
It has been 12 days since I have posted, I apologize for being remiss in providing an update.
My last post was just before visiting my primary care physician for post-op exam and to discuss his historical diagnosis that I suffered from COPD. This contrasted with the cardiac surgeon's revelation that I do not have COPD, rather I suffered congestive heart failure for years that went without diagnosis. The best I can muster up to descibe my primary physicians response is extreme disappointment. After expressing his happiness that the surgery went well, he went on to tell me that he just didnt understand how it wasnt caught earlier. He referred to paper copies of my file that were not available in the 3 year old online system and said he would be reviewing those records to see what prior echocardiograms reported. He was insistent that he had looked at them at the time of my physical in August and again prior to my surgery, so I elected not to remind him that his office had been incapable of scheduling me for the ECG he had "reviewed" at the time of my 2010 physical. It became clear to me that there are several different types of Primary Care Physicians. I think we all expect ours to be the Quarterback and to muster the resources necessary to assure our care. The reality is that there are likely far fewer Quaterback's than there are Trailguides, and even among trail guides there are those that help you plan the journey and those that just hand you out the literature and perhaps a map. I now realize I have had the latter and my reliance on him - almost the exclusion of my better judgement - almost cost me my life. This one will be changing soon.
I am now 24 days post surgery and doing very well. I have been able to return to work modestly yet have focused on getting as much rest as I can. My strength is returning, although now when I run out of gas I have minutes to make it to the recliner! Given that the surgeon had to open up the sternum entirely, the recovery time is 12 weeks - 8 to drive - with a few months after that to get back to normal. Fortunately, it will be summer and swimming can be part of the rehab along with lots of walking. I had been told that open heart surgery felt like getting run over by a truck and dismissed the notion. I was wrong! lol
Both cardiologist and cardiac surgeon have cleared me to return to life slowly. Both have cleared my for moderate air travel, so some time in the sun in Panama is in order soon. While cardiac rehab was recommended by the cardiologist, walking daily to 3 miles and then 3 miles per hour is the recommendation of the surgeon. A baseline ECG will be done in a few weeks so there is something to measure against going forward at exam time, and the next cardiologist appointment is August.
Given the walking for rehab, I have arranged a consultation with another orthopaedic doc to see what can be done to decrease the pain in my right hip to enable me to walk and exercise with less discomfort. Hopefully news there next week!
I must tell you all that your love and support through all of this has been a true blessing. It never occurred to me that I would become a "cardiac patient" in my lifetime. When I first learned of the problem and the dim prognosis for a long life if I experienced a significant adverse cardiac event before the replacement, a chill definitely traveled up my spine. Had it not been for all your support, it would have been far more difficult if not impossible for me to work through the situation, seek out and sort out facts, find and qualify solutions and then make the choice and move forward with confidence. My post-op recovery was made bearable by the daily contact of local friends - and the food, care packages and flowers! Wow!. One thing I am extremely grateful for is that I did not have to take my sister up on her offer to help me with matters of bathroom hygiene - I just dont think I could have ever come back from that :-)
My updates here will continue a couple tmes each month until I am on the other side of this as completely as I can be. If i can be aide or assistance to any of you that find yourself of a family member heading down a similar path, dont ever hesitate to be in touch!
I/ll be seeing my family practitioner this morning, For over a week now I have struggled with what I will say to him, and what my expectations realistically should be. I have lived under the diagnosis of Chronic Obstructive Pulmonary Disease for almost a decade - COPD being a descriptor for virtually all chronic repiratory ailments from asthma through tuberculosis. My "murmur" has been known to exist for years, Yet despite annual physicals, the underlying diagnosis of COPD guided the hand of all the health care professionals with whom I had contact. That is until one, John Bell-Thomson. Within moments of our first consult, he advised that I in fact was sufferring from Congestive heart failure and that the condition had existed for quite some time. He referred to my lungs as "wet walls"
One week out of surgery I have none of the issues I displayed for years. No constant wheezing, bloating, fatigue as though I was just dragging..cramps, muscle spasms. Its astounding. That said, I wont be surprised if I learn that I continue to be seasonally affected by pollen, etc, although the jury is out until the spring rolls around.
Ten years with an incorrect diagnosis that would have killed me if not for good fortune. Yet, I am not particularly angry with anyone other than myself. Had I chosen to become more proactive in pursuing answers for the unexplained symptoms I had experienced, I would have likely learned of all this a long time ago, and my intervening years would have been lived differently.
In the end, where does the patients responsibiliiy begin, where does the doctors? How do we really learn to be our own advocate? I am certainly no shrinking violet, yet even so failed to step up to the plate and as a result placed myself directly in a path that would end my life prematurely.
How do people accept the opinions of professionals with far greater training and general experience that themselves, yet learn to be critical thinkers that accept primary responsibility for their own health and care provided by others. These are topics occupying my thoughts and reading of late, This is my time to reflect on my incredible good fortune, to know just how blessed I truly am.
I read your postings every day and to be candid, often find myself with tears in my eyes being overwhelmed with the strength, love and support evidenced by your posts. If you have any thoughts you would like to share on the discussion above, please feel free. I think there is something meaningfull and helpful that can grow from the discussion.
For my visit to the primarly doc tomorrow, I suspect I will ask and lsten and make any decisions after I gather some facts/ We'll see if my emotions on the issue enable me to do that :-)
I think it about time that I give a heartfelt thanks to Adam Pick, creator of this journal and author of the companion guide "The Patiemts Guide to Heart Valve Surgery"
When I learned the morning of January 21, 2011 that my aortic valve replacement seemed inevitable I was at a loss for what to do, where to turn for information and advice.
As I headed for Panama that afternoon, I did what most of us do, I turned to the internet and started to read. By Atlanta I had located Adams book, downloaded it and read it by the time I was on the ground in Panama. I read it again that weekend. I can tell you with certainty that it provided a great summary of much of the information needed to get me on my way to making a decision in subsequent weeks.
Adams motivation to write his book was to share his story and help others with their heart valve journey. He did it very well, and the creation of this journal for all of us to use is just one more reinvestment of his good fortune for the health of all the rest of us.
I am absolutely amazed at medical technology and techniques today.
11 days ago JBT had my chest opened, aorta cut and - using his words - chiseled two stones out of my heart, replaced the valve, restored my heart to operable condition, closed it all and began the process of returning me to the living.
Today, my sutures and staples are pulled, the incision looks to have some hope of being low profile despite being 21 cm long, I am sitting enjoying a coffee and considering a trip out (not driving) to watch part of a Shamrock Day run.
Yesterday afternoon had me at JBT's office for post-surgical followup. Heart sounds good, lungs are clear, everything healing,vitals very good, sutures out, meds checked. Back to being able to use anti-inflammatories when necesssary for pain and to reduce hydrocodone accordingly. Driving possibly 4 weeks. JBT has released me into the care and custody of the cardiologist!
In this trip to JBT's office, we stopped for lunch at our building, took care of some paperwork, let everyone know I am alive, well, recovering and returning at a slow pace over then next month.
It is all simply incredible.
My dear friend Courtney Walsh stopped last eve and talked with me about my desire to use my experience to share with others to aide them in managing the pain and anxiety as they approach taking personal responsibility for the important decisions necessary for their own health care. She invoked having me recall that I am 50% done with a PhD in an area of Decision Making, and suggested maybe it was time that I get back at it lol
We also discussed how I may best be able to be an ambassador for the medical professionals, care givers and resources in our own community . I think we evolved the idea to a couple of exciting projects that will enable me to reinvest some of what I have been given in this rather dramatic renewal of my life! I'll keep you posted.
Thanks everyone, next stop on the train is Tuesday when I meet with my primary and discuss how he managed to misdiagnose congestive heart failure for COPD.
Day by day things are getting better, and I am getting stronger.
The incision looks great, albeit 21 cm long. The skin around the drainage tubes is extremely sensitive, almost as if on fire. I am told that this is not unusual and typically passes in a few days. In the interim, the only relief i can find when it kicks up is a cool clean damp cloth across the belly.
I have my post surgical check with John Bell-Thomson (JBT) Friday morning. With luck, some sutures will be behind me after the appoinment.
On Thursday morning at 10:30am, roughly as I was being closed up by JBT at Buffalo Mercy Hospital, I received an email from Cleveland Clinic. This one advised me that all the records had been distributed to the various points in the hospital and that no conclusion had been reached but that I would be contacted shortly.
On Friday morning I received a voicemail that said 1- it was
clear that I needed an aortic valve replacement but that the nurse had still not heard from the surgeon about whether I had an aneurysm, and whether it needed action. I would hear back from her.
Monday I received word that I do indeed - in the opinion of the surgeon that never spoke to me nor examined me, need an aortic graft with the replacement.
On Thursday, JBT opened me up to find two completely calcified valve leaves with an opening for the movement of blood of a "pinhole" the removal of the leaves took some effort. In the end I was given the second largest replacement pig tissue valve they have because of the size of my respective "parts" JBT examined the ascending aorta and found no sign of aneurysm at all.
The staff at Buffalo Mercy was second to none. At each and every contact, they were competent, professional, compassionate and human. The level of care was-in a word-extraordinary. My charge nurse, Marci, was my best friend and made sure any question I had was answered, any need I had attended to. The same is tru of the rest of the staff, each of whom will figure prominently in future comments. Two of the gals are pregnant, one due over the weekend, yet the care for all of us in the unit was never without a smile. Given some of the tasks to be done by these folks for us patients as we come back among the living, you can just feel the character of the people who are deliverying your care. The entire hospital staff, volunteers and all, treated every one of my family and friends delicately, compassionately and gave great comfort to each and every one. JBT was frankly awesome. He was direct, confident and exudes the degree of skill and professionalism that could be read by some as being intimidating. Given that I and many of the folks reading this journal could be ascribed with the same bearing in our lives from time to time, I find JBT's style to be right up my alley.
I am now confidently focused on rest, recovery, rehab and return to normal living. While I am not one to sit around and wait for it to happen, I can assure you I will follow the program laid out by JBT and Meltser (cardiologist). I have no intention on giving this gift back by tempting fate. Carrie, Linda, Debbie, Janice, Sharon, Donna have all been great making sure I had help every day since return. Carrie's outpouring of love and commitment have been almost indescribable.
As a friend said to me yesterday, I am one lucky dude.
Thank you everyone, please stay in toucb and I will keep you posted on how the journey continues!
Ran over me. So I guess it's a good thing that I can be pretty stubborn to work my way out of this. Because im such a big guy, JBT was unable to do the mini. So, it looks like I have a 12 week recovery. I am going to go home today and take it easy. I will be happy to see friends over the next few weeks because I will certainly need you. That said, if you are sick please stick with phone calls. I'm doing well, just pretty tired. So I am sure everything will be great on the other side.
I'm back! Lol.
I'll post more later but I can't tell you what a great decision coming to mercy was. With all the support from all of you and the great team here I believe I have a long live ahead to enjoy with those I love, all of you. ciao for now!
We just spoke with Dr. Bell Thompson and the surgery was successful! They used a pig valve that is expected to last 30 years. The incision is a bit larger than originally hoped, about 6 inches in length. We will be able to see him in less than an hour!
Now our focus will turn to making his recovery as comfortable as possible. The master bedroom is where we have set up camp. The challenge will be keeping him entertained and relaxed. I know he looks forward to seeing and hearing from friends.
Most likely the next post will be from Jim himself. He should have his phone tomorrow or Saturday too. If anyone would like to contact me please feel free. Linda and Sharon are here as well. I am ecstatic to share this great news with all of you who are dear friends of Jim. He is a wonderful man that has many happy and healthy days ahead!
I have been searching for words all day for this post.
At reading each and every post from all of you, I have found myself at a loss for words, with a certainty that I would not be able to adequately express just how much your support, prayers and friendship mean to me in individual responses. For the last several days, I decided to simply wait until tonite.
Despite the travails that life has delivered me along the way - just as it has to you - I have always believed myself to be very fortunate. My health has been generally good, my career has been varied and exciting, with new challenges for learning presenting themselves at every turn. As with most entrepreneurs, I have seen my balance sheet gyrate as though it was an 18 foot fishing boat in seven foot seas, with good fortune enabling me to catch my limit much of the time, particularly in recent years. While certainly not being the wealthiest guy I know, I have done fairly well so far.
Yet, the real wealth, the true richness that is the foundation of my life, the single discriminatiing dimension for which there is no equal, is in the vast soulful friendships each of you have chosen to share with me through the years. In the recent days, I have heard friends telling many of the stories of how our lives became connected, and how our friendships have grown from but a single moment, a single event, to become woven in the fabric of our lives, and in my life in perpetuity.
Never has this been so apparent as it has been during this journey for me. Your love and support have given me the strength to face this without fear and the resolve to come out the other side a stronger, healthier, more thankful and aware individual. None of these things would have been possible without each of you. For this, I will be eternally grateful.
Surgery is scheduled for 730 am tomorrow. My guess is that a post will be made here by noon or one.
Please accept my heartfelt thanks, my sincere appreciation and my love for being there for me. I WILL be back soon.
I have just returned from the surgeons office having learned that I have been cleared for surgery Thursday morning at 730 am. There is something to be said for being the first of the day, yet I admonished them to get a good nites sleep tomorrow and no partying tomorrow night!
Sooo, here is the real scoop from the senior surgical nurse.
My hospital stay will be 4 to 5 days absent complications.
Pain should be minimal but in any event managed as necessary. Will be tired and feeling sluggish but "we are doing this so you feel better, so it shouldnt last that long" (Its sort of curious to me that I will be feeling better..i didnt know I was feeling poorly! lol)
Best not to drive for a month, so I'll be arranging a driver to be able to be mobile as needed. It seems like I will be able to engage in life from home starting at a couple hours each day by mid next week.
Followup with surgeon will be one week, cardiologist 2 to 3, and primary doc in 3 to 4. I will need help for up to a couple weeks, but will not need an aide, per se'.
Of great importance of course is that I can travel in 4 weeks as long as I am not carrying luggage, and can comfortably plan to head for Panama for the end of April. Apparently the stainless wire that is used to pull my chest back together stay in place but dont set off the airport alarms, thankfully.
Even with the mini sternotomy, no weight over 10 +/- pounds for at least six weeks, and no strenuous exercise for 3 months. Then I can resume my workouts and continue on my weight loss and fitness plan.
I'll be finishing up the matters I can get done by 5pm tomorrow and heading home to prepare for an early morning Thursday. Carrie will be driving me to the hospital and she, my sister Sharon and my assistant and wonderful friend Linda will be there through the day.
I am told that by 730 -8, the process will begin. I am the first up for JBT, and once he picks up the scalpel, the surgery itself will be 2-2.5 hours. So, with prep into the OR, surgery and post surgery move to the Cardiac recovery area, I should be through by 12 to 1pm. Shortly after, the ladies will be able to visit me although i likely wont know it. They will have the opportunity to ask all the questions that should be asked or that are on their mind. I would expect that Carrie will post about the outcome by mid afternoon.
The balance of Thursday will be spent to return me to the concious world. If you would like to visit, best to wait until Friday or Saturday. I understand vistors will be limited to 2-3 at a time. Hopefully, I'll be home by Monday. At some point, I'll sneak some time on the keyboard to let you all know that I am back :-)
I appreciate all your thoughts and prayers. I even had a friend tell me that if God gave him a choice of making more money or helping me recover, he would decline the money...now thats a pal, because I know how tough a choice it would be for him..! lol I'll send a last journal entry before heading to the hospital. A final comment, I have yet to hear back from the Cleveland Clinic on my record review and second opinion. I have come to like the idea that my care has some personal importance to the JBT team here, and my several friends on the staff at Buffalo Mercy. It makes quite a difference for my confidence heading in to this event. My love to all!
Pre-op testing day today. I got a call last eve from a friend in Florida. He expressed at some length his support for me particularly given how "scared" I had to be. His comments made me realize that I am actually oddly calm and at peace about this. Perhaps it's because I know the alternative is to be viewing the world from the wrong side of the garden bed far too soon. Perhaps it is because I just have this sense that I am not finished yet - there is far more to be done before I'll be allowed to exit. Perhaps it's my faith. Whatever the reason I want to assure all that are sharing this journey with me that while I am a bit anxious it is mostly to get it done and be on the other side of it, I am healthy emotionally and mentally as this event draws near. Thanks all for your support, it has been a tremendous contribution for me throughout this trying time.
It has been a long road in a short time to come to a decision about my situation. In the end, I consulted two cardiologists, two local cardiothoracic surgeons and the staff at the Cleveland Clinic. All agree on the basics 1). that I need to have the surgery to replace my aortic valve, 2). that it needs to be soon. The local guys that actually examined me each independently believe it needs to be quickly, CCF says it needs to be done soon, but "whats the rush?"
First, let me say that I truly appreciate all the support and advice along the way to a decision. As I have said previously, I have chosen not to make a decision until I was in possession of ample facts that satisfied me. I am confident that that there will be no consensus among friends as to the best venue for me to have this done, as has been reflected in my guestbook here.
What I will ask of all reading this post is to respect that I have invested considerable deliberation in this decision, and I will enjoy the benefits or bear the consequences one way or the other. For me, the time for deliberation is over and now I am swinging full steam into getting my mental and emotional attitude squarely behind achieving a successful outcome. That includes believing in my chosen team wholeheartedly.
On thursday February 24 I will report to South Buffalo Mercy Hospital for surgery to be performed by Dr. John Bell-Thomson. Absent unforeseen issues once he opens me up, he will perform a mini-sternotomy and replace my calcified bicuspid aortic valve with a brand spanking new tissue valve, the choice of pig or cow to be determined based on what he believes to be the best when he sees whats what. I am reminded by a jewish friend of mine that at least I have the option of the pig valve <gr>
The CT scan showed a possible ascending aortic aneurysm, however JBT believes it is likely to not be a threat given the overall size of my parts (big guy and all), so the sense is that he will verify it not to be a near term issue and move forward with what all have described as a simple/routine aortic heart valve replacement. I am glad someone can think it simple or routine, as it certainly isnt to me! lol
So, I begin my journey to begin the replacement of my various aging body parts. Somehow I didnt think it would come this soon, but I guess better now when young and still strong.
Thanks everyone for your kindness, support and respect for my decision of surgeon and venue. With luck, I'll be home next Saturday or Sunday seeing whats on the Sci Fi channel and warming up to reconnect with life through the modern miracle of the internet. :-)
So, it turns out the cardiologists records clerk failed to send the angio to CCF. The second person I finally talked to said she was in the middle and it would be better if I called the hospital cath lab myself to make sure the CD was sent. You gotta be kidding me! In the middle??? Fortunately, the cath lab was very responsive and called me when the disk was in the package and delivered to their overnight courier desk. We'll see!
Well, CCF finally has all of my records and tests. Originally I was told 5 days to review once they had everything. I had hopes it would be but a few days.
I was just informed it would be two weeks. I have asked for the review to be expedited given the what I have been told is the urgency of my situation by the cardiologist and two cardiac surgeons here.
We'll see, yet if it is two weeks for review, then another week or more to schedule, then get it done, then CCF may simply not be an option. I still have my surgical date of Feb 24 with Dr John Bell-Thompson and a follow-up with Dr Serrie Lico this Friday.
As I have read about the challenges and trepidation of all the folks that have gone through this before, I think the one thing that jumps off the page is the issue of who to choose and what venue is the very best.
Being that I am a decision model sort of guy, I must say it is one of the most difficult decision trees to resolve. In my case, I have a significant number of trusted friends and loved ones that adamantly recommend that I choose only the Cleveland Clinic. There is absolutely no question that the CCF, in general, is awesome and of great repute. I have a number of friends that attribute their lives being saved with the skills of the docs and staff at ccf, including friends in the medical community.
Yet, the ccf is not the only place that has gifted, experienced, cardiothoracic teams with excellent track records. One could argue that the only factor that matters is whether you will live or die hence the only thing to decide is where you have the best chance of that happening.
Yet, there is a fair challenge to even being able to cross that ostensibly simple threshold of judgement.
I suppose my reluctance to date is that I find it difficult to surrender my fate to an institution, as opposed to a specific professional who accepts the charge for my care and well being, and whom I have come to trust. So far, CCF is a concept, a place of heady accomplishments and arguably lofty ideals backed by statistics and the experiences of others in circumstances that on one hand resemble my own, and at the other, are so different as to not provide a reasonable basis for comparison,
With luck, I have overcome the pinhead records clerk problem and CCF will have the entirety of my records tomorrow. From then, I will see how the case is evaluated and - with luck - experience the human face of the institution in a meaningful way quickly so that I may move ahead.
In the background is the admonishment from the cardio professionals I have seen to date that I need to have this done in weeks, not months.
The one thing I am sure of is that not one aspect of this is pleasant, and in the end it is a uniquely personal decision that is made in the silence of my own thoughts, the consequences for which will be borne primarily by me.
I came home from Panama why? lol The one thing I am sure of is that I am not done yet, so one way or the other, it will work out and I will have another chapter for the book.
Thanks to all my friends and loved ones, your support and love is humbling and has reminded me that true wealth is in the fabric of the love shared among friends. The rest is transitory at best.
After a week and several calls to my cardiologists office records clerks and then supervisor, my echo and angio are finally winging their way to Cleveland. With luck, their eval will be complete in a few days and I can make a final decision on the venue for my surgery.