Jim's Journal

Three Years Post Op - Great Echo Report: My cardio is amazed at the low gradient three years out. Bodes well for longevity of the St. Jude Trifecta valve in patients who get it or similar tissue valves in their 60s. Photo taken in March in St. barthelemy

Happy Memorial Day to all. I am 27 months post AVR, hemiarch and dual CABG. Just had a CT angio and all is well. I'm an active scuba diver at age 68. I'm on the right in this photo. Wishing everyone as good a recovery as I have enjoyed.

One year after OHS and thanks to a skilled surgeon, some good luck, and determination on my part, I have returned to the sport that I have enjoyed for 36 years.

"A heart will never be practical until it can be made unbreakable." - L. Frank Baum

Interesting information for all of us.

Mechanical Versus Bioprosthetic Aortic Valve Replacement in Patients Aged 40 to 70 Years: A Systematic Review and Meta-Analysis.

http://www.ncbi.nlm.nih.gov/pubmed/26794881

Happy Holidays To Everyone! I'm doing well 10 months out.

On a cruise vacation visiting the UK, Wales Ireland and Scotland six months post-op...no meds except aspirin, some depression, but feeling physically recovered. Got the kilt in Edinburgh.

What a great 4 month post-op echo report looks like: Summary 1. Left ventricle: Size was normal. Systolic function was normal by visual assessment. Ejection fraction was estimated in the range of 55 % to 60 %. There were no regional wall motion abnormalities. There was mild concentric hypertrophy. Left ventricular diastolic function parameters were normal. 2. Aortic valve: A bioprosthesis was present. It exhibited normal function and normal motion. The leaflets appeared normal. There was a normal-appearing sewing ring and no rocking motion of the sewing ring. There was trivial aortic regurgitation. There was no significant perivalvular aortic regurgitation. Valve peak gradient was 12 mmHg. Valve mean gradient was 7 mmHg. The aortic valve obstructive index (by VTI) was 0.68. 3. Aorta, systemic arteries: The root exhibited mild dilatation, but represents proximal aortic graft after reconstruction of the proximal ascending aorta.

For Popeye Steve...this is a view of my antique model trains layout...also used on the cover of my book.

I was in Philadelphia last week for my first post-operation medical evaluation. My first post-op echocardiogram since discharge was completed and I met with my cardiologist. Everything looks very good. My new aortic tissue valve is performing beautifully with no leakage and low gradients. This is good news. MY next appointment with my cardiologist is set for January, 2017. I am continuing cardiac rehabilitation, walking, and working with weights combined with stretching. The idea is to ward off becoming frail with age.

First Morning Glory of Summer

In addition to my daily walks, I've started an exercise program that incorporates some exercises recommended in a recent issue of the AARP newsletter...stretching, body weight squats, touch your toes, etc. I'm combining that with a couple of exercises recommended by my scuba diving insurance company that are designed to improve upper body strength. I use two 20 lb hexagonal dumbells. The two exercises are pullups and pushups both done from a bent-knee position in the deck. Then I add some overhead lifts with the dumbbell one arm at a time, and some curls. I'm hoping that the body weight squats help improve the muscle tone in my left leg, which is somewhat atrophied due to a long ago bout of sciatica and arthritis in the knee. I'm trying real hard to stick to my low carb diet. My weight is good at about 190, down slightly from where I've been in recent months after my surgery. I stopped Warfarin last Tuesday with the blessing of my cardiologist so now the only pill is a daily aspirin. That made me happy. I have my first post op echo in a couple of weeks, but the valve seems really good. I have no palpitations or other symptoms and it really pounds shut. I know it's working, that's for sure! Finally, Monday I start cardiac rehab. I'm getting a late start due to the move to the summer cottage but I at least want to try some sessions to see if they are helpful.

I'm feeling physically pretty well. This week I plan to start the ball rolling on joining a cardiac rehab program. It may help me to improve my conditioning. I want to try anyway. The results of my 24 hour Holter heart monitor were excellent with no arrhythmia or other abnormalities. My cardiologist took me off Amiodarone, of one of the remaining two heavier medications I'm taking. In three weeks I can stop the other (Warfarin) as long as I don't notice any palpitations or other irregularities. Then I will be completely off medications save for a daily aspirin and multivitamin. For the most part, I have made an amazing recovery from a very traumatic operation. I'm still working through mental and emotional thoughts and feelings that come with surviving such a trauma, compounded by the loss of my beloved dog, Bradley, while I was in the hospital. As I wrote at the time of my surgery, the whole experience has a surreal quality for me, and I often don't feel like I fully comprehend what happened and what the implications going forward are. This is not uncommon for heart surgery patients, The good news is that I am not debilitated or suffering from extreme depression. Hopefully things will straighten out for me with the passage of time and the loving support of my wonderful husband, who has always been there for me.

Here's another comprehensive essay on aortic disease written by my surgeon, Dr. Grayson Wheatley at Temple University.

http://badaorta.com/an-open-letter-to-patients-with-aortic-disease/#comment-181

Seven weeks post-op and doing two hour-long walks a day usually 6 to seven miles total. My afternoon walk yesterday:
Apr 10, 2015
Walking
3.32 mi
Distance 3.32 miles
Time 53:18
16:04 minutes per mile

I asked my surgeon, Dr. Grayson Wheatley at Temple U. to draw in the surgical modifications he made in addition to the new aortic valve. The shaded area is the dacron ascending aortic hemiarch graft. I also received two CABG grafts as indicated.

A 13 day hospital day and two trips to the OR in February not withstanding, I'm doing well five weeks out. I'm walking three to four miles a day and meetings with my surgeon and cardiologist went well. I can drive again on Wednesday and my list of meds is down to just a few. No matter how tough your surgery is or how weak you feel afterward, you will get better and stronger if you believe in yourself and keep a positive attitude.

Just a day shy of three weeks since my second trip to the OR. With the good weather I'm outside doing two hour long walks a day. My INR is in range, no pain, still struggling with strength and endurance issues, but slowly making progress. You gotta be in for the long haul.

Awake and on the vent for 17 hours post-op because I had an inter-aortic balloon pump installed to assist my heart action.

It's been two weeks since my second of two trips within five days to the OR. Medically things seem OK, no issues with my new valve or all of my surgical repairs, heart rate or BP, etc. I just had no idea how weak I would be and how painfully slow and difficult getting any strength back at all would be. I haven't felt quite strong enough to go out of the house yet, but with all of the snow and ice and cold here in Philadelphia I couldn't go anyway, so I have a major dose of cabin fever. It's supposed to warm up this week and I have my first follow-up appointment on Tuesday so hopefully I'll feel better after i finally get out and get some fresh air.

Just completed a 30 minute walk in the house sans walker. It wasn't that long ago that I couldn't even get out of bed. I have some puffiness in the ankles, but other than that I have no complaints at all. I haven't taken a pain medication in a week. If I can continue to improve a little at a time like this I'm optimistic that I'll be walking outside soon...if Old Man Winter will give us a break here in the Northeast.

Home! Hooray!

My stamina all of a sudden leaped to the point where I can walk a lot and even climb steps! I never thought I'd get back to this point. So the insurance denial doesn't matter...the hospital has cleared me to go home later today! Tears of happiness I gotta tell ya.

Waited all day today for insurance approval to enter acute rehab only to be denied. So the next option is to enter sub acute rehab at a different facility maybe as early as tomorrow. I am medically stable and feeling good just not strong enough to go home.

My Afib spontaneously converted to normal sinus rhythm last night so I didn't need the dc cardioversion. May enter acute rehab tomorrow or Saturday. It's been a long, tough haul.

Spent some time with physical therapy today. Bowels are working finally. Afib and high heart rate are issues the doctors are working on. Will be making arrangements to go to a rehab facility upon discharge. Sorry I cannot be as actively supportive of everyone here but you are all in my thoughts.

Well,.tubes are out and I am medically stable, I think. The Afib that I developed when they took me off Amiodarone due to liver concerns continues to rock the boat and is very noticeable. I have zero strength and get winded at any activity. I met with physical therapy today and they are recommending discharge to a rehab facility. I know I can't go home in my current state if extreme weakness. Thanks everyone for the continued love and support. I am glad this thing is not ad bad for most of you as it has been for me.

Thanks everyone for all of the support. My numbers are improving. Two chest tubes were removed this morning...two remain. My swan neck arterial line from Fridays second surgery is supposed to be removed today also. No appetite and taking meds to get my bowels to move. But slow progress is being made I think. Patience is necessary. Love and hugs to my heart sisters and brothers.

Jim

Still in ICU day 7...trying to get heart function improved...outlook trying to keep positive...at least one more day then maybe I can try to sit again...thanks for keeping me in your thoughts

Still in the ICU since Monday. Had a second full steroenotomy Friday to relieve fluid backup behind heart Original surgery was 7 hours valve, root, ascending and two cabg...been a tough week...hope I have turned the corner

This is Dan, reporting for Jim Kelly-Evans. He had his surgery today, correcting the valve, the aorta, aortic arch and two arterial bypass procedures. He is in recovery at the ICU now and appreciates your concern

Well, it's time. My surgery is tomorrow. It's been a long time coming. People often ask me "how do you feel?" Or they ask "how are you handling this?" Or, "how do you keep your spirits up, stay positive?" I usually respond that I feel fine and that having a wonderful husband, pets and a great life keeps me positive.

Dan points out that this whole thing, finally getting to the point of needing surgery, hasn't happened the way we thought it would. We figured I'd get progressively weaker and symptomatic, and that one day I would collapse like a friend did when his aortic valve went bad. But that didn't happen in my case. I think of my experience as more than a little surreal. This is because, with the exception of my serious episode last December 9 and a few lesser episodes over the moths and years, I usually feel just fine with minimal symptoms. I can still lift heavy things, walk five to six miles a day, and in short, do just about everything I want. I get a little winded once in a while climbing steps, but other than that I feel perfectly normal. So yes, it feels like I'm in some sort of surreal dream wherein I'm fine, a dream that that never ends... but I have to get this heavy duty operation anyway, that will rob me, (hopefully only temporarily,) of the strength and conditioning that I've worked so hard to maintain into my senior years.

There's a hill that I climb every day on my morning walk on my way back to the house. I've always said to myself that the day I can't climb this hill will be the day that I need to have surgery. But that's not the way it worked out. I can still climb the hill today but I won't be able to do it for a while after surgery. So now I say to myself, the day that I'm able to once again climb that hill...that will be the day when I'll feel recovered.

Wearing my American Heart Association "I Love My Heart" badge for Valentines Day.

I am in a great place (mentally) all set for Monday...no worries, bring it on. I have a busy weekend with a social event Friday evening, and Saturday and Sunday performances to attend. And I can drink my sake until Saturday evening, how great is that? Finally, my weight...194.2 down 2.0 since last week and I made my target weight for surgery of 195.0. I have asked my husband Dan to update everybody here and to take many photos on Monday and Tuesday and to bring me my laptop as soon as I am out of the ICU. But who knows what condition I'll be in or whether I'll want to deal with it. We'll see. It's been quite a ride these past 11 years since my diagnosis. But like Sondhiem wrote ....I'm still here.

Today was pretty intense. First I met with my surgeon's right hand man, a nurse-practitioner named Bill. Bill has been very helpful since I first met with him. Today he answered the follow-up questions that I had such as about the total number of incisions I would wake up with post surgery (7 or 8 including three or four drainage tubes, two regular IVs, an arterial IV, and a neck incision for a cardiac catheter!), what medications I would be on, probably at least six including a water pill, something for my bowels, a pain killer, a beta blocker for blood pressure medication, aspirin, and coumadin. I also asked Bill about the relative complexity of my procedure. On a scale of 1 to 10 with 10 being highly complex, my procedure a "Button Bentall" is an 8 or a 9. That's why you go to a major university center like Temple or Penn, a heart center of excellence, to get this type of surgery. Bill also explained the timings that my husband Dan can expect for my procedure. The operation will last between six and eight hours including prep time and post surgery housekeeping before I will be transferred to the ICU. If my procedure starts as scheduled early Monday, Dan can expect to get a report from my surgeon Dr. Wheatley sometime between about 1 PM and 3 PM. Bill also commented on the general anesthesia used. Two different agents are administered. One knocks you out and the other paralyzes you.

After meeting with Bill I met with my surgeon Dr. Wheatley. By this point in the process most of my questions had already been answered. I did disucss the possibility that I might require a permanent pacemaker post surgery. Dr. Wheatley told me that there is only about a 10 percent chance of that. Since I blog about BAV disease and aneurysms and my own situation, I might want to write further about it at some point. In this connection i asked Dr. Wheatly if he planned to take photos of my procedure. He indicated that he did not do this routinely but he would try to make some media available for me.

After meeting with Dr.l Wheatley it was time for pre-admission testing. This included an examination by a nurse-practitioner, blood work, and chest X-rays. I got anti-bacterial body wipes that I must use the night before my surgery and also on the morning of the surgery. I also asked if I could see the cardiac intensive care facility and the step down unit, but apparently Temple Hospital does not allow casual visitors to these facilities.

Finally, Dr. Wheatley asked me if I would be interested in participating in an evaluation of an alternative sternal closure device, "Sternal Lok Blu," which are metal plates screwed to the sternum instead of wires. Dr. Wheatley feels that this method is superior to the wires. I agreed but since it is a study only half of the participants will receive the rigid sternal fixation devices and the other half will get the usual closure with wires. I'm hoping to be one of the lucky recipients of the Sternal Lok Blu closures. I won't know until after the study ends, though, in about a year.

So now I have only four days before surgery happens. The train has left the station and I'm on board. There's no getting off now.

"Sternal Lok Blu" Rigid Sternal Fixation

Don't miss the latest essay by my surgeon Dr. Gray Wheatley focusing on the aortic arch!
February 7, 2015
Medical Arc de Triomphe (or Why your Aortic arch is unique)
http://badaorta.com/

Wearing RED today for women's heart health.

Check out the latest information on aortic disease from Temple University thoracic surgeon Dr. Grayson Wheatley.

What you don't know about Aortic Disease

http://us10.campaign-archive1.com/?u=bfe4ea74c32415767992c51ae&id=9c4829b040

My surgeon. Dr. Wheatley, sure is busy on the presentations circuit. It's nice to have such an expert in your corner.
http://www.sciencedaily.com/releases/2015/01/150126124947.htm

I had a valuable exchange of emails with my surgeon, Dr. Wheatley in regard to the choice of valve prosthesis for my aortic valve replacement. Dr. Wheatley is confident that, if I were to need another replacement in the future, it will be possible to to have it done via the new trans-catheter (TAVR) method. So, while it remains a gamble on the future against the possibility of having to undergo another open heart procedure, this seems to be a reasonable course for me to follow. The other option, selecting a mechanical valve combined with the need for lifelong anti-coagulation therapy, has faded as a viable option in my mind. With about two and a half weeks until my surgery date, I am becoming sanguine about my situation.

Wow! My surgeon (2/16), Dr. Wheatley of Temple University in Phialdelphia, has just posted another in a series of really informative explanations of valve and aorta disease...this time he is focusing on coarctation.
http://badaorta.com/

A recent senior selfie (@65)...will I be as healthy post surgery?

I posed a question to my cardiac care team at Temple University Hospital asking why it will be necessary to replace my entire aortic root and ascending aorta. My cardiologist, Dr. Martin Keane responded with this comprehensive explanation:

You have a bicuspid aortic valve (“congenital anomaly” - most common one - present in about 2% of human population). It turns out that not only does having a bicuspid aortic valve result in early valve disease (stenosis, regurgitation or both), but it is also associated with an abnormal weakness of the most proximal portions of the aortic “root” and ascending aorta. It’s known as “bicuspid aortopathy”. It is a form of annuloaortic ectasia, and any dilatation of the proximal aorta is usually associated with sinotubular effacement (that’s just a descriptor, not a pathology). After much population-based research, it has been determined that an aortic root or proximal ascending aortic diameter of ≥4.5 cm portends elevated risk of further dilatation and aneurysm formation over the long term. Thus, it is recommended that in bicuspid aortic valve patients whose aortas are larger than that, the proximal aortic root be replaced as well. It’s more of a gray zone below 4.5, but I’ve cared for patients who’d had smaller aortas at the time of bicuspid aortic valve replacement, and then a few years later, needed to go BACK to the OR for replacement of an ascending aortic aneurysm. That is clearly a sub-optimal situation. With you proximal ascending aortic measurement of 4.6 on your recent CTA, it is most prudent to replace both the valve, root and proximal-most portion of the ascending aorta."

My surgeon (Feb. 16), Dr. Grayson Wheatley at Temple University in Philadelphia is publishing a series of commentaries on aorta pathologies. His web site is here:
http://www.badaorta.com

Annuloaortic ectasia and sinotubular efacement are Marfan-like pathologies of the aortic root.

My 66th birthday today...got this great card from my husband..I'm damaged but hanging in there!

This afternoon Dan and I met with a surgeon at the Temple University Heart and Cardiovascular Center in Philadelphia. This surgeon was recommended by my cardiologist. This was my second surgical opinion. I did some research on the surgeon I met with today and I was impressed with his credentials. Our meeting was intense, with a bombshell surprise: I would need a Bentall procedure, involving composite graft replacement of the aortic valve, aortic root and ascending aorta, with re-implantation of the coronary arteries into the graft. This complex and long operation is used to treat combined aortic valve and ascending aorta disease, which I have, apparently. This treatment plan was radically different from the first opinion that I got on Monday, where the surgeon suggested that my aneurysm did not need to be replaced, let alone the aortic root. The first surgeon wanted to do an isolated replacement of the aortic valve via a mini-sternotomy, and agreed to address my aortic aneurysm only after I insisted. The second surgeon today indicated that the valve and aorta needed replacement from the outset. The first surgeon suggested the need for circulatory arrest during the procedure, but the surgeon today stated that this would not be necessary. I find it interesting and a bit troubling that such divergent therapies can be suggested for the same pathology. But in fairness the first surgeon stated that he preferred a conservative approach. Today the second opinion surgeon seemed to want to correct as much as possible during open heart surgery. I come down firmly with the latter approach. I want the valve and the aneurysm taken care of, and if the aortic root needs replacement then so be it. Get it done. Therefore, I have opted to go with the approach outlined by today's surgeon and I have scheduled my procedure for February 16.

On Monday, January 5, I met with a cardio-thoracic surgeon at Penn Presbyterian Hospital, a branch of the Penn Medicine health care system in Philadelphia. Unfortunately, my husband and I were forced to wait over two hours past our appointment time before we finally got a chance to talk to the doctor himself. While the consultation was valuable in terms of adding to the information we need to make decisions about my surgery, we both felt that this particular surgeon would not be the best choice for me, and we were disappointed in the way we were treated at the facility. Unlike my meeting with another surgeon back in 2009 at a different branch of Penn Medicine, this doctor was at least personable, honest and sincere. He was also willing to listen to our concerns and to try to accommodate my wishes in terms of how I view the procedure I need. In particular, while he initially indicated that his conservative approach would be to not address my 4.6 cm aortic aneurysm at the time of AVR, he agreed to replace it after I indicated that I wanted it addressed. At first he told me "I don't think it will give you any problems." Perhaps not, but who wants to have open heart surgery and not see the surgeon correct an aneurysm that could potentially dissect in the future or require another operation? This captures the difference between the approach of this surgeon and the approach that I need. I don't want a conservative approach. I want a surgeon with a proactive approach willing to fix as much as possible as long as he is in there. So Wednesday we meet with another surgeon at a different facility. Hopefully, the experience will be better and the surgeon will prove to be more in line with my needs and expectations.