It's been a while since I've had a chance to update my blog. Over the past couple of weeks, I've felt like I was a bit in limbo, as I worked through the system to continue pursuing the TAVR option for replacing my aortic valve, as opposed to open heart surgery.
My concern with open heart, which has an excellent track record for decades as a way of treating heart valve problems, is my history of chest radiation for Hodgkin's Disease. Doctors have told me this is a "wild card," because the radiation may have caused damage that could complicate surgery and make it more risky.
In order to be considered for a TAVR procedure, which would allow me to avoid some of the potential risks of surgery in my situation, I needed a second surgical opinion that put me in an "intermediate" risk category. (The first surgeon I saw considered me a "low risk" patient for surgery, meaning I would not qualify for TAVR, a procedure in which the new heart valve is installed via a catheter inserted in my femoral artery.)
This week, after a few starts and stops, I met with a second surgeon who in fact agreed that due to my history, TAVR would be a good option for me.
Now things are moving full speed ahead. Next week, I am scheduled for the full TAVR workup, a series of tests to prepare for the TAVR procedure. The following week, a panel of doctors will review my case and, hopefully, give me a green light to move forward. I have an appointment with the TAVR specialist, a doctor who has done more than 1,000 TAVR procedures, and if all goes well we will set a date for my procedure.
I am definitely less stressed out now that we have a definite plan of action. Until this week, I was anxious because things were so unsettled. I will feel even better once I have a date in hand and can prepare myself both mentally and physically for the upcoming procedure and the recovery beyond.
I am seeing a therapist to help me maintain a positive attitude as I work through this, and also continuing to practice my Buddhist chants and listen to guided imagery tapes to visualize a future in which I have a new, fully functioning heart valve and can resume the level of physical activity that I am accustomed to.
It's still a challenge for me to get a full night's sleep, as I was never a great sleeper in the best of times. I've tried Melatonin, and also Ativan, which my doctor prescribed, with mixed results. Any suggestions from those who have dealt with similar issues would be greatly appreciated.
Best wishes to everyone approaching their surgical date, or now in the recovery phase. Keep heart!
Thursday, June 29, 2017
Friday, June 16, 2017
A rotten week
Okay, I know I wrote earlier about the importance of maintaining a positive attitude. And I really have been trying to do that. But this past week has been a real test. And my attitude has taken a beating.
A quick recap... last Saturday night, after a very nice day in which I went for a walk at Miramar Lake and felt great, I started having a rapid heartbeat later at night and ended up going to the emergency room. When a blood test showed that my my cardiac markers, called "triponins," were slightly elevated, they decided to admit me for observation. They pumped me full of meds and by the time I was discharged on Monday, everything was looking pretty good, in terms of my vital signs, etc. But still a scary and not fun experience.
Later in the week, I developed a toothache and a trip to my dentist revealed that I have a damaged molar that will probably have to be pulled. I'm worried, of course, that it could delay things in terms of fixing my aortic valve and blockage. One more thing to fret about.
The capper came on Thursday afternoon, when I got a call from the surgeon's office. I had an appointment on Friday morning to get a second opinion that is required if I am to have the TAVR procedure instead of open heart surgery.
I was hopeful this consultation would help clear the way for me to move forward with the TAVR (transcatheter aortic valve replacement, in which the new aortic valve is threaded through my femoral article and put in place.)
Instead, I was told I had things out of order, and that I need to get a battery of tests BEFORE I see the surgeon, which is the final checkoff. Never mind that I had been told by my doctors that I had to see the surgeon first.
So now, at a glacial pace, (to me) I have to wait for next week till I can be scheduled for the tests I need, etc.
It was a blow that left me reeling, very depressed and having a hard time dealing with the entire situation. I know in my head that this only puts me about a week behind where I was, but it doesn't feel that way. It feels frustrating, and scary and just overall dispiriting. I cried for a while this morning.
One side note. A friend had offered us tickets to see the Dalai Lama speak Friday morning at UC San Diego. When I scheduled the appointment with the surgeon, we had to pass on the tickets. As it turned out, we missed both the Dalai Lama and the appointment with the surgeon. And I can tell you, I could have used the inspiration.
In the big picture, I just need to get things back on track and I will be fine. If the TAVR route doesn't happen, I will go back to the tried and true method of open heart surgery. A little riskier for me than TAVR, I believe, because of the radiation treatment I got in the 1980s, but still very doable.
So either way, my valve will be replaced and I will go on to a brighter, healthier future. Right now, though, I'm having a hard time embracing the positive. Hey, no one ever told me this would be easy.
A quick recap... last Saturday night, after a very nice day in which I went for a walk at Miramar Lake and felt great, I started having a rapid heartbeat later at night and ended up going to the emergency room. When a blood test showed that my my cardiac markers, called "triponins," were slightly elevated, they decided to admit me for observation. They pumped me full of meds and by the time I was discharged on Monday, everything was looking pretty good, in terms of my vital signs, etc. But still a scary and not fun experience.
Later in the week, I developed a toothache and a trip to my dentist revealed that I have a damaged molar that will probably have to be pulled. I'm worried, of course, that it could delay things in terms of fixing my aortic valve and blockage. One more thing to fret about.
The capper came on Thursday afternoon, when I got a call from the surgeon's office. I had an appointment on Friday morning to get a second opinion that is required if I am to have the TAVR procedure instead of open heart surgery.
I was hopeful this consultation would help clear the way for me to move forward with the TAVR (transcatheter aortic valve replacement, in which the new aortic valve is threaded through my femoral article and put in place.)
Instead, I was told I had things out of order, and that I need to get a battery of tests BEFORE I see the surgeon, which is the final checkoff. Never mind that I had been told by my doctors that I had to see the surgeon first.
So now, at a glacial pace, (to me) I have to wait for next week till I can be scheduled for the tests I need, etc.
It was a blow that left me reeling, very depressed and having a hard time dealing with the entire situation. I know in my head that this only puts me about a week behind where I was, but it doesn't feel that way. It feels frustrating, and scary and just overall dispiriting. I cried for a while this morning.
One side note. A friend had offered us tickets to see the Dalai Lama speak Friday morning at UC San Diego. When I scheduled the appointment with the surgeon, we had to pass on the tickets. As it turned out, we missed both the Dalai Lama and the appointment with the surgeon. And I can tell you, I could have used the inspiration.
In the big picture, I just need to get things back on track and I will be fine. If the TAVR route doesn't happen, I will go back to the tried and true method of open heart surgery. A little riskier for me than TAVR, I believe, because of the radiation treatment I got in the 1980s, but still very doable.
So either way, my valve will be replaced and I will go on to a brighter, healthier future. Right now, though, I'm having a hard time embracing the positive. Hey, no one ever told me this would be easy.
Friday, June 9, 2017
Change of course
Big news! Yesterday, I saw my cardiologist, Dr. Charlat, who was very supportive of my interest in pursuing a TAVR procedure to replace my aortic valve, rather than open heart surgery. He agreed that, because the potential tissue damage I may have incurred due to radiation many years ago, it makes sense to look into having the TAVR procedure. He was also on board with having the procedure done by Dr. Stinis and his team, who have done more than 1,000 TAVR heart valve procedures since 2008.
After meeting with Dr. Charlat, I came home and called the office of my surgeon, Dr. Stahl, to put off the surgery for now and cancel my June 27 surgical date. I need more time to complete the workup for a TAVR procedure, which consists of a series of tests to make sure I am a suitable candidate, help the doctors determine what size valve I need, etc.
In order to go this route, I need a second surgical opinion, and I set this up with Dr. Tyner, who is head of the division of thoracic and cardiac surgery for Scripps. Dr. Tyner comes highly recommended from a number of sources, including my wife, Ava, who worked with him at Scripps Green Hospital in La Jolla.
So, I am feeling cautiously optimistic that the TAVR procedure is a possibility for me, which would of course mean a less invasive way of replacing my aortic valve, quicker recovery, shorter hospital stay, etc.
If I do have the TAVR, Dr. Stinis and Dr. Stahl, the surgeon, would team up to carry out the procedure, and I am very comfortable with that.
Through all of this, I am trying to maintain an even keel in spite of the stress from the barrage of information I am dealing with, and the factors that are out of my control. To that end, I am taking advantage of a program offered through Ava's work, which allows for a limited number of sessions with a therapist. I'm hoping this will help me manage my stress and keep a positive attitude through all of this. I met for the first time with a new therapist yesterday, and it went well, so I will probably continue meeting with her periodically.
After meeting with Dr. Charlat, I came home and called the office of my surgeon, Dr. Stahl, to put off the surgery for now and cancel my June 27 surgical date. I need more time to complete the workup for a TAVR procedure, which consists of a series of tests to make sure I am a suitable candidate, help the doctors determine what size valve I need, etc.
In order to go this route, I need a second surgical opinion, and I set this up with Dr. Tyner, who is head of the division of thoracic and cardiac surgery for Scripps. Dr. Tyner comes highly recommended from a number of sources, including my wife, Ava, who worked with him at Scripps Green Hospital in La Jolla.
So, I am feeling cautiously optimistic that the TAVR procedure is a possibility for me, which would of course mean a less invasive way of replacing my aortic valve, quicker recovery, shorter hospital stay, etc.
If I do have the TAVR, Dr. Stinis and Dr. Stahl, the surgeon, would team up to carry out the procedure, and I am very comfortable with that.
Through all of this, I am trying to maintain an even keel in spite of the stress from the barrage of information I am dealing with, and the factors that are out of my control. To that end, I am taking advantage of a program offered through Ava's work, which allows for a limited number of sessions with a therapist. I'm hoping this will help me manage my stress and keep a positive attitude through all of this. I met for the first time with a new therapist yesterday, and it went well, so I will probably continue meeting with her periodically.
Wednesday, June 7, 2017
Plot complication
Yesterday, I met with an "interventional cardiologist" who has performed more than 1,000 of the TAVR procedures, replacing diseased heart valves through a catheter placed in the groin.
Based on that conversation, I want to know more about the procedure,to see if I would be a candidate.
The bottom line is that because I had radiation many years ago for Hodgkin's Disease, I could have scar tissue or other damage that would make surgery more complicated, and potentially more risky.
My surgeon, Dr. Stahl, discussed this possibility with me, and told me that it is impossible to know if the scarring is there until I am opened up during surgery.
The potential risk is scary, and after talking with the other doctor yesterday, I am having more concerns about whether surgery is the best option for me.
While that still may be the route I take, I want to explore more fully the TAVR option, to see if I might be a candidate for that.
The problem is, that in spite of the history of radiation, I am still classified as a low-risk for open heart surgery, and currently, the TAVR is only approved for intermediate- and high-risk patients.
The doctor I met with yesterday said that because of the radiation, I would not qualify for a randomized clinical trial in which low-risk patients have either a TAVR or open-heart surgery on a 50-50 basis. If that's the case, I would think that I would qualify for a TAVR as an intermediate-risk patient.
So, I will continue to gather more information and pursue the option of having a TAVR, and see where that leads me....
Based on that conversation, I want to know more about the procedure,to see if I would be a candidate.
The bottom line is that because I had radiation many years ago for Hodgkin's Disease, I could have scar tissue or other damage that would make surgery more complicated, and potentially more risky.
My surgeon, Dr. Stahl, discussed this possibility with me, and told me that it is impossible to know if the scarring is there until I am opened up during surgery.
The potential risk is scary, and after talking with the other doctor yesterday, I am having more concerns about whether surgery is the best option for me.
While that still may be the route I take, I want to explore more fully the TAVR option, to see if I might be a candidate for that.
The problem is, that in spite of the history of radiation, I am still classified as a low-risk for open heart surgery, and currently, the TAVR is only approved for intermediate- and high-risk patients.
The doctor I met with yesterday said that because of the radiation, I would not qualify for a randomized clinical trial in which low-risk patients have either a TAVR or open-heart surgery on a 50-50 basis. If that's the case, I would think that I would qualify for a TAVR as an intermediate-risk patient.
So, I will continue to gather more information and pursue the option of having a TAVR, and see where that leads me....
Monday, June 5, 2017
OHS or TAVR?
Now that my open heart surgery is scheduled for June 27, I am trying to mentally prepare myself for both the surgery itself and the recovery that will follow. I am comfortable with the procedure that I will have, which is an aortic valve replacement and bypass of a partially blocked artery. Also, I am comfortable with the surgeon, Dr. Richard Stahl, who will perform the operation.
But I still wonder if it would be better to have a TAVR procedure, in which the diseased valve is replaced through a catheter inserted into my groin, rather than having the full open heart procedure.
The advantage is a shorter recovery period and a shorter stay in the hospital; the disadvantage is that the TAVR procedure has less of a track record than OHS, and higher risk of some complications, such as valve leakage. Also, for a patient considered "low risk," such as myself, the TAVR procedure (which stands for transcatheter aortic valve replacement) is not approved by the FDA.
That means my only option, as I understand it, would be to enroll in a clinical trial, which is designed to determine the effectiveness and safety of the TAVR method for low-risk patients. Because the clinical trial is randomized, that means I would have a 50-50 chance of having either the TAVR or OHS.
With all this going through my head, I am scheduled to meet with an interventional cardiologist who is part of the clinical trial tomorrow. Right now, I feel it is likely I will go forward with the open heart operation, but I wanted to at least explore this other option before making a final decision.
When I talked about this with my primary care doctor a couple of weeks ago, she agreed it would make sense to learn more about the TAVR procedure. To that end, she found a doctor for me to talk to, and put in a referral.
While this is a big decision, I'm also still wrestling with the question of whether to get a tissue or mechanical valve.
As I have written about before, the tissue valve (from a cow or pig), does not require the patient to be on blood-thinners for life. However, for someone of my age (56), it would last 10-15 years, and I'm not crazy about the thought of a potential second operation when the tissue valve wears out.
A mechanical valve lasts much longer, 20-30 years, but patients must take blood thinners, which could impact my diet and activity level and would require regular blood tests to make sure the dosage is correct.
A lot to think about...
But I still wonder if it would be better to have a TAVR procedure, in which the diseased valve is replaced through a catheter inserted into my groin, rather than having the full open heart procedure.
The advantage is a shorter recovery period and a shorter stay in the hospital; the disadvantage is that the TAVR procedure has less of a track record than OHS, and higher risk of some complications, such as valve leakage. Also, for a patient considered "low risk," such as myself, the TAVR procedure (which stands for transcatheter aortic valve replacement) is not approved by the FDA.
That means my only option, as I understand it, would be to enroll in a clinical trial, which is designed to determine the effectiveness and safety of the TAVR method for low-risk patients. Because the clinical trial is randomized, that means I would have a 50-50 chance of having either the TAVR or OHS.
With all this going through my head, I am scheduled to meet with an interventional cardiologist who is part of the clinical trial tomorrow. Right now, I feel it is likely I will go forward with the open heart operation, but I wanted to at least explore this other option before making a final decision.
When I talked about this with my primary care doctor a couple of weeks ago, she agreed it would make sense to learn more about the TAVR procedure. To that end, she found a doctor for me to talk to, and put in a referral.
While this is a big decision, I'm also still wrestling with the question of whether to get a tissue or mechanical valve.
As I have written about before, the tissue valve (from a cow or pig), does not require the patient to be on blood-thinners for life. However, for someone of my age (56), it would last 10-15 years, and I'm not crazy about the thought of a potential second operation when the tissue valve wears out.
A mechanical valve lasts much longer, 20-30 years, but patients must take blood thinners, which could impact my diet and activity level and would require regular blood tests to make sure the dosage is correct.
A lot to think about...
Friday, June 2, 2017
Now this s**t is getting real
I now have a date for my open heart surgery. June 27 is when I will show up at the hospital at 5 a.m., be prepped for surgery, and wheeled into the operating room. It is a date that I both dread and look forward to with a sense of anticipation.
Dread, because in spite of the high odds this operation will be successful, this is a big, scary deal. And anticipation, because once I get through this, I will have a brand-new heart valve, and with it, improved physical vitality and energy and the possibilities they provide.
As I waited to see my surgeon yesterday, I felt anxious. Two days earlier, an angiogram revealed a partial blockage in one of my coronary arteries. I was sure this discovery meant that my surgery would even riskier and my odds for success lower.
But Dr. Richard Stahl, who will operate on my heart later this month, exuded calm confidence, reassuring me that the bypass - in which a vein from another part of my body is installed as a detour around the offending blockage - is something he and the surgical team can easily handle along with the replacement of my aortic valve.
He told my wife and I that he has completed more than 1,000 heart valve replacement surgeries during his 31 years in practice, which also made me feel like I will be in good hands.
Between now and my surgery, I will continue to work to maintain a positive attitude. I know this will get harder and harder as the date approaches. I will visualize a successful outcome to my surgery and the recovery period that will follow. I will also focus on the future beyond my surgery, to keep in mind the "prize" that is the reason for going through all of this in the first place.
A shout out to my good friend, Wendi, who practices Buddhism, and is channeling energy during her daily chants toward my successful surgery. She has also taught me how to do my own chants, which I will definitely incorporate into my other meditation exercises.
One other silver lining - as soon as I got the date for my surgery, I bought a ticket for my daughter, Salome, to fly home from Berlin, where she is studying abroad during her junior year of college. She will be with my wife and I during and immediately after the surgery, which will be a great comfort.
My thoughts go out to everyone who is either facing a similar surgery in the near future, or who has recently undergone a heart operation and is now on the mend. Good health to all of you! We will get through this!
Dread, because in spite of the high odds this operation will be successful, this is a big, scary deal. And anticipation, because once I get through this, I will have a brand-new heart valve, and with it, improved physical vitality and energy and the possibilities they provide.
As I waited to see my surgeon yesterday, I felt anxious. Two days earlier, an angiogram revealed a partial blockage in one of my coronary arteries. I was sure this discovery meant that my surgery would even riskier and my odds for success lower.
But Dr. Richard Stahl, who will operate on my heart later this month, exuded calm confidence, reassuring me that the bypass - in which a vein from another part of my body is installed as a detour around the offending blockage - is something he and the surgical team can easily handle along with the replacement of my aortic valve.
He told my wife and I that he has completed more than 1,000 heart valve replacement surgeries during his 31 years in practice, which also made me feel like I will be in good hands.
Between now and my surgery, I will continue to work to maintain a positive attitude. I know this will get harder and harder as the date approaches. I will visualize a successful outcome to my surgery and the recovery period that will follow. I will also focus on the future beyond my surgery, to keep in mind the "prize" that is the reason for going through all of this in the first place.
A shout out to my good friend, Wendi, who practices Buddhism, and is channeling energy during her daily chants toward my successful surgery. She has also taught me how to do my own chants, which I will definitely incorporate into my other meditation exercises.
One other silver lining - as soon as I got the date for my surgery, I bought a ticket for my daughter, Salome, to fly home from Berlin, where she is studying abroad during her junior year of college. She will be with my wife and I during and immediately after the surgery, which will be a great comfort.
My thoughts go out to everyone who is either facing a similar surgery in the near future, or who has recently undergone a heart operation and is now on the mend. Good health to all of you! We will get through this!
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