Friday, April 21, 2017
I want to run
I want to hide
I want to tear down the walls
That hold me inside
I want to reach out
And touch the flame
Where the streets have no name
So I saw the EP today to check on the implant and ask a boatload of questions about what my body is doing......mostly good news, with one BIG IF.....
My afib is now down to 4 tenths of one percent of my day. My longest single bout since the implant has been 16 minutes total, with the majority lasting a minute or less. The majority of my afib is also happening during exercise. I am at ten weeks post ablation on monday, so my official blanking period ends in two weeks from then. Improvements or regression can occur for another three months after the blanking period. Everyone, as old George Sheehan once said, is an experiment of one. I explained what I am attempting to do with the jog walks, and he said to start to push on it a bit in small increments, not to be too scared. He also told me to get back to the gym, so I will go on monday and go very easy. High reps with low weights. My echo is scheduled for May tenth, and he told me he would call when he got it, to save me a four hour round trip. He is expecting it to go up from 38%, but told me not to get too hopeful that it would get into the normal range above 50% just yet. He reminded me again that I am still a cardiac rehab patient. So that leaves us with the BIG IF....my previous echo noted that my left atrial wall was not moving properly, and that is where the other cardiologist noted that I have some cardiomyopathy, a thickening of that wall. The question is, with the arterial flutter gone and the afib managed to a very low level, will that wall begin to operate more normally again, or are the changes more permanent. I will get a hint at the next echo, but will really only know if my heart allows me to get past the walk jogs and start to increase the jogging segments. He reminded me that this, even if it works, is going to be a long recovery process. My patience has been good so far, and I am resigned to just try and do what I can do....as Bono says, "it's all I can do"....
Wednesday, April 12, 2017
So I am trying to be patient (not a strength), but still feel like something is missing in all of this. As I noted in the last post, my Afib is running at around 2% or so, my implanted monitoring device is healing, and I am trying to follow the EP's cardiac rehab advice. I walk twenty minutes as fast as possible. HR runs mid 110's. Then I start jogs. Within a very short time, I jump to around 140. I return to walking, but my heart rate lags and jumps somewhere between 150-160. When it is back in the 110's, I rinse repeat. This lasts for about forty minutes. Then my HR stays high for a good hour or so, until it returns to a more normal range. Have not returned to the gym, as the EP said to wait two weeks so when I start I don't blow my Qlink out of my chest....that would be awesome! Anyway, he told me that I had to approach this like a cardiac rehab patient...someone returning from a heart attack. What a freakin' drag. So I see him on the 21st to check on the implant, then have the echo scheduled for may 10th to see if my ejection fraction has returned to something approaching normal. So by mid May, I should have a better sense of all of this. If things have not improved substantially, still considering a visit to Mayo in Phoenix for a full cardio workup, unless the EP has someone in El Paso who could do something comparable. As I have said before, If I am suffering some form of heart failure or severe cardiomyopathy, I do want to know so that I can consider all options. Until then, I will continue to rinse repeat.....
Tuesday, April 4, 2017
On monday, I had my monitor inserted for the next three years of recording. They numb you with novocaine, then drive this under your skin like a big needle, and then press the plunger to drive the device under the skin of your chest. Doctor makes you wear a cover over your face so you don't move....I wanted to watch, but no go. When doc came into the catheter room, he made a joke that he was just watching a video to learn how to do this. My cardiologist is a freakin joker. For whatever reason, maybe the lidocaine, my BP went crazy for an hour or so after. Wouldn't let me leave until it came down. It is higher in general since the ablation. I have had to double my lisinopril (have a lot extra) until I see my regular doc in may. They glue the incision shut, so you have to be a bit careful for a few days. Also, no heavy lifting. Slightly swollen, bruised, and sore. There is a base station next to the bed that takes the days data, loads it, and sends it to some guy in india who sumarizes it and sends it to the doctor.
I get a new echo done on wed 4/12 to see if my ejection fraction improves from 38% on my birthday when I was in flutter and afib. 50% would be normal for my age, so since I am still in afib, hope I at least get closer. Doc says that my month of holter monitoring showed that I was in afib about two percent of the time. He still has faith that I will improve more over the next 5 weeks of the blanking period. I am just all doubts. I am expecting, at a minimum, a second ablation. I am also in the early stages of cardiomyopathy, so the afib may just be secondary to that. I was considering going to Phoenix to get a full cardio workup, but my doc said wait until we see the second echo results. As I told Deb tonight, I don't want my whole life to be dealing with this illness and staring at my wrist to see what my heart is doing. That would just not be a life worth living. So if someone tells me I am suffering heart failure, I will throw the watch away and just try to enjoy the days that remain. Carpe Deum.
Monday, March 13, 2017
When I thought how my running career would probably end, I expected it to be an orthopaedic problem, not an issue with my heart! Surprise! When I was getting spine and knee surgeries, I visited those sites that had blogs about procedures I was considering to get some real patient experiences. What I found, is that people who had success, the great majority, soon disappeared from those sites. Those that remained were the ones without success. Lately I have been reading and posting on StopAfib.org, and in similar fashion, those that I am communicating with are those with more complex Afib issues that they have not been able to be easily corrected.
It was exactly 4 weeks today from my Afib ablation. That is a third of the way thru my blanking period. I have gotten absolutely no resolution from the procedure, nor from two different medications that I have tried. There is a third medicine that I will try from my formulary when I see the EP doc on the 31st, while I am getting the small device embedded in my chest to follow my pulse for the next three years. There are folks that have tried 5 medicines, 5 or 6 ablations, 10 diversions both chemical and electrical, and lots of folks who finally relented, had their AV node ablated and a pacemaker installed. I am considering one more ablation if I get improvement from this current one, but if not, want to move to the much more invasive mini maze surgery from a thoracic surgeon. I will not make ablation a freakin' hobby. Don't have that many years left. So, the beat goes on....just irregularly!
Friday, March 3, 2017
Tuesday, February 28, 2017
Well, it has been two weeks since ablation. Symptoms the last few days are actually worse. Cardiac EP was surprised that I did not get some improvement to date, but everyone is different. Most high volume ablation centers post that they ignore any A-fib episodes for the first 8 week blanking period to allow the swelling in your heart to subside, and to see if the scarring covers the spots where the crazy cardiac firing is occurring. From reading blogs of ablation patients, many get much worse the first month before they get any better. In the mean time, I am awaiting UPS to deliver a temporary telemetry device that is about 4 inches bye 3/4 inch that you stick on your chest to send your heart data to the docs. They want to see if your A-fib is improving at all. On March 31st, they will implant the device pictured above under my skin above my heart. It is about 3/4" long and the thickness of a pen barrel, and is highly sophisticated. It reads 24/7, downloads data to your doctor weekly, and reads for up to three years. It also tells them how much of your day, your percentage, you are spending in A-fib to see where you are headed. It leads me to believe I am in this for the long haul! So the progression of this process would possibly lead to another ablation, a mini matrix surgical procedure, and finally a procedure where, if all else fails, they burn off your main cardiac signal node and put a pacemaker in you. That is the last resort end game. So, will I ever get to run again, who the fuck knows. Add to that, I go in march 9th to see Murphy about getting a CT scan to see about the spot on my lung discovered during my ER visit from February 16th. So, it is a lot to deal with now, and I have that wonderful feeling of powerlessness that comes with things your body does that you have no control over. So, all I can do is wait and see, and I am not the most patient person with that......
Saturday, January 14, 2017
Saw this yesterday evening on seinfeld rerun.....always loved it, but didn't quite understand it. From a real court case in Australia, and an early movie from Meryl Streep!
Saw the electrophysiologist cardiologist in El Paso on Thursday, and we will move ahead with the ablation procedure. The February schedule is not set up as yet, so they will call early next week to schedule me. These 2 guys just do a damn shitload of these and cardiac device implants. So, I will get in when I can. Not looking forward to the procedure itself or the first few days afterward, but will find out if I am on the right side of a fifty fifty coin flip. Would do it twice if needed, and if that didn't work, would be stuck just living with it. Sure miss running and weights as I am reduced to an hour walk each day.....but, such is life......gotta just do my best to accept the results and learn to roll with the punches........