Tuesday, May 26, 2009

The Quantum Wellness cleanse, day 1

Several weeks ago the X and I were talking and he told me about this new book from Kathy Freston which apparently is all the rage on the talk show circuit. Everyone knows by now I watch no TV, and that means none, I only have a TV in my house for boyfriends and petsitters; furthermore, it pisses me off to pay the cable bill each month just for the aforementioned two reasons. And really, when SOs have been over the house now and in past lives, they are/were not sitting around watching TV. But anyway, I have basic f'ing cable, and I had no idea who Kathy Freston was. You can check out her website here, where it discusses the book in more detail.

Essentially Kathy has figured out a way to package the advice of many health gurus, practioners, and authors who have come before her (she quotes many of them) and she recommends doing a 3-week cleanse at least once a year. During this cleanse, you banish the Big 5 from your diet for 3 weeks. These are:

  1. alcohol

  2. caffeine

  3. sugar (all forms except Agave Nectar, which is unrefined and has a low glycemic index)

  4. animal products (meat, fish, dairy, eggs, etc.)

  5. gluten (wheat, barley, rye) oats are OK

Anyway, Max said that he and two of his clients were going to take the challenge of the Quantum Wellness Cleanse. Now I had not been feeling right since the surgeries. Perhaps it was being on Darvocet for a week, or not exercising much for 2, or a result of my hormones being all wacky lately...whatever, I have gained 3-4 lbs since the surgery and I am just not feeling right.

So I surmised that for me, the cleanse would not be a huge undertaking. Really, a plant-based diet of no sugar, gluten, animal products, caffeince or alcohol was not such a huge change from my normal diet....with a few exceptions. Yes I do probably eat as many or more vegetables than your average vegan, whose diet might tend to be heavier on the grains than on the green leafies. I love to eat all vegetables, especially non-starchy ones, so much that when I have dinner guests they often tell me how, um, regular they are for several days following the repast. Alcohol I basically stopped drinking because it made my heart block more often. It's a habit I have not gotten back into since I got my pacer. I eat much less meat than I used to, and enjoy cooking meals using tofu, tempeh, or beans instead. Refined sugar is practically banned from my regular diet....although...I do like to have a big mug of coffee in the morning doused with 3 heaping spoonfuls of, you guessed it, raw sugar. When I go out to breakfast on a weekend, as soon as I walk into the establishment I scan those little ceramic sugar holders on all the tables to make sure they are bursting with little brown packets. If not I ask the waitperson to bring me some; and if they return with 2 or 3 packets I sheepishly apologize for being a "sugar whore" and I tell them I need 5 more packets. Really.

Caffeine is going to be the hardest sacrifice for me, mainly because it is my only addiction, and it is a strong one. Even though I only have one mug of coffee in the morning, or in the afternoon on the weekends following a 5-hour ride, I shamelessly use it to regulate my moods. I had started taking Wellbutrin to help with life's stresses lately, but the combo of wellbutrin and caffeine is too much for my dopamine and norepinephrine receptors to handle. If I have too much coffee I have a very hard time concentrating on anything; I am so revved. Anxiety then sets in for a person who often defines her self-worth based on how many items she can cross of her to-do list. I need to work on that.

So I was looking for some excuse to experiment by cutting it out....and here was a good one. On Saturday I changed to tea before the ride, and then I went home without stopping at La Colombe for my usual double latte afterwards. I was gardening later and I felt like I had rubber for arms and legs, I mean I had NO ENERGY. Ugh, and I had had tea that morning. Sunday I did the same, a cup of tea, and yesterday, well yesterday I went cold turkey on Memorial Day. No coffee. And no barbecue for me. I am a bit irritable and have had headaches on and off...but I am pretty excited about the cleanse and all the new recipes I will be making in the next 3 weeks. The next few days are going to be tough without coffee....especially at work and before morning workouts, but I am really looking forward to being free of it. More on the Cleanse in coming days.

Wednesday, May 20, 2009

pacer adjustment #4 - the field test

ha ha Dr. Mark Mantell, MD, FACS Clinical Associate Professor of Surgery and Director of Vascular Access relegated to "my personal trainer"
....so after this latest dissapointment I emailed Callans and offered to bring my bike into the lab so they could see what was really going on with my heart; the PowerTap HR monitor was just not cutting it. I thought of this while on the phone with Zola (that night at Tangerine) and he said that they probably would not let me do it because it would take up too much time. To my great delight Callans thought it was a capital idea and he arranged for me to come into the lab with Mel (Melissa Cliver, CRNP Nurse Practitioner Cardiac Electrophysiology) and Dr. Riley as Callans was going to be out of town at a medical conference. So Mark helped me carry my bike and trainer into 9 Founders and they hooked me up to a monitor and the Medronic machine and I started pedaling. It was really hot in the room, so my HR rose very quickly.
Within 3 minutes I was able to block at a heart rate of 174. No shit! It was hot in that room. And so it went, for an hour, with me blocking three times and Valerie, Mike Riley and Mel Cliver gathered around the monitor. It was pretty cool being in there and finally being able to show them what was going on out on the road in an attempt to get the device dialed in. Also it allowed me to compare what the PT monitor was showing as opposed to the Medtronic monitor, which is more accurate. I could glance over when I was riding and see exactly when the pacemaker kicked in. After an hour I got off the bike while they conferred, called Medtronic, and moved through the various screens of the software over and over as they intently studied the printout generated from the machine. They asked for a higher level of support at Medtronic, and Valerie seemed a bit irritated when she did not get that immediately. I was just taking it all in, wondering if they would ever really be able to dial this thing in for me or not. And if they could not; I wished they would have told me that so I could have made a more educated decision. I was told that the pacemaker was going to cure this disease of my conduction system and I would be 99% as good as before. But Dr. Callans, who is, after all, Director of the Department of Electrophysiology at HUP, was very encouraging, so I put myself in his hands. No negative thinking at this stage.

hopeful and fearful at the same time...and a little tired.

the crew at an impasse, asking to speak to bypass the plebians and jump to top level support; I feel like I have been there a thousand times when calling verizon dsl. Anyway...

So after about a half hour I got back on the bike and started pedaling again. This was, after all, today's workout. I blocked at 172, and then they made another adjustment. They asked me to try one more time. At this point, my legs were tired. My heart was tired from blocking. And I was a little depressed. I cranked it up more gradually this time, instead of spiking up to 440 watts, I just brought it up gradually over 200, then up by 20 watt increments...on up to 260...I felt the flutter which they later told me were PVCs, and my PT showed a block (HR stepped down to 82) but all of them were standing around saying "that's all you! you are not blocking..." It seems one thing I learned from this test is that the PT HR monitor was reading my instrinsic ventricular beat and not picking up the paced beat. I needed to be aware of that and go by feel, or else I could be losing power not from a physiological phenomenon but because of a psychological one. In other words, I am psyching myself out in anticipating of the block.

So the good news is that they made another change, still left me in DDD mode, and were waiting on a couple of questions from the techs at Medronic. They told me there was still tweaking to do but to go out and ride and report my findings; the change they made today should make it much better.

Go forth and ride. I can handle that. It's just a process; that's all. I just have to be a patient patient. Not so easy for me.

Monday, May 18, 2009

DDD mode

Rode my regular main line route w/saw mill climb. It was so great to be riding outside on a beautiful day. Kept in in endurance zone but did push it a few times and I blocked. The pacemaker and my heart seem totally out of sync, it is sort of disheartening, I guess that was a pun. ugh. They reset the mode to DDD (dual paced) on thursday but I am still blocking, although this time it was different, it went from 160, to 130 and that was it (it still sucked) the second time I dropped to 143 for a full 30 seconds, then stepped down to 105. I'm not blocking 2:1. Texted Zola and he said that they just need to change some settings, not to worry. I am still bleeding heavily from LEEP and period so I got tired midway through ride. Lost a ton of blood the past 3 days.

[Uploaded 5/11/2009 10:34:16 PM]

need I say more? I was a little upset on saturday night, Mark and I went out to dinner and then he got annoyed that I was on the phone with my cardiologist while sitting in the lounge at Tangerine. All I can say is when a cardiologist calls me I pick up the phone.

Thursday, May 14, 2009

the beginning 7.6.08

I rode alone, but because of the impending rain opted to do the shorter, 60-mile route. This is a pretty hilly route (at least the first 30 miles) and I was pushing pretty good on the hills. The 7-lb weight loss has made a huge difference on the hills. I feel really good climbing for the first time in forever. On the way back on the bike path I passed a guy and he grabbed my wheel. I was pushing pretty good into a headwind at subLT and after 10 mins I got that weird flutter in my heart, then my heart rate drops like a stone and I feel weak. It happened several times on this ride, starting at 2:23. I have to pull back because my heart is not beating fast enough to get blood to my legs or something. This also happened on 6/28 at 2:39. I definitely like riding by myself because I can push hard when I want to and not worry about dropping anyone, but this heart thing is freaking me out.
I did the last half hour at recovery pace down to art museum and back.

[Uploaded 7/7/2008 11:43:49 PM]

note the red heart rate line dropping in half, and then shooting back up again.

Tuesday, May 12, 2009

pacemaker adjustment #3

Got to HUP on Thursday the 7th with my laptop in tow to show Dr. Riley what had happened in class that morning. I knew he was a cyclist, so I figured he would have a very good understanding of the demands of my heart.

I got into the office and the Tracey Munson the nurse-practioner greeted me.
I showed her my power files and explained the difference between what happened today and what happened before the surgery. I explained that today it was like there was a little battle going on between my heart and the pacer. But there was no doubt in my mind that I had blocked, and that at least one time I blocked 2:1, because I had felt it. Sometimes the Power Tap HR monitor does not catch my correct heart rate all the time, but there is no mistaking that feeling in your chest, and then in your whole body, when your heart rate drops from 164 to 82 in about a second. I also complained about the pulsing I was experiencing in my diaphragm, perhaps from a stimulation of the phrenic nerve, although Zola later told me this was bullshit, it was not the nerve. Anyway.

She listened intently, and had the Medronic "suitcase" next to me and placed the programmer transponder over my incision. First she paced my heart with each lead independently to see which one was causing the pulsing, despite the fact that it is usually the Atrial lead, on me is was RV (right ventricle). Hmmm, I do not fit into the normal pacemaker recipient profile. Go figure. The RV lead created the pulsing which I had her feel just by putting her hand on my ribs. It was pretty severe, like having a case of the hiccups. She then adusted the voltage down from 4.0 volts to 1.25 until the pulsing stopped. One obstacle cleared.

She checked frequency and impedance and it did not appear that either lead had slipped. I was greatful for this, because my biggest fear was having to go through that surgery again. She was looking at the screen, then she stopped, looked up at me, and said, “wait! I think I know what is happening here.”

She explained that the Medtronic Adapta has a function called MVP mode to prevent the ventricle from being paced all the time. This mode prevents this RV pacing unless you really need it. (see below)

Dr. Riley came and was very grateful for the Power Tap graph because he was able to compare pre and post op graphs. It seemed as if (from the graph) that what happened today this morning in class was not 2:1 but 4:3, then 3:2, so there was some discussion about what mode they needed pacer to be in to keep me from dropping like that. He put a call into Dave Callans who is in surgery all day and they left the room.

Then Dr. Riley came back and sat down with me and explained to me that the pacer was defaulting to MVP mode because they normally do not pace both chambers of the heart at once. The reason they do not pace both chambers at once is twofold. First off, since any pacing of the heart is not the organized cascade of impulses that occurs with your intrinsic impulses from the SA node, when you are paced it can feel as if your heart is a little out of sync, and this is even more of an issue when the heart is paced from the atrium and the ventricle. Bascially, the heart is being paced from the muscle, not from the natural nerve conduction system. The second issue is that there is a slight risk of the heart actually weakening if the heart is dually paced. They are not sure why it happends in some patients. Later I spoke to Zola about this and he said it is a non-issue in an athlete.

So he turned off the MVP mode, and I was now in DDD mode. I was hopeful. More to come.

Friday, May 8, 2009

guess it was more like "rude awakening"

...perhaps I spoke too soon, with my effusive thank you to all 7 of my cardiologists. The very next morning after I posted I got up at 5:30 and drove to Cadence (because it was still raining after something like 10 days) I decided to take class. I heard it was a tough one.

Got to Cadence a few minutes late so did not get a great warm-up, but did some overgear intervals. I was giddy in class; there had not been a class in the last year 8 months that I did not leave at best, incredibly frustrated and at worst, demoralized and in tears. Then we started doing LT and superLT intervals, the kind I have not been able to do in ages, because it is the extended ones at high power/HR that make my heart block.
The first interval took place and it was about 4 minutes at my new LT of 180 (LT now stands for low-T) A long drop from 208 in October but like I said before; who cares I'll get it back. Then there was a break, and we moved into the second interval, which was superLT.
I felt my heart rate rising as usual, then gradually I felt I was being paced atrially, and suddenly....I felt that telltale flutter and I thought; OK, I am being paced...or am I? .... because I felt weak and then my heart and the pacer seemed to be having a power struggle.
Then my heart rate dropped to 132....for about 40 seconds while I backed off the interval (because I was too weak to continue) and then it came back up to 144. Great. I thought I went through all this hell and twenty thousand dollars to prevent this shit from happening....
The second block happened from 165 down to 97, then it dropped further. At this point I wanted to make sure I got a good reading to show the doctors; so I kept pushing as hard as I could for as long as I could, so that the graph would show that at the same power output my heart rate plumetted on its own. This is exhausting.
I sent an email to my Mark, as well as my friend and cardiologist Ben Zola, who had first diagnosed me. He told me not to freak; they just had the settings wrong. I got home and emailed Dave Callans and literally 10 seconds later my cell phone rang. It was a phone number from HUP.
Whoa, I had not expected a response that fast.
It's easy to lament the physical limitations you have when some organ in your body is not performing properly; or when you succumb to some illness. But the emotional strain can be even more painful, if not more debilitating.
In those moments after I had hit "send" and I skipped down the stairs to feed the dogs--it hit me that the journey was not in fact over. After spending the frenzied hour after class sending urgent though somewhat comical text messages to Kuhn and Mark and others about how my pacer was not actually working, (ha ha how ironic!) I had just, for a second, allowed myself to burst into tears.
And as I mentioned above, at that second the phone rang. It was Dr. Callans. Probably not such a bad thing for a doctor to become face to face with the raw emotion of his patient. I am lucky enough to be in the care of a doctor who is not only very skilled but is compassionate and a good listener. But then he is extraordinary.
He told me that he would be in surgery all day but I could come in and see his associate, Dr. Riley. Mike Riley is a cyclist, and a friend of Alaina Gurski's who I had met on a ride earlier this year. I was delighted to be able to finally meet him. So I packed up my laptop and headed back to HUP, quite hopeful.
Mark had called it a week ago. He told me there was a 50% chance that the pacer would need to be adjusted for it to work properly for me. They are just not used to pacing someone with my weird heart block.
So it iis just a matter of trail and error I guess. Stay tuned.

Wednesday, May 6, 2009

5.6.09 the awakening

Today, the long nightmare that started on 6.28.08 came to an end.

Because of a miracle of modern western medicine, a tiny little device the size of two silver dollars pressed together; I was able to overcome a rare heart arrhythmia and will now be able to resume my active life.

Today we tested the pacemaker in a lab at Cadence, as I was finally strong enough to ride at more than a recovery pace. For the first time I felt what it was like to be paced for a duration of over 15 minutes.

Having the pacemaker create the contraction in my ventricle is not the same pathway as if my intrinsic conduction system caused the heartbeat. It actually hurts a little when I am paced for an extended period. There are a lot of electrical impulses going through those leads in my veins and into my heart muscles.

My LT did drop 30 watts since December. But who the hell cares? I can actually train now. In another month I will be back on the mountain bike and I can't even imagine how sweet it will be to bound up the rock steps in the Wissahickon without going into heart block.

I am truly incredulous. And grateful.
This whole story, which I will be writing about as the next several weeks unfold, has been a long, confusing, frustrating, and disjointed journey. I am truly grateful to everyone in my life who helped me during this process; and who supported my decision to be able to continue my cycling lifestyle by getting an implantable medical device.
Especially Mark, who has been an incredible caregiver (I can see why he is "Best of Philly"), Benjamin Zola, M.D, who understood the complexities of the endurance athlete's heart (being one himself)
David Callans, M.D, the pacemaker guru who implanted my device;
my parents, who feared I was making a poor decision and who loved me enough to tell me so; my sister Sabrina, who really is the best little sister one could ever be stuck with;
Grant Calder, who connected me with Dr. Zola,
James Wilson, M.D., Ph.D., who I ride with on Tuesday nights and who connected me with Dr. Callans;
my coach Mike Kuhn,
my brother Colin; and many more who helped me along the way**

Thank you from the bottom of my bionic heart.

** some others
Donald Yih, MD
Steven Rothman, MD
Charles Leng, MD
Dr. Scollan
many many cycling friends
and last but not least, Max Calder, who was there at the very beginning, when we were both totally in the dark

Saturday, May 2, 2009

rocky and bullwinkle

I got home from work Thursday, dog-tired. My body needs to rest, but work has been very demanding and I just can't take a few days off. So I walked in the front door to the usual cacaphony of dogs barking with delight at my arrival. I had noticed that the hole in my porch roof that had hosted a starling nest for the past 3 years had now become a squirrel nest. The other day I saw a mama squirel clabbering down the old drainspout on a quest for food. I am not very fond of squirrels. They are the bane of gardeners everywhere, myself included.

I walked back out on the porch to grab the mail, and suddenly there was the scurry of little feet. I glanced over to see a tiny baby squirrel diving off the side of my porch. Wow, they were cute. A closer glance and I saw what looked like a dead baby squirrel dangling from one arm from beneath my plantstand. I walked over to get a closer look. The poor little thing must have fallen off and it's claw got caught in the joint of where the two metal pieces fused together. I cradled the little guy in my hand. He was breathing. I wondered how long he has been hanging there. Probably only seconds... he would not last long this way.

I reached my other hand over and tried to gently pry his little hand loose. It was really wedged in there. I tried to use my right hand to see if I could pry the metal apart. It was not budging. I knew Mark was on his way over, so I waited. And waited. I talked to the little guy and got him to calm down. Ten minutes went by. He looked like he was sleeping. Although he did not weigh much, I was supporting him with the arm that had just been involved in my pacer surgery, so I knew I could not stay there indefinitely. After another ten minutes with no help in sight, I gently coaxed his little claw open as it had finally relxed enough, and suddenly he was free, with only a tiny nick that was barely bleeding.

Boy was he tiny. And tired from his ordeal. I put him down on my planter beneath the nest, but I was afraid the cats would get him. He was not moving. So it was getting late, so he spent his first night in captivity because I could not bear to have my neighbor's cats eat him. Then again Madison would love to eat him I am sure, so he spent the night in the vestibule with the dogs ocassionally sniffing underneath the door to let me know that they were aware that something TASTY was right behind the door. He seemed pretty happy to curl up and go to sleep:

Mark named him Rocky.

The next morning I refilled his food and put him out on the porch. I thought I should let him go, so I lifted him up and put him on a planter. He ate some food, then fell asleep, right in an area frequented my cats! He was exhausted, so I picked him up and he decided to crawl inside the sleeve of my sweater:

Finally I pulled him out and decided it was not safe to leave him exposed like that.

I made a little cardboard house for him with a very soft blanket inside and a little baby-squirrel-sized door and I kept some water and peanuts next to it. Soon we discovered that Bullwinkle liked the nesting idea too:

The next thing I knew we had 4-5 tiny squirrels nesting in the box. I fed them for several days until they were strong enough to go out on their own, which they did. I still see them around sometimes, getting fatter by the week. Anyway, it was a fun distraction from other matters.