Vitals Pre- and Post-Cardiac Rehab

Hahaha, remember my previous post here where I talked about all the crazy stuff I was able to do in 5 days and not die thanks to the exercise I was doing?! And then how I said, "Hopefully, it won't take me another two months before I sit down to write about [the program again]"?!

Well, at least I was right in that it didn't take me two months...

But, honestly, though I do feel a bit guilty about my slacking, I can say it's happened because I've been out like, doing stuff y'all. This summer... I'm honestly getting all verclempt just thinking about it. Aaah! Talk amongst yourselves! I'll give you a topic!

Oh geez, I just realized some of you may not even get this reference... #Imold

Oh geez, I just realized some of you may not even get this reference... #Imold

Seriously though, I'm sitting at my kitchen table almost in tears about it. I can't even begin to explain what this summer has meant to me. The fact that I've been able to play soccer three times a week in the heat of the South with people who have become like family to me... and the acceptance and understanding I've received... the growth I've gone through...

Ok, they are actual formed tears now so here's another Linda Richman/Mike Myers gif:

                                   Rhode Island. Neither a road nor an island... DISCUSS DISCUSS

                                   Rhode Island. Neither a road nor an island... DISCUSS DISCUSS

Sigh. I am just so grateful. It has been life-changing for me. It really has.

But, focus, Sarah! Give the people some concrete details! Because you know how it is! You've been on the other side listening to someone say X, Y, Z has helped them and you've laughed ruefully and bitterly!

So, yes, while experiences are important, the numbers I received when I visited my POTS doctor in August really kind of hit it home for me—that the exercise has been helping. Because while I had evidence of improvements (April wedding shenanigans, the glorious summer of soccer, etc.) it was still hard for me to believe/attribute it to the exercise. Like I said in earlier posts, I'm a bit jaded with "POTS treatments" because, hey, aren't we f'ing all at this point?

Anyhoo, when I saw my POTS doctor in January we were still trying to get me into the cardiac rehab program at the local center. At this time, I was taking Metoprolol to help control my heart-rate.

Here were my baselines (taken after lying down for three minutes, then taken after sitting for three minutes, etc.):


1/3/17

Heart-Rate
Supine to Sitting: heart-rate increased by 21 bpm.
Sitting to Standing: heart-rate increased by 24 bpm.

Blood-Pressure
Supine: 100/58
Sitting: 99/69
Standing: 95/65

Not too shabby, right? If I remember, I drank a crap ton of water that day, so the fact that my BP wasn't in the 80/50 region like usual was pretty freaking cool.

Fast forward seven months and two days, and keep in mind this is without Metoprolol as they wanted me off of it while completing the program:


8/1/17

Heart-Rate
Supine to Sitting: heart-rate increased by 4 bpm.......... FOUR.
Sitting to Standing: heart-rate increased by 17 bpm........... who are you and what have you done with my heart?!

Blood-Pressure
Supine: 118/55
Sitting: 109/59
Standing: 107/66

STANDING BLOOD-PRESSURE OF 107/66 AND ONLY 17 BPM INCREASE WITHOUT METOPROLOL AND WHO DO YOU THINK YOU ARE BODY SOME KIND OF ALMOST FUNCTIONING THING?! 

Needless to say, there was a bit of verclempt happening in the doctor's office that day, too.

Oh, and this. Lots of this:

                                                        Um... that... those numbers can't be right, can they?

                                                        Um... that... those numbers can't be right, can they?

So I don't know y'all. It's been a wild ride this year, for sure. Proceeded by 10 years of wild (mostly sedentary) rides. And it is still a fight, don't get me wrong. It's hard to get my three days a week of exercising in if I'm not chasing after a soccer ball like a rabbit after a carrot on a string. And there are still naps and brainfogs and tears but... I think... I this might be what it's like to be living again.

Levine's POTS Exercise Program: Thoughts and Intake

A few years ago, I put myself through a summer of exercise, keeping an eye on my heartrate, and felt it was a big proponent in getting me from being bedbound to being able to hold a full-time job. As it always is with POTS, my health has fluctuated since, and—recently—my doctor suggested I try the POTS Exercise Program created by Dr. Levine.

For about four months now, I’ve been working with my doctor to get my medications balanced in order to try the program, but only recently have I thought of blogging about my experience. I know exercise is not a “cure-all” for POTS, and it may not work for me just as I have heard it has not worked for other people, so I can't promise what the content will be like. Especially since I would not be divulging specifics of the program per the request of Dr. Levine who “strongly [feels] that each patient undergoing an exercise program needs to be monitored by their health care provider regularly.” Which I found myself agreeing with more than I thought I would.

Now, if I were you, I'd be frustrated at a blog chronicling this and not giving details. When you have an illness like POTS, you want any specifics you can find.  You want concrete steps in order to DO, to TRY anything to get better. I understand this completely. So I will do my best to give as much information as I can, without going into the details—I really don’t want anyone  making an already complicated illness worse by utilizing this program on their own, especially with how extensive it appears to be., without guidance of a professional. Now, I also get the general wariness of doctors, too; I don’t have a lot of faith in doctors regarding POTS, but I do feel things are gradually changing over the years and more good doctors are stepping out. So I will provide a list I’ve put together of these doctors*, as well as provide information** for you and your doctor to get in touch with Dr. Levine so that you may look into the program together.

That said, I’m now at the “So why the hell would anybody read this crap then?” and, honestly, I don't know. But today came, the day after I went to the Center for the intake/stress test, and I’m already dsfjhksjer than I expected, and then the emotional and mental mind-fudgery started: Uh, I barely did anything yesterday and I feel like this? Are you %*#&ing kidding me? I’m totally screwed when I start Monday.

So, alas, here I am: writing a blog in Grinch pajamas (appropriate), completely exhausted after making myself a lunch, and—thanks to brainfog—unable to remember what frigging day of the week it is. (Thursday I think?) My friend told me that these experiences, thoughts, emotions, and frustrations might be beneficial for others to read. Whether that will be the case, or it will just be a place for me to vent, is yet to be seen. However, I *can* promise these series of blogs will probably be laden with f-bombs, various other bits of salty language, and stupid things I find funny to keep me from a breakdown. So, you have been forewarned, dear three readers of mine!

As I mentioned, I went to the intake yesterday and it was pretty straightforward. We went through the schpeal of how my symptoms present themselves, I told them what makes them worse (“Uh, pretty much everything we’re about to be doing.”), and they told me what to expect. They took my heart-rate, blood pressure, and pulse ox while sitting, standing, and standing after a few minutes and then I got on the recumbent bike. They had a paper with a scale for me to look at, something like 1 – 10, with 1-3 in blue (not much exertion required, could do this extensively), 4-5 in green (beginning to be challenged, but still able to continue, breathing normally, little to no symptoms), 6-7 yellow (audible breathing, still able to complete sentences, other symptoms occurring), 8-9 orange (can only speak one to two word responses, symptoms present, and 10 red (cannot continue want to curl into a ball now please thanks).

My PT would increase the resistance of the recumbent bike every couple minutes, instruct me to keep the RPMs at a certain number, and then ask me how I was feeling (using the scale if I needed to) while she took my blood pressure and heart-rate. This rinsed and repeated until I got to the orange when my wee little legs were basically just like “We revolt. We want back into our pajamas.”

The PT told me she would go over my vitals, and her observations from the recumbent bike, to come up with a good pace and heart-rate zone area that would allow me to strengthen and condition without going into the red exertion level.

Honestly, it wasn’t too horrible of an experience. Definitely fatiguing, of course, and daunting for sure, but it was nice to be able to take some concrete steps. Of actually talking to someone who was familiar with the condition. And to know that other people have gone through this in order to better themselves and their health. I didn’t realize I would feel this odd form of “camaraderie” with POTS warriors, and other people trying to improve their health (cardiac patients, CF, etc.) at the center, by just getting out and doing the intake. So while a lot of these blogs will probably be for me and my venting, I do hope it can be helpful to others—regardless of whether they complete the program or not.

Sarah

*List of Recommended Doctors

**“Any healthcare provider around the world can contact Dr. Levine’s team in Dallas for this [program’s] information to use at their discretion with their own patients.”

Dr. Benjamin Levine and Team
Dianne Hendrickson, FNP-C
Tiffany Bivens, M.S.
Institue for Exercise and Environmental Medicine
7232 Greenville Avenue, Suite 435
Dallas, TX 75231
www.ieemphd.org
THRIEEMPOTSRegistry@texashealth.org

POEM: Everything You Need Is Already Inside You

There are no tools of man
for cleaning out
the gutters of the mind.

It comes after,
long after,
the smothered labor
of foundation,
and its undoing. 
Because the past has settled and held
you forever, you see—
so how are you to know
you stand on snake coils
and poisoned rods?
How are you to know there
are better things
than these faded crosses.

But after that
after the arduous and surreal revelation,
the excavation
of childhood
which fell and was forgotten
beneath a front porch
June fray of correction,
you realize
roots have grown
in your heart
(they can wriggle through
stone, you know.
I know because
my heart was once stone).
And it
is only when
you pull those up
like a vine,
leaving chasms in your body
where water rushes in,
when your soul has been gutted
by exhaustion and
your heart
has been purified
and partitioned
to a prototype,
when you think
it is finally finished,
then
then!
is when you must dig
your knees into the dirt
and scrape away the last bits of muck
with your goddamn hands.
Because
there are no tools of man
for cleaning out
the gutters of the mind.

© s.e. carson