Mayo Clinic Day 4

Hey everyone! I have some really exciting news — I got to try  on wedding dresses today!!!! It killed me and right now I feel the worst I have felt in about a month, but I must say, it was worth it. If you want to see the top 2 contenders right now and put in your vote, text me and I will send you a picture!

 

Here we are practicing for the big day! We like to kiss and make obnoxious noises until my Dad says “Alright now, that’s enough!!! **gag noises**”. Hopefully on our wedding day we won’t both be smirking for our kiss!

On to the medical stuff… Today was a pretty awesome day because I got to hear some results.

I got a motor chair today!! They rent them out for $20.00 a day. I got yelled at by the old lady who mans the medical supply/convenience store for going too fast. She stood over me, refusing to walk away until I turned down the speed. You see, we already weren’t friends because she refused to take compression stockings out of the wrapping despite no seals or packaging needing broken for her to do so. Before forking over upwards of one hundred dollars, it seemed reasonable to want know how opaque or sheer they are. We found her refusal a little ridiculous and a debate ensued between her and my mother. That was the other day. Back to today. After scolding me, she moved on to scolding dad about how he is liable for anything that happens to the scooter. It clearly comes apart for transport, but she said he can do this at his own risk because he is LIABLE. We can put it in a car, but know, you are LIABLE. You can leave it outside the door of your appointment or restaurant, but you are LIABLE if it gets stolen. I wanted to be like “Hey, lady, are we liable for this scooter? I want to run you over and I am worried about repair costs.”

Endocrinologist

This wasn’t related to POTS, but was because I have tiny little nodules on my thyroid. This was all good news. He actually said I probably don’t have nodules, I probably have normal pits. He said women’s thyroids enlarge, stretch, and get pits with every menstrual cycle and pregnancy due to hormones. A lot of doctors think these pits are nodules, especially women with a familal history such as myself. They are actually normal and could be found on pretty much any woman you picked off the street. They are ultrasounding my thyroid tomorrow to be safe.

Cardiac Electrophysiologist

This guy knew so much about POTS, it was so uplifting!

He briefly went over all of my tests with me, and went more specifically into stuff to do with my heart. I am just going to tell you about the stuff I have details about today, and will give you the rest of the results tomorrow when I have more information. My EKG, echocardiogram, and holter monitor were perfect! This was great news because it means structurally and functionally, my heart is doing wonderful. The wiring is correct, just the “software” or how my body uses the wiring is messed up.

My pulse, as you all probably know, is VERY high. Today, just sitting there, it was 130 and when the doctor had me lie flat, it went down to 80. This is higher than it was on during the Tilt Table Test yesterday! This is part of what makes POTS so tiring. It is like your heart is constantly beating as fast as most people’s beat when they are running! It kind of gives you a panicy feeling, like you are running from something, and just is plain uncomfortable to experience all of the time. They can give me medicine to lower my heart rate. This might help me feel a little less tired all of the time. They doctor really emphasized the exercise regimen is one of the most important things for feeling less tired (more on this to come).

My blood pressure tends to be in the 90s on top and in the upper 50s/lower 60s on the bottom. He said this is detrimental to someone like me who nearly faints all of the time. You start feeling dizzy, nasueous, and lightheaded when your blood pressure gets in the 70s or 80s on top. I get something I call “flashes”. When I get one of these, the world temporarily goes black and my hearing is gone for a split second. This will happen dozens of times in a rapid succession. The technical term for this is near-syncope (sync-oh-pee).With such low blood pressure, I only have about 10 points to play with before the “flashes” start.  They can give me medicine to raise my blood pressure. This will help because then my top number with be something like 120 or 130. This means I could drop 40 points, and still not become faint. Sounds good to me! The medicine will also keep the other medicine that slows down my heart from slowing down my heart to the point that it stops when I lye flat. This is just a treatment of the symptom, not the cause. They have no idea what causes people’s body to do this, so there is no treatment.

My sodium was low. This amazed me (it was about 1/3 of what it should have been) because I eat spoonfuls of salt everyday to increase my blood pressure! I just need to eat even more salt and this will be fixed.

Physiologist

The main point of this guy was to talk to me about what exercises I can do that won’t exaberate my symptoms, but will help me feel better. The stronger my muscles are, the more constricted my blood vessels will become. The more constricted my blood vessels are, the less blood can settle in my legs. Makes sense, right?

I could tell this guy dealt with POTS patients all of the time because he was very knowledgeable. My only constructive criticism is it felt like he gave this same speech to every patient. He was telling us things we already knew, which is to be expected, but did not change his presentation based on our previous experience, knowledge, or us showing understanding. He went into a 3 minute explanation of Pavlov’s dog and learning. At a break, I lightly mentioned I have my bachelor degree in Psychology and am familiar with learning theories. He kept right on going and finished his story of Pavlov’s experiment. Oh well though; we weren’t there to be entertained. Even considering all of the uncomfortable, tortuous tests I’ve had, I have to say this was the most major test of tolerance (next to that damn blood pressure cuff!!!).

On to more interesting stuff than my complaining…

He said doing traditional exercise would make me very sick. Not only is it stressful on my body due to the exercising itself, but my body is working against gravity to keep my blood from pooling. This makes exercising exhausting and dangerous.

So what exercise regimen did the doctor tell me to do? Basically, a horizontal exercise plan. He said anything I would normally do standing up, try and modify it to do it standing up. So instead of doing curls standing, do them lying down or at least sitting. Instead of going on a treadmill, go on a bicycle with my legs as level to the ground as possible. I ultimately will need a gym membership in order to be able to do this exercise plan.

I am going to now explain the exact regimen he told me to do so that anyone else with POTS can see what he recommended.

Aerobic Exercises: 2-3 times per week

  • recumbent (level to the ground) cycle
  • rowing machine
  • phase in upright exercise, such as walking, once 30 minutes of this type of exercise is tolerated

The target heart rate range will be 128-133. Please make sure you consult your doctor if you are going to start exercising because your target heart rate range will be different based on your baseline rate. The good news is, he said your heart rate can go up to 220 and nothing bad will happen! On a scale of 1-20, the percieved exertion goal is 12-14. This is called the “somewhat hard” range and falls between “fairly light” and “hard”.

Strength Training: 2-3 times per week

  • On a leg press machinedo leg presses, toe presses, leg curls, and leg extensions
  • do 8-15 repitions (whatever in this range is best tolerated)

He said you can modify these to do them with resistance tubing and bands, but it won’t have the same impact as a machine does. The doctor recommended using a physical activity monitor in order to be aware of my activity level.

Gameplan

  1. Warm up 5 minutes at an easy pace.
  2. Starting out, exercise 5-10 minutes, whatever is tolerable. You don’t want to overdo it starting out because this will make you VERY sick.
  3. Your goal is to get up to 45 minutes of working out.
  4. Cool down for 5 minutes at an easy pace. You must do this. It is healthy for everyone to cool down, but especially crucial for people with POTS. Your blood pressure will rapidly drop (as it would for anyone), and this can make you more suspecptible to feeling symptomatic and even fainting.

This was the conclusion of my appointment. Even though I felt inpatient at times as a result of his in depth explanation of EVERYTHING, he was helpful. I had been wanting to exercise, but every time I would try, it would make me sick. Now I know exactly what to do and how to avoid becoming super sick. It is no P90X, but it’ll do!

After this, I decided to go crazy with exerting myself since I had the motor chair. We went out to eat and then to try on wedding dresses. I am now nauseous, dizzy, headache, and all kinds of other fun stuff.

like mother like daughter….
I had the camera set to auto take ten pictures in a row. Everyone is like “Oh my goodness, ten is way too many pictures, JACKIE!!!”
The only even semi-good photo we got!

Thanks for reading. I love reading everyone’s comments. I read them while I am waiting for appointments or when I get down in the dumps about all the negative results. I know that having tests show something is good because they can help me, but still is a little sad because I know they aren’t going to magically know what causes POTS!

— Jackie

13 thoughts on “Mayo Clinic Day 4

Add yours

  1. I wish everyone had the gift to write the way that you do. Your intelligence truly shines through! Remember one thing, and that is we all have our cross to bear. Yours happens to be POTS. Mine happens to be a myriad of things 🙂 but seriously, it sometimes helps to realize we are not alone in our struggles and what matters is how we decide to face our struggles. It’s pretty clear you plan to punch yours straight in the face!! Now that you have some answers and a game plan you can finally approach this with newfound knowledge and improve your life immensely. Keep us all informed and my prayers will continue!!

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  2. HI Jackie, We just got back from Streator, went out to eat with papa for his birthday. We had a nice time. Papa looks so good, can’t believe he is 89. Read your blog on the way home, sounds like your getting some good advice. Wish they had a magic pill that would take POTS away !! Love ya [ want to see the dresses]

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  3. Hi Jackie,
    I hate to ask but why was there a drinking spout at the top of the big jug? (I hope you did not have to keep the jug until it was full)

    Hopefully what you learn and some of the medicine will allow you to get back to more of an active life. Between you and your mom you should be able to find a lot of ways to process the new information they are giving you. You might want to check into a total gym, it allows you to lie flat and at low inclines when exercising.

    Please text me pictures of the wedding dresses.

    Your favorite uncle (lets see if you send the pictures to the right person)

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  4. That sounds very good that you can at least start exercising to combat this thing! Like that you can eat more salt! haha… I love salt and eat a lot of it since I have pretty low blood pressure myself – not sick low, just low enough I can have all the salt I want! So strange they don’t know what causes POTS… grrrr! luv the pics in the booth! have you set the wedding date? hugs from us, Suz and Delby

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  5. Finn, thank you for your comment. It is obvious that you put a lot of thought about you wanted to say to me. It was inspiring and uplifting! I was really flattered you like my writing style. With having concentration issues , writing is more difficult than it used to be. I miss working, so having this blog that educates people and could help others with POTS makes me feel a little productive. I also miss helping others, and it is my hope this will help someone out there.

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  6. Sounds like everything is going well, that’s great! I was at a conference a long time ago and I talked to an exercise physiologist from the Air Force. He said they had their fighter pilots really focus on leg exercises, so that when they were pulling a lot of G’s (which causes the blood to pool up in their legs and can make them black out), they were to flex their legs isometrically to help their G-suits keep the blood out of their lower body. So, we either need to get you a fighter pilot’s G-suit, or start strengthening those legs!

    Really enjoying reading this! It feels like we’re right there with you! Keep up the good work!!

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  7. I know the week was very hard, but at least you finally have heard from Dr.’s who know & understand POTS & that is awesome! Sounds like they have given you tons of great advise on what you can do to help you become more active again! Loved the wedding dress pictures & your cheesy smiles!! As always, you looked beautiful!!! Love you lots!!

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  8. Jackie, I had the opportunity to read your posts this afternoon. I loved reading them! Your candor is refreshing and I feel as though I’m learning so much–about POTS, chronic illness, and you! I think it’s great that you’re publishing your experiences for other people to read and commiserate with. I hope you keep writing, I’m interested to see your story unfold. I will be thinking about you and putting lots of positive energy into the universe for you. 🙂 Happy Labor Day!

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  9. Jackie,
    I just recently heard about your POTS diagnosis. I learned a lot about POTS from your blog. You are a very strong woman. I can see that even though you have endured quite a bit this year, you have have still managed to keep a smile on your face. You are an inspiration! My heart truly aches that you’ve had to go through all of this. I already know you have an amazing support team. Your boyfriend seems to be quite the catch! The two of you look madly in love 🙂 Congratulations on becoming engaged! Just know that you are in my thoughts and prayers. I love you Jackie!! I will continue reading your blog to check on how you’re doing. I look forward to seeing pics of the wedding dress too! Take care of you.
    Love,
    Niki

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