Episode 62 – POTS Diaries with Patty from MA

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:27 Lindsay (Host): Hello friends and welcome to another episode of the POTScast. Whether you have POTS, know someone with POTS, study or treat POTS, or just want to learn more, we're glad you are joining us. I'm Lindsay Nakagawa, and today we have another episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. Patty, thank you for speaking with us today.

00:53 Patty (Guest): Hi Lindsay. Thank you for having me.

00:52 Lindsay (Host): So let's start with just some basics about you. What is your age and where do you live?

01:01 Patty (Guest): I am 57 years old, and I live in Boston, Massachusetts.

01:05 Lindsay (Host): Before we learn about Patty the POTS patient, I'd like to get to know Patty the person a little bit. Tell me, what are a few words that your friends or family might use to describe you?

01:17 Patty (Guest): Persistent, loyal, brave, dedicated, dependable, caring, kind, and helpful.

01:25 Lindsay (Host): Those are all really great words. Do you have any hobbies or activities that you enjoy doing?

01:32 Patty (Guest): I have recently started to enjoy spinning. I swim, I like to hike when I can. I crochet. I like to read.

01:42 Lindsay (Host): Great. Those are great. I'm probably going to ask you a little bit more about some of those - spinning and swimming, maybe - in a little bit. But first, let's start with your POTS journey. At what point did you start to experience some symptoms?

01:56 Patty (Guest): I noticed my symptoms in about 2016. It started with PVCs and exercise intolerance. I’m one of those type A personalities. I work as a respiratory therapist. At the time I was working in a large Boston hospital. Very, very busy, mainly working in the ICU and my 12-hour shifts were just jam packed, every second on the move. And being one that doesn't want to admit that I'm sick, I didn't want to acknowledge anything was wrong. So I just kept pushing through and pushing through.

At the time I was also a respiratory therapist for a federal disaster medical assistant team - we call those DMATs. The team responds to natural disasters and large medical needs in the country. So, we deploy for hurricanes and go off on weekend trainings. And while I was with this team for about 10 years prior to getting sick, I learned how to rappel off cliffs and off bridges and I pushed myself to the max and did things that I never had before - being 40 years old - had ever done in my life.

So, I think I was very, very active person and didn't want to admit that I was feeling sick when I started to have these PVCs and exercise intolerance.

And it was late in 2016 that kind of forced me to call on a cardiologist at the hospital that I worked on to go in and start getting worked up and find out what the heck was going on with me.

03:27 Lindsay (Host): So, before 2016, what was your health situation like? Did you consider yourself a pretty healthy person, or had you experienced other illnesses or issues?

03:39 Patty (Guest): Really no other illnesses. I would call myself a very healthy person. Been married for now 33 years. I raised two sons and never really felt like I had anything that held me back from doing any activities with my kids while they were growing up or even doing things with my friends. Prior to getting diagnosed was the first time in my life I ever would even consider calling myself a runner. A group of girlfriends decided to run a 5K so we had done probably about two years' worth of training and had run 4 or 5 5Ks, prior to me starting to develop this exercise intolerance.

04:16 Lindsay (Host): So, in 2016 then you would have been early 50s? So early 50s was really the first time you experienced any kind of POTS symptoms.

04:25 Patty (Guest): Yes, that's true.

04:28 Lindsay (Host): Wow, so you went to the hospital where you were working and saw a cardiologist. And how did that go?

04:35 Patty (Guest): Great. He's so kind. Very very dedicated to his patience and just a loving man. He put me through just about every cardiac exam he possibly could, and really didn't find anything other than the PVCs. So, I saw him in December 2016. And in December 2017, as we were exhausting everything and he had tried a few medications - nothing really seemed to change the PVCs. He did the poor man's test in the office and said, “I think you have dysautonomia.” And I had been in the medical field for 26 years and had never once heard the term dysautonomia. Even working at a large Boston teaching hospital where we have lots and lots of variety of cases and we have a lot of spinal and foot injuries. I had never heard the term dysautonomia.

05:22 Lindsay (Host): Wow!

05:23 Patty (Guest): So I had a lot of research ahead of me to go home that night and try and figure out what he was talking about.

05:28 Linday (Host): So, from when you first saw this cardiologist to actually getting that diagnosis, how long did that take?

05:36 Patty (Guest): It was one year. In the big scheme of things, that's not bad, right? [Laughs]

05:42 Lindsay (Host): [Laughs] I think that's true. So after you had this POTS diagnosis what happened then?

05:48 Patty (Guest): He actually ordered the CPET, which is when they take you into the Cath lab and put in a radial artery line and a line through your neck into your heart and put you through a full cardiac catheterization where they examine what your heart looks like and they do all kinds of measurements. [Transcriber’s note: CPET is cardiopulmonary exercise test – a noninvasive exercise/stress test to assess functional capacity and exercise limitation, providing information about the cardiovascular, respiratory, metabolic and muscular response to physical effort.] They draw blood from both the venous and the arterial every one to three minutes during the cardiac cath. And then they put you in the wheelchair, drive you down the hallway with all these lines in, and go to the pulmonary function lab, set you up on a bicycle and have you pedal until you can no longer pedal, and they're drawing off the blood gases - the venous and the arterial bloods - every minute, to see where you are.

They told me an hour after I had the test, when they came to pull the lines out, they knew that I had low filling pressures and that it was dysautonomia. And then they run all kinds of numbers to see what your exercise intolerance is, how your body uses your oxygen, and how your metabolic state is throughout the whole test to come up with the actual diagnosis.

7:00 Lindsay (Host): And so, after you had this diagnosis, you said you went home and did some research about dysautonomia and POTS. What did you think then?

07:08 Patty (Guest): I was definitely overwhelmed. It's an awful lot to try and... try and figure out, when it's yourself, and there's an awful lot to learn. I was fortunate because from that point on I only had to wait three months to see a neurologist, and he did the small fiber neuropathy biopsies which confirmed the small fiber neuropathy, and he did the actual Tilt Table test and gave me the diagnosis of POTS after that.

Definitely feeling overwhelmed when I left his office after all my diagnoses. I was told drink a ton of water, plenty of salts, compression from the feet to the high waist, and he asked myself and my husband what type of exercise equipment we had at home. We have a stationary bicycle and he challenged me to ride that bicycle 5 minutes a day and to add one minute a week as I moved forward, and to continue to work my three 12-hour shifts a week for as long as I possibly could.

So very overwhelming.

08:08 Lindsay (Host): I would imagine! A 12-hour shift sounds difficult enough for anybody, and then when you add these symptoms on top of that, how were you able to get through 12-hour shifts?

08:20 Patty (Guest): It's difficult. I actually left the Boston teaching hospital 'cause I could not keep up with the intensity of that job and moved to a community hospital where I still do three 12-hour shifts, it's just not as intense. And there's a little more time for me to actually hydrate during the day and to get some sitting breaks.

08:40 Lindsay (Host): Was it hard to give up that job at the larger hospital?

08:44 Patty (Guest): Very hard. It was heartbreaking to have to leave there. I had been there for 18 years and did things there that I'll never do at a community hospital. And I also had to resign from the federal disaster team, 'cause with them we go out for two weeks at a time and you're putting in 12-14 hour days in very very rigorous conditions - hurricane weather you're going down and you're working in 100, 120 degrees, with incredible humidity, which does not work with us POTS people.

So, I felt like I was just a burden to the team and had to resign from them. So a lot of... lot of life changes.

09:23 Lindsay (Host): Yeah, I'm sorry to hear that. That federal disaster program sounds really interesting. A really unique opportunity, I'm sure. I bet it was hard to have to give that up.

09:33 Patty (Guest): It was very hard. It took me a full year to kind of come to terms before I submitted my resignation.

And it's a great program. Anyone who's willing and able to... to work in that type of environment, I would highly recommend it. But, for me, I just felt it was best for the team if I gave up my position for someone else that was healthier.

09:55 Lindsay (Host): That must be difficult. How do you cope with things like that - having to give up, you know, part of your past or part of your life pre-diagnosis?

10:10 Patty (Guest): So that I found very difficult, definitely struggles. Sort of at my lowest point after getting diagnosed and realizing that I was making all these changes to my life, I definitely felt lost. Didn't know who I was or even how to cope with it all.

And just scrolling on the Internet one night, I happened to come across a Facebook page for Dysautonomia International for the Massachusetts chapter that I didn't even know existed. And as I started reading their page - this was like a Wednesday or Thursday - that Saturday they were going to do a meetup at a fairly local restaurant for patients and caregivers. And my darling husband was kind enough to give up his Saturday morning of golf to go with me. At this restaurant, there were at least 30 people there for the meetup, and there were patients, there were family members, husbands, wives, moms, dads, and the woman who oversees dysautonomia in Massachusetts was there with her daughter.

And it was just so overwhelming when I walked in the door and saw all these people. And then as we got to meet one another and hear one another’s stories, I realized OK, I'm not as bad as others. I'm not as good as others. I fall somewhere in there.

But to meet people, hear their stories, see how other people have coped with life, my husband and I walked out of there that day, realizing that it wasn't as bad. We've made friendships that I still have, learned so much, and just gave me a new frame of mind to start coping with it and deciding what I was going to do next.

Which kind of brought me into making the decision to form my own care team, which is led by my PCP, neurologist, and my cardiologist. I found a physical therapist that specializes in dysautonomia who actually works out of the YMCA that I belong to. And I have a good friend who is a life coach, so I dragged her into my team and she helps supporting me with my diet, encouraging my exercise, keeping me from getting discouraged. And then pulling in my husband and my sons has just been great with people constantly checking in with me and keeping me moving forward and my doctors are all on the cutting edge of research, so I find that very beneficial.

12:41 Lindsay (Host): I'm really glad that you mentioned your care team because I think that's a really important point that when we're dealing with a multi-faceted illness, sometimes it takes a multi-faceted team to address all the different aspects of that illness, and that that can include not only cardiologist and neurologist but physical therapists, I think the life coach is wonderful - and then of course your support team, too - your husband and your sons. How do they deal with you having this illness?

13:12 Patty (Guest): I think all of them have tried to do their own sort of research and get some answers in figuring out what it is. My husband's been amazing. We mutually made the decision to sell the family home and we're living in an apartment right now. So, by downsizing the house that cut out so much of what I have to do as far as housework. Grocery shopping now is so easy because we have underground parking garage and I have one of those rolling carts to bring my groceries right upstairs. Laundry is on the same floor within our unit.

My husband knows just by looking at me in the morning whether it's going to be a good day or a bad day. He will take on any task that needs to be done. Give me the time to rest when I need it.

My boys are always checking in with me to see how I'm doing, wanting to know if they can do anything for me. For young adult men, I'm very impressed with that. [Laughs]

14:07 Lindsay (Host): I'm sure they must have had a great mother.

14:10 Patty (Guest): It takes a team.

14:12 Lindsay (Host): It sounds like you were diagnosed now a few years ago. How has it been going over the past few years now dealing with this illness and learning how to live with it?

14:23 Patty (Guest): Definitely a rollercoaster, but I will say I feel like I have come a long way. I have gone from 5 minutes three times a week on the stationary bicycle to now I am spinning at the Y [YMCA] and I can go for 45-minute sessions using YouTube videos.

My swimming is usually two days a week. I do 45 minutes or so in the pool. Umm, I have a PT exercise program that I can do in the pool as well as I do free laps and do laps with the kickboard.

I do yoga and Pilates. I like to walk. I do a little bit of running on my best days - jogging not running - but do a little bit of that. I do some weights, and this past fall was the first time in over four years that I got to hike about 3 miles on a very rugged hilly location that's near my home that was always a favorite place for me to go and I haven't been able to go. So, I took that as a big victory.

15:25 Lindsay (Host): Absolutely, you should. So you had mentioned that your doctor had recommended starting with just, you know 5-5 minutes per day on the bike and maybe adding a little bit of time. How did you go from that to where you are now where you're able to do the swimming and the spinning and the yoga and all of that?

15:46 Patty (Guest): Persistence. Definitely pushing myself. The physical therapist puts me through the Bruce Protocol, which is what our cardiologist uses when they bring us in for a stress test to kind of watch where my heart rate is. [Transcriber’s note: The Bruce Protocol is a standard treadmill test in cardiology and is comprised of multiple exercise stages of three minutes each. At each stage, the gradiant and speed of the treadmill are increased.]

So initially I couldn't exercise with a heart rate of 110 without having the crushing chest pain and shortness of breath that's familiar to all of us. Now I can exercise with a heart rate of 155, which in the cardiac world for my age that's... they consider that synthetic excellent conditioning, which is kind of funny.

16:21 Lindsay (Host): Yeah, that sounds like a lot of hard work. What would you say is the hardest thing about living with POTS?

16:29 Patty (Guest): Never knowing from one day to the next how you're gonna feel. I had considered myself very much a helper. I still think of myself that way and I definitely over commit.

16:45 Lindsay (Host): Have you found anything that has made a big difference to your POTS symptoms?

16:50 Patty (Guest): [audio cuts in and out] For me I feel the best thing for my POTS symptoms is to stay upright, to continue to work full time, and to continue to meet most of my commitments.

17:00 Lindsay (Host): How would you say your symptoms are today compared to when you first got diagnosed?

17:05 Patty (Guest): I do feel that exercise is what has helped me the most.

17:10 Lindsay (Host): That's great, and would you say that your symptoms are better now than they were when you were first diagnosed?

17:17 Patty (Guest): [audio cuts in and out] I recently had COVID and that has set me back some, but I'm learning that I'm always going to have setbacks and I just keep needing to work forward.

17:29 Lindsay (Host): That's a great attitude. Sometimes it's hard to push through those challenges. Is there anything that you know about living with POTS that you wish you had known sooner?

17:40 Patty (Guest): Probably the whole dietary thing I've been blessed. I haven't had the GI issues that I know a lot of people have. But once I'm choosing healthier and kind of sticking with a plant-based diet and clean foods.

17:56 Lindsay (Host): That's interesting. Would you say that anything positive has come out of having POTS? I know that's difficult to say, but are there any silver linings maybe?

18:07 Patty (Guest): I think I’m more compassionate towards my chronically ill patients and more understanding. Before being diagnosed, you know, you would want to tell [audio cuts out] your COPD patients, “You should stop smoking and move forward with life.” [Laughs] You know, some other patients, maybe if they took their medications on a regular basis then. Now that I have dysautonomia, I realize every day is a different day. It's Groundhog Day all over again and not necessarily 1 little thing that's going to make you all better. [Laughs] It's a work in progress. And our mental attitudes definitely get in the way of that.

18:55 Lindsay (Host): That's so true. We have a game that I'd like to play called the lightning round, if you're up to it. I just ask a question and you answer whatever the first thing that comes into your head is - just quick, short answers are fine. It's meant to be fun, so no pressure at all. What is your favorite way to get salt?

19:07 Patty (Guest): Quaker rice crisps and LMNT. [Transcriber’s note: LMNT is an electrolyte drink.]

19:12 Lindsay (Host): How many doctors have you seen for POTS?

19:15 Patty (Guest): Three.

19:16 Lindsay (Host): How many other POTS patients have you met face to face

19:20 Patty (Guest): About 20.

19:22 Lindsay (Host): What is one word that describes what it's like living with a chronic illness?

19:27 Patty (Guest): Roller coaster.

19:29 Lindsay (Host): What is something that brings you comfort or joy?

19:32 Patty (Guest): My family.

19:34 Lindsay (Host): What is something you're proud of?

19:36 Patty (Guest): I guess I’m proud... I took the advice of the neurologist and started with the small bits of exercise and that I have got a point now where I can do a lot more things and spin for about 45 minutes.

19:53 Lindsay (Host): That is definitely something to be proud of. What is something you are grateful for?

19:59 Patty (Guest): My family, my wonderful husband.

20:02 Lindsay (Host): Finish this sentence: People might suspect you have POTS when...

20:08 Patty (Guest): I'm always looking where I can get my next bottle of water.

20:12 Lindsay (Host): I'm sure a lot of us can relate to that!

20:14 Patty (Guest): [Laughs]

20:15 Lindasy (Host): That was the last question for the lightning round. Thank you for playing. What do you wish more people knew about POTS?

20:22 Patty (Guest): [audio cuts in and out] I do wish more people that it's not something that has a pill you can swallow to be fixed, that it's a condition that changes from day to day, week to week, and that have to cancel last minute or not be able to carry through with the commitment. I wish people were more understanding.

20:43 Lindsay (Host): Do you have any advice or words of wisdom for fellow POTS patients or maybe somebody who was just diagnosed?

20:50 Patty (Guest): Don’t be afraid to try. You get up one day and you all you can do is sit up in the bed [audio cuts out] a win for that day. But if the next day you can get up and walk around your house and just do a lap in your living room [inaudible] for tomorrow, do three steps more. And just keep being persistent.

21:15 Lindsay (Host): That's great advice. You had mentioned at one point, too, that in addition to the exercise you had made some changes to your bed that you found helpful. Could you tell us about that?

21:26 Patty (Guest): Yes. So in the research that I was doing, there are a lot of suggestions for raising the head of the bed. And my husband decided to buy us an adjustable bed. So, we each have our own controls and I adjust the head of the bed. If my legs are really sore, I can elevate them higher, my head higher. But every morning when I wake up, raise the head of my bed a little bit, a little bit, a little bit, until I am in a fully upright position before I get out of bed in the morning. Difference to how I start my days.

I'm definitely less dizzy and when my feet do hit the ground, as opposed to when I was in a flat bed and I would stand up, I would be so dizzy. I would just want to collapse onto the floor.

22:18 Lindsay (Host): Do you have a favorite way to spend a flare day, a day where you're not feeling well? Is there something that that helps or that brings you comfort?

22:28 Patty (Guest): Those are the days that I tend to get into the reclining chair with both the legs elevated with a nice fluffy blanket and a good book.

22:41 Lindsay (Host): That sounds perfect. What lessons has POTS taught you, if any?

22:49 Patty (Guest): It’s taught me more patience with others as well as with myself and giving up myself in letting myself not be able to accomplish all the things.

23:02 Lindsay (Host): And I have just one more question for you: why did you agree to let us share your story today?

23:09 Patty (Guest): I think it's important for dysautonomia patients to hear from other people. I think we could all learn from one another and from other patients on what works for one, it's worth trying. See if it works for you. [audio cuts in and out] When I saw 30 other people struggling with the same thing and walked out with the knowledge that then I didn't feel so alone and I think you doing these broadcasts and offering the Diaries, there are patients we don't know how to find other groups. And I'm hoping that it's a way to educate others.

23:49 Lindsay (Host): Well, thank you for saying that. I'm so glad that you have found the podcasts helpful. I can relate to about what it's like to be able to meet POTS patients face to face and just what a difference that can make in dealing with our own illness. So, I'm glad that you had that opportunity, too. Is there any last words you'd like to say to our listeners or any last part of your story you'd like to share?

24:13 Patty (Guest): Stay positive. Keep your family close by. Keep your friends close by. And don't let this defeat you.

24:22 Lindsay (Host): Those were great words, great advice. Patty, thank you for sharing your story with us today. I have enjoyed hearing about your journey and the ways which you have adopted your life to deal with this illness, and I know that our listeners will find inspiration in your story. And hey listeners, thanks for tuning in. Remember, you're not alone and please join us again soon.

24:45 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what’s right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax deductible donatin at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing and sharing it with your friends and family. You can find us wherever you get your podcasts, or at www.thepotscast.com. Thanks for listening.

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[Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]