Updates Since Returning from Mayo PPRC

Updates Since Returning from Mayo PPRC

 

AFTER THIS UPDATE SECTION, PLEASE START TO READ THE BLOG POSTS FROM THE BOTTOM UP – FIRST BLOG IS CALLED “GROUND ZERO – AUGUST 2014”.  Like other blogs, the most recent entries are on top.  My story starts at the bottom.

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UPDATE – SUMMER 2018 – It has been 4 years since I got sick with POTS and what a difference 4 years has made!  I just finished up my junior year in high school and I had a really busy, but great year.  Like every semester since returning from the Mayo PPRC (during my freshman year), I attended full-time school (including AP and honors classes) and participated in school sports throughout the entire year.  I played Varsity hockey in the fall and winter and Varsity lacrosse in the spring.  My lax team made it to the playoffs and won the County Championships.  I also attended my junior prom and took my SAT exams for college.  I worked really hard this year and earned high honor roll.  I am very proud of my efforts.  I am turning my energy toward college now and will start the visiting/application process soon.

This summer, I am working as a golf caddy and I played summer lacrosse.  I played with my dad on his summer lax team “Mean Machine” and we won the summer lax championship in our division.  It was a great experience getting to play lacrosse with my dad, his friends, and their sons.

On the medical side of things, it has been almost 2 years since my last IV iron infusion.  My ferritin iron numbers are holding and I recently quit taking my oral prescription iron.  I also increased my 5mg midodrine from once to twice per day this year, because I felt like it would help during this year’s SAT/ACT push.  Midodrine is a vasoconstrictor and helps with my circulation issues (which, in turn, helps my fatigue and brain fog).  I still find the most challenging thing for my body is sitting still for long periods of time.  This year’s preparation for and taking of the college entrance exams were difficult for me, but I practiced a lot and used my PPRC skills/strategies to help with my blood pooling/fatigue issues.  Again, I couldn’t be more thankful or appreciative of the Mayo Clinic (especially Dr. Phil Fischer), the Mayo Clinic PPRC, our cardiologist (Dr. Julian Stewart), and our hematologist (Dr. Oya Tugal), who introduced me to the wonders of IV iron infusions.

This August was my second annual trip back to the Mayo Clinic in Rochester, MN as a guest speaker at the Mayo PPRC.  I am so proud to be able to give back to the institution that saved my life.  Here is a link to my speech to the teens currently enrolled in the PPRC:

Here is a photo of me and Dr. Philip Fischer (who diagnosed me).  I look forward to visiting him (socially!) every summer to thank him.

     

Here are some photos from my Varsity hockey season:

          

Here are some photos from my Varsity lacrosse season:

           

Here are some photos from summer lacrosse with my dad (and championship trophy):

          

 

UPDATE – JULY 13, 2017 – Last week my mom and I returned to the Mayo Clinic so that I could “pay it forward”.  I went back as a POTS success story to speak to the current parents and teens enrolled in the Mayo PPRC program.  I would like to give a big thank you to the Mayo PPRC for allowing me to return and give back to the program that helped me so much.  I would also like to thank Dr. Phil Fischer for giving us some of his valuable time and for visiting with us. (Dr. Fischer diagnosed me in March 2015).  Here is a photo of me & Dr. Fischer from our visit.

My mom took a video of me speaking to the teen group (I spoke to the teens and parents separately).  Sorry about the side angle, but she had to make sure that she didn’t have any of the current patients in the video for privacy reasons.  Here is the link for the video:

Also, the PPRC gave me 7 talking points before we arrived and I typed up my speech to include those 7 talking points.  Here is my speech that I gave to both the teens and their parents:

MAYO PPRC SPEECH SUMMER 2017:

I attended the PPRC a year and a half ago, 14.5 yrs old and in the middle of 9th grade.  I was 3’’ shorter, 30lbs lighter and had not attended a full day of school since I became unwell during the summer before 8th grade – so a year and a half of school to include missing all of 8th grade – I’m sure many, if not all, of you can relate.

During my time at the PPRC, a guest lecturer came back here, someone like me.  He had a very positive story to tell and in the Q & A was asked, “Do you still have POTS?”  His answer, “If I stop to think about it, I still have POTS, but I don’t think about it anymore”.  THAT’S WHERE I AM!

Some doctors believe that there is a genetic component to POTS.  Well, my grandfather, aunt and mother all borderline failed a poor man’s tilt table test and my little sister failed spectacularly – worse numbers than me. HOWEVER, THEY ARE ALL COMPLETELY ASYMPTOMATIC!

That I am healthy and that my family is healthy is good news for everyone.  I think it means you can have aspects of dysautonomia and live a full life.  My mom is a CrossFit instructor and is strong and fit with no exercise intolerance. My sister is very similar. She is a very good lacrosse player, field hockey player, and gymnast.  My grandfather played football at University of Texas.  Funny, they all get headaches and don’t do well in the heat, sound familiar?  I think this supports one of the main tenants of the program – to rewire your brain – follow the program and you will improve dramatically.

Let’s look at some of the prepared questions and answers:

When were you in the PPRC & provide a brief history of what brought you to the PPRC. – In August 2014, I got sick with a stomach virus with high fever. I didn’t get well and continued to struggle with health issues, including low-grade fever, stomach pain, fatigue, activity intolerance, an enlarged lymph node on one side of my neck, and a very pale face. I spent 9 months seeing specialist after specialist in Long Island and New York City, but no-one could figure it out. I even had surgery to remove the enlarged lymph node, when, at one point, they thought I had lymphoma. The doctors in New York told me that I had Chronic Fatigue Syndrome and that nothing could be done. My parents did not give up, however, and brought me here to the Mayo Clinic in March of 2015. Dr. Fischer diagnosed me with POTS. He gave me a protocol to follow — exercise 30 minutes every day, drink lots of water each day, sprinkle salt on most of my foods, and try to keep as normal of a lifestyle as possible. After following the Mayo Protocol for 9 months, I was doing better, but I was still struggling with attending a full day of school and I still had “crashes” from overdoing it. I decided to come here to the PPRC in January of 2016 to get over the final hump and to get the rest of my life back.

What were the challenges while you were in the PPRC? – The main challenge for me here at the PPRC was the long days we were expected to follow, with the 9 hours at the PPRC each day followed by the 2 hours of social events at night. This was definitely a hard pill to swallow at first, but looking back, these long days alongside my peers who knew the things I was going through, made the transition back to normal life after leaving here that much easier.

What PPRC concepts did you gain that surprised you or you didn’t think would be helpful in the beginning? – Coming into the PPRC I was extremely closed minded. My recovery up to that point had been mostly self done with hard work following the protocol to the best of my abilities. But after coming here and learning what they have to teach you, I realized that this was not just a formula of how to feel better, but it was a formula for a healthy fulfilled life. The concept that really took me by surprise was the “never talk about it” protocol. I never would have guessed that not talking about your pain to anyone, whether you don’t feel up to something or feeling too sick to go to school, would make a world of difference in my lifestyle.

What PPRC concepts helped you the most in PPRC? – The push for physical exercise everyday was definitely the most impactful, but what really got me over that final leg to recovery, was not talking or thinking about it. Every time you get asked how you’re feeling or if you feel any pain, the only response is “yeah i’m feeling great” no matter how you feel. And persevering and going on with my normal lifestyle was the key to success for me and I noticed a difference within days.  I think the brain rewiring, along with the daily exercise, helped me the most.

How was the transition back to school, what were the challenges and what helped you overcome those challenges? – I was definitely worried about the return to school. Although I had been going for 3/4 of the day before the PPRC, I had not been to a full day of school for over a year and a half at that point. But after the PPRC, there was really nothing to worry about. I had been more than prepared after these 3 and half weeks to face whatever challenges school had to throw at me after the long days here plus the extracurricular activities. I knew that I had the stamina to do it after successfully participating in the long days here at the PPRC.

What are you doing now? School, extra-curricular activities, family, friends? – Since the PPRC, I went right into a full day of school and played lacrosse, and hockey, and I’ve been feeling great. This year my hockey team got to the semifinals for state championships — the farthest we have ever gone — and I played a full season of lacrosse, which included 2-hour practices six days per week. I’ve been able to go out with my friends every weekend and I stick to the protocol every day with 30 minutes of exercise, drinking plenty of water, adding salt to my food, and overall staying positive.

After going through the program, what would you recommend for someone currently in the program? – What I would recommend to you guys is to have an open mind about the program. Despite the hard days you may face now, it’s all downhill from here. The protocol becomes second nature and overall changes to your lifestyle will lead to a much better life. I can’t remember a day that I’ve felt bad due to POTS since, and I have the PPRC to thank for that.

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UPDATE – JUNE 8, 2017 – Today was the last day of classes for my sophomore year of high school, although I still have final and regent exams over the next 2 weeks.  I had a great year — full-time school (including AP and honors classes) and participation in school sports throughout the entire year.  I just finished up my spring season of JV lacrosse and made it through 2+ hour practices and/or games for 6 days per week during the season.  Additionally, it has been almost 9 months (!!!!!!) since my last IV iron infusion.  My ferritin numbers are holding and my body continues to uptake my daily oral prescription iron.  I am still also taking one 5mg midodrine per day, which is a vasoconstrictor and helps with my circulation issues (which, in turn, helps my fatigue and brain fog).  I have come such a long way in the almost 3 years since I got sick.  I couldn’t be more thankful or appreciative of the Mayo Clinic (especially Dr. Phil Fischer), the Mayo Clinic PPRC, our cardiologist (Dr. Julian Stewart), and our hematologist (Dr. Oya Tugal), who introduced me to the wonders of IV iron infusions.

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UPDATE – FEB 28, 2017 – Today is the one year anniversary of my graduation from the Mayo PPRC.  Wow, what a long way I have come since I contracted POTS 2.5 years ago!  I am playing on two hockey teams (JV at school & a club team), taking a full course load at school and doing well, socializing with my friends on the weekends, and I am looking forward to playing lacrosse in the spring.  I like to joke around and my mom says that she has her happy son back! I am truly indebted to and appreciative of the Mayo PPRC.  It changed all our lives – both mine and my family’s.

I still maintain on one 5mg midodrine per day and prescription oral iron.  My body is uptaking the oral iron even better than it did before and it has been 4 months since my last IV iron infusion.  I am due blood work in a month, but we hope to keep pushing my IV infusions further and further apart (although they are a God-send when my ferritin gets too low).  I am completely appreciative of the IV iron infusions (when I need them) and feel so lucky to be working with our hematologist.  I am now 6′ tall and 155 pounds. 🙂

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UPDATE – SEPT 1, 2016 – It has been 7 months since I returned from the Mayo Clinic PPRC & just over 2 years since I got sick.  I had a great summer!  I spent almost 6 weeks in California with my aunt and her family (she has 3 boys).  We surfed and were active all summer.  We have tapered my medication (Midodrine) down to once per day and I continue with daily prescription oral iron.  It has been 3 months since my last IV iron sucrose (Venofer) infusion (I have my next blood work in 2 weeks … will determine next infusion date).  Although I am feeling tremendously better, my body will still not maintain adequate ferritin iron levels, which is why they supplement me with oral iron and continue with sporadic IV iron infusions when my levels get below a certain point.  The low ferritin levels contribute to my exercise intolerance & fatigue, which continue to be a factor, but are MUCH improved.  I also still suffer from heat intolerance, but that is also slowly improving a bit.  I continue to take frequent “movement” breaks when sitting for extended periods and I figit around when standing to keep my blood moving.  I start school this week and am carrying a full course load (with one study hall to rest during the day).  I plan to play ice hockey & lacrosse for the school and am looking forward to a successful sophomore year.  Here are some photos from the summer:

Surfing in CA in July (I am on the right):

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My sister and I in CA in July:

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Family surfing lesson in Long Beach, NY in Aug:

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Hockey Helps Marathon (my dad and I with ex-pro Benoit Hogue):

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UPDATE – MAY 2016 – It has now been 3.5 months since I returned from the Mayo Clinic PPRC.  Last week was my last week of the JV lacrosse season and I made it through successfully!!!!  🙂 The first week of practice back in early March was intense and demanding.  I was sick for most of the second week and thought, “here we go again”, but my sister was also sick with a virus that week and we have decided that I was sick with the same virus, instead of “POTS sick”.  I say that because I have not missed a day of school or a single practice since!  I struggled at practice only one day and sat out a few of the drills, but, in general, my level of activity in both sports and school is FULL PARTICIPATION!

This coming August will mark two years since I got sick, so 20 months ago.  When I first became ill, I was 5’3.5’’ and 105lbs.  I drew down to 95lbs and am now 5’10’’ and 150lbs – WOW. If you search the web for POTS success stories or Dysautonomia success stories, not much comes up.  The people who do claim success usually have secondary POTS and were able to find a cure for the primary illness.  Further, I get why people don’t claim success, because you are always holding your breath waiting for the symptoms to reappear. At Mayo, a past patient (who is now living a full life) addressed the class about his experiences at Mayo.  One of the mothers asked if he still had POTS.  He paused and said, “yes, I still have POTS if I stop to think about it, but I don’t think about it anymore”.  I think I am approaching this “have-it-yet-don’t-need-to-think-about-it” level of health.

I still have POTS (my pulse is still 90bpm when I stand up – or even just sitting – and if I stand still my pulse will go meaningfully higher), but my symptoms have improved GREATLY.  I am still on Midodrine, salt, water, exercise, and iron supplements.  BUT, I have great energy, my appetite is back to normal, AND I am not suffering from exercise intolerance. Additionally, we have tapered down my Midodrine dose by 1/3.  I would like to taper completely off this summer (my mom says that we will see how things are going).  Additionally, my body will now absorb iron orally and they have been supplementing my IV iron infusions with oral iron supplements.  This has allowed them to push my IV iron infusions further apart.  Before, I was going approximately every 5 weeks.  It has now been 11 weeks since my last IV iron infusion.  My iron levels are still deteriorating, but just at a slower rate with the added oral iron supplements.  I will probably need another IV iron infusion in the next several weeks (before final exams and regents).

I think anyone who has unexplained gut issues (sometimes accompanied by depression and/or anxiety) and has gone through the battery of tests without a diagnosis (plus anyone who gets lumped into the CFS/ME world) should get checked for POTS or at least do a poor-man’s tilt table test.  If you do have POTS, then it is imperative that you go on the salt, extra water, Midodrine or beta blockers, and exercise protocol AND, you need to get your Ferritin iron levels (not just your overall iron levels) & vitamin D levels checked. The best things they have done for me are: (1) going to Mayo Clinic AND (2) giving me Venofer IV iron sucrose infusions.  My Ferritin iron levels were only in the high teens for months.  I was on an oral iron supplement, but my body was not absorbing the iron orally.  My parents read about a doctor in Dallas who had given Fereheme infusions to a few POTS patients with great results.  Fereheme has some adverse side effects, so I ended up getting Venofer iron sucrose infusions with a hematologist in Westchester, NY.  My Ferritin went from the high teens to 50+ and I felt much better within days (I could actually feel a difference on the day of the infusion!).  When we added the trip to the Mayo PPRC on top of the infusions, I GOT MY LIFE BACK!!!  

These photos are from my second-to-last game of the the season last week.  I am #1 in white:

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UPDATE – MARCH 2016 – I have been back at school full time for a month and half and am doing really well.  I made it through my first full week of lacrosse practices – 6 days in a row!  I haven’t been able to play in 2 years.

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UPDATE – FEBRUARY 2016 – I have been back in school full-time for 3 weeks since returning from the Mayo PPRC.  Additionally, I have been playing hockey – both practices and games.  On a trip to FL for Feb break, I spent a lot of time golfing & swimming.  My hockey team participated in the play-offs at the end of February and here are some photos and a video:

Me and my hockey coach several days after returning from PPRC:

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Golf:

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Swimming with my sister:

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I am #4 (in center of photo) on the blue team:

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https://www.youtube.com/watch?v=ELfri5mLPpQ

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