Leah’s story as told by her mom, Karen . . .
There is a lot that has gone into Leah’s journey and recovery from POTS. She suffered for several years before finally being diagnosed in February 2005 at the age of 13. At the initial diagnosis and over the years, we were optimistic that she would eventually outgrow the debilitating symptoms when she was in her early to mid twenties. However, at our last appointment with Dr. Philip Fischer in July 2010, at the age of 18, Leah was declared POTS free!
POTS not only affects the patient, but it also affects the entire family. Friends, like schools, often do not understand. A social life becomes nearly impossible; unless you have a wonderful older brother, like Ryan, who graciously lets you hang out with him and his friends, even if it means bringing little sister home early when her body begins to fail her.
Our family reinvented life, and we even added special pets that include a little dog and an amazing horse. Leah made positive connections with friends via the Internet. She had allergy testing to help her figure out what foods and other allergens to avoid. On good days, she might have her hair cut and styled. Basically anything that gave her the edge on feeling better physically and emotionally was incorporated. Leah drank lots of fluids, increased her salt intake, ate healthy foods, took vitamins and did the simple exercises prescribed, but still it wasn’t enough. She was tired of being the “sick girl” and living life totally around this debilitating illness.
Leah learned to listen to her body, and she figured out that she felt better when she exercised. She decided to make the best of every day, even if it was only for a few minutes a day. Out of boredom and sheer determination, she started walking on the treadmill. When she first started, she could barely walk ¼ of a mile. Slowly, over time, she built up her endurance and she started to run. Despite reading how exercise makes many people with POTS feel worse and how strenuous exercise should probably be avoided, Leah began to notice that exercise actually “bought” her extra time of feeling better. She began to seek out the treadmill so she could run when she began to feel her blood pressure fall. Later, after she began to build herself up and began to feel better, if we had plans to do something, she would run on the treadmill before we left in order to “buy” more time. Dr. Fischer gave her the go ahead to run – to run as far as she could.
In May 2009, after doing some research, I purchased CW-X conditioning tights that Leah wore even when she wasn’t running. The results were absolutely amazing. They actually seemed to push her over a hump and gave her the edge on feeling better. It was as if the conditioning tights were helping her brain figure out how to stabilize her blood pressure. Leah began to run more and even had a ten minute mile. Later that year, Dr. Fischer challenged Leah to an eight minute mile. Leah, who is only 5’, took the challenge and got it down to seven minutes! She was feeling fabulous! She began to lift weights and train with kettle bells. Now, instead of people telling her that she doesn’t “look sick,” she has people tell her that she’s lucky and that they wish they had her body! If only they knew!
In July 2010, at Leah’s last visit with Dr. Fischer at the Mayo Clinic, she was declared to be POTS free! She was POTS free because she had become a runner.
POTS is not completely understood, and she still has a few minor health issues to overcome. However, these issues are minor compared to her previous condition.
As of the fall of 2010, Leah is enrolled at a local college and is working part time. She is looking at different colleges and is exploring several career options where she can use her personal experience to help others.
Recovering from POTS will not happen overnight, and if your body is deconditioned, it will take longer. Exercise helps keep the blood from pooling in the limbs. It also keeps the blood pumping and flowing which keeps the blood pressure up. If you have POTS, listen to your body and use what few moments that you might have every day to at least walk for a few minutes. Gradually build yourself up to power walking or even running. This will help build and strengthen the leg muscles, which is quite beneficial. Recovery, especially early recovery, can become a real possibility.
We are grateful for Dr. Fischer’s guidance and patience as we asked many questions and for so many directions along the way. He encouraged Leah’s positive attitude and challenged her to push herself further. We know – Leah knows – that she is POTS free years ahead of schedule because she became a runner. In essence, she is truly running ahead of schedule!
Leah talks about her journey with POTS . . .
Leah’s mom . . .