Living with POTS
& understanding it
Dear Friends and Family,
As most of you know I was diagnosed with Postural Orthostatic Tachycardia Syndrome [POTS] in 2009. POTS is a very rare genetic disorder. It took almost a year and a half to finally get the correct diagnosis. I was in and out of many of the finest hospitals in the country.
I felt so relieved after finding out that the doctors had finally made a diagnosis. Little did I know there was a long and painful road ahead! I was sent home with a cardio net monitor for 30 days. It recorded that the sinus tachycardia part of my heart was not functioning normally.
During this time my whole life was changed. I went from driving my kids to school, attending all of their games, caring for our new daughter, cooking dinners, working out at the gym, traveling and loving life to suddenly being unable to walk from my bedroom to the kitchen without help. I could not even shower or dress myself. My family’s life was turned upside down. I spent most days at home. I could no longer cook for my family, and traveling was out of the question. We were forced to hire full-time help.
During Christmas of 2009, I could not participate in any of our holiday traditions. I could not believe what my life had become. My sister told me about a doctor in Toledo, Ohio who specialized in Hyperadrenergic POTS and had a high rate of success in treating his patients. His name was Dr. Blair Grubb, my angel in a white coat.
I called Dr. Grubb’s office the day after Christmas. His office told me the waiting list for an appointment was over a year. My heart dropped. She explained that people from all over the world traveled to meet with him. She told me to fax all of my medical records to him and he would review them. If he thought he could help me, they would contact me. So, I sent the records that day and waited.
The phone rang in May 2010. It was Dr. Grubb’s office. There was a cancellation and he could see me next week! I was thrilled and scared all at the same time. I told her I didn’t know how, but I would be there next week. Finally, there was hope!
On May 24th at 8:30am, I was in the cardiovascular unit at the University of Toledo Medical Center. Dr. Grubb spent the next 6 hours with me, my mom and my husband. I explained my painful journey dealing with this disorder. I told him he was my last hope!
He went on to explain that he was the doctor who actually named POTS and there were at least 38 different forms of POTS! He ran some tests and then we talked. He put my hand in his and explained to me that I was not getting better because I was not being treated for Hyperadrenergic POTS! He also discovered that I had Mast Cell disorder and that I was Joint Hyper Sensitive. Without treating all of these disorders there was no way I could get better. He looked at me and said “I can get you 70% better from where you are now!“ My eyes welled up with tears and my mother and husband started to cry.
Dr. Grubb sent me home with new medication and a new plan. The plan included: talking with a therapist, acupuncture, yoga, and massage. It took 5 months to get me on the right medication and dose.
Over the next 6 months my daily symptoms started to get better. I was able to do more activities. I started to run some errands again. I went to lunch and the movies. We took family vacations, and I was able to cook dinner again for my family.
I went back to see Dr. Grubb in April 2011. I was very excited to see him again to see what adjustments he would make because I still had a long way to go. As I looked around the waiting room I could tell who had POTS. There is a look about us, especially in our eyes-a certain sadness. My family and I spent the next four hours talking to many of Dr. Grubb’s patients. All of their stories were so sad. Many had lost jobs, family, and friends. Most could not drive and they all rarely left their homes. I met one particularly beautiful girl in her 20’s. She was married with a 2-year-old son.Her name was Candace Dinello. Her husband had to quit his job to work from home in order to take care of her. She was shocked that I had flown on a commercial plane to see Dr. Grubb. I told her it was very hard, but somehow, I did it! It was so comforting to be able to sit and talk to someone that was going through the same daily struggles. We exchanged email addresses, and we still talk on a regular basis.
Finally, it was my turn to see Dr. Grubb. I was with him for 4 hours. I now had developed an enzyme problem that was called CYP2D6. It meant that I was not metabolizing medications normally. I also had developed very painful Fibromyalgia and Chronic Fatigue Syndrome. Once again he adjusted my medications and treatment program. He explained that because of my problem with medications I was going to have to work that much harder to get better. Once again he took my hand and I looked into his clear crystal blue eyes. He made me promise to walk 20 minutes 5 days a week—no matter what.
He told me I had to build up my leg strength and re-train the blood flow to my heart. His goal for me was 20 minutes a day. This felt like he just told me to go climb a mountain. I looked deep into his eyes, and I promised to walk.
I went home and could not imagine that I would ever be able to walk 20 minutes. The first week I walked to my mailbox; the next week to my neighbors’ mailbox. Every week I added a mailbox. Today, I am walking over 30 minutes 5 days a week. It took a very long time but I did it!
For my birthday this year I got a bike. I didn’t even know if I could ride it, but I knew I wanted to try. I jumped on it and took off. I was shocked. I could do it! My family and I started to travel again. I could go to my sons’ games, take my daughter to school, and have weekly dinner dates with my husband. The dark clouds were beginning to part.
I recently returned from another successful trip with Dr. Grubb. I was so excited to see him to let him know that I was doing better. He walked in the examining room and hugged me! He said “Oh my gosh, you are so much better!!! You look so much better!” I told him about the bike and my daily walks! He told me to keep going and never let POTS symptoms control my life.
A few days after each visit with Dr. Grubb, he would send something in the mail. Dr. Grubb sent me his book called the “Calling “. Inside he wrote, ” Virginia, May you go from Strength to Strength!” Dr. Grubb is a rare and unique physician. He has dedicated his life to his work, research, and patients. I know that it is because of his hard work and dedication that I got better. That is why my family and I have stared this foundation. Dr. Grubb needs more funding to continue his research and to further awareness about POTS. If you could please open your hearts and give to his foundation it would benefit so many POTS patients.
Please click here to donate.
P.S. I would like to thank all of my family and friends who have been with me on this painful journey. I would like to thank Dr. Andrew Rosen for his patience and understanding, Dr. Lisa Perdue for her compassion and insight, and Tatiana for her healing spirit. To Dr. Santa Maria- Thank you for always being on my side and for your level head! Conswella, thank you for being my ‘everything’; you are my rock.
And to my dear husband Dan, you have shown me the meaning of unconditional love, I love you!
To my mother and father and my children (Thomas, Nic, and Lily), thank you for never giving up on me! You told me I could do it, even when I wasn’t sure. I know now this is my ‘calling’.
POTS patients please always remember:
When you think you can’t, you CAN! -Candace Dinello
With all of my love and thanks,
Dr. Blair Grubb
World-renowned cardiologist whose expertise in syncope leads people from around the world to UT Medical Center seeking leading edge treatment.
P.O.T.S. is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. The primary symptom of OI is lightheadedness or fainting.
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