Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

POTS in Toledo Round 2

Written by Katie. Posted in POTS Appointments

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Last Monday, Brad and I traveled to Toledo to see the infamous Dr. Grubb.  When I was first diagnosed with POTS, I researched Dysautonomia like crazy.  Dr. Grubb’s name kept coming up over and over again.  From there, I read many of his research papers about POTS and other types of Dysautonomia. 

I made it my mission to see him after I was diagnosed, so I called his office back in November, and the very nice nurse explained that I would have to wait more than a year for an appointment.  However, she explained that I could see the NP, Beverly, in about 4-6 months.  I told her I was totally fine with that.  Therefore, at the beginning of December I faxed the office all of my test results and diagnosis paperwork.  In March, I was called to set up my first appointment with Bev for April.  On April 20th, I saw Bev for the first time. 

You can read about my appointment here. 

At the end of my appointment with Bev, she said she wanted me back in 3 months to see Dr. Grubb.  I must have had a confused look on my face because she asked, “Is that okay?”  I of course said it was okay but I explained that I thought I still had to wait months until I was able to see him because of his long waiting list.  She told me that because I am now an established patient, I could make an appointment with him next week if I wanted to.  Nice.
So, that brings you up to date to last Monday’s appointment. 
Brad and I had an uneventful drive.  Knowing that Dr. Grubb spends a lot of time with his patients, I knew to bring along books and magazines.  My appointment was at 11:00 and at 12:45 I was called back.  I saw Bev in the hall, and she hugged me and said, “You are seeing Dr. Grubb, right?”  I told her I was and she gave me a thumbs up.  So welcoming.
Once we were in the room, a medical student (on his very first day with Dr. Grubb) came in and asked me many questions about my history.  He asked what I wanted to go over with Dr. Grubb, and I showed him my very long list of questions.  His eyes grew a little wide and said, “I’ll tell Dr. Grubb, you have a variety of things you would like to talk about.” Ha! I had only been writing down questions for the last month. 
After the medical student left, I could hear him talking to Dr. Grubb about me in the hallway.  A few minutes later, they both came in.  Dr. Grubb introduced himself and shook our hands.  I felt like saying, “You don’t have to introduce yourself; I have been stalking your research and work for months now,” but I decided against that.  I didn’t want to scare him off in the first minute.
He sat next me and asked, “So, how have you been?”  I told him each day is a roller coaster~That I have bad POTS days and better POTS days.  I explained how inconsistent everything is for me. 
He stopped me, and said point blank, “And, that’s how it’s going to be.” 
Honestly, I was taken aback by his reply.  I think I had placed Dr. Grubb in an unfair, superhero-like role in my mind, where I was hoping he was going to walk right in and tell me the secret to make POTS go away, and/or give me the magic POTS pill to make everything all better.  This was so not the case.
I asked, “So then how do I get back to my life when everything is so inconsistent.”  This is the first of many times he went over the following with me through the course of the appointment:  Dr. Grubb made it very clear that POTS is a chronic illness.  It does not go away, especially when EDS is the cause, so the most important thing that I can do is realize that the life I had pre-POTS is not coming back.  I must embrace that life is different for me now, and I will either learn to live with POTS, or I will constantly butt heads with it. 
This was not the magic pill I was looking for. 
It was honestly a hard pill to swallow.
But it was one that I needed regardless. 
Dr. Grubb explained further that I must learn to live AROUND POTS, just like any other chronic illness.  He reiterated the fact that it is important to still live, and enjoy life, but living will just require more planning, and more discipline, and more limits.  Boy, have I learned that along the way.
With that, he pulled up some slides and went over a lot of the history about Dysautonomia.  I could not believe that POTS has been documented since the 1600’s.  Dr. Grubb showed me one painting from hundreds of years ago of a woman laying down, looking sick, while a doctor was taking her pulse.  The painting showed blood pooling into the woman’s hand.  It was called “The Pale Disorder.”  So, so interesting. 
After discussing a lot about what POTS is, we got to the nitty gritty about me and how POTS is affecting me. 
(Remember, I am not a doctor.  This is my best attempt at recapping my appointment, so I apologize in advance if some of the information/medical stuff I write about is inaccurate.  Also, this information and treatment plan is meant for my personal use only).
I asked…
*How do I take Midodrine more frequently if I cannot lay down while I take it, and I find that I need to lay down during various times in the day?  Also, how many times am I to take my Beta Blocker, Propranalol?

Dr. Grubb believes that my Midodrine (it constricts my blood vessels) may be wearing off too soon.  He wants me to experiment with taking it more frequently to see if this helps with hopefully not needing to lay down and put my feet up as much.  (I was told not to lay down while on it, because it may spike my blood pressure too high). 

I am to take Propranalol just once a day.

*I asked if it makes sense that my POTS is worse on days I have more neck pain, more GI problems, when I am on my period, and when I am not well rested?

Dr. Grubb explained that there are so many factors that can affect the Autonomic Nervous System, and therefore POTS.  Weather, viruses, amounts of rest, altitude, stress, hormones…

As far as my GI problems goes, he explained that a lot of my blood is most likely pooling in my stomach, which affects my GI tract.  Also, he explained that digesting food takes 1/3 of my energy so it is crucial that I try and eat smaller meals.  As far as my neck pain goes, he explained that there could be some compression issues going on, as well, as the fact that the neck area already has a small blood supply.  I asked if he has had patients who have had C1-C2 fusions, and if so, has it helped their POTS symptoms because of the cranio-cervical instability caused by EDS? It was Dr. Grubb’s thinking that the surgery would not make a difference either way.  However, he did say, that he has not had enough experiences to really know for sure. 
*I asked about exercising, and his thoughts about the best exercises to do for POTS.

Dr. Grubb reiterated that reconditioning is key to improving the quality of my life.  The better my body is reconditioned, the better my muscles will serve as a back-up for my stretchy blood vessels.  He told me about one study that showed that some patients with POTS had success using a rowing machine because it is a full body workout, as well as a sitting down workout.  He explained that when blood pools, most pools in the stomach, and some pools in the legs. Therefore, strengthening the core and leg muscles is very important. 

Besides the rowing machine, he mentioned using a recumbent bike, and swimming.  Just like EDS, he explained that building myself up will continue to be slow going, but is something I must always stick with.  (I credit reconditioning for the progress I have made since last summer, so I totally agree with him from my own personal experience). 
*I asked if it is better to push through the sickness and fatigue, or to rest and recover?
Dr. Grubb told me to not push through it…to rest, get some recovery time, and then get back to whatever I am doing.
*Dr. Grubb’s opinion on pregnancy:
Dr. Grubb actually just finished researching POTS and pregnancy and was able to give me a copy of his findings.  Basically, he feels that it is totally possible with a high risk doctor and weekly check ups.  He told me that I can take Propranalol and Midodrine while pregnant, and that POTS symptoms are dealt with as they come up.  He did explain that if I choose to get pregnant, it is so important to nurse, so I do not have a sudden hormone change after pregnancy, because this could send POTS into a tailspin.  He explained that nursing prevents a drastic hormonal change, and therefore the change in hormones is gradual, which is much easier on a person with Dysautonomia.  He explained that the second trimester is usually the best, with the first being the worst.  He explained that the third trimester often depends on the size of the woman’s uterus. 
*The working world…

We talked a lot about me working again.  Dr. Grubb said he truly believes that I have made the progress I have, because I took the year off from teaching and solely concentrated on my health.  He did say that if I go back to work, it is so important to realize that a) I do not have the same kind of life anymore and b) I must ease back into it to try it and see how I handle the working world with both POTS and EDS.

*All of the “others”…
  • Drinking lots of water is imperative. 
  • I am on the right track.  The only thing for me to change right now is to experiment taking more Midodrine, and come back in 3 months.
  • Yes, I should get a medical ID bracelet.
  • I throw up a lot because of the blood vessel stretchiness in my stomach, and because my bowels do not move like they should.  Dr. Grubb wrote me a prescription for Zofran for nausea.
  • “There is no way the woman you were is coming back.  Let go of that idea.” ~Dr. Grubb
  • I am not severe enough to benefit from consistent IV treatments.
  • If I need it, my course of treatment can be modified and my meds can be increased.  “This is not all there is.”
  • Each POTS person is different!  This is exactly why I see Bev and Dr. Grubb.  They recognize that there is not a “one size fits all” treatment plan for Dysautonomia.
My reaction to the appointment…
When we were talking about exercising, all of my emotions caught up with me.  When I told him how I used to run, I just lost it.  It was really interesting because, right in that moment Dr. Grubb became less of a doctor and more of a friend.  His whole demeanor softened, and he shared with me very personal details about how “life” has also happened to him, and that he knows how hard it can be to lose the life you once knew.  He asked if I was seeing a psychiatrist, and I told him I was. 
He explained how he has been on the sick side AND the caretaker side, and talked to Brad a lot about how he believes it is harder to be on the caretaker side of things.  I appreciated it so much that Dr. Grubb took the time to acknowledge Brad’s feelings and emotions too.  We talked a lot about the importance of adaptation.  We also talked about the blessings that can come out of hard situations.  When I left, Dr. Grubb hugged me, and told me it was going to be okay. 
As we walked out of the office, I felt absolutely DRAINED.  I cried for the rest of the day.  I did not answer one phone call.  I kept beating myself up because most people would have said it was a great appointment. 
I am on the right track.  I received hope for pregnancy and work.  I don’t need the involved, major POTS treatments. Dr. Grubb had just spent 2.5 hours helping me, and showing me what an incredible man he really is. 
But after a while, it dawned on me as to why I was so upset.  I was grieving my old life.  Although I appreciated his direct honesty, Dr. Grubb’s words had hit me much harder than I thought at the time~the idea that the life I once knew is not coming back. 
I have now had a week to process it all.  I have come to the conclusion that this grieving is normal, but it still doesn’t make it any easier.  But in the last week, I have also thought that maybe, just maybe, this new life is not necessarily a bad thing.  Maybe it’s a blessing, and through my grieving, I will come to see that more and more.  I always say that it’s all about perspective.
It’s a funny thing as I think about it more and more.  Dr. Grubb was not who I imagined him to be.  He was not the superhero that swooped down from the Heavens and saved me from this thing called POTS. 
He was more than that. 

He was honest.  He was knowledgeable.  He was helpful.  He knew what I needed to hear, and how direct to be with me. He was human.  He was emotional.  And he showed me that it was okay for me to be all of those things too.  

When I went out to get the mail today, this is what was waiting for me…

Dr. Grubb again knew what I needed.  And his timing was impeccable. 
Maybe I was wrong all along.  Maybe Dr. Grubb really is what a superhero is all about…Someone who swoops down and shows you pure kindness, that they care, and that you’re never alone.

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