Anniversaries, POTS Perspectives, Suggestions and Such

I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website.  I also have been doing a few "normal" things and living life a bit.


BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.

So ten years. Did I think this would be going on for a decade? NOPE. But it has.

Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:

"Oh, POTS is no big deal, you'll grow out of it"

~or~

"I have no clue how to treat this, NEXT"

~or~

"It's just anxiety, take some Zoloft"

I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.

And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...

A post from my personal blog:

Bye Bye Bella Flora: Parenting From A Bed; Grief, Guilt, & Gratefullnes...: My daughter is 11 months old today.  She is a  gorgeous, bright, happy baby - granted who doesn't sleep very well - but she is such a joy ...

Pregnancy and POTS: Experiences & Resources PART 2

In PART 1 of this mini-series, we discussed my first (excellent) POTS pregnancy and the data published regarding having healthy children when you have POTS.  Now on to the tough part of this, as my second pregnancy was a nightmare.  So here's an oversimplified version of what happened, and I'm including some thoughts and links regarding medications at the end.

The Second (NIGHTMARE) POTS Pregnancy:

In December of 2010, I knew something was wrong.  I had been functioning most days for the last few years since my son was born, with fluctuating symptoms that I had been trying to hide from business related folks, and had given up fixing with doctors.  But they were tolerable - episodes of tachycardia, light-headedness, chronic pain and fatigue after working long hours, and severe hypoglycemia.

I was suddenly feeling like I was going drop, and spinning, and my heart rate was nuts.  I was also not retaining any fluids, no matter how much salt loading and drinking I did.  Then I found out I was pregnant right after Christmas, and everything changed.  Within a week, I was sick, bed bound, and knew something was severely wrong. The first week of January was my first trip to the ER after blacking out when I stood up too fast to grab my son (who decided climbing on a counter top was a good idea!), and I couldn't get my heart rate under control after, even laying flat.  This is also when a month+ of vertigo began.  Horrendous vertigo, like I had never before experienced.  

The month of January I was back and forth to the ER and was admitted multiple times.  Then in early Feb I was sent to a rehad/nursing center because I needed constant monitoring, continuous IV fluids, and had a PICC line placed.  Only once the IV fluids were upped did I start to see improvements with the vertigo.  Unfortunately, my PICC line was not cared for, and I developed massive blood clots along the line that were ignored by the staff at the nursing home.  We had to threaten legal action to get me medically released, as the doctor at that horrible place blew me off and thought I was having muscle pain - and was massaging Aspercreme into my clotted area (nice).

After coming home, my nurse was appalled at what I told her and saw the state of my PICC line and sent me to the ER.  We found out I had 5 DVT's and my jugular was completely clotted off. I hadn't been able to turn my neck for days, and they had been rubbing my clotted area at the nursing home, and the clots had broken off and started migrating to various dangerous locations.  I was admitted again to the hospital, but was still blown off when I complained of extreme chest pain and difficulty breathing, and told "it's just your POTS" and sent home after a week.  Well - it was not just my POTS - it was over a dozen bilateral pulmonary embolisms (PE's), plus a 2 cm clot in my right atrium.  Turns out they had sent me home on the wrong dose of Lovanox (a blood thinner) and ignored my OB doctors demands for my clotting factor to be tested.  If I had not kept going back to the ER and demanding they do something or I was going to pull out that stupid PICC line myself, I would have died, along with the baby.  Being pregnant, bed-bound, and having a PICC line is the trifecta of blot clotting risks.  Add to that the fact that they finally tested me for clotting factor conditions, and I came out positive for the Factor V Leiden gene, so basically I was a clot waiting to happen.  It took me almost dying to get the treatment I needed, and even after that - it was a 9 month struggle and fight with the hospital and doctors around here.  That's why I advise people to have a plan in place and a support network of good doctors familiar with your brand of POTS.

Pregnancy and POTS: Experiences & Resources PART 1

This is a big issue for women and families affected by POTS, and the topic I get the most questions about.  Being that POTS affects mostly women of childbearing age, and there are very few resources out there, and even fewer research articles, this is not surprising.   I have heard from patients that their doctors are telling them not to have kids, which is heartbreaking, and the science just doesn't back that up for MOST women with POTS.  POTS already robs us of so many things- don't let it rob you of kids (if you want them)!  If you  don't have any life threatening genetic diseases that can be passed on, are not on any medications that keep you alive that would damage a baby, and really want kids - there is no reason not to consider it in my opinion.   It is a very personal decision.  Your underlying cause of your POTS is a HUGE consideration, as well as your functionality and support system.  Of course consult with a doctor about anything medical, as I am not one.

The issue of what drugs to take, how to plan, and what to expect can make for a frightening experience if you don't get as educated as possible on the subject.

I tell everyone:  PLAN FOR THE WORST, HOPE/PRAY FOR THE BEST.

Things to consider when planning for the worst:

-Do you have a good medical team of doctors, including a POTS knowledgeable cardiologist, a high risk OB, and possibly a neurologist? 

-Do you have a support network in place in case you are bed bound, non-functional, or severely ill during pregnancy?  Especially if you have other children?

-Do you have a support network in place to help with the baby after you give birth, especially if recovery takes longer than expected or you have complications from birth?

-Are you on any medications that could possibly harm the baby, and are you willing to try and function without them if necessary?

-Do you have any underlying conditions that could further complicate pregnancy, and specialists and support lined up to help deal with those possible complications as well?