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.

The anatomy of PE's

At that point, I was in the fancy Heart Hospital being treated mainly for the PEs, was told I may have to terminate the pregnancy because of the clot in my heart, and they were considering surgeries and all kinds of fun things.  I kept having PE's for the next 2 months as my clots broke off, so that was awesome.  I stayed inpatient in the hospital, and the vertigo eventually subsided completely, but I was already deconditioned and very POTSy.  Without fluids my BP was crazy low, and my heart rate was shooting up.  They tried weaning me off fluids and my BP and HR got so bad they threw in the towel and sent me up to Hopkins.  I had only been home about a week total in between admissions at that point in 3 months. I missed my son, my husband, and my doggies.  I had to shut down my successful and busy floral design business. I had to back off from another business (opening a loft style event venue) we had started up and finalized the papers for right before I got extremely sick.  I rarely had visitors, mainly because my lungs were in such pain that I couldn't tolerate talking and wanted to save what little I had in me for my short visits with my son.  And because people had better things to do (just being honest).

I went to Hopkins, and then started having vasovagal (dropping blood pressure AND heart rate) fainting episodes - which scared the heck out of me.  I had never had these before.  My O2 saturation would drop dramatically as well.  They were catching all this on the monitors, but still tried to send me to my parents house in NoVA after a week of no improvements, and weaning me off IV fluids by making me consume mass quantities of salt and water. After they decided I would not have to terminate the pregnancy AGAIN due to the massive clot in my heart, they decided I "just had POTS" and was on my way.  I fainted twice on the way out of the hospital and while in the car, so we turned around and my parents demanded I be re-examined.  The OB docs finally turned me over to an excellent team of internal medicine doctors who consulted with Dr. Peter Rowe, who normally only treats kids, but is a POTS specialist and was brought in to help.  They were mortified at me being sent home.  They started me on Florinef (only .025mg slowly titrated up to .1mg/day) and had their amazing physical therapist follow his regimen for POTS.    This is another reason I suggest you have not only OB doctors lined up, but a POTS knowledgeable cardio and neuro if possible.  Both sets of high risk OB doctors I dealt with meant well, but really had no clue how to handle severe POTS.

super uterus!

Through this, the baby was thankfully fine.  I had radioactive lung scans, X-rays, multiple MRI's, CAT scans, and lots of antibiotics because no matter what, my white blood cell count is always high to this day (no one seems to know why, or care much, but I did recently come back positive for chronic EBV, so who knows).  Our little girl was curled up in my super uterus of protection, and growing and developing normally. Thank God.

The rest of the pregnancy was much of the same.  Doctors scratching their heads, me being sent back to Norfolk to be close to my family (hadn't seen my son in a month!), having to fight about medications I wasn't comfortable taking, not being able to talk/breath, being in massive amounts of pain, oh - and passing out A LOT.  Passing out on blood thinners while pregnant makes you a liability nightmare.  So I had all kinds of fun rules during my confinement, like having to pee in a bucket with someone in the room holding me up, no showers - only sponge baths, and periods when I had to have complete strangers in my room monitoring me 24 hours a day because I would pass out just from sitting up, and they didn't want me falling out of bed (it happened a few times).

My son celebrating his birthday on my hospital bed

I got to go home over the summer while my husband was home from teaching for about 3 weeks, which was nice, except it was terrifying due to my radical swings in blood pressure and heart rate, and having to lay on my left side for 6 months straight had gotten old.  At that point, if I rolled onto my right, I was dizzy and my BP went nuts.  So the left side it was - and it hurt.  I have costochondritis (chronic rib tissue inflammation), and have been told I have everything from Fibro to Chronic Fatigue, to possible connective tissue disorders - all of which I ignored up until this experience.  The constant pain for many months on end and no way to get up and stretch or walk around was horrendous.

So back to the hospital I went, and there I stayed praying for labor until 38 weeks finally came and my amniotic fluid started leaking.  Actually, my resident felt so bad for me she swept my membranes pretty forcefully without telling anyone a few times to get the show on the road.  Leading up to that, they could not get my blood thinnned properly, and had switched me back to heparin shots - of which I needed 12 a day.  This lasted for a few weeks, until I begged to be on an IV, since I was getting continuous saline anyways.  They showed mercy for once, my legs were black and blue and swollen and I had to lay on my left, so that felt awesome. 

My Gabi!

At multiple times through this, the cardiologists, endocrinologists, OB's, internists, hematologist, vascular surgen, and neurologist all told me NO MORE BABIES.  I even had one cardiologist tell me she would tie my tubes herself!   But that made the health of the baby that much more important and stressful, and again - she is a tough little girl that make it through this unscathed.   Birth was once again hell, I really hate the act of having babies -and  I won't go into the gory details because it was so terrifying and painful I think I'll be in therapy for a while dealing with it.  I won't go into the details of being kept inside a hospital for 9 months, not being able to see my son regularly, tuck him in at night, wondering if I would be around to see him grow up, and the toll it took on my marriage and how much my husband did to help our family survive.  In the end, Gabriella was born, after a few smacks from the doctor she perked up and has done great ever since.   So it was all worth it, and I would do it again if I had to for her.  But NO MORE BABIES FOR ME :) 

So - that was long - but here are a few take home points from my terrible, scary, therapy and PTSD inducing second POTS pregnancy:

1. You must fight for what you think is right for you and your unborn child.  Do not let doctors, family, or anyone else force you into taking drugs or participating in activities you feel in your gut are not right.  I of course consulted with my husband, and it was incredibly hard to be my own advocate, but because of my science background and how complex POTS is, I really felt no one else knew what they were doing.  Some of my doctors admitted this to me.  They were willing to just throw medication at me to see if they worked - with no knowledge of how they would effect the baby.  I had to fight and stick up for myself, and do research on my iphone from a hospital bed if necessary. 


2.  Learn about blood clots, and consider getting tested for clotting factors.  Pregnancy ups your risk for clotting anyways, and if you are sick and in bed a lot, that increases your risk even more.   They can run a simple genetic blood screen to test to see if you are more prone to clotting, especially the Factor V Leiden (which it turns out is quite common).

3.  Find your POTS cause.  If I had known (and I still don't!  They are still testing me!) what was causing my POTS, my treatment would have most likely been drastically different and not a crapshoot of treatment options, none of which I fancied much.

4. Have a medical binder with printed out research and medical journal articles about POTS and what is causing it (if you know), your medical records, and any other info needed with you at all times in case you end up in the ER.  

5. Find a support group or consider therapy if needed.  Being POTSy is scary enough - add pregnancy into the mix and it can get down right terrifying.  There is no shame in that.  You can get helpful hints and tools from other Moms who had kids with POTS as well.  We started a Facebook group for Parents that suffer from Dysautonomia, and have lots of expectant women in it as well.    

6. Avoid bed rest and deconditioning at all costs, unless you absolutely must for your health and the babies.  This is what I am convinced made everything worse for me, and ALL Dysautonomia doctors agree that you must stay upright and active as much as possible to keep symptoms at bay.   I am still fairly bed bound, and almost totally wheelchair bound with zero activity tolerance 10 months after having the baby.  The PT at Hopkins got this, but unfortunately back home they were more concerned with liability than the long term effects of forcing me to stay in bed (I'm not bitter, I swear!).


Information Regarding Medications and Pregnancy:

I wanted to provide some links to resources regarding meds and pregnancy, as this is a hot topic, and unfortunately there is just not a ton of info on how medications effect unborn babies.   This is actually good - who wants clinical trials performed on fetuses!    ALWAYS talk to your doctor about medications, I am just providing links.

• The Safety Categories Explained
• Web MD; Health and Pregnancy: Safe Medications (Over the counter listing and alternative medications included as well)
• Florinef and Pregnancy Warnings (it seems pretty widely accepted that Florinef is one of the safer drugs to take, as people with Addisons and other conditions have taken it for many years with no statically significant harm to unborn children.)
• Midodrine Pregnancy Warnings: Midodrine has been assigned to pregnancy category C by the FDA. Animal studies have revealed an increase in the rate of embryo resorption, reduced fetal body weight, and reduced fetal survival when administered in doses up to 13 times the recommended human dose. Animal studies have failed to reveal evidence of teratogenicity. There are no controlled data in human pregnancy. Midodrine is only recommended for use during pregnancy when benefit outweighs risk.
• Beta Blockers during pregnancy
• Support group threads I found helpful discussing medications during pregnancy:
• POTS and Pregnancy 
• DINET - you can do a search and find loads of threads on meds and pregnancy
• Beta Blocker discussion
• Florinef, Pregnancy and Bioidentical Aldosterone 
• GOOGLE IT.  Try to find reputable sites, like through the NIH or Mayo Clinic

 That's it!  Hope this helps, and feel free to email me with any questions or for links to resources.
 
--Claire