My PA Story

[Guest guest]

I can't tell you all what it means to me to have found this group. A special

thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be

with a group of people who can understand what I've been going through. It's

been a long, strange road.

My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til the

age of 32, I had what I considered to be a very healthy life. I was bothered by

migraines and sweaty hands and feet, but I just took that to be my lot in life.

Dare I say, I was even proud of my health. I was a non-smoking, non-drinking

vegetarian who ate hardly any processed foods, regularly exercised (albeit

gently) and had found stress relief through yoga and meditation. A stay-at-home

mom of one young son (at the time), I had little stress in life. I didn't see

doctors often, but when I did everything always looked " just fine. "

At the age of 27, my son, Lucas, was born at home with a fast labor and no

complications. Looking back, we remember our midwife casually mentioned my

blood pressure was creeping up, but nothing too alarming or unsafe. This was

the first time anyone had ever said I had high blood pressure. I had zero record

in any part of my family history of HBP. In fact, my numbers had always been on

the low end. After that, I would have a couple other mentions of high blood

pressure, interspersed with mentions of low blood pressure, and I began to

suspect I had the notorious " white coat syndrome. " At the age of 32, in early

summer, I became pregnant again. Immediately, my blood pressure readings with

the same midwife, became surprisingly high. Given my " excellent " health and

lack of any BP history, we just watched it. We told ourselves I was very

excited to be pregnant, which I was. I was told to relax.

By late summer, my numbers had crept toward 140/90, at which time I began

working with an OB/GYN. A small amount of Labetalol helped a little, and I was

told to relax. BP crept up. Meds were added and altered. By mid-November, I

was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone

said, but that's clearly what this is. My ankles were swollen, my reflexes were

hyper, I was leaking protein, and my BP kept soaring. I was told to just relax.

Discharged to bed rest, that same evening I returned to the ER with 160s/110s.

The entire staff at this small town hospital were FREAKED OUT. They told me to

relax. They told the Air Vac nurse to prepare for seizures and possible

miscarriage. The big city hospital room was crammed with teams of doctors,

residents, and nurses. My baby was just barely 27 weeks gestation. I stayed

laying on my right side, in a dark hospital room for two weeks. Everyone told

me to take visitors and watch tv..you know...make the " best " of the situation.

I was. Self monitoring, I found the less I talked or moved or ate, the more

stable my BP was....but just barely. It was wild and unpredictable and I had

gained a reputation of being " excitable " despite my calm and gentle demeanor. I

was advised to " just try to relax. " By this time, I don't mind telling you, I

was about to scream " I AM relaxed!!!! I'm a very relaxed person!!!!!! " Doc

after doc shook his/her head saying, " this isn't presenting typically, " and " we

don't completely understand preeclampsia yet. " The magnesium distorted the

room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP

was so high, blood was being vacuumed out of the umbilical cord. My little girl

was delivered via c-section and was two pounds, three ounces. I stayed a patient

myself for five more days, tricking nurses by laying down to do my BP reads and

eventually be discharged. They clearly had no way to manage my BP, and I needed

to be with my baby girl. I stayed by her side in the NICU for two more months.

My blood pressure came down to 145/95. " If the pre-eclampsia isn't gone

immediately after delivery, it will be in a few weeks. " " Sometimes it takes a

few months. " " It can take up to a year. " " Sometimes pregnancy brings up

hypertension in people. You now have chronic hypertension. "

Eighteen months passed. I ate boiled whole grains, green leafy vegetables, and

raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries and

omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking.

Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I

was now uninsured,) told me to find new ways to relax. I'd smile and say " ok. "

Was it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I

don't even know it? AM I stressed? Why is it higher in the mornings?...oh

wait, not always. Why is it lower when I stand up?....oh wait, not always. Is

this BP cuff calibrated right? Why is it lower when my day is actually

stressful?...oh wait, not always.

In the late summer of 2011, symptoms got worse. My heart had frequent, intense

palpitations, my mind was clouding over, my limbs were going numb. I started

accepting the possibility of deterioration and even death. I secretly wrote

letters to my children and laid out passwords for accounts my husband would need

to access. Granted, I was still moving around, but it felt so hopeless and was

clearly getting worse fast. I avoided any hospitals. We didn't have any

insurance, and frankly, I had already been and found them to be out of ideas.

My nurse practitioner decided to check my potassium levels and they were [i

don't remember the exact number] dangerously low (hello, stage 4!). " It might

be because of all your blood pressure medications. " Great. She asked if I'd

see one of her colleagues there at the clinic; a new doctor who just arrived and

was gaining a reputation for his knowledge base..

At my first meeting in September 2011, with BP of 240/140, he said, " I think you

may have one of two types of adrenal tumors. " One blood and urine test later,

he says " your aldosterone level is high (19) compared to your renin levels

(undectable), but all other adrenal hormones look good. Paired with the low

potassium, I suspect you have hyperaldosteronism. The adrenals may be

malfunctioning OR there may be a mass causing the trouble. The good news is

this can be manageable. " With that, he put me on Spironolactone and within

weeks my BP dropped to 110s/70s for the first time in years. He petitioned the

director of the Community Health Center to approve a CT scan for me (free of

charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I

want to give him a bear hug. So far, I've resisted, out of politeness....but it

still might have to happen.

With the help of generous in-laws and the new PCIP insurance, I visited a

nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with

my doc's findings and asked for additional 24-hr urine tests, blood work, and

salt loading tests. I had my follow-up visit today, and they confirmed PA.

Following what I'm told is current Mayo procedure, I am scheduled next for

adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a

good candidate for surgery. They also told me the statistics are just not big

enough for any real numbers. My mass is " more likely than not " the cause of the

aldosterone. An adrenalectomy is " more likely than not " going to remedy my hbp.

The remaining adrenal will " more likely than not " be okay.

I realize I am one of the lucky ones to have come this far in diagnosis. I've

felt at times I was losing my mind. Even now, no professional will confirm this

brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months),

17 day menstrual cycles, or general feeling of " strangeness, " so I don't even

talk about it anymore. This condition has taken a few years of full attention

and almost took the life of my daughter. I am heartbroken for those who have

not yet been able to turn things around. May this forum, and maybe even my

story, give you hope and help you know we are all in this together.