Wednesday, July 23, 2008

I am amazed

I received a bill from Quest Diagnostics for my latest blood test to check sodium and potassium levels (meds might screw those up).  It was for $196.  Hmmm, that's odd.  I thought it would be $10 for blood work.  I also received an Explanation of Benefits from Blue Shield saying that the test or procedure they were denying was experimental or unproven and therefore not covered under my kickass expensive we'll do this cause we have to insurance plan. Speaking of which we might switch to an HMO to reduce costs.  As of July 1 we have to pay 10% of all diagnostic tests, hospitalizations, ambulance rides etc.  I could see that getting very much out of hand.  I know that insurance is better than no insurance, but I also know that we will spend over $1000 out of pocket this month on that 10%.  I just have to do the research on my meds and doctors to find out if they are covered under the HMO plan instead of the PPO.

Hmmmm.  Experimental test??  Lemme check that lab requisition.  LP-PLA2.  Dr. Google here I come.  Hmmmmm, curiouser and curiouser.  I do believe that I was never notified about this test.  I don't have any of the risk factors to take this test.  Shocking, I know.  I seem to have risk factors for everything else.

I call the Cardiologist's office.  Medical billing lady says, let me go check the forms.  Hmmmm.  I'll call you back.

Prompt call back.  (shocking, I know).   (.). I always forget where the period goes with parentheses or brackets.  Ma'am, this test was a mistake on the part of our office.  Please read me the account number and contact phone for Quest so that I can take care of this for you.

Cue shocked silence on my part.  Then clear recital of all requested information.

I am amazed.  Someone, a doctor, nurse, tech, etc, ANYONE, in a medical position screwed up on my care or management.  That, in itself is not surprising, I forgive anyone mistakes.  What's amazing is that they owned up to the mistake and are making appropriate steps to fix the mistake.  Without costing me $196.

Tuesday, July 22, 2008

Off my meds

And no, I'm not non compliant.  I have an exercise stress echocardiogram and electrocardiogram on Thursday.  I'll get to sweat to the oldies and then see how my heart functions.  
For a good reading, UC Davis requires you to be off any beta blockers before the test. So, no coreg for me.  My blood pressure is already rising up from 105/75 to 145/80.  
Yes, I have  called my doctor to make sure I shouldn't take any other meds. 

So we might have more information on Thursday.  I'm hoping to see that my heart function doesn't decrease with exercise, that it maintains or goes up because of the higher heart rate and BP.  I'm also hoping to get back on these meds quickly.  I feel rotten today.  

Friday, July 18, 2008

Reproductive Endocrinologist

We had an early morning appointment with the RE today.  For those not in the know, a reproductive endocrinologist (say that five times fast) is the person who works with infertile (or just broken people) couples to achieve a pregnancy via IVF.  OK, so that was simplified, but hell, whatever works you know.  The RE, Dr. H  was very kind.  The office is kind.  The staff is kind.  It is all you could want from a place that will take a lot of your money and hopefully get you a baby in the end.

We will be doing IVF with ICSI with a GC.  What that means is that we will do a stimulation of my system to harvest enough follicles with ova in them to inseminate them via intra cellular sperm injection to create embryos.  Those embryos will be grown to 3-5 days age at which point 1-2 will be transferred to a gestational carrier.  Hopefully 1 or 2 will implant into her uterus and a baby or two will result.  The chance of twins is between 30 and 50%.  

The cost is between $20,000 and $70,000.  If we can find a GC who will do this out of the kindness of her heart it will be towards the lower end.  If not, well there's no way we can afford 70K.

Thursday, July 17, 2008

Delivery Stalled

I know I promised the delivery tale.  But, I didn't realize how much emotional energy it would take to type it up.  I will work on it and hopefully have it up by next week.  

In other news, Frank and I have a consultation appointment with the reproductive endocrinologist tomorrow morning at 7:45 sharp.  Sarah's have a sleepover with a buddy so we can get out of here bright and early. 

So tomorrow we'll begin our first step to surrogacy.  I'll have a physical exam and a dildo cam to view the uterine cavity, ovaries and tubes.  I don't quite  get why, it's not like I'm going to use them again.  

OB/GYN appt today

I hadn't seen my OB/GYN in a while.  I came in today to get BC pills to help relieve my anxiety about an unexpected pregnancy and the hell that would be.  

She was apprehensive coming into the room.  She looked terrified in fact.  She asked, "So,  what are you here for today, hon?"

When I explained the need for super effective birth control in our situation she said, "whew, thank goodness.  I thought I was going to have to convince you that pregnancy was a bad idea.  did you read the perinatologist's report??  You could die!!"

It might be morbid, but it made me crack up. 

Thursday, July 10, 2008


No one had ever counseled me to not get pregnant.  When I asked at the pediatric cardiologist at my last appointment when I was 18, he said, "Oh, no problem."

We learned I was pregnant after C and I had broken up (once again, not a very stable marriage).  We reconciled and were ok, but not great through the pregnancy.  Early on I had a lot of weight loss, about 15 pounds the first trimester, that I gained back throughout the pregnancy, so at the end I weighed almost what I did when I got pregnant.  I was overweight, so no one was worried about it, least of all me.  
Second trimester went well, regular doctor visits, an echocardiogram to see how my heart was doing during pregnancy.  I had a LVEF of 70% at 16 weeks pregnant.  (That's good for those not addicted to echo results.)  My mitral valve looked OK, some regurgitation, but that had always been there, no other signs of problems. 
 I started having preterm contractions around 21 weeks.  I was working a stressful job at a travel agency and my doctor took me off to lower my stress.  I also started having higher blood pressures around then as well.  My anemia was worsening and I felt really, really tired (even moreso than the first trimester bone tired just pregnant feeling).
My doctor ordered more rest,  more red meat and relaxation.  We were vegetarian at the time and I remember C going out and buying the fixings for beef and barley stew.  It was hilarious to watch him cook the meat, like he was touching, well, dead meat.   I think that is my favorite memory from pregnancy.
9/11 happened while I was on bedrest.  I remember laying shocked, cradling my belly, wondering what hell I was bringing this new baby into.
Around 25 weeks, I started having edema.  Not too bad, but at the end of the day, no matter if I'd laid around my feet were HUGE.
The edema worsened to where it didn't go away overnight and I'd wake swollen.  My wedding ring didn't fit any more.  My shoes didn't fit anymore.  My skin felt tight and stretched.
My BP started inching upwards.  130/85, 135/85, 135/90.
I started feeling shorter of breath and blamed it on the baby pushing on my lungs.
I started sleeping elevated in the bed.  My body pillow wrapped around my side and three pillows under my head and back.
I started having more contractions.
I kept asking my doctor about all these things and he said, "oh, it's all normal, the baby is pushing on you, you're getting closer to delivery, no big deal."
I started having headaches at 30 weeks.  No visual disturbances yet, but headaches that would almost make me cry.
My feet and legs were continuously swollen now, my face was swelling, my BP was going up, but I wasn't having protein in my urine yet.  I was always at 0 or +1 during my pee tests.
At 35 weeks I was taken off any modified rest/relaxation plan.  Now it was time to regain my life, get moving again and get ready for the birth of this baby.
(Interesting aside,  my original due date was January 20, 2002, but it was adjusted to December 25, 2001 at the 20 week ultrasound.)
At 35 weeks, 1 day I made eggplant parmesan for my good friend Frank who came to visit with me and C.  We had a great time.
At 35 weeks, 2 days at 6 am, my water broke.
We went to the hospital, Kaiser Vallejo.  They confirmed it was amniotic fluid and not just me pissing myself. 
And so begins the delivery tale:

Young Adulthood, aka College and the bars

Young adulthood was memorable mostly for how many times I sprained my ankles, not any major health worries.  

I was a nanny for a variety of families from 18 till 30.  I adored taking care of the kids, have built great relationships with parents and just recently attended a High School graduation of one of "my" kids.
I went to San Francisco State University, studying biology, then switching to psychology and then dreaming of transferring schools to do a biopsychology degree.  I had a great group of friends, drank a bit too much, dated, had fun and enjoyed living in the bay area.

I met my first husband during my time at SFSU, we were married when I was 25, pregnant at 26 and delivered 2 weeks before my 27th birthday.  

Childhood History

I was diagnosed with a "hole in my heart" at age 3.  My parents were very young and didn't keep good records about what this meant.  I don't know whether it was an ASD, VSD or some other defect.  I was also told I had mild pulmonic stenosis, a narrowing of the pulmonary artery.  I was diagnosed with anemia at Kindergarten entry and prescribed iron pills, although it wasn't shown to be beta thalassemia till I was much older.

As a child I would much rather read than do anything else.  I started reading at 3 and have never stopped, although I don't spend nearly as much time reading now as I did as a child/teen.  Exercise and Physical Education classes were torture.  I would get out of breath and have weak feelings in my legs after minimal exertion.  My heart would pound and pound for a long time after class, especially the dreaded running the track.  

When I went to the doctor my pulse was always high, between 90 and 110 sometimes higher.  My blood pressure always ranged from 120/80 to 130/85.   My weight fluctuated from mildly overweight to mildly obese to teenaged eating disorder.

I started having headaches in my junior year of High School.  Then joint pains and swelling joints.  I was checked for Valley Fever, Epstein Barre, Rheumatoid Arthritis.  Nothing was helping.  I was taking medication for the headache pain, but I still didn't feel well.  I would vomit from the headaches, I couldn't hold a pencil because of the joint pains, I was tired all the time and felt like my head was going to explode.  
After about 12 months of feeling this way and seeing every doctor we could afford, having my parents almost lose their sanity because their normal daughter was in such pain, I got a new primary care doctor.  Dr. Toussaint Streat worked at Kaiser Fresno.  He said, hmm, let's check you for another virus that I know can cause some of these symptoms.  He ran a blood test and had a CT scan done of my head.  He guessed correctly, I had active cytomegalovirus and the meninga of my brain was swollen from it, causing the headaches and nausea and general feeling of crappitude.  Now that we knew what was causing me to feel awful, we were able to relax, focus on healing and the future.  
I started college at a local community college instead of one of the bigger schools that I had been accepted to, but I had recovered completely by the end of my first year of college.  

Wednesday, July 9, 2008

Family History

Mother:  Mitral valve prolapse with replaced mitral valve at 46 years.  High blood pressure.  Obese.  Arthritis.  History of addiction.

Father: Abdominal Cancer at 51 (desmoid tumors).  Obese. History of addiction.  

Brother:  Detached retina x 2 (both eyes, different events).

Maternal Grandfather:  Died of liver cancer at 65 (he was a mennonite, never smoke, drank or even swore).  Arthritis.

Maternal Grandmother:  MVP with no replacement.  Congestive heart failure.  High blood pressure.  Type II diabetes managed with injectable insulin.  History of obesity, now normal weight.

Maternal Great-Grandmother:  died of "heart problems"  at 36.  No further information available.

Paternal Grandmother:  obese, Type II diabetes (non-compliant), history of addiction.

Paternal Grandfather:  obese, MI at 40, 43 and death by MI at 45, heavy smoker and drinker.

Maternal aunt x 2:  MVP, no repair

No wonder I'm so fucked up.


This blog is my way to chronicle the journey through life with cardiomyopathy, valvular disease, beta thallasemia minor and other odd health ailments.  I read Echodoc's post a while back about not seeing things from the side of the patient and that inspired me to start writing what I'm experiencing.  Just to give caregivers an idea of what a patient goes through, a little background to the "unique case".
Gender:  Female
Age:  33
BMI: 30
Marital Status:  Married
Gestations:  1, delivered at 36 weeks due to spontaneous rupture of membranes and PIH.
Average BP medicated:  110/70
Average HR medicated: 65
BP unmedicated: 120/80
HR unmedicated: 110
Peripartum Cardiomyopathy (not for certain, if not then Idiopathic Cardiomyopathy)
Beta Thallasemia Minor