I'm back

Did you miss me?
Life kind of got in the way of any journaling there for a while.

We tentatively have a gestational surrogate. Shhhhh. Don't jinx it.

We wouldn't be starting a cycle till July of 2009 however. That seems so far away. But if the first cycle takes then we would have a spring 2010 baby.

IF we can afford it.
IF the surrogate says yes still.
IF it works.
IF I can handle the stimulation drugs.

So many ifs.

I'm getting my tubes tied. I don't want birth control and fear of pregnancy to ruin my life. So, sometime before the holidays I'll get it done. I've already got the call in to my OB/GYN.

I took Sarah to the doctor today. Her teacher had commented to me how tired she always seems in class. I've noticed the same thing, that she is just really, really tired during the day. She still sleeps about 11 hours a night. So we saw good old Dr. Brooks today and voila, her iron levels are at 9.6. Normal is over 11.5. Unfortunately she also has beta thalasemia so iron pills aren't likely to increase her levels. We can supplement to make sure she has the necessary building blocks to raise her iron levels, but I don't know that it will work. I think it's because my iron levels don't seem to correlate to when I have high iron/low iron diet or supplementation. Thalasemia sucks. Well, thal major would suck worse than thal minor. Given her father and my history of heart issues, the doc also agreed to my request for an echocardiogram.

The cardiologist he referred her to was mine. I'm not sure if I want this group to do her echo or if I'll try and change it to Children's Hospital Oakland. I'm glad we'll have a baseline echo to track changes and make sure everything is all right.

Work is iffy. No one seems to be buying in this economy. I got back from the ABC Show in Vegas and nada. The call backs and emails I was doing did a bit, but not much. Not very much follow through. Orders kind of sucked. And after the economic news this week there's no way I can start calling and pressuring stores, "Hey buy my stuff!!"

I'm going to try and find a part time job for while Sarah is at school. If I can just make enough to pay for the surrogacy, that takes alot of pressure off of Frank. It's not fair for him to bear the brunt of all this and the business just isn't making enough to pull in profit.

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.  

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.  

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.

History

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

Diagnoses:

Peripartum Cardiomyopathy (not for certain, if not then Idiopathic Cardiomyopathy)

Beta Thallasemia Minor