Surgery Update_February 2009

As you know, we will be headed back to UTSW in a few weeks. Here's the plan; I will have a catheterization on February 16th, which will determine if pressures have improved, stabilized or increased. If pressures have either improved or stabalized then it is my understanding surgery will be a go ahead the following day (February 17th). If they have increased, we will have to re-evaluate plan.

I have spent the last three months preparing for surgery, as I am thinking and acting optimistically. Family and close friends will be meeting us in Dallas, for support. If surgery is not a go ahead I imagine I may need more emotional support than if surgery does happen, therefore, I feel very fortunate to have such gracious family and friends.

In the event I do have surgery, we will be staying at a rental home for about 2 1/2 weeks and then return to New Mexico. During this time of recovery I will have somebody keep my blog up to date so you all can keep up with my progress.

I have received such support this year; the prayers, thoughts and emails have given me such strength. Please continue praying, thinking of me and I'm not opposed to the good ole' keeping your fingers crossed for me, and my family, over the next few weeks.

Activity Update:

I'm happy to report that I am working out 2- 3 times per week. Workout includes a combination of the following; yoga 2 times per week, Cardio 2-3 times per weeks, and light weights. Unfortunetly, I recently discovered that I was doing too much and needed to be better about watching my saturation (O2) levels, as they were dropping below the 90 O2 level. So, I've cutback on the intensity of the work-out and increased my liter flow while working out. As I've mentioned to a few of you, I'm probably the happiest person in the gym. Go figure, imagine this, the girl with the O2 and other accessories hanging from her body is ALL SMILES!!! I'm so happy to be working out again.

Medications:

No changes to medications. BUMMER!

Some Personal Thoughts_Part I

When do I think my illness first took up occupancy inside me?

Given I have a congenital heart defect, it has always been with me.
As for, when do I think the PH started to occupy me, well, I think it was hiding for a while as far back as college (14 years ago), that I can remember. As a dancer who trained 3-5 hours (per day) I lacked stamina, which I always didn't understand. I really noticed a change when I moved back to NM in 2000. From that time on shortness of breath and anxiety worsened.

Who else is involved?
Those I am in physical contact with on a day to day or regularly basis; Chris, Co-workers, Parents, Friends, Relatives and of course my (2) kitty cats.

How does my health effect these relationships?
Not able to take a brisk walk to grab coffee with co-workers. Although, happy to say brisk walks are more feasible now that I am on Flolan.

Planning or rather having to change or modify social functions so that they are within my physical capabilities. Activities that I enjoy but are unable to do (Right now!); hiking, hot tubing, skiing, and dancing with my Girlfriends.

Other people whom are affected by my health:

Acquintances. I'd like to think I have remained positive throughout this experience. Therefore, I hope I have touched people in a positive way.

What are the worst things about it?
Calling it, IT. No really! PH is not something you can refer to as a pronoun or ignore. It has a name, Pulmonary Hypertension. PH takes on a life of its own, even though it lives within you. Speaking from only my personal experience ONLY, PH is mostly physically pain free. Instead, it is what I’ll compare to as a “Prison”. A prison because although I have the physical components; the legs and the emotional drive; desire, your body dominates and takes over those two motivating factors. PH has a weird way of discouraging me, because I WAN’T to walk up that hill but my body is communicating that I CAN’T walk up that hill. For me that is the hardest part. Hikes or even short walks became something I dreaded. I found it difficult even before starting a walk I felt anxious, nervous and even discouraged. I thought it was my lack of motivation, desire and drive for activity. Keep in mind I was still teaching ballet up until 6 months prior to my diagnosis. I had always been very active dancing 5-6 days a week so I couldn’t understand why I could be in such bad shape and lacked desire to do anything other than dancing. Even while teaching I could not demonstrate like I had.