Journal

Monday, March 9, 2009 4:27 PM CDT

Greetings, family and friends!

I met with Dr. Gremmels this morning, and guess what? There is HOPE! I’ll try to get all the information organized in such a manner that it will all make sense at the end.

First of all, I do have pulmonary hypertension. Dr. Gremmels is confident that my PH is due to lack of oxygen (repetitious desaturations over a long period of time), and not from any form of lung disease. That can be somewhat corrected over time by having me on oxygen at all times.

The hole at the top of my heart (PFO), while it’s there, is nothing to worry about. He also feels that the hole is bigger than it would be otherwise because of my heart being bigger than it should be. Once my pulmonary hypertension is somewhat resolved (more on that later), the hole should become smaller, which would make it even less of a concern. My right lung has a capacity of about 70% due to my scoliosis. In addition to that, my heart is off to the side a bit for the same reason. Those two things are not contributing to my PH, but they aren’t helping, either.

This morning…. FOR THE FIRST TIME EVER, we were able to get a blood pressure reading!!!!!!!! So now we have a baseline – My BP is 95 over 70, which is in the normal range. My mom was shocked to say the least when the nurse came back and said she got a reading.

Now on to all the interesting stuff…

Back in January, when we had my first echocardiogram, the PH pressure within my heart (my mom apologizes for not knowing the appropriate medical terms that apply here) was at 70. For comparative purposes, normal is 20.

After a month of being on oxygen 24/7, today’s echocardiogram showed my PH pressure to be at 50. 50 is still high, but a lot lower than the 70 it was at back in January. That number would have NOT come down at all if my PH was due to lung disease. Dr. Gremmels is confident that the month of being on oxygen 24/7 is paying off and my heart is slowly starting to heal itself. He doesn’t expect it to ever get all the way back down to 20, but would be very happy if we could get down to the 30-35 range.

If my PH pressure had remained constant at 70, we would have tried medication (Viagra, of all things!) and surgery would definitely be out of the question. But things are going in the right direction, so we're just going to stick with the current oxygen protocol and wait and see. If we can get my pressure down to the 30-35 range, Dr. Gremmels would be a lot more comfortable with the idea of us doing surgery on my back for my scoliosis.

So, the plan is: do echocardiograms every 6 months to stay on top of things and make sure my PH is under control. When we get closer to scheduling my back surgery, we will need to do an echocardiogram a couple weeks before the scheduled surgery to make sure I’ll be healthy enough to withstand the stress of surgery.

Then once surgery is completed, Dr. Gremmels is confident that my heart/lung issues will improve even further because my heart will be back in its’ correct position, and I should have 100% capacity in both lungs again.

Oh, and Botox is out. No more anti-wrinkling treatments for me. So, we'll need to investigate other options, but we're very happy with the outcome of today's appointment.

Thank you, everyone, for praying for me!

Blessings,
Sarah Beth

(P.S. For those of you who are interested in reading doctor reports, we posted the results from my sleep study yesterday, so check the history to get caught up on that.)

Hospital Information:

Patient Room:

Home now!


651-487-2233 - home #

Links: