I honestly haven't kept up here b/c I feel so much going on is negative. And, sometimes you just want to share positive news. I was waiting for that to roll around.
So, I am anxiously awaiting a conference call from a heart specialist (Electrophysiologist) in Oklahoma City. She is calling today to speak with my family about what looks like our 1 option for me. She (the doc herself) called me on Wednesday and told me that the only option she saw was experimental and risky. Her words, not mine. She said she put me in "tentatively" for heart surgery on Oct 6 (just happens to be 3 days after my 25th birthday). She requested todays call to be a family thing, where atleast one other person be listening and participating in the conversation. I chose my Mom b/c she is an RN and worked 10+ years at the Heart Hospital. The doc also told us to record the call so we could refer to it again while making the decision.
To be quite honest, I am scared out of my mind. Not only do I feel like I have been run over on most days I also have some weird, eerie feeling of death. My mom sat down and sumed up my tests and things for a family member in a recent email. I thought I would post that for those interested. Please continue to keep Logen & I, as well as our family in your prayers.
* We have not heard anything on Logen's test results. I will post them as soon as I know something! *
EMAIL:
"As you know Jess has been hospitalized 3 times since Nov 08 for "a racing heart" called SVT, Hypotensive crisis (low bl pressure) The cardiac catheterization showed no blockages in the arteries: a right & left were done. The right side checks for pressures inside the heart as well as the amount of oxygen. The heart itself is in good shape as far as healthy strong muscle. The electical conduction appears to be the issue although they could not see the right ventricle.
So far she has gone through:
ECG-sensors that detect electrical activity of the heart that measures timing & duration of each electrical phase in your heartbeat (this is only as good as the minute it is being done)
Holter monitor-worn for 48 hrs to record activity during a routine day, on more than one occasion.
Echocardiogram-uses sound waves to produce images of heart size, structure & motion.
CT & MRI-collects images of the heart & chest. Stress Test-failed this test within the first 5 min, so was unable to complete r/t heart rate above 200 while on the treadmill.
Electrophysiologic testing & mapping-catheters tipped with electrodes threaded through blood vessels to a variety of spots w/in the heart. The electrodes map the spread of electrical impulses through the heart. They stimulate the heart to beat at rates that trigger an arrhythmia hoping to find what may be causing the problem.
Pulmonary Function Test (PFT)-meaures how well the lungs are working, expanding & contracting & of exchanging oxygen & carbon dioxide efficiently between the air (or other gases) within the lungs & the blood. It records changes in lung size as air is inhaled & exhaled & the time it takes for the patient to complete the task.
So, as you can see she has endured a lot in the past 10 months, with very little explanation as to why she is short of breath after walking a short distance, poor circulation (blue toe syndrome) & a heart rate that cause fatigue/weakness with minimal tasks, dizziness & several faiting spells.
The cardio & pulmonologists are puzzled with what appears to be a healthy 24 yo who goes to school full time & is raising 2 small children. She is an over acheiver & it is extremely difficult to hold her back from doing all she does in a day."
Suzanne's Baptism 1992
-
Linda Anderson sent Suzanne this picture of the family on her baptism day
on February 15, 1992.
[image: Share/Save/Bookmark]
5 months ago
Awww, Jess! I'm so sorry you continue to deal with all this. Huge hugs heading your way for continued strength as you face this difficult decision. I'm so glad your Mom is there for you. Love ya!
ReplyDeleteJess - You continue to be in my thoughts and prayers. You have been through so much lately I am amazed at your strength.
ReplyDeleteIt is odd that you mention the SVT. There is another blog I follow where the little boy has SVT - http://www.mycharmingkids.net/. I had never heard of it before a couple of months ago and lately I have heard about it from a couple of different places. It sounds like it can be a frustrating condition to diagnose (which of course you know all-too-well).
You continue to be in my thoughts and prayers. I think of you, Logan and your whole family often.