Graduation & New England Fall Trip

I had a clinic appointment this afternoon basically so I could meet with my doctor and have some questions answered that came to my mind, my sister’s mind and Scott’s mind after the heart cath.

I’ll list my questions in black & and my doctor’s answers in red (summarized):

1)    How far can I travel before being listed?  After being listed for a heart transplant?   Before the transplant there are no restrictions other than those you place based on how you’re feeling. Elevation could cause your heart to beat faster, as it does for most people, and your symptoms to increase.  Traveling in general isn’t a problem, however due to your lack of energy etc. your vacation may not be as enjoyable as it could because of your lack of activity.  After the transplant you’ll have 4 hours to get to the hospital.

2)   Are the following symptoms “normal” for CAV or are the anxiety driven even though I don’t normally feel anxious about stuff?  Typically heart transplant recipients don’t feel the typical signs of heart failure/heart attack because the nerves were cut from the original & transplanted heart.  With that said, sometimes some of the nerves can grow back so you may be able to feel things. However, your symptom of lightheadedness could be a sign of atrial fibrillation and we’ll need to check that out. And given the fact that I’ve known you for some time and you don’t just come in for things I don’t think its anxiety. With that said, sometimes when you are made aware of something you may tend to notice symptoms more that could have already been there-you just didn’t pay much attention to them.  To which I discounted, as some of these symptoms would be hard to ignore. Then there were various conversations about Holter Monitors, event monitors etc. and it was determined I’ll start with a 24 hour Holter Monitor on Monday.  I’ll wear it for literally 24 hours until Tuesday to see if any of the heart “events” are cause for concern.  There were also conversations about different options if I did show signs of A-Fib (atrial fibrillation) but we’ll cross that bridge when/if we get there.

3)   What’s the time frame for getting listed/how long does all the testing for re-evaluation take?  About a month

4)   Will the transplant be at Sutter or at Stanford?  Sutter

5)   What about a Berlin Heart while waiting?  Berlin hearts are used in pediatric patients due to their size, but the adults have something similar known as LVAD-Left Ventricular Assist Device.  That would be an absolute last resort for you if no heart came & you had 24 hours to live.  Given the fact that the wire is inserted into your heart through an area left open and given the fact of the immunosuppressants you are on, you’d be at a much higher risk for infection and it isn’t worth the risk unless as a last resort.  So I’m guessing that one is a no J

6)   Would oxygen help?  No.  There’s nothing wrong will Jill’s lungs, her saturation levels have been good.  Her shortness of breath is related to the decreased ejection fraction of the heart and oxygen can’t help that.

7)   I put this one in as it isn’t a question I had, but it was written on my paper by another family member and perhaps some of you have wondered it too.  What is Plan B if a heart isn’t found? 

I didn’t actually ask him this as I know the answer.  Plan B is an express ticket to meet our Lord and Savior.  Do not pass Go, Do not collect any more health problems J 
Scott has another answer-it’s what he’s praying for, but it’s his plan A:  For God to move mountains and repair Eli’s heart so a transplant isn’t necessary.  Is that an option?  Not that I’m aware of.  All my research shows once cardiac vasculopathy has progressed, there’s no going backwards.  It’s not like the typical coronary artery disease that can be reversed with diet, activity etc.  (I forgot to ask my doctor though if he’s heard of any cases or had any cases that the vasculopathy reversed…better start a new list.) 

I’ve hesitated in whether to share this information with everyone.  Should I just share it with close friends?  Just stick with family?  It’s hard stuff but it’s the truth and I whole heartedly believe in honesty and laying it out there.  Because quite frankly as time goes on, there will come a point when my family will need you.  They’ll need you for prayers, they need you for support, they’ll need you for nourishment for their bodies and their soul, and they’ll need you to get away for an hour or two to take their mind off of it-whether that’s sitting with me or taking them somewhere.  They’ll need you.  And they won’t want to admit it.  I’ve a hard time admitting it.  I think we all have a hard time admitting we need help or anything for that matter.

So I'll share with you the facts.  Straight up, this is how it goes:

Below is the breakdown of transplant list status as it applies to heart transplants currently:    

a.    Status 1a-top of the list, would get a heart within 30-45 days, you’re in the hospital on life support for some sort.

b.    Status 1b-the wait would be no more than 6 months, you could be at home on oral or IV meds to control symptoms.

c.    Status 2-you could wait up to 2 years. 

As it stands today if I was listed-without knowing the holter monitor results, I would be listed at Status 2.  However,  my last time around this “rodeo” in February 1990, prior to my transplant-having been listed for 1 month-I was still going to school all day (high school) and then working at a pizza joint right after school-say 4pm to 10pm, several times a week.  Fast forward to the last 2 weeks of April, I could no longer attend school.  By May of the same year before transplant, I have no recollection of the entire month because I slept the whole month away I was so exhausted.  I was put in the hospital on June 7^th to wait and got the call that evening.   

Today, well…I’m not sleeping all day yet.  But I can’t do my normal tasks as a wife and mother: household chores, grocery shopping or even just being upright for extended periods of time is exhausting.  I become fatigued and get crazy heart gymnastics going on in my chest, not to mention the occasional waves of lightheadedness.  Only God knows how slow or fast this progression will be this time around. 

Thanks for letting me share my innermost thoughts with you.  One more annual ‘female physical’ tomorrow, as that’s on the list of to-do’s before being listed, and then I get to see my beautiful sister again tomorrow evening.  Then she’s whisking me away to a Tuscan-like resort in Napa to make up for the postponed trip to Italy, and I’ll get to enjoy a small taste of what’s to come when we get to share in our “Celebration Vacation”.  So I'll be "out of touch" for a few days and unless something totally crazy happens, my next blog will be next week after the holter monitor results.  Stay tuned. 

“Rejoice in the Lord always.  I will say it again: Rejoice!  Let your gentleness be evident to all.  The Lord is near.  Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7