2fer – health update & transplant talk

It was great to have my sister and aunt here for a few days.  They got here Wednesday afternoon and once we had some girl talk we decided to go for pedicures.  Thursday was mom’s birthday so we were off to mom’s favorite Japanese steak house for lunch.  After lunch we were just out and about.  I had to cut our outing short because my stomach was not treating me nice and I needed a good breathing treatment, not just on my travel nebulizer.

I had already used up all the energy that I had saved up for the first half day and their 2 full days they here in a matter of 24 hours.  This is life with CF.  I woke up Friday morning feeling like I had been run over by a truck.  I slept in until 10, not that I wasn’t up and down the whole time as usual.  I then lasted until noon and had to go back to bed.  I got up around 2pm and read an email response from my nurse I sent her about having been exposed to the flu at the beginning of the week.  I made my way to the little clinic at Kroger to get a flu swab and to pick up my Tamiflu they called in regardless of a positive or negative result.  It was negative but that is common, it could still be positive depending on the timeline of when I was exposed and if they got enough “brain cells” when they swabbed.  haha.

My phone rang as soon as I pulled into the parking lot.  It was a St. Louis area code…Hmmm.

  • Me:  “Hello”
  • Caller: “Hello, is this Shannon?”
  • Me:  “Yes, this is.”
  • Caller: “Hi, this is Beth from Barnes-Jewish Hospital lung transplant center.”
  • Me: “Oh, hello.”
  • Caller:  “We received all of your records and the letter from your doctor requesting that we see you to start the evaluation process.”
  • Me:  “yes.”
  • Caller:  “Do you have a little bit of time to go over a few things with me?
  • Me: “Sure”
  • Caller: “I am calling to go over your history and physical and to give you information about the process.”
  • Me “okay”

She then continued on with asking me my history, mediation allergies, surgeries, current issues, oxygen needs, mental health, etc.  Then she gave me short synopsis of what to expect at the initial evaluation.  I was jotting down notes on a little note pad I have in the car and she was talking what seemed to be very fast, but then again I was on my way into the clinic to get swabbed for the flu so obviously I wasn’t feeling good.  I will try to decode my notes…haha.

There is at least one thing I want done before I go for testing, which is getting a Power Port placed.  I am seeing the vascular surgeon on April 27th about getting a Power Port placed which in turn they would obviously be removing my old port that has kept on kicking for whopping 9.5 years.  My current port is NOT a power port which means I have to get peripheral (hand or arm) IV for all tests needing IV contrast.  A Power Port is able to handle IV contrast for tests like CT and MRI scans.  After my last stay in the hospital and the issue with getting a peripheral IV started for a CT with contrast the need for a Power Port became more evident.  Hopefully I can get a power port placed relatively quickly so we can then get my evaluation scheduled.  Once I figure that out when that can be done I can schedule my evaluation dates.

The short synopsis of what she shared with me is the following… The testing will be 4 consecutive long days.  We will need to arrive on a Sunday evening so we can be there bright and early to get the testing started on Monday morning.  All testing is done outpatient so we will be staying in a hotel.  We are about 8 hours away from St. Louis so a road trip is ahead.  Monday and Tuesday will be long 8 or 9 hour days of testing and meeting with social work, financial, etc.  Tuesday after testing I will see a pulmonologist to go over the testing.  If the doctor wants to go ahead with more testing I will then have a heart cath on Wednesday.  Then Thursday I will see the pulmonary folks again and they will let me know if I am a candidate.  Then we will go from there as to where I stand as a candidate.  I will be given a LAS (Lung Allocation Score) after the testing which is a number comprised of many different things from the testing.  To read up on what the Lung Allocation Code is, you can go here.  I could be not ready to be listed yet, I could be listed, placed on the inactive list.  It all depends on the results of the testing.

We will discuss all the other details like relocation before/while listed.  I do have to relocate for the 3 months (12 weeks) after transplant for many appointments (labs, X-rays,  pulmonary rehab, bronchoscopies and pulmonary doctor appointments).

With all of that said…The REALITY of the transplant process is here!  Honestly…it’s scary as heck!!  The thought of ‘is it worth it’ has crossed my mind often with how scary it is knowing many CFers that made it a long with time with new lungs and some that never made it out of the hospital.  I will be trading one set of issues (CF lungs) for another (transplant lung rejection) and I have to be ready for it for the rest of my life.  The statistics still are 50% are still alive at 5 years post transplant.  Of course I know many who are way further out than that.  I just have to be willing to do this but holy moly it is one scary process to go through and I am just beginning.

The more limited I become the harder it is for me to think about it all.  I see people going on about their lives doing such fun things talking about doing such fun things some of which I used to be able to do with no problem.  Some of which I wish I could do in general.  Heck right now I wish I could just pick up and go to the beach and lay there in the sun but that can’t happen.  I will only continue to get worse and the reality of that makes my depression kick in high gear, which it has in the last few days.  It’s a hard thing to manage.  I guess it’s a good thing I have counseling tomorrow.  haha

Ok I think this is long enough, sorry to it ended up being so long.

FUNDRAISING: We are fundraising to cover any extra medical costs and living expenses.  Go to GoFundMe (gofund.me/shannonigans) to donate or you may also donate through PayPal (paypal.me/shannonigans).

Until next time…

3 thoughts on “2fer – health update & transplant talk

  1. Shannon, email me if you want more info about the St. Louis area, hotels,ect. My husband went thru the process 18yrs ago & he is 16.5 yrs out from his double lung transplant @ Barnes. They do have it down & are excellent. Plan to bring snacks & water for the first 2 days of testing. I remember the appts seemed back to back & it is a huge campus(even more sprawling, than it was then). They do have wheelchairs by valet parking. Plus the Parkway Hotel is connected by walkways to the CAM( Center for Advanced Medicine). Also, Second Wind has a 2p lunch@ Chris’ Pancakes on Southwest on the 2nd Sunday of the Month. They have lots of resources,too.
    Hoping & praying for you, Jenni O

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