Day 3

To start out the day today, we had a pre transplant meeting, basically outlining how things work with being listed, when the call comes, and post transplant.

We also met with a social worker to discuss any questions we had, or resources we are in need of, etc.

Lastly, we met with the miracle worker--the transplant surgeon! I told him of the concerns the pulmonary doctor (and myself) had re: atrial flutter and clotting and the surgeon said those didn't sound like "deal breakers" to him. So, I feel more optimistic after our visit, but still await the transplant board's decision on whether I'm a viable candidate for transplant. I was told that can take up to 2 weeks. I will update here as soon as we hear something!

I can't tell you how much I appreciate the support, thoughts, prayers and love shared :)
God Bless,
Lynda

Testing-Day 2

Today started out with fasting blood work. The lab tech had a whole pile of tubes to fill with blood. She drained my right arm until it wouldn't bleed anymore, then moved onto my left and filled the remainder of the tubes. We were just leaving the area when she called me back again & had to get 4 more tubes out of my left arm =O   That arm now feels like it has a pulled muscle in it, and if it feels that way tomorrow I will ask if that's normal. I also had an arterial blood gas done, which is where they draw from an artery in your wrist. It hurts more then a normal blood draw, but it wasn't too bad.

I also had pulmonary function testing done today. One test was the customary test where you take a deep breath and blast it out and then continue to exhale as long as you can, and the other test was a walking test. With the walking test, they like to see how far you can walk in 6 minutes, how much oxygen you need, and also to see if you can even walk for 6 minutes straight! I'm glad I've been walking with my friends at pulmonary rehab! I felt pretty confident that I could hold out for 6 minutes, and I did!  lol

We then met with a pulmonary doctor and he went over the test results. He did say that I would be a candidate for transplant at this time, but he has to gather all the test results and submit them to the "transplant board" to see if they think I'm a viable candidate. He said the only things that he thought may give them pause is my atrial heart flutter and history of clotting with PICC lines. I also have some allergies to antibiotics that may throw a wrench in things, because they don't want to go to the trouble of getting new lungs implanted, then have no meds to treat them with if they happen to get an infection of any type.

I am not clear on when we will have an answer from the board. I got the impression it will be a few days. Meanwhile, we still have some consulting appointments tomorrow, then we will be done here!!!

Thanks for the prayers and I am already going to call it a night!

Heart Cath-Day 1

The heart cath went well today! The Dr. that did it said that all pressures were normal/good and that my heart was strong. *whew* and Praise The Lord! My heart does have an atrial flutter, and I guess it was in a "sinus rhythm" right before the heart cath, but I didn't hear anything about it from the doctor after the heart cath? I was pretty groggy, nauseous, and had a head-ache afterwards, so didn't think to ask about that. I did take 2 Tylenol and still have a dull headache, but I'm well enough to eat for the first time today & that's where we're headed!

Thanks for checking in & as always, thanks for the thoughts/prayers <><

Lynda

St Louis

Well, by the grace of God, we arrived in St Louis early this evening! We went through rain on and off pretty much from Emporia to St Louis. At times, it was so heavy that traffic was crawling or stopped on the Interstate and you could barely see the car in front of you!

Tomorrow is the heart cath and hopefully that will go off without a hitch! I will keep you posted and once again, thank you for the thoughts & prayers!

Hugs,
Lynda

St. Louis it is!

I hope everyone has had an enjoyable weekend. It sure is nice to have the milder temperatures here lately! I hope it's milder where you are as well.

I wish I had a good update, but have felt pretty rough the last week or so. I have just had a lot of bloating lately, and that makes it hard to breathe. Just simple things like pulling clothes out of the dryer, tying shoes, and showering make me very short of breath. We plan to still do the transplant evaluation for the last week of this month. I will say that lately I relish the thought of some new lungs!

In case I don't have a chance before we leave for St Louis, my biggest fear is for the right heart cath I have scheduled for Monday, August 27. In the past, I had blood clotting with IV lines (both arms), and I'm not sure if that relates to heart caths in any way or not. I certainly will mention this to the team doing the heart cath when they call to confirm the appointment.

Tuesday and Wednesday will be filled with a variety of pulmonary tests, labs, and consults with the pulmonary doctor, social worker, heart transplant surgeon, and 1 or 2 transplant education classes. It will be long and tiring, but I am looking forward to hearing where they say I am regarding listing.

My request for you is to ask for your prayers, especially that the heart cath will go well, and that the doctors will find that my heart should be strong enough to with-stand the transplant, if transplant is in God's plan for me.

The day of the heart cath happens to be my sister, Lisa's, birthday. She also had CF and passed in 1986 at 27 years old. Maybe she will be pulling for me! ;)

I will try to update the blog daily while in St. Louis as long as I have the energy. Maybe I can talk Garry into doing it if I don't have the energy! Thanks soooo much for the thoughts and prayers!

Love and hugs,
Lynda