Friday, November 30, 2012

Yesterday's pulmonary function tests were pretty tiring. After that I did a 6 minute walk and completed paperwork at pulmonary rehab, and then I did the nuclear VQ scan. The scan requires that I wear a mask for part of it. I inhale radioactive gas through the mask and they take pictures of my lungs to see how the air moves through the lungs. The mask I had to wear for the VQ scan was a tiny inflatable plastic mask that was sealed around my nose and mouth. I put up with this for maybe 5 minutes until I just couldn't take it anymore. They then released the straps so it wasn't sealed anymore and continued the test. This was tolerable and the mask came off shortly thereafter. They then injected a small amount of radioactive albumin into a vein in my arm and then did scans to measure how well the blood flows through the lungs; or at least this is how I understand the test to work. I asked Marsha if I glowed in the dark afterwards and she said no. lol

I have not heard the results of the VQ scan, although I'm curious to know how the air and blood are able to flow through my lungs. I will find out on Tuesday.

My transplant coordinator called this afternoon and said that I am listed, but on inactive status until I see the doctor on Tuesday. They want to make sure I am psychologically ready and that it is truly time for me to be listed. I will be the only patient on the Barnes Jewish lung transplant list with my blood type (AB), so I will be at the top of the list! She said to take this weekend to enjoy activities with out being worried about getting interrupted with "the call" while I'm out eating lunch, at the movies, etc.

I didn't push real hard to be listed today, as I have actually been able to do what I need to without a lot of struggle. I am so thankful that I had the energy to get packed and moved up here. A big answer to prayers!

That's it in a nutshell. As always, thanks for the prayers and I hope each of you has a wonderful weekend!

God Bless,

Thursday, November 29, 2012


I thought I only had to go in for pulmonary rehab today, but alas, the scheduling nurse called and said they wanted me to do full pulmonary tests (takes 1+ hour) and a VQ scan in addition to the pulmonary rehab. This day suddenly got a whole lot more tiring! 

The VQ scan measures breathing and circulation in the lungs. Part of the process involves wearing a sealed mask. Prayers for this part, please. I am claustrophobic and not looking forward to this :( The VQ also requires some radioactive fluid through an IV--maybe I'll glow in the dark afterwards? lol

I'll try to let you know how it all went. If you don't hear from me today it's because I was too tired!
Hugs to all,

Tuesday, November 27, 2012

St Louis

Just wanted to let you know that we made it to St Louis. Between the tearful goodbyes this morning and the trip, I am tired out!

The transplant coordinator said I should be listed by the end of this week. I will start daily exercise classes on Thursday (pulmonary rehab). Wish me luck!

Thank you for the safe travel prayers! I'll let you know when I'm officially on the list!

Monday, November 26, 2012

Moving Day

Tomorrow is moving day! My sister and I will move to St. Louis and she will stay with me until I get the call, then Garry will take her place. I should be listed for transplant by the end of the week! The call could come the day I get listed, in 2 days...or 6 of those things I have no control of.

Even if I do get the call stating that lungs are available, I could have what they call a "dry run", where they call you to tell you they have lungs, you rush to the hospital, meanwhile the procurement team goes out to harvest the lungs and then they may see something not quite right with the donor lungs, so they will call the hospital and tell the transplant team that it's not going to work. What an emotional roller coaster this scenario would be! All in God's hands...

I will let you know when I'm officially on the list! Please pray for safe travels for us and thanks!

Have a blessed week!

Thursday, November 15, 2012

Big News!

I am back in Kansas and tired out! I had the heart cath on Monday and then spoke to one of the pulmonary doctors on Tuesday. He confirmed that the heart cath looked good, verified what drugs I am allergic to, and said "Well, it appears it's time for you to be listed for transplant. When you can get moved up here and settled in, we will put you on the list." My first thought was Eeks!! I didn't think he would tell me there on the spot, I figured I would get the "we'll present your case before the board...." speech.

When I got back to the hotel, I had a lot to think about: things needed to be set into place for when I'm gone, when am I moving, who is going to do the things I normally am responsible for at the home, how is Dakota going to cope, etc, etc, etc. Some of this I had already considered and taken action to remedy, but it was all very "real" now! I was feeling a bit overwhelmed and frazzled.

A neat thing that happened in the midst of all of this is that I normally do a devotion out of a booklet each night at bedtime. Most of the Bible passages that correspond with the daily devotions are in the New Testament, so I normally just take a small New Testament Bible when I travel. Well....Tuesday's devotion was based on a passage in the Old Testament, so I just read the pamphlet portion. I still felt like I should read "something" out of the Bible, so I said "I will just open it up and where ever I open it is what God wants me to read tonight."
The chapter I opened to was Philippians 4. At first I thought "OK...?" Then, there in verses 6-7 it said, " Do not be anxious about anything, but in every situation, 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."  It could not have been a more perfect passage for that moment in time for me!

The tentative plan is to move and be listed by the end of November. I will continue to keep you updated. As always, thank you so very much for your thoughts and prayers!

Monday, November 12, 2012

Left Heart Cath: check

I had the left heart cath today, and from what I understand (was lightly sedated), the doctors performing it said everything looked good!! Praise The Lord for that! The insertion site is a bit sorer then it was with the right heart cath, but this time they went into an artery, so that's probably the difference. Hopefully it won't give me any trouble in the next couple of days.

Tomorrow I will see the pulmonary doctor and he/I will get down to brass tacks and determine if this is the time to be listed. I really think we will come to the consensus that it is time, but we'll see.

Thanks soooo much for your thoughts and prayers. Please keep us in your prayers for a safe trip home Wednesday.


Friday, November 9, 2012

Left Heart Cath

As I have mentioned before, my left heart cath is scheduled for Monday, the 12th. I'm not as nervous this time, since I did the right heart cath the end of August & it really went off without a hitch. I know the left cath is inserted in an artery and the right was in a vein, so I'm not exactly sure if recovery will be the same, but I sure hope so! I will try to update my blog Monday evening if I'm up to it.

I will have a post transplant education meeting on Tuesday and also will consult with the pulmonary doctor to find out results of the left heart cath, and I'm sure he will want to know how I feel as far as being listed for transplant at this time! I'm both excited and nervous! I have to keep handing it over to God, knowing that all will work as He wills and in His time.

If I could once again ask for your prayers, I would appreciate prayers for safe travels, no blood clots or complications from the heart cath, and just a calmness and peace. Thanks so much!

Friday, November 2, 2012

Thank YOU!

I just wanted to thank you for the thoughts and prayers!  I had a better day yesterday and am doing better so far today, so praise God for that!

Garry's parents and one of his brothers and his wife will be in town this weekend, so it will be busy!

I hope all of you have a great weekend!

Thursday, November 1, 2012


I finally have a date set to go to St. Louis for the left heart cath! I'm not excited about the cath, per se, but am excited to be one step closer to being listed! The heart cath is scheduled for November 12th and I will see the doctor to discuss the results and the possibility of being listed for transplant on the 13th. I assume my case will still have to go to the transplant board for review at that time.

If things move along like I think they may (ha!), I could very well be listed around Thanksgiving. I'm not looking forward to spending Christmas up there, but what a nice present new lungs would be, but also what a very tragic holiday it would be for the donor's family. That's the hard part of this, knowing that my potential new lease on life means that some family is going through probably the worst time of their lives. I just trust in God for it to work out according to His will.

The last few days have been pretty rough; it seems like everything I do is a struggle. I called my CF doctor yesterday and started on some antibiotics and steroids last night, so I hope some relief is in sight--prayers appreciated and thanks!