Oh, Teeth...

I don't know why I thought getting dental clearance would be easy…there really hasn’t been any step in the evaluation process that has been simple. With everything there has been long waits, miscommunications, frustrating people, and so on. I don’t mean to complain. That is just how it is. But for some reason I really did expect to simply go to the dentist and have them say “Yep, you are good to go!” But that isn’t exactly what happened.

I went to my dentist appointment on Monday and even though the hygienist said I do a perfect job brushing and flossing, I had a few cavities and a few places that had potential for cavities. She said that antibiotics kill both the good and bad bacteria…and I have certainly been on enough antibiotics to do that. The dentist also said that I need to have my wisdom teeth out…all 4 of them. He said that 2 of them are impacted and so he couldn’t take them out. He referred me to a local oral surgeon and thankfully I was able to get an appointment.

I was able to get all my fillings taken care of yesterday which I am very thankful for. My whole mouth was numb all day, but Mom came to the rescue with a chocolate milkshake since I couldn’t even chew! Later we went to meet with the oral surgeon. He looked at my x-rays and agreed that my wisdom teeth need to come out before the transplant. He said that there is just too much of a chance that they could bring infection and big problems in the future if I don’t get them out. Because I am so complicated with all my meds and steroids, he is contacting my doctors and the transplant team to make sure that he is the right surgeon and that his office is the right place for me. Hopefully we will hear from him next week.

We were so excited because this would have been our first week in the past 2 months that we wouldn’t have to take a trip to Hopkins. But now we do have to go down. I called my CF nurses and talked to them this afternoon. I’ve been coughing a little more and have been getting short of breath again. Normally I would wait another week or so until I really start feeling bad before I call…but I don’t want to feel the way I felt last time I was in the hospital. That was not good. They were very happy that I did call and they asked if I could come down tomorrow just to make sure my PFT’s haven’t dropped too much. The doctor I’m going to see is not Dr. Boyle…he is another great doctor on the CF team and he wears a bow tie so you know he is good : ) I’ll let you know how the appointment goes tomorrow.

In other news, Jonathan is learning the guitar! I am so amazed at how talented the Slick kids are…all of them! One day Jonathan said to me “I want to learn the guitar” so he borrowed one from my dad and learned it! That was just a few weeks ago and now he is playing all these songs! He also wrote a song for me! He called it “35” because my blood sugar got very, extremely, scarely (Yeah, I don’t think that is really a word…) low. I just love to hear him play.

And here is a little verse that I love…
“I have loved you with an everlasting love; therefore I have continued my faithfulness to you.”
Jeremiah 31:3

-Rachel

Timing

Rachel and I are always talking about how the timing of everything in our lives it not in our hands, but in God's. Recently we've really been feeling it. This past Saturday (9/25) was the date that we had originally set for our wedding. When Rach was sick in the hospital back in the spring, we changed it to July 10th. Now with all our thoughts focused on the transplant and every week filled with appointments and evaluations, we're so glad God guided us in our decision to bump the date up. 


The past few weeks we've been talking about how perfect the timing is, but this past Saturday it really made sense...


I'm not sure if any of you saw on the news, but there was a shooting in our apartment complex parking lot on Saturday morning at 3am. We didn't hear anything, but I figured something had happened when I had to tip-toe around evidence tags while taking the trash out. Apparently two groups got into an argument, one man was shot, and another was injured while running away from the scene. They closed off our parking lot and wouldn't let anyone drive in or out until around noon. Our ceremony would have been at 2:30 that day, and I would have had to wait for the police to let me leave in order to make it to my own wedding. Yet one more reason I'm glad we moved the date up. 


Oh! I'm $110 away from my goal of $1000 for the CF Climb that's coming up in 3 weeks. While training in the stairwell again today I shot a little fundraising video:

As you can can hear, it's a little hard to breathe in that fire staircase. Which reminds me, I had to tell off a smoker this afternoon at the Y. He is a client of a fellow trainer and I heard her chewing him out about his smoking. He wasn't remorseful or embarrassed in the least for his disgusting habit and was even joking about it, so I decided to bring the mood down a bit with my infamous "You were born with good lungs and you're wasting them, my wife was born with CF lungs and would give anything to have what you started with" speech. That normally shuts 'em up, and it didn't fail me this time. It just drives Rachel and me crazy that some people choose to destroy their lungs with cigarettes. Next time you see one of your friends or family members smoking, tell them about Rachel. I guarantee they'll feel like a total tool next time they light up.  


On a lighter note...I'm watching Rachel collage/design right now. Man, she's talented. If any of you haven't seen her work (or would like to buy some) check out www.this-slick-designs.com. 

Pin Cushion

Tuesday was another full day in Baltimore. I thought it was going to be a nice, easy bone density scan, lung function test, and a quick visit with Dr. Boyle…but that isn’t what Cathy (one of the lung transplant coordinators) had in mind. She called me on Monday afternoon and told me that she arranged for me to get some more evaluation stuff done in between my appointments. So Mom picked me up and we started the trip for 4^th time this month.

We got there early and I had the bone density scan. I’ve had several before and all you have to do is lay on a table with this scanning thing above you. They told me to wear comfy clothes for the scan, so at least I got to wear sweat pants all day! The scan lasted about 5 minutes and I was done before my appointment time.

Then we headed over to get my blood work done. The phlebotomist had everything all laid out on the counter and she was getting ready to stick me when I said “Aren’t you going to alcohol my arm first?!” She had forgotten to clean my arm before sticking a needle in it! She apologized and couldn’t believe she forgot. But she stuck me and it worked and so I was happy!

As we were finishing up lunch in the cafeteria, we got a call from Dr. Boyle. He is working with a university in SC studying CF genetics. He had asked me to be part of this study before, then they said I wasn’t eligible, then on Tuesday they realized I was… so he asked if I would be able to participate before my lung function test. That took a while but it was fine.

Then I did my Pulmonary Lung Function Test (PFTs). This is a breathing test that, in combination with how I’m feeling, tells us how my lungs are doing. A healthy person’s PFTs would be from 95-100%. When I was in the hospital in August, my PFTs were 25%. When I went back last week they were at 35% and this week they were at 39%! Dr. Boyle said that this is perfect for transplant. He said he wants me to be as strong as possible so that my recovery will be easier. Then he looked at me with a casual smile on his face and said “So, do you want to get listed in September?” I probably had a deer-in-the-headlights look on my face. I said, “I don’t think I’m mentally prepared for that. I think October sounds good to me.” He said that mental preparation is a huge factor and he felt good about waiting a few more weeks to list me.

I know that waiting 3 more weeks doesn’t sound like that big of a deal. But it feels like it. When I get listed, my phone will never be off and I will always have to be ready to drop what I’m doing and go down to Hopkins. The thing about lung transplants is that lungs only last 3-4 hours outside of the body. That means that when there is a possibility of new lungs, they fly their team out to them to check them  and see if they could be a match. Meanwhile, they call me and I go down and get prepped for surgery. Hopefully they will be a good match and they can fly them back and go on with the transplant. If they aren’t right, they tell me to go home. Then we will wait more. It seems like once I get listed there won’t really be any down time…there will always be the possibility of getting the call.

By the end of the day I had done a bone density scan, regular blood work, a CF study, PFTs, a hepatitis shot, a flu shot, and special blood work that they draw from the artery where you can feel your pulse in your wrist (yeah, that one hurt and she didn’t get it on the first try.) So, after my 5 needles in one day, my sister gave me a new nickname…Pin Cushion : )

- Rachel

Climb for Life Training

With my stair climb race coming up, I've been training pretty intensely. As most of you know, I am taking part in the race up the Gulf Tower in Pittsburgh as part of a fundraiser for the Cystic Fibrosis Foundation. In addition to my hilly runs and my "new buddies" at the Y (the Stepmill and upright bike), I have found a new secret training spot:

7.5 floors of dark, musty, beautiful stairs. Running up all of them 6 times is about how long the stair race is. It's not long, so I normally do all the floors 15+ times (113 floors), two steps at a time which the exception of a couple runs up sideways, backwards, and some three steps at a time. Today I made things a little more fun by doing 38 floors wearing a 20lb. weighted vest (up and down in under 14 minutes). 

 

It doesn't always feel fantastic, but the entire time I'm in that stairwell, I'm thinking of Rachel. Not only do I want to do this race to raise money to help find treatments for her, I want to win this race for Rachel. Last time I did a race for CF it was a 5k and I came in second overall and won my age group. Any time I'd start to get out of breath or tired out I just say to myself, "This is what she feels all the time, and she pushes through it, so do the same." Reminding myself of her strength is what helped me in the 5k, and I know it'll help me as I try to win this stair race.

I got a call from the Western PA CFF chapter yesterday and they told me that they need more runners for the race on October 16. Let me know if you're interested. But if you don't feel like running up 720+ stairs, you can help me out by donating at my fundraising site: www.cff.org/LWC/JonnySlick   

I've already raised $725 and I'd love to make it to $1000...help me if you can!

Heart Cath – Mission Accomplished.

Well, the heart cathe is done! And it was fine. No blood squirting across the room, no excruciating pain, no emergencies. Thank You, Lord!

The worst part of the day was dealing with all the people…nurses, doctors, fellows, residents…none of which seem to communicate with each other. I had to ask a fellow to double check on what they were actually planning to do because she was convinced that I was having a right and left heart cath. She did double check, and wouldn’t you know, I was right. I really try hard not to get frustrated with all of the questions and miscommunications but I was having trouble yesterday. I hadn’t eaten since the day before and I was grumpy. One of the nurses asked if I had a cold when I coughed…I said “No, I’m just waiting for a double lung transplant, not to be to blunt.” That was probably should have controlled my tongue a little better…

The procedure really wasn’t bad at all! What they had to do was stick this tube thingie up a vein in my leg and thread it all the way up to the right side of my heart. They could then check different types of pressures in my heart. The gave me pain meds and some mild sedation and I didn’t feel a thing! All of the people in the OR were so nice and talked to me and made sure I was comfortable the whole time. It was actually the most pleasant part of the whole day!

After I was finished, I slept on and off in the recovery room. There was more frustrations with a few of the nurses, but after 3 hours Mom and I headed home.

My CF doctor told me the reason they do a heart cath as part of the evaluation is to (“Not to be too graphic,” he said) decide which new lung they should put in first when they do the transplant. Yeah, that is kind of too graphic for me. I like to think of the transplant as me being put to sleep and then waking up with a nice big scar and new lungs…not so much what is actually happening while I’m out.

Now I just want to end this post by saying thank you for your prayers. Thank you for your encouragement and for reading our blog. You have no idea how much it means to us : )

- Rachel

Hopkins Date

Yesterday Jonathan and I had what I call an “All-Day-Date.” It wasn’t exactly like what you might think a date should be…but it never really matters where we are or what we are doing, we always have fun.

Our date was to Johns Hopkins in Lutherville, MD to see the Infectious Disease people. We had never been to that campus and with our history of getting lost every single time we go somewhere, I wasn’t sure how the ride would go. The only trouble we had was getting stuck behind an old man who was picking his nose…not kidding about that.

The appointment went really well! The doctor was very nice. We talked about all my medications and about possible treatments right after the transplant. I will probably do 2 weeks of IV’s after the transplant to keep the old bacteria still in my body from getting into my new lungs.

After the appointment we had a little picnic lunch that Jonathan packed us and then we headed home.

One more thing to check-off my transplant evaluation list…

Friday is the next thing…I would really appreciate some prayers for this one. I have to get a “Right Heart Catheterization” which is where they put tube all the way up through an artery and measure the right side of your heart. Up to this point all of the test have been relatively painless…a few needles here and there and several things that weren’t comfortable…but this one doesn’t really sound that great.

But I’ll be fine! I’ve got bigger things coming.

I can do all things through Christ who strengthens me.

- Rachel

My First Post

I’ve never written a blog before so please, bear with me…

Today was a good day. Instead of needing everyone to do everything for me I was able to get some things done for myself! I cleaned out the refrigerator, washed all the lettuce for salads this week, put the clothes away, cleaned up the apartment a little, baby-sat my family’s puppy, and worked a little!

I think that is one of the biggest things God is teaching me these days…how to enjoy moments. Last weekend Dad, Mom, Jonathan, Blizzie (the puppy) and I spent some time in North Carolina with my Uncle Bob and Aunt Robin. I was still on IV medicines and feeling really out of it and I just prayed that I would be able to enjoy the moments when I really felt ok. And since then God has given me some incredible moments that I keep thinking about…

…laying out by the pool in NC in the evening and we could see the stars and it was cool and breezy and Jonathan was holding my hand…

…on Labor Day Jonathan made me a cheese dog…yes, it was delicious…a lovely hotdog, in a bun, with fake amazing cheese sauce all over it…

…walking up the flight of stairs to our apartment without needing 10 minutes to recover…

…spending Saturday morning cleaning (like sparkly clean!) the apartment…

…cooking “Maple Glazed Chicken” with sweet potatoes and mixed veggies for dinner tonight…

…going to the movies with my two favorite men…my Daddy and my JonnyBear…

Even though each day is full of challenges and testing and overwhelming things, God is giving me some great moments to hold on to. He is teaching me to close my eyes and soak them in and realize how important moments really are.

- Rachel

Meeting with the transplant doctor...

Last week Rachel, her parents, and I went down to John's Hopkins for PFT's and meetings with both her CF doc and the transplant doc. Her lung function is up by 11% (to almost 36%) after being hospitalized 3 weeks ago. Her weight is also back up (thank you, Oreos) and she is feeling a little better.

The first meeting was with the transplant doctor who discussed the timing of everything. Rachel isn't sick to the point where she needs new lungs tomorrow, but she's constantly on IV's and high doses of steroids and we're all concerned about the toll that is taking on her body. The doctor thinks that we need to finish up the remaining evaluation tests/shots and get her lung allocation list score. He'll then present her case to the transplant team and they'll decide to put her on the list. We won't have a better idea until we get her allocation score, but it sounds like it'll probably happen before the end of the year.

The second meeting was with her amazing CF doctor. He is giving her a break from IV's for a bit while she continues on Cayston (a med that keeps you well between IV's). When she starts to feel bad again, she'll go back on. He basically wants to get her better and keep her well while we wait for the transplant. He is very encouraging and has high hopes for Rachel's transplant. It's all so heavy, but we know it's what's best for Rachel.

To make things more stressful though, Rachel's sister (also with CF) is in the hospital where she goes to college out in Chicago. Her enlarged spleen is causing arterial blockage resulting in a lot of abdominal pain. Please keep her in prayer as well...

Yesterday was me and Rachel's 2 month anniversary of marraige. Even with everything that's going on, I still swear it's been the best 2 months of my life. All of the tough things we've been through have only strengthened our relationship and our faith in God. We know that He has us and that there's not a single thing that happens to us that's not part of His plan. 


- Jonny