It's been a while...

I just want to say that we have a great God. I just love him. I can’t believe how he knows everything we need, from what we need to eat to how much money we need to what encouragement we need. And he has been so faithful to supply us so greatly with these and so much more. Jonathan and I received a letter from a friend of a friend yesterday. I just stood in the kitchen and cried as Jonathan read it to me. Along with the letter were gifts from her and several of her friends and family members. This girl said that she had been following our blog and praying for us. She said that she had been strengthened by our story. That is what I pray for. For so many years my sister and I have lived with CF and although most people know about it, they can’t see what this is really like. John 9 has always been such a meaningful passage to my sister and I…the disciples were questioning why a man was born blind. They ask if it was the man or his parent’s short comings that had lead to it. Jesus said that it wasn’t either of their faults, but that it had happened that way “so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me.” That is what I pray for. That makes all of this worth it. If God is working in other people because of this transplant, if this is the life that God has designed for me to have, than that is what I want. So, Carrie, thank you for the letter. God is so great : )

Here is a little update on my health:

Things have been pretty calm around here. I finished up 2 weeks of IVs right before Christmas. I had been feeling really tight and getting short of breath just by walking around our apartment. Normally I would go up on my steroids, but right now that isn’t an option. Because steroids really limit healing abilities, the transplant team won’t let me take any more. So, IVs were the only option. My follow up visit was kind of confusing…ok, it was very confusing. My lung function went up even more, but I am still so tight. Dr. Boyle said we are not going to pay attention to the numbers any more. They just don’t match up with my body. So, I’m still plugging along, trying to stay out of the cold, and doing everything I can to stay healthy.

Here is a little update on us: 

We had an amazing Christmas! We are now through the 3^rd  of 4 dates that we prayed I would not have the transplant on…Thanksgiving, the Stair Climb, Christmas, and Mary’s wedding. One more to go, but I’m just trusting God to take care of it…I know he will : ) We went to a very special Christmas Eve service up in PA, then went home and put out all of the presents! We both had a hard time sleeping…we were so excited for our first Christmas morning together! We woke up, ate a lovely breakfast of chipped beef gravy and toast (YUM!!!), Mountain Dew for me (part of my normal morning routine!) and coffee for Jonathan. After therapy we opened presents! We got ready and headed out to the Slick’s for a family open-house, and then to my parents' for the evening. I really don’t think I’ve had a better Christmas…it was perfect. We started laughing so hard with my family that I fell off the couch and all of us were crying! Needless to say, that is a pretty good workout and my sister and I both ended up in huge coughing fits! That is how you know when something is really funny : D Now we are getting back into our “normal” routine. Only 11 days till the wedding!!!

Our Christmas tree!

Jonathan making breakfast...Yummy!

Sam, Gabby, Bethany and Jonathan getting ready for the open-house.

Mom with a very sleepy little Blizzie : )

Mary and her future husband Peter <3

Dad and Blizzie after a long Christmas day!

I Got 2nd!

This past Saturday was the stair climbing race that I've been getting ready for for over 3 months now. The event was put on by the Western PA CFF chapter and was held in the Gulf Tower in Pittsburgh, PA. Rachel and I drove up Friday evening and stopped in New Stanton, PA to spend the night. The next morning she did her therapy vest and inhaled medicines, then we left. We were talking about how awesome it is going to be when we get to go on vacation and not have to pack the vest and nebulizer with us, or do therapy first thing in the morning and last thing at night.
We got to Pittsburgh with no problems and headed into the Gulf Tower. We were greeted by the directors of the CFF chapter and warned about 3 other CF patients that were there, so we could all keep our space and prevent things getting passed between them. I had no idea how sort of popular our story was with the group until everyone kept coming up and saying "Oh you must be Jonny and Rachel!" haha. The "Lungs for Rachel Slick" shirt I was wearing probably helped.
After registering, I decided to warm up by walking up the staircase. Along the way, I met a nurse named Peggy on the 19th floor. We got to talking and she told me that she had met Rachel downstairs and then wrote a $50 donation check to the CFF in Rach's honor! It was pretty awesome. The support I received for doing this fundraiser was incredible. My friends (both old and new) and family donated almost $1500 to the Cystic Fibrosis Foundation and the event brought in over $10,000!
The actual race was 38 floors up (722 stairs) in a pretty dusty stairwell. I did the course in 5:03, just 2 seconds behind the winner! I was honestly a little disappointed after training so hard for this, but I couldn't have lost to a more formidable racer. He is a hardcore mountain biker who's used to steep hill climbs and grueling courses...better yet, he has cystic fibrosis. I am amazed at this guy's athleticism and strength in overcoming CF in this way. I had to stop twice during the course to catch my breath, and could hear myself wheezing as I approached the finish. It was probably close to the furthest I've ever pushed myself physically for that period of time. The winner and I averaged around 7.9 seconds per floor and finished over 45 seconds before the next racers.
After the race there was a "survivors party"/awards ceremony. After talking with a few of the people we met, Rachel and I packed up and headed out on our 3 1/2 hour drive home to Hagerstown. The entire race and ride home I was thinking about Rachel. I was struggling to breathe for 5 measly minutes, not 23 years. I admire her strength so much, and I know she makes me stronger.

Thank you to everyone at the Western PA CFF chapter for putting the race on. I can't wait to do it next year...in under 5 minutes. Thanks also to everyone who donated! You all were a great encouragement to me and Rachel both. And thanks to Rachel. She didn't mind me coming home drenched after training in that hotel stairwell, she put up with my incessant talk about stair climbing, she supported me the entire way, and she always calls me her winner in everything. I love you, babe.

- Jonny

Thankful

The Spaghetti Dinner last Saturday was incredible…that is the best way to describe it. Everyone who was involved worked really hard and put everything together. It was amazing. The food was so good, the auction had some really fun things in it, my ballet students did a surprise dance for me, and when I walked in the door everyone was wearing “Lungs for Rachel Slick” shirts that had been designed and screen printed by friends. Jonathan’s band played for the first time since the spring. More than 300 people came out…and the financial support that was raised was just unbelievable. I wish I could say how much that meant to see everyone and to know all the hard work and sacrifice that went into making that dinner happen…I just can’t find the words.

Sunday was Mary’s surprise bridal shower! We thought for sure that she had figured it out…but when she came in the door we realize that she hadn’t! Peter was able to fly in 2 days early to be there as another surprise, so that was really fun! Our dear friend Dana opened up her home and planned all the food and took care of so many shower things. It was a huge help and the shower turned out really well!

On Tuesday we headed to Hopkins again for a 2 hour long meeting with a lady from the transplant team to talk about post-transplant care. Wow. I’ve been in more enjoyable, happy meetings before. It sounds like things are going to be pretty rough during that first year. We all came out of the meeting and were just kind of quiet for a while. Too much to think about. It isn’t really fair to sit a family down and tell them in the span of 2 hours all the hundreds of things that are going to change over the course of the year. Our plan is to take things one day at a time. Today’s our job is to keep going with “normal” life and wait. When the day comes that the job is to drive to Hopkins and get a transplant, that is what we will do. And in the days after that when the job is to take care of my new lungs, that is what we will do. I can do all things (even get a lung transplant) through Christ who strengthens me.

Thanksgiving was a wonderful day! Jonathan, his sister Bethany, and my Dad all ran in the 5K Turkey Trot at the community college. Jonathan beat his personal record and I am SO proud of him!!! We had lunch at the Slick’s house then went to my family’s house for dinner. So much delicious food! After dinner we came home and set up our Christmas tree! I won’t be able to have live plants in the house after the transplant so we decided to go a head and buy a fake tree this year. I thought I’d be disappointed with a fake one, but it really looks lovely! I put up all our other Christmas decorations (Jonathan lets me decorate however I want to and I love it!!!) and we watched the Rockettes Christmas thing! Our first married thanksgiving was better than I could have asked for! What an incredible day.

Here are some pictures for ya...

Roma Renegade playing at the Spaghetti Dinner!

Our tree...fresh out of the box!

 

After we did some unfolding...

Our lovely tree!

- Rachel

Exciting Week

The Spaghetti Dinner is tomorrow night! I can hardly believe all that everyone has done to get it together. I keep hearing pieces of who has donated to the silent auction, who is making home-made sauce, how many people have asked to help…it is just amazing. And then I think about all the people who are coming…my girls from college, old high school friends, my family, church friends, even people I don’t know. One of the most important factors in recovering from a transplant is having a good support system…wow, I think we’ve got that one covered! Thank you all in advance for coming out tomorrow night and for supporting us…and thank you to everyone who has supported us and can’t make it to the dinner. You are all in our prayers and we are so thankful for you.

Here is a link to the Spaghetti Dinner Facebook page if you are interested in coming!
http://www.facebook.com/#!/event.php?eid=133444790037911&index=1

Well, we went back to Hopkins on Tuesday for a check up. I am so thankful I was able to go a whole month without needing to go back because of sickness! My lung function was down just a tiny bit. I’ve been struggling more with tightness and getting out of breath but Dr. Boyle said there really isn’t much we can do about it right now. I can’t go up on my steroids because I am on the highest level allowed for getting a transplant. Antibiotics won’t help because I don’t seem to have an infection. So I’m just doing my best to breath. It is making me really excited for new lungs. When I make the bed and get out of breath, or put away dishes and have to rest, I am reminded that there is an end in sight…next November I won’t be feeling like this. My goal is to run the 5K Turkey Trot at HCC with my Dad and Jonathan next Thanksgiving. It makes me cry to think about. I’ve watched Jonathan run over the finish line several times, and I’ve watched Dad and Jonathan run over the finish line, and next year I get to do it with them!!!

Our next appointment is on Tuesday. We have a 2 hour long meeting to learn about what kind of care I will need after the transplant. Should be interesting…prayers are always appreciated!

And now for some non-transplant stuff! I am SO excited for Thanksgiving and Christmas and the wedding!!! I have lots of Christmas decoration which I bought on black Friday last year, we bought a fake Christmas tree (because I can’t have a real one after the transplant), and I’ve already started Christmas shopping (which is really early for me!). I am so excited to have our first Christmas as a married couple! I promise that I am more excited than all the kids I know : ) Jonathan said we could put the tree up on Thanksgiving so I’ll be sure to post some pictures!

- Rachel

Here is Dad and Jonathan at a CF Foundation benefit 5K last year...

410

As I expected, being put on the transplant list has shaken things up a little for us. I told Jonathan the other day that I was getting comfortable again. I had prepared myself as much as possible for being listed and then we were just waiting for it to happen. I was able to get back into my regular work, cleaning, artwork, helping with Mary’s wedding…those types of normal things. All it will take is that one call…and all those things, my “normal” life will be on hold. God is taking me to yet another level of appreciation for normal things…every time I do the dishes I soak it in and enjoy it…sounds silly, I know. But even this state of normalness is going to be over. And I don’t know when. I’m sorry to sound ridiculous and I really don’t mean to sound sorry for myself. Please forgive me if I do…just sharing what I’ve been feeling the past few days. I am also very excited. Jonathan and I are making a list of all the things we want to do when I am better…the very first one is RUN!!!

After the incident in the middle of the night with Jonathan’s phone, I really tried to settle myself and not freak out every time I hear a phone! Well, we had another scare! On Wednesday night we were driving over to my parent’s house around 7. My phone started ringing and when I pulled it out of my pocket I saw it was a 410 number…and 410 is the Baltimore area code. I told Jonathan what it said and answered the phone. After a few seconds I realized that it was a recorded message reminding me of my upcoming appointments on Tuesday. I told Jonathan what it was and I just burst into tears. I was so angry. It is not fair to call a girl on the transplant list from an unknown Baltimore number at 7 at night to give her a stupid reminder!!! Sheesh!!! I was so upset that Jonathan pulled over and we just sat there for a minute while I tried to start breathing again. My goodness. What an adventure this is starting out to be!

- Rachel

On the List

Today is our 4 month anniversary!!! Being married is so incredible. I LOVE cooking dinner, I LOVE our apartment, I LOVE my husband!!! Even though things have been so difficult, I have never been happier! God has blessed me so much with Jonathan. He is my superhero. I think one of my favorite things about him is that even when our circumstances are so out of the ordinary, so scary, and so unpredictable, Jonathan never second guesses. He just faces each step with me…and he loves me. I wouldn’t trade my life for any other person that has ever lived because I know that God planned for Rachel Slick to be married to Jonny Slick…and no other person gets to say that.

So, happy 4 months Punkinhead!!!

We do have other news too…as of yesterday at 2:30 pm I am officially on the lung transplant list. One of the coordinators called me yesterday and said, “Well, I’m going to flip the switch in about 2 seconds and then you’ll be activated!” She told me that from now on my cell phone always has to be on and with me. I woke up in the middle of the night and heard a buzzing sound in the living room. I realized it was Jonathan’s phone and I started thinking, “What if it is Hopkins?! What if they tried to call me and my phone didn’t work and they are trying to call Jonathan’s phone?!” And so the waiting begins…

- Rachel

The Big Day

My teeth have been out for 2 weeks…time goes by so fast. I had another follow up appointment with the oral surgeon today. He said things are looking pretty good. I still have really deep holes where both of the bottom teeth were. Last week he gave me this water squirter thing to make sure they stay clean. Let me just say, I feel like a chipmunk with all the food that can get stashed down there…nasty. I’m still having issues with pain. I feel like all I’ve done for the past 3 weeks is complain! I told my mom that I can deal with the no-breathing thing…I’m used to that…but pain, not so much! The surgeon said that he isn’t surprised that it is taking this long to feel better. I have another follow up in 2 weeks.

I talked to one of the transplant coordinators and she said that they had received the ok from the oral surgeon. His recommendation was to wait 3 weeks (if possible) before I have any more surgeries. So, they are planning to list me on November 9th...the big day. Everyone keeps asking me how I feel about it. I don’t know really. I guess I am as prepared for it as you can be. I’m so excited for the new lungs. I keep thinking of everything I will get to do, and all the things I won’t have to do. At the same time, I just want to skip the process and be on the other side because when I really think about it, it kind of scares me.

It reminds me of a scene from Harry Potter and the Order of the Phoenix when Harry is talking to Luna Lovegood. He is talking about how he feels like no one really believes or understands what he has gone through with Valdemort. Then Luna says to Harry, “But I suppose that's how he wants you to feel…if I were You-Know-Who…I'd want you to feel cut off from everyone else…because if it's just you alone, you're not as much of a threat.” When I think of all the people that have come along side us to encourage us, to pray for us, to support us…I am overwhelmed. Thank you for reading this blog and for all that you have done for us. You have had such an impact. I don’t feel cut off…I feel so supported!

In other news, we had such a fun weekend! Friday night was supposed to be trick-or-treating…but after 2 hours, there were no kids. Jonathan was so very sad. Mom had pulled out Mary’s old elf costume and he actually sat there for the entire 2 hours wearing it. Don’t worry, I’ll include a picture! Blizzie also had a little costume ; ) On Sunday Mary and her dear friend Tamara got in. As a gift to our family, Tamara drove from Ohio to Chicago to get Mary, then they drove back to Ohio with Mary and stayed at her family’s house for the night, then drove all the way to Maryland. I spent all of Monday cleaning and cooking. I asked Mom, Mary and Tamara to come over for dinner. It was my first time having people over for a meal! I think everything was pretty good…no major catastrophes anyway! My good buddy Jill even stopped by and we all had chocolate mousse for dessert!

Twenty-one...and a half

I would not have known if Rachel hadn't told me, but yesterday (October 25th) was my "half-birthday." My present was a bowl full of fresh shiitake mushrooms...She knows me so well.

The idea of only being halfway through my 21st year got me thinking about everything we've been through for being such a young couple. There aren't many 21 and 23 year olds that are married. Even fewer young couples that are dealing with a chronic illness. And I'm pretty sure there's even less young married couples that are dealing with a chronic illness all while being within days of being put on the waiting list for a double lung transplant. There isn't a another couple I'd rather be though.

Rachel had her follow up appointment with the oral surgeon to evaluate the healing of her wisdom teeth extraction. She's still getting headaches and it's not completely healed yet (the prednisone is slowing things down) but she has received the OK from the surgeon to be put on the list. Once we're listed, we wait.

I have a friend who asks me all the time how we manage to not go crazy thinking about what we're going through, or what's ahead of us. Now, forgive the jock in me, but I come at it the same way I approach any tough physical task: you must commit. If you don't put 100% into whatever it is, you won't do it right. Any hesitation, reservation, or lack of application leads to failure. Even if it's tough, even if you aren't completely successful, you have to try.

Your level of commitment is only a fraction of what it takes to get through something though. Faith is the ultimate. We have faith that God will get us through this just as He has in every other situation of our lives. Every time we come to a point where we think that this is the hardest point in our lives and that there's no way we can make it through...God gets us through. The times seem to get harder, but God always seems to be stronger each time.

Now that my half birthday is over, I'm looking ahead to my 22nd...where I'll have an even greater gift: my wife blowing out the candles on my cake with her brand new lungs.

- Jonny

1022

When I first found out last month that I needed my wisdom teeth out I was really frustrated and discouraged and upset. I couldn’t figure out how everything would work out with the timing of things. But as I made the bed this morning I realized what a huge blessing these dumb teeth have been. This has been an incredible week for me. I’ve had time to be…to sit with my puppy…to watch TV…to eat ice cream…to watch Lost with my Jonathan…to work on my art…to be with my Mom…to do things that I want to do. And it feels so good. Almost everyday I’ve had some type of appointment and this week I was able to have some recovery time. So, thank you, God…I needed this.

I talked to one of the transplant coordinators on Wednesday. I told her that I have a follow up appointment with the oral surgeon on Monday. She said as long as that goes well everything should be set for me to go on the list at the end of next week. Wow. That is soon. Jonathan and I were talking about how impossible the timing seems. Thanksgiving, Christmas, and Mary’s wedding are all so close and all so soon. But just like the timing of these teeth, I believe God is going to work it out to be the best possible way. I just can’t wait to see what that is…

And I don’t know if this is common knowledge or not, but this is the best day of the year. It just is. 1022 is my favorite number…and today is 10/22. I’m not sure what we are going to do to celebrate but I’m sure we will think of something fun : )

So, Happy Best Day of the Year!!!

- Rachel

Milkshakes and TV

No more wisdom teeth! They are all out and I’m doing pretty good : ) The oral surgeon said that things went pretty smoothly, except for the bottom right one…he had to work on that one a little extra. Mom took care of me all day yesterday. She made sure I had ice packs on my cheeks and smooshy food to eat! I really wasn’t swollen very much at all yesterday…but last night my face puffed! The left side still isn’t that bad but the right side looks like I have a bunch of marshmallows stuffed in my cheeks. Mom babysat me again today. She picked me up and got me a lovely milkshake and French fries. Then I settled in for another day of watching TV and cuddling up with Blizzie. The pain meds I am on are really helping. Of course, I’m pretty much a zombie for an hour and a half after I take them, but at least it doesn’t hurt much!

It is really strange to think that this is the last step before I get listed. I could get put on the list next week. Then the waiting starts. I guess we’ll just keep doing what we’ve been doing. Take it one day at a time…and if that is too hard, take it one hour at a time.

“For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

God’s plans for me tomorrow are looking pretty great…another day with Mom and Blizzie! After the past month and a half of keeping up with my work, clients, being a wife, and going through the transplant evaluation, I feel like a slacker for not doing anything for 2 days…oh well, I’m not going to complain about it, that’s for sure.

Thank you all for your prayers...things have gone so incredibly smoothly and I know it is because I have so many amazing people praying for me. Please keep it up : )

- Rachel

All 4

My wisdom teeth are coming out tomorrow morning...all 4 of them. It should be an adventure. Jonathan has to work all day and into the evening tomorrow so Mom is going to babysit me…she canceled all her plans for the whole day to stay with me…what an amazing mother I have! We are, of course, praying that everything goes really smoothly. The oral surgeon seems like he’ll be very happy when my surgery is over. I’m not exactly the most simple of patients. I’ll be sure and write an update soon.

We had a great weekend! Yesterday we slept in, went to the Pumpkin Siege at Tri-State Fellowship, then headed over to Jonathan’s family’s house where we had a campfire with a very fun couple! Tonight we carved pumpkins with Mom, Dad, and Blizzie...it was so much fun! Jonanthan did all the work and our pumpkin turned out lovely : )

Thank you so much for your prayers…we still need them.

- Rachel

Update

We had another family trip down to Hopkins today. My first appointment was for my lung function test…which after 2 weeks of antibiotics had come up to 42%!!! We decided to stop the IVs. My potassium level has been low and my kidney function level hasn’t been right so we all feel good about stopping. I am so excited to take showers without worrying about getting my IV wet! Not mixing the medicines and packing up all the IV supplies will be great too!

Dr. Boyle (CF Dr.) said that he feels good about me getting my wisdom teeth out now. Mom is going to call and make an appointment for me; hopefully in the next week. Dr. Orens (transplant Dr.) said that I will probably be listed a week after my wisdom teeth are out…as long as everything with that goes well. It is strange to think that I will probably be on the list in 2 or 3 weeks. Then it is just waiting. Gina (one of the transplant coordinators) said that she doesn’t expect me to be on the list for more than 3 months before I’m transplanted. That is another area where I am just waiting to see what God is going to do. In the next 3 months we have Thanksgiving, Christmas, and one of the most important days to our family…my little sister’s wedding.

Mary has been so incredible in all of this. Although she has been in Chicago at school, dealing with her own CF, being hospitalized, and being away from her fiancé, Mary has been such a special person to me. God obviously knew that we would need each other to have CF. We understand exactly what the other is going through, how each other feels physically, and the frustrations and emotions of living with CF. Mary has called me so many times in the last two months and just let me cry and complain and whine…or if I don’t feel like talking, she totally understands that too. She is a second-semester senior at Moody Bible Institute and instead of finishing the semester like she had planned, she has worked extremely hard to finish her school work early. She will be coming home at the end of October to be here until she gets married in January. I cannot tell you how much it means to me know she will be here and the sacrifices she is making for me. I told her that I am so worried that we’ll get “the call” the day before her wedding or in the middle of the ceremony. She told me that she isn’t worried about it…even if her wedding doesn’t turn out exactly as she and Peter planned, that everything will be great. I will have new lungs, she and Peter will be married, and that is what is important. I am so blessed to have such an incredible, selfless, little sister…I just hope to resemble her in any small measure.

I also can’t wait to have her home because she is one of the funniest, craziest, most enjoyable people ever! We have so many jokes and I can’t wait to hang out with her!

Here we are on my wedding day…

Spaghetti!!!

God has been overwhelming me these past few days. He is taking care of us…in ways that I never expected. When I was in the hospital in August, Jonathan and I realized how difficult it is to have one of us working and running back and forth to Baltimore, and the other stuck in Johns Hopkins. Jonathan would work in Frederick all day, then drive straight to Hopkins to be with me, then drive home at night…it was a lot. When I have the transplant, I will be in the hospital for 2 weeks and it is really hard for me to think of Jonathan having to go back and forth, and work, and take care of a wife with new lungs. And since we started the evaluation I haven’t been able to work nearly as much as I normally do. Thankfully, I can work from home with my graphic design and all the people I work with have been so understanding and loving through all of this. Some weeks I just can’t get that many hours in. When it is transplant time, after the 2 weeks in the hospital, the recovery is 6-8 weeks of nothing basically. I do plan on getting back to working at home as soon as I possibly can…but I know what I want to do doesn’t always match up with how good my body is feeling.

But like I said, God is taking care of us. Our church family has taken up 2 love offerings for us which were such a blessing. Although we’ve only been getting to know them for a little over a year, they have sacrificed for us and we cannot express our thankfulness.

Another way that God is providing is through a number of good friends who are organizing a Spaghetti Dinner Fundraiser for us. When my friend April first told me about it I didn’t really know what to think. I guess I’m used to hearing about fundraisers for other people who are going through difficult things…but it is different when it is for you. Then God helped me to see that this is a way that He is going to provide for us. He is going to use other people in our lives to help us. I am so excited about the dinner! It is going to be a great night! Here is a link to more information:

http://www.facebook.com/#!/event.php?eid=133444790037911

Our Little Weekend

Well, here I go on 3 more weeks of IVs. We went back to Hopkins last Thursday and had good news that my lung function had only dropped from 39% to 36% in one week. My doctor wasn’t too concerned about it and mainly wanted to help me feel better. Just walking from the front of our apartment to the back was getting me out of breath and I need to be able to do more than that!

Because of some side effects I had been having with the IV antibiotics I normally go on, Dr. Merlo (one of my other amazing CF doctors) picked out 3 meds that I haven’t been on for quite a while. On Friday I warned Mom that I would probably lose my mind in the next few weeks. It turns out that only 1 of the antibiotics is stable enough for the home care company to mix and send. The other 2 need to be mixed within 24 hours of use. That requires about 25 - 30 extra minutes a day just to prepare the IVs. Then I had to figure out the schedule of when I get each medicine. 2 of the IVs are twice a day and the other is 3 times a day. I figured out that I am hooked up to my “bubbles” (the medicines are in small, pressurized balls that infuse by themselves) for about 7 hours a day. I am just so thankful that the bubbles are portable and I don’t have to be hooked up to an IV pole.

My lungs are feeling a little better! It is getting easier to do things : ) I was dealing with some strange side effects, however. The first few days I always feel out of it. On Saturday I looked at Jonathan and said, “I think I need to call Hopkins about my IV doses...they might be too high.” He said, “What makes you think that?” I said, “My skin doesn’t feel like it is my skin.” We both laughed really hard when we realized how strange that sounded. Now that I’ve been on the IVs for 5 days I am starting to feel more like myself. No more tingling feet and my skin feels like it belongs to me!

We had a really great weekend! Friday night we spent with our amazing friends April and Darrin and their 3 wonderful girls...it is so great to just sit and watch TV with friends...it makes us feel like a “normal” young married couple. On Saturday evening we went over to the Slick’s house and had a campfire! Sunday was very special too! We decided to stay home from church to allow my body a little extra rest and after all my therapy and nebulizers and everything we went out to lunch to celebrate. You see, Sunday was my 7 year anniversary of having my MediPort (an easy IV access) and every year I like to acknowledge the occasion! Just another reason to have fun ; ) That evening we spent with Mom and Dad and Blizzie. My parents even got me cake! I know it sounds so ridiculous to celebrate something like a MediPort, but it really has been very important (no pun intended) and you can never have too many reasons for cake!

And here is Mom, Dad, and Blizzie at our little party!

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