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!