Spring!

I have a few minutes before I need to start getting dinner ready so I thought I’d let you know what has been going on in the Slick nest…

March and April flew by! I was given 2 weeks of IV antibiotics for a lung infection that I didn’t even know I had. At the beginning of March I was scheduled for my 1 year bronchoscopy and one of the biopsies showed a little infection. It took a while, but my pfts bounced right back and looked better than ever! We celebrated Jonathan’s 23rd birthday at the end of April. Growing up, my mom always decorated the kitchen and living room with streamers and balloons so when we woke up the next morning, it would already look like a party! And even though Mary and I have birthdays 4 days apart, we each had a totally different set of décor! So naturally, I wanted to deck out our apartment in true Meroney Birthday style for Jonny. The night before his birthday, I told him not to come in the living room until I said so. I was climbing all over the furniture, jumping on the couch to stick streamers on the ceiling, and of course there were balloons to blow up. I saved those for last because even though I have great lungs, I’m not exactly used to blowing up balloons! But it was no big deal. I just stood there and blew up 5 of them…no problem. I couldn’t believe it. I just burst into tears. Jonathan could hear me from the other room and told me he was coming in weather I liked it or not! And he looked at the balloons and picked me up and held me. Up until April I didn’t quite feel like this whole transplant thing was really turning out to be what they said it would be. Yes, my quality of life was so drastically improved, but it was still so challenging. And that night I could really, honestly say, ”This is totally worth it.” I wish I could tell you what it felt like. To be able to physically see a change…I will never forget those 5, beautiful, green balloons.

May was exciting and full. My 3 homeschool ballet classes had their recital! They performed at The Maryland Theater which was probably more exciting for me than it was for them. All growing up Ballet and All that Jazz held their performances at the theater. And now, my own class was performing. I was so nervous that morning, but as soon as I stepped on that stage, all the nerves settled down just like they used to. All my darling little ballerinas danced their sweet hearts out. And that is another experience I will never forget.

June has been rather crazy! We are trying to figure out where we are going to live…and that is not a fun process. Jonathan has promised me a puppy and we cannot have one where we are now. So that is a big source of motivation for me! Every other week I get together with one of my dearest friends in the whole world and we day dream about Jonathan and I moving into the neighborhood she and her husband and 3 girls live in : ) But, we will see what happens!

Last week we suffered a tragic event in our family. Irwin, our first born hermit crab, died. He had moved into a shell that was way too big for him and he couldn’t really move…I kept helping him get in the water dish, get in the food dish, crawl around a little…but sadly, it did not help. After that, Woody and Peeta thought now would be a good time to make a move too, so after 6 days of musical shells (Woody changed 7 times and Peeta 2 times) Woody has settled into Peeta’s old shell, and Peeta is in Woody’s old shell. I can tell because Peeta is missing half of one of his legs…

The last event I’ll tell you about is today. I went for my 3 month check up. It was amazing. I guess I must have looked really terrible when I was sick and no one told me…because now that I’m well everyone is saying how great I look and how healthy! My coordinator Brian said I am lookin’ so good I made his day! Dr. Orens looked at my CT scan from this morning and said my lungs look “beautiful”. Everyone is happy with my 85% lung function. I even get to stop the one drug that has been giving me extremely bad problems with the sun! Hello, beach : ) I saw my CF doctor in the hall today and he was so happy to hear how well I’m doing. My CF doctors and nurses are some of the most amazing people and although I’m happy that I don’t have to see them for treatment, I miss each one of them : )

Well, I’ve got some dinner to make for my wonderful, sweetiepie husband <3

Love,
Rachel
Genesis 18:14

Toughest on Earth

It’s been a couple months over a year now and Rachel’s lungs are doing great. She had a staph infection about a month ago and had to go on IV’s for a few weeks, but she’s bounced right back and her PFT numbers have come back up again. We are currently in the process of remedying another malady though: muscular damage.

For over 4 years leading up to the transplant, Rachel was on high doses of steroids to keep the inflammation down in her lungs. These steroids masked many other symptoms and also caused her body to not heal damaged tissue. Now she’s taking 1/12 of the dose of steroids she was on before, so injuries that could have happened months or even years ago are starting to show up. Last August, Rachel began experiencing pain in her hips, especially when seated. It’s gotten progressively worse and a few months ago she had an MRI to see what was going on. The scan showed that she has a torn labrum (cartilage) in her left hip, a bulging disk in her lower back, a swollen quadratus femoris (an external rotator in the hip) in her right hip, and a partial thickness tear of greater than 50% in her right leg. Being the tough girl that she is though, it took a while for her to get fed up with the muscles that weren’t healing with rest and go see an orthopedist to see what we could do to fix it.

Enter Dr. No. We’ll call him Dr. No because I believe his full name is Dr. Nowayamianactualdoctor. I won’t go into detail, but when I have to explain an MRI reading to a doctor who “can’t tell what he’s looking at” and is skeptical of my wife (you know, the girl who went through the largest thoracic surgery one can undergo) when she says she’s in a lot of pain…that’s not going to work for us. Rachel booked a meeting with a different doctor that we’ve heard a lot of good stuff about and hopefully we can get a physical therapy plan together to work on healing the torn muscles, and calming down the swollen ones. When it hurts to much to walk outside and enjoy your new lungs, it’s more than a little frustrating…

I’m writing this because I know Rachel probably won’t. She doesn’t like to complain and doesn’t want people to think she’s constantly whining even though she’s constantly in some form of discomfort. Rachel is tough beyond what anyone I know considers tough. The other night we were watching a video of Annie Thorsdottir, the winner of the 2011 Crossfit Games which earned her the title of the Fittest Woman on Earth. Picture a young Icelandic woman’s head on the body of male gymnast on steroids (different kind than Rachel’s) and that’s Annie. Better yet, Google her name for yourself and watch her throw heavy weights around, walk on her hands, push 200lb sleds across concrete, and outsprint groups of male athletes (many of which are smaller than her). Anyway, after finishing one of the videos that night, Rachel sat back and calmly said “I’m tougher than her.” There was no argument there. It wasn’t a statement of pride, it was just a statement of the fact that my wife has gone through a life that requires a kind of mental tenacity that not many other people posses. Being that tough is more than just surviving difficulties, it’s striving despite them. Rachel’s positive attitude throughout her challenges is a testament to her personal resilience and steadfast faith in God to give her the strength she needs.

Annie Thorsdottir might have earned the Fittest on Earth, but Rachel Slick got Toughest on Earth.

The Transplant in Statuses

Below are all of my facebook updates during the transplant hospitalization If you have time, go back and read the blogs from these dates as well...

2/26:  "Rachel was taken back into surgery at 6am. She's doing great with everything and appreciates all the prayers. The procedure can take up to 8 hours, but I'll be with her 45min after she comes out with her two new, CF-free, lungs. God is good. 

Just saw the box containing the new lungs roll past the waiting room. Rachel is doing great and about to receive them! 

Rachel's new lungs are placed in her and being sewn in now! 

SUCCESS! Lungs are in for good and Rachel is doing great! Lungs were a perfect match, no damage, and she didn't have to go on the heart-lung machine! A perfect surgery. Keep praying as the next few days are critical in her recovery. God's the man! 

Just saw Rachel come past the waiting room. She's sleeping and looks even more beautiful than ever (if that's even possible). Doctor said the new lungs are gorgeous. The docs will wake her up later tonight and make sure that she can move everything ok. She'll be on a ventilator until tomorrow morning. 

Just got to kiss my wife on the forehead...the simplest thing feels so incredible right now. She's receiving her epidural now which will allow her breathing tube to be easily removed tomorrow. Her blood pressure is down a little, but that's normal after this kind of surgery. The X-Ray of her new lungs is textbook perfect... we couldn't have asked for a better pair. 

Rachel is awake! She was able to use sign language/finger spelling to talk to me and her parents just a moment ago, in probably the most moving moment of my life second only to our wedding. "I love you forever" signed into my palm about did me in. Her blood pressure is now normal, O2 level is great, and body temp is awesome...her nurse told me that this is the best transplant she's ever seen at Hopkins. 

2/27:  Rachel breathed on her own with her new lungs for the first time around 1am this morning! This was just after they took her off the ventilator and she had the difficult task of learning to breathe again. We saw her shortly after and were able to talk with her. She says she's breathing so much better already and not in a lot of pain. 

I walked down the hallway of the ICU with Rachel just minutes ago. Less than 24 hours after her lungs were in and she's already walking. It's amazing. She's breathing great but VERY tired from all the meds and the adjustments to her new lungs that her body is making. 

Rachel is still doing great, but please pray for Rachel's thirst to dissipate and for her swallow test to be scheduled soon so she can drink. And also for a room to open up so she can move to a regular room and out of ICU. 

I just helped wheel Rachel from ICU to a "high level" regular room! Normal time in ICU is more like 3-4 days post transplant, but God has different plans for my girl. I get to be with her tonight. Pray that we both get some much needed sleep and continue to pray for her thirst/swallowing issues. 

2/28:  Rachel did well enough on the swallow test to start eating pudding/yogurt as soon as her Dr's give the OK. Pray that they do. She also walked a whole lap around her recovery floor, impressing all of us and the staff again. 2 more chest tubes were removed today and the picc line was put in. 2 more good things. Also, we appreciate everyone's support, but we'd rather wait to have visitors once we get home. Thanks! 

Thank God! A meal is coming to Rachel! It will be the first fod she's eaten since 9pm Thursday night. It's only things of pudding-like consistancy, but it's still food. She's so encuraged and excited. 

3/1:  My girl beat everyone on her floor on the "lap around the nurses' station race"! Ok, it wasn't really a race, but she still flew past two old dudes like they were standing still. Doctors are thinking she will be sent home next Monday or Tuesday! She just has to pass another swallow test tomorrow or Thursday, be able to walk up stairs, and get her last chest tube taken out before she can come home. 

3/2:  Just had a good meeting with our transplant coordinator, prepping us for life at home. Rachel's in a little more pain today, but still feeling great overall. They might have to put a small chest tube back in that came out yesterday to help a lung fully inflate, but the doctors aren't worried and it's not setting us back any. 

3/3:  Rachel just passed her swallow test! She can now eat and drink whatever she'd like! Let the Mountain Dew start flowing and the chocolate start piling up...she's got a lot of catching up to do after 5 days without eating or drinking anything except "honey-like" liquids and "mechanically soft" foods. 

Rachel's last remaining chest tube was taken out today too! All she has to do is walk up some stairs and we'll be ready to go! 

Rachel just walked 6 laps around her floor with me! This doubles the amount she did yesterday and set a PR for laps completed in a day. She's definitely going to be a threat on the race course before long... 

3/4:  Rachel's doing great this morning, but in a good bit more pain. They're switching her to an oral pain med and taking out the epidural soon. She's also having a bronchoscopy ("lung vacuuming") at 1pm to clean out anything in her lungs. Luckily she'll be asleep for that. 

Rachel just finished her bronchoscopy that went very well. She's coming back up to her room in a little bit. She'll be on facebook before long, so...if you have a picture of you and Rachel, post it as your profile pic and post something on her wall. She'll love it... 

Rachel's 8 laps = 3 football fields...just to put in perspective the distance my recently lung-transplanted wife just walked. 

3/6:  Please pray for Rachel this morning, as she's in the most pain she's been in since surgery. The numbness is wearing off and it hurts for her to take the deep breaths she needs. She's still doing really well though and is keeping her incredibly positive attitude throughout it all. 

3/7:  Thanks for the prayers, Rachel is doing 100 times better today. She's already walked twice, done a bunch of deep breathing exercises, and is able to cough with much less pain. The doctors are working towards us getting out of here tomorrow...pray that it happens and that Rachel continues to feel better. 

Got a call from the home care coordinator who is working on getting us out of here around 11am tomorrow...keeping praying that this happens. Rachel has walked 11 laps total today! She's also done a ton of breathing exercises and even walked some stairs. We'll be home soon! 

3/8:  Dr. came in and said that Rachel is ready to get out of here! Either late today or first thing tomorrow morning...we're REALLY hoping for today. 

Well, we won't be home until tomorrow around 1pm, but we're still coming home! 

Spoke too soon again...we might not be home until Thursday if certain kidney and blood levels don't even out. This is getting a little frustrating. Pray that everything works out and we can leave tomorrow as scheduled. 

3/9:  No go for leaving today. Maybe tomorrow morning if Rachel's kidney levels go down...possibly not 'til Friday. We've been hearing "Maybe tomorrow, but probably the day after" since Monday. At least Rachel's feeling great and her parents are headed home for some much needed rest tonight. In much less important news: I've made a great gym out of the fire stairwell ever since we checked out of the hotel with a gym. 

3/10: Lab work is being sent off...come on creatinine level, go down so Rachel can come home! Oh, and 18 laps (740 yards) yesterday? Yeah, that's my wife.

COMING HOME!!!!

I just made dinner...in our house. And I made it for my wife...who can finally breathe."

So here we are, one year later. We've gone through a hospitalization for kidney failure just weeks after Rachel's transplant, another stay for kidney failure a little later, an admission for a blood infection, and another stay for mild rejection all before August of the first year. At home she's been through continual pain from the surgery, sickness from the medicines, torn muscles from being on high doses of steroids, and many other maladies that no one should have to endure. I'm not reminding everyone of all this to draw pity or to elicit more emotions, but rather to reiterate what God has helped us through this year, and how far He has brought Rachel. The average lung transplant patient is hospitalized 6-8 times in the first year and has a lung function of 80%. Rachel was hospitalized 4 times and just weeks ago tested her lung function at over 96%! Yes, she still has pain, still takes medicines, still has rough days, and still has many doctors visits and blood drawls, but through all of this Rachel and I have relied on our faith to get us through each daily struggle. 

The doctors told us that the first year says a lot about how your body will react to the lungs in the future. People who do well their first year, normally do well for their first 5 years after that. The better they do after 5 years, the better they'll do by 10 years. The anniversary of Rachel's transplant is less of a celebration of the surgery itself, but more of her making it through this year so well, and the hope that we have for years to come. 

Being married to Rachel is like witnessing a miracle every day, and I hope you too have enjoyed watching her exemplify strength and trust in God throughout this past year. 

One Year

One year ago today I posted a blog about how tired we were getting of waiting, how long the 109 days of being listed had been, that I just wanted to get it over with. Once again, I found myself giving up the control that I didn’t have anyway and trusting in God’s timing. And that night the phone rang. I remember how surreal it was. The lady on the phone sounded so calm and pleasant. “Hi Rachel, Dr. Shah would like you to come down to Baltimore tonight and have your lung transplant in the morning.” I remember exactly where we were on the Dual Highway, exactly what song was on the radio, exactly what it felt like to choke the tears down as I finished the phone call.

Everyone keeps saying, “Congratulations!” and “Wow, you seem to be doing great!” when they find out that February 26th is my one year anniversary. And I probably make the strangest face back at them…trying to smile and thank them knowing that God has done incredible things in my life, but having the feelings in my heart go the opposite direction. I will be the first person to say that God does miracles, that He heals, that He does far more that we can even imagine. I am writing this right now as proof. But I am also here to tell you that it is not easy. When they warned me that the first year would be a nightmare, they were 100% accurate. They told me that transplantation is not a “fix.” It’s a trade. I can breathe now. I can go up the stairs. I can vacuum. But I still take medicines, still go to the doctors a lot, still don’t have the body of a 24-year-old. Sometimes I get so frustrated. I forget that “Here on earth you will have many trials and sorrows” (John 16:33) even if you do get a double lung transplant. I forget that there isn’t a verse in the Bible that says, “Life will be so easy and everything you do will work out perfectly and be shiny and sparkly.” Nope. It isn’t in there. Believe me, I’ve looked. But I can tell you this morning, that looking back over the last year, the times when I stopped expecting things to be super easy, when I accepted that I will have problems, those were the times that I truly lived. Because then could take comfort in the words that follow in that verse, “But take heart, because I have overcome the world.” How awesome is that? Jesus knew about trials and sorrows. He was tempted. He lost his friends to death. He was cheated. He was betrayed. He was lied to. He was hurt. He was humiliated. He asked God to change things. He trusted when God didn’t alter the plans. He felt alone. He couldn’t breathe. But He did not give up. And He didn’t just get by either. He overcame.

That’s what I want to do. I will not let this get the best of me. I will live my life, however long or short, healthy or sick, happy or sad. And no one is ever going to convenience me that I have to have a flashy career, a fancy house, tons of money, kids, a white picket fence, or normal body, to live life to the full.

For when I am weak, then I am strong. - 2 Corinthians 12:10 

Thank you for supporting me and my family through this year.  I'm so excited and so hopeful to see what God is going to do in my second year. It's going to start of with a new hermit crab to join my other two little sweeties! Jonny's lungiversary present to me :) And I'm really going to try to get better at updating our blog. This Thursday I have my 1 year bronch, so if you think of me, please pray that my lungs will be looking good from the inside and that there will be no signs of rejection.

Love,

Rachel