A Photographic Journey to Iowa City

So, on Thursday Jake and I drove up to do the 6-minute walk and talk to the transplant doctor for the first time.  I decided to take the camera along to show a typical trip to Iowa...though I guess I've never gone for this reason before, so it's not really typical, but...oh, you know what I mean.  This is gonna be really exciting, so buckle up! 

I am not a morning person.  At all.  Morning and I?  We just don't get along.  And this particular morning started at 5:59am...and that was 29 minutes later than it should have started...thus this was my reward.  Granted, I probably should have taken pictures of the actual doughnuts, but by this time they were long gone.

This is Jake driving.  He always drives because I tend to develop narcolepsy when at the wheel.  We've decided it's best this way.

This is one of the construction areas we went through.  

There were only a couple.  In Bloomington, Peoria, Galesburg, the Quad Cities, and Iowa City.  I still don't know how we made it to the appointment on time.

This is a construction worker wondering why the chick in the car is taking his picture as she drives by.

 Are those mountains in the distance, you ask?  No, no.  Those are just cool clouds.

This is a bridge going over the Mississippi River.  Not the one we usually go over, but that one was backed up by, you guessed it...construction.  I like this one, though.  It gives the illusion of being extra sturdy, don't you think?

This is the Pulmonary Rehab gym I use every time I'm in the hospital and where I did my 6-minute walk.  That's me over there by the glass being weighed and measured by Janie.

These are two great people.  That's Jana Beaver on the left.  She's the lung transplant coordinator.  And that's Dr. Klesney-Tait on the right.  She's the transplant team pulmonologist.  I was talking to the social worker, Emily (forgot to take a pic!), and started crying.  She was incredibly understanding and reassuring.  Then she left the room to give Jake and me a minute to talk.  Pretty soon Jana walked in and said she'd heard I was having a tough time and gave me a big hug.  It's just what I needed.  I'm really looking forward to working with them more.

As for the actual appointment...there was a lot of information given to us in a relatively short amount of time (about an hour).  Dr. K-T was very blunt and honest about everything, as she needs to be.  This means that there is a lot for Jake and me to process, and we are still doing just that.  I will post later about all that we learned.

I hope you've enjoyed this photographic journey.  I'll continue to take pictures and hope that they get more interesting from now on :)

Home at Last

(This post seems really disjointed to me, so for that, I apologize!)

I got out of the hospital yesterday.  It was a great relief due to the fact that this stay was particularly hard on me emotionally and mentally.  Since December 15th I have been in the hospital for a total of 59 days.  (That's 2 months out of 5, or 8 1/2 weeks out of the last 22, or 59 days out of 155.  Bottom line is, it's been a lot.)  Being in the hospital is always hard, but to be in so much is taking a big tole on my emotions.  

I'm around people all day long - doctors, nurses, nursing aids, physical therapists, physical therapy aids, pulmonary therapists, social workers, food and nutrition workers, dietitians (you get the idea) - but I'm still lonely.  These people to a great degree become friends and my "hospital family", but it's just not the same.  I miss my husband, who is my best friend.  I miss my friends and my family.  I miss the support and the love.  I talk to people online and in text messages and sometimes even on the phone (I hate talking on the phone, so...).  I see Jake and my parents on the weekends.  But during the week I just feel alone.

This time was really hard too, because everything seemed so hectic.  Because we were trying to get a lot of the evaluation testing for transplant done, it seemed I was always being taken somewhere to do some kind of uncomfortable test.  And I know it's only the beginning.  There is going to be so much to come with this transplant.  I'm just not sure I'm handling it well.  Going to do these by myself was hard.  Again, I just felt alone while doing something that is literally life changing.

I'd love to say I prayed through each one of them, but honestly, I forgot sometimes.  While doing my Echo I prayed because of how uncomfortable it was, and during my CT yesterday morning I prayed because I thought the contrast dye was going to make me throw up (it has had that affect on me, but thankfully, it didn't this time).  I wish it was my first response to every situation, but I know a lot of people were praying for me even when I forgot.  God carried me through each test and everyday I was at the hospital.

I've learned, lately, that while situations may never change - life will always be hard - He'll give me the strength to get through each day.  I'm also learning more all the time that this place is not my home.  Every time I'm scared and lonely, I'm reminded that it's because we were not created to be physically apart from the Father.  Our real home is with Him and we will never be wholly who He created us to be until we're with Him.  I laugh sometimes when I think about the fact that I'm trying to extend my life here on earth while I so desperately want to be in the place we were really meant for.  I fully stand by my decision, though.  I want to do what I believe God wants me to do, which is to continue to choose life.  I'm going to continue to believe, even though I do sometimes have doubts, that He has a purpose for me that I can't imagine or accomplish on my own.  I can only accomplish those purposes by staying faithful to His call for my life.  After all, our lives are for His glory alone.

Tomorrow, Jake and I are going back to UIHC to do the 6-minute walk I couldn't get in while I was there, and to meet with the transplant pulmonologist, Dr. Klesney-Tait.  It will be a long day of traveling, so please pray for safety and that things will go smoothly.

Thank you for your continued prayers and support through all of these challenges.

Marriage the Way He Intended

My nurse (who is not usually on this floor and who I just met last night) came in a little while ago.  While talking about meds and schedules she asked if it was my boyfriend/fiance/husband who stayed last night.  I told her that, yes, it was my husband.  She then said she had been talking to one of the aids on the floor and asked him if he'd told his wife "Happy Mother's Day".  He apparently said no and that she called him a "jackass".  The nurse then said "I called my husband the same thing.  Must be hereditary in testosterone".  I was honestly just shocked that she would tell me that and had no idea how to respond.  I just did that half-smile thing to acknowledge I heard her and said nothing.  I wish something would have come to mind, though I'm afraid it would have been some smart aleck comment that would have done more damage than good.  Several things came to mind afterward, of course.  If you tell a complete stranger that you've called your husband a thing like that, I'm sure it's safe to assume it's a pretty common occurrence.  So, something along the lines of "So are you getting divorced soon?  I know if I called my husband that repeatedly, he'd certainly not have a lot of motivation to stay with me".  Or "Does he call you things like that too?".  Or "I guess you don't have a lot of love for him, huh?".  But like I said, I'm sure these would have done more damage than good.  

After going through all the inane possibilities in my head, I started thinking about marriage.  It's a passion of mine, to experience and encourage marriage the way God designed it to be.  I have a specific passion to encourage women to treat their husband's with respect, to give them encouragement to lead their families, and to build them up whenever possible.  This, of course, always means that we as women need to hold back when we want to yell, allow them to have the final say in all decisions even when we may not agree, search for every possibility to tell them we're proud of them, and to talk more about their accomplishments than supposed failures.  It's not always easy, but when you look at the job they must do, I think our part pales in comparison.

Marriage is the picture of Jesus, the Groom, with His followers, the Bride.  Jesus took our sins on Himself, and died in our place so that we could have life.  Husbands are held accountable for their families; for their wives and children.   They report directly to God for our sin.  After all, it is his job to be the spiritual leader.  They are also required to be willing to die for their wife.(See Ephesians 5:25-33)  Can you imagine greater responsibilities than those?  But we as wives make their jobs nearly impossible sometimes.  Have you ever tried to lead someone who obviously didn't want to be or refused to be led?  Have you been around someone who put you down all the time or called you names or yelled at you for forgetting an event or was constantly telling you you did something wrong?  It probably made it downright unbearable to be around that person, right?  You may even have cut ties with that person because of their personal attacks.  It's the same with husbands.  God has not only required them to, but has placed in their hearts the desire and the ability to lead.  It may not be the way you think they should lead and they may be completely apathetic about that calling, but that is not our part or our responsibility.  Our part is to *gasp* submit.  It's a nasty word, I know.  But that's the truth.  We are called to follow our husband's lead.  (See Ephesians 5:22-24 and notice that where the men have 9 verses dedicated to their role, women only have 3.)  That's it.  Whether you knew it at the time or not, when you said "I do" you were really saying "I will follow".  That IS our part.  It was a choice.  If you didn't want to be led, then quite honestly, you shouldn't have gotten married.  If you're already married, then you need to follow.  There is no gray area here.  Now, of course, there are exceptions.  If your husband is leading you to do something clearly against God's Word and will, then you should not follow.  But that is the only exception.  It's a tough task, but we're strong women, right?  We are up to the challenge.

So, thinking about what that nurse told me.  Can you imagine calling Jesus that name? (I can't even bring myself to put those two names in the same sentence!)  I'm not saying your husband is the perfect Savior sent down to heaven to rescue us from sin.  Your husband is a fallible human being, capable of mistakes...but let's face it, so are you.  So, unless you're prepared to hear the same things in response to your mistakes, refrain from saying things like "I told you so" to your husband when a mistake is made.

Just to perfectly clear, I am not perfect at any of this and make no claim to be.  You're welcome to ask Jake about mistakes I have made in our relationship.  I'm not proud of any of it and try with all I have to be the wife I want to be and who God has created me to be.  The point is to make progress.  If you're exactly where you were when you got married then you probably have some work to do.  If you've made progress, don't be too quick to pat yourself on the back.  You'll make plenty of mistakes to make up for any progress.  But make progress.  Move forward.  Don't stay stagnant in your relationships with either man in your life (God first, husband second).

And if you want to make your hubby feel extra loved, tell those around you how proud you are of him.  Point out the wonderful qualities he has and the little things he does for you.  I promise you, word will get back to him what you say about him, whether good or bad, so make sure it's good.  There are plenty of people in the world who will want to tear him down.  Make yourself the person he comes to to be renewed and refreshed.  He'll want to come home, and he'll want to be the husband God has called him to be.

I'll step off my soap-box now...

One last thing...I am obviously not ready to do anything with this passion if the previously mentioned thoughts are the first ones that come to mind.  I need prayer! :)

Chillin'

My day started off a little rough.  They tried to draw all my labs this morning but for the first time ever, my port decided not to draw blood.  So, we finished my antibiotics for the morning and am hoping that by tonight it will decide to draw.  Otherwise we'll have to change needles again and see if that works.

At 12:30pm I went to do bunch of PFT's.  The one I normally do is called spirometry, but this time I did that and 2 other tests.  All together it took 2 hours to complete.  By the time I got back I was pretty wiped.  I ate a late lunch and then decided to treat myself to a little relaxation.

The hospital has 2 "Massage Oasis" spots, so I went down and had a 30 minute chair massage.  Holy cow.  I've never had one, but I think I'm now addicted!  I always have rock hard muscles in my back, neck, and shoulders and when I come in the hospital they get even worse.  Dr. Hornick was explaining accessory breathing muscles when I was admitted.  When you're breathing hard (usually during aerobic exercise or the like) you use muscles in your neck and shoulders  that you don't usually use during normal breathing.  However, when there is significant lung disease, breathing becomes harder and then those muscles are used much more often and can become tense.  When I came in, those muscles were particularly tight.  He showed me something I can do to take the pressure off of those muscles which does help.  But after sleeping on these hospital beds, everything gets tighter, so hence the massage.  It was great!

After that I decided to further treat myself and got a cup of coffee at one of the kiosks.  It's a Caramel White Chocolate Mocha.  It's Ghiradelli chocolate and caramel, so it's quite tasty :)

While writing this my nurse came in and we tried my port again.  It worked!  Woohoo!

Jake is on his way up along with mom and dad, so I'm pretty psyched for that.  In the meantime I'm just chillin' out and enjoying my coffee and unusually relaxed muscles.  

Should be a good weekend :)

Evaluation

Today started what will be a slew of tests to evaluate whether I can have a transplant.  I had an EKG and an Echo.  It wasn't bad, except that the person who did the Echo was a guy, so that was a little uncomfortable.  But I'm sure I'll go through much more uncomfortable things than that so I may as well get used to it.

Tomorrow I'm going to get a LOT of blood taken.  There is apparently a stack of order an inch thick.  Thankfully most of it will come out of my port so I'll only get stuck for a Tobra trough that was already scheduled for tomorrow.

The original plan (this morning's plan at least) was to do the chest CT tomorrow, but Dr. Hornick decided he didn't want me doing that while I'm on antibiotics.  So, we've tentatively scheduled that for next Thursday.  That  could change depending on how well I'm doing next week.  Contrast dye, which they use in CTs, is hard on the kidneys.  The antibiotics I'm on now are also hard on the kidneys.  So, he will take me off of the antibiotics the day before I go home and have the CT be the last thing I do before I leave.  When I get taken off the antibiotics I'll then get to do a wonderful tasting neb called Mucomyst.  (I'm not exactly sure how it works, but it's an antioxidant that will help the kidneys.)  This stuff smells and tastes like rotten eggs.  I'm not even close to joking.  We used to call it puke-o-mist or other appetite-wetting names.  It's really horrible stuff.

I'll still have my appointment with the transplant pulmonologist (not the surgeon as I incorrectly stated yesterday) on Thursday as well.  Sometime in the next week I'll also do the 6-minute walk test.

As for this hospitalization, things are getting a little better everyday.  My chest isn't nearly as tight as it was and the wheezing keeps improving also.  I'm hoping to see a better PFT number on Tuesday since the one this past Tuesday was only 29%.  I feel a lot better than I did, though, so I hope that's a good sign.

And, just because I want to brag (I've NEVER been able to brag about this!): My A1C number was 6.4% this time!  Woohoo!  I'm kinda proud of myself :)

Lung Transplant Decision

FINALLY, a new post!

Well, after praying and thinking about it for months I've finally come to a decision.  I will be going through with getting a transplant.  Here's the when, where, why, and how:

When: My lung function has been around the mid-30% (when I'm at my best) range for awhile.  I won't get listed until I'm in the mid-20% range.  They figure that by the time you're there you'll need the transplant in 2 years or less.  So, hopefully I won't get listed for awhile.  Since CF is so unpredictable, they want to have things in place in case things change for the worst quickly.  I have an appointment on the 14th to do some of the testing, but since I'm already in the hospital, Dr. Hornick said we'd try to get this set of tests done while I'm here.  I'll be having a chest CT, PFT's, a 6-minute walk test, and I'll talk to the surgeon.

Where: Here at UIHC.  They've had a program since the 1990's, but didn't have a surgeon for several years.  They got one again a little over a year ago.  It's actually what started me thinking about it all again.  I love the people here, I love the doctors, and I love the town.  Sometimes being comfortable and trusting the people you're working with is more important than going to the absolute best place in the country.  Though, Iowa does have a great track record. Also, since they're relatively new, the list is relatively short so my wait should be pretty short once I'm listed.

Why:  Like I said, I've been thinking about it for awhile...again. :-P  What finally got me was when I heard one of the girls I've known here for a long time, Jamie, got her transplant in December.  In January my PT aid, Amanda, was telling me about how Jamie's last few days before the transplant went and how she was doing since. I started crying. Granted, I cry a lot, but still, I didn't know why I was crying. A couple of years ago when I was seeing a counselor (seeing one now too, but a different one) she told me that whenever I cry there's an emotion behind it and I need to figure out what that emotion is. So, I thought about it and figured out I was crying because I really wanted that chance. I wanted the chance to breathe a full breath and even if I only had that for a minute, I wanted the chance. I realized how much I really wanted a transplant. So after talking to Jake, I decided to pursue it. I told Dr. Hornick I was re-thinking my decision and he got me in contact with the transplant team. It's all gone pretty fast. I've talked to the transplant team's social worker and both lung transplant coordinators. After a lot of prayer and thinking I was almost 100% sure I wanted to do it. For the past couple of months I've been devouring books. I don't know why I suddenly want to read all the time, but I do. I've totally fallen in love with Karen Kingsbury's books. She's a christian fiction author and her books really make me think about a lot of things. So, I was reading one of her books and in this one in particular she was talking a lot about choosing life in all circumstances. When I was done I read the author's notes and she said her dad had been diagnosed with cancer and though he was told it may not do anything for him he decided to go ahead with really aggressive treatment. She said that her dad had always taught them to choose life. I looked up a verse she referenced, and although it was not quite "you need to get a transplant", it really confirmed my decision. I know that in context it means choosing God and ultimately, Jesus Christ, but still...I think it fits. The verse was Deuteronomy 30:19 - "Today I have given you the choice between life and death, between blessings and curses. Now I call on heaven and earth to witness the choice you make. Oh, that you would choose life, so that you and your descendants might live!". So, although it may not last more than a minute or even less, I want to choose the chance at life. And if that's all I get I still get to live - just in a different place.  Either way, I win. :)

How: It's a complicated process as you can imagine.  I'm going to try to chronicle my lung transplant journey on this blog, so you can all see how it happens with me.  Things are overwhelming right now.  I have such a mix of emotions...from anxiety to excitement.  Part of the process is to meet with a psychiatrist so that's gotta tell you that this is a stressful and emotional process.

I would love for you to continue to pray for me, my husband and family as we go through this.  Some specific prayer requests:

*Please pray that I will put my faith in God alone.  During my emotional ups and downs I want to draw on His Word for strength.  I've tried to make a point of reading something from the Bible when I find myself starting to stress out, become depressed, or worry.  I want this to be my first reaction rather than my last resort.

*Pray that I will keep an eternal perspective in mind.  When I worry what people will think or how they will view me, I lose sight of my purpose - to bring glory to God.  When I concern myself only with how God views me and what I am "storing up in heaven" I am much more likely to be bold in my faith.  

*Please pray that my family will be united in this.  No family is immune to problems and there are bound to be problems that come up in this stressful time.  Pray that we will all be reminded that we need each others support, need to love each other, and can use this time to renew and rebuild relationships.

*It is very easy for me to do everything to distract me from my emotions rather than actually dealing with them.  Please pray that I will talk about the emotions, deal with them, and most importantly take them to God in prayer.  He gives peace in a very unpeaceful world.

*Please pray that God will give me courage.  In my weakness, His strength is made perfect and I pray that His strength and glory will show through me.

The Weekend and The New Digs

I'm feeling so much better.  Dr. Hornick took me off of the Lisinopril (blood pressure meds) last week and by Friday I was feeling pretty good.  Apparently, one of the side effects of that med is spontaneously developing a cough, so he thought it might be part of my problem.  Combine that with my blood pressure dropping and the dizziness and it sure seems like the right thing to do.  He's going to talk to my endocrine doc (Dr. Doelle) to see what other med I can be put on for the nephropathy.

I'm feeling so much better, in fact, that when I did PFT's on Friday I blew 35%!  That is back to my baseline and that makes me VERY happy! :)  I was on such a high after that that I didn't take a nap at all, but then was exhausted by that night.  Oops.  Oh well...I have to take what I can get when I have the energy to have it!

Jake and dad came up Friday night and stayed for the weekend.  When it's just me and "the guys" we tend to talk about different things and do different things.  I love when my mom comes up, but it's nice to just have dad sometimes too.

We went out to lunch on Saturday at Bennigan's and spent 2 hours just talking.  I love when this happens.  Just getting to sit around, munching, and discussing that things that are going on in our lives.  You'd think that since we live with my parents that we'd get more times like this, but they are very respectful of our privacy and need to have our time, and we try to do the same with them.  So, it's just nice to talk and go over the things that are happening...and there's always something happening.  

I love my dad's heart and hearing him talk about the things that are pressing on it.  It lets me know how to pray for him and how I can try to encourage him.  I hope that I can give back to him, even a fraction, of what he's always given me.

On Sunday we tried a new restaurant in town that we decided we won't do again.  It was a little barbecue place and the food was okay, but it took over an hour to get our food (which I guess is normal) and we just weren't impressed.  Again, though, good talks and it's always fun to try something new.

We spent the rest of Sunday afternoon at Barnes & Noble and amazingly made it out of there with a very small bill.  We got a couple of good books and I'm already pretty far into mine.  It's a nice distraction  while I'm here.

I realized over the weekend that I hadn't even mentioned the new floor. Well, for good reason :) The "ward" that was previously known as PICU or Pulmonary Intermediate Care Unit, is now known as RSCU or Respiratory Specialty Care Unit.  It's not all it was cracked up to be.  It is not at all warm like the old PICU.  It had fake hardwood floors and cozy colored walls which made it very homey.  Not here, though.  The whole floor is coated with sterile white walls and floors...okay, maybe beige, but still.  The lights are so bright I think they may have once planned to do surgeries in the patient's room.  Thankfully, they're talking about changing the bulbs.  

The majority of the rooms ARE bigger, but the two rooms I've had so far and actually even smaller than the old ones.  With all the stuff I bring up here, it is a little claustrophobia inducing.  

We do have flat screen TV's, but if you have the lights on there is a big glare.  We also have DVD/VCR players, but unfortunately the remotes have already disappeared and there is not way to navigate the menus in the DVD's from the box itself.  Somebody at Zenith was not thinking there.

Really, the hardest part is that these nurses/nursing assistants/respiratory therapists/housekeeping staff just don't know us.  They don't know our routines or Dr. Hornick's.  It's a tough break in period.  I didn't realize how much our old nurses just knew us (and even each of us individually) and knew how Dr. Hornick operated.  It's really little things, but little things add up.  

We were never woken up before PT came in to do CPT on the other floor.  Vitals waited until we were fully awake.  Housekeeping would wait until after 12:00pm to come in.  Things like that.  Then there's things like flushing the line really well after administering Tobramycin to make sure levels would be correct later and how often all the tubing needs to be changed.  Dr. Hornick has specific guidelines and everybody on this floor is learning.  Everything will get to where it needs to be, but in the meantime things can be a little frustrating for everybody involved.  I'm just hoping for some dimmer lights and maybe a bit of color.