Hospital, Heart-Cath, and Transplant Surgeon

I just got home from my 2 week retreat in my favorite vacation spot - University of Iowa Hospital. Thankfully, this trip was fairly uneventful. Other than being tired a lot, things seemed to go well and my PFT's even went up a bit.

My first set of PFT's were 39%, to which my doctor replied "Your PFT's have always been a little hard to explain". This just goes with my freak-of-nature theory :) I think more likely, though, is that somehow, and some way, this is part of God's plan - to continually surprise even my doctors! My second set was 37%, and I think that is probably more accurate and that I just had a particularly good day the first time.

I've mentioned before that the transplant team wants me to lose some weight. Well, instead I gained about another 10lbs. I talked to my endocrine docs and we agreed that it was due to my hypothyroidism so they increased the dosage of my meds. Hopefully, in the next couple of months I'll see an improvement in my energy level and these extra pounds will come off. It will certainly help me breathe better.

This past Wednesday I had the right-heart cath done for the transplant work-up. It was an interesting experience to say the least. Dr. Hornick stopped by antibiotics on Tuesday and that night and Wednesday morning I had to drink Mucomyst in order to prepare my kidneys for the contrast dye used in the procedure. I think I've talked about that stuff before, but for a refresher, the stuff tastes and smells overwhelmingly like rotten eggs. It is the WORST stuff I've ever had to take.

Anyways, I had been told that they would go in through the artery in my groin so I was REALLY not looking forward to this procedure. That day, though, the doc came in and informed me that for a right-heart catch they go in through a vein in the neck. I was incredibly relieved to say the least. About an hour later my nurse came in and said she had to "prep my groin" for the procedure. I said "uhm, WHY?". The doctor came back and explained to me that they have to get certain pressure readings and if they can't get a proper reading through the vein in the neck then they have to do the artery in the groin also. So already I was having a roller-coaster of emotions. It turned out they needed me down there right away, though, so my nurse didn't end up doing the prep.

Once down there I had to change into a hospital gown since I always wear my own clothes when I'm in the hospital and then lay on the table. They prepped me (not one of the shining moments in my life!) and after about half an hour got the actual procedure started. They gave me 2 shots of a local anesthetic and started to put in the IV catheter. Even with the 2 shots I was still feeling the cath go in, which was somewhat painful, so they gave me another shot. With each one I felt a prick and then a burn as the anesthetic went in.

The whole thing was fairly uncomfortable. I had to lay on my back with my head turned all the way to the left so by the end of the procedure my shoulders and neck were stiff. They also made my heart beat extra beats 3 different time which kind of feels like a sudden rapid heart rate. I got an apology after each one since it did feel really strange. While the cath was in I also did a 2 minute breathing test into a computer. After about 30 minutes of pushing and pulling the catheter the whole thing was done.

All the people involved were incredibly nice. One nurse had me hold on to her hand for most of the time and squeeze when it was painful. She kept asking me how I was doing and telling me not to be so brave. Which I really wasn't. I cried a little at one point and concentrated on breathing the whole time to keep myself from completely breaking down. It's not that it was a horrible experience, but it was new and I didn't know exactly what to expect so I was nervous. I knew if I started crying a lot I would start shaking and didn't figure that would be too good while a wire and catheter were near my heart. :)

I was nauseous and had a big lump on my neck as a result of the test, but was really glad it was over. After a couple hours, Jake had all my stuff packed up and I was discharged from the hospital. We spent the night at a hotel in town, ate pizza, and played a new Monopoly game. It was good to relax together for the night.

On Thursday morning I had an appointment with one of the transplant surgeons, Dr. Parekh. He explained more of the risks involved with the surgery, and answered our questions. He is a really nice man and I know I'm going to be in good hands. After the appointment we went out for lunch, did a little shopping and headed home.

As far as I know all I need to do now is finish my vaccinations and start Pulmonary Rehab to gain as much strength before surgery as possible. I'll do that for 12 weeks and then my plan is to use a personal trainer here in town until the surgery. He will send regular reports to Dr. Klesney-Tait. She requires this so that she knows I'm keeping up with the program.

I need to talk to Jana Beaver again to find out if that's all I have left. If it is, then when all the vaccinations and rehab are done, my case will be presented to the transplant panel at a Monday morning meeting and all the members have to agree that I'm a good candidate for transplant. If they all agree then I am immediately put onto the list and then it's a waiting game.

Thank you all, once again, for your support and prayers throughout my life and this process. This is not a burden I can carry on my own, and I am very thankful that I have so many of you helping me walk this path.

Crazy Weeks

The last few weeks have just been crazy for us. I'll try to sum it all up.

At the end of May I turned in my resignation after nearly 9 years at Franmar Chemical. It was quite bittersweet. I loved the people I worked with and really enjoyed my job, but working was becoming too hard on me. So after a lot of thought and consideration, we decided it was best for me to retire. Strange to do at 27. I asked my mom and dad if they felt old since their youngest daughter had now retired. They just laughed. We've had an ongoing joke that my body thinks it's twice as old as it is. So, at 54, I guess I just took an early retirement package. :)

Due to the significance of the appointment with Dr. Tait, Jake and I decided we were in desperate need of some alone time in a far off place...preferably with a beach. So, on May 28th we flew to Ft. Lauderdale, Florida. We made an agreement before we left that there would be no discussion of the trials we were facing at home. We were leaving it all behind for 6 days and just enjoying our time together. It was exactly what we needed. After six days of beach, relaxation, and a really cool car, we came home relaxed for the first time in long time.

As soon as we got home Jake started his new part-time position as Associate Director of Technical Ministries at our church. We'd prayed about this job for almost 2 years and God brought it to us in His perfect timing. Jake is now really enjoying every minute he spends working. Another answer to a long prayed prayer.

Along with that new job, Jake also took over my former duties at Franmar and continues to work part-time in the warehouse. Of course, in addition to starting a new job, accepting new responsibilities with his old job, and continuing to work his old hours...he also got selected for jury duty! A two-week long mesothelioma civil trial, where he was elected foreman. (Had to brag on him :) ) Could there have been any more? Well, actually, yes! During those two weeks he was on the jury, I was also in the hospital again in Iowa. Did I mention things have been crazy?

Those were the hardest 2 weeks in recent history for us. Normally, he and my parents come up each weekend I'm in the hospital. Now, however, he works every Sunday so he needs to come up during the week. But with all the craziness he had for those 2 weeks, that just wasn't possible. Monday-Friday, 9am-5pm, he was at the courthouse. Wednesday nights, Saturdays, and Sundays he was at church. Thursday night he did payroll. There was no time for him to come up to see me. On top of that, we couldn't even talk all that much. Generally, we text back and forth several times a day, and we talk every night. He was so tired at the end of every day, though, that our conversations had to be cut short.

The second Thursday I was there, I got a text from him around 5pm, when he normally would contact me. We chatted for a little bit then asked me if I wanted to go out to eat. I thought he'd gotten his days confused and thought my mom and dad would be up early. So, I said I didn't want to go out by myself. His next text said "What if I picked you up?". I read it and immediately started bawling. Happy tears, of course. I'd missed him so much and had been having a pretty rough time at the hospital (a lot of crying and a meeting with the nurse manager if that tells you anything). I called him right away and he said he'd be there in about 10 minutes. He purposely waited until 5pm to get a hold of me so I wouldn't know anything was up. I later found out that around noon the lawyers decided they were going to take a recess for the afternoon and the next day. Jake immediately went to Franmar, did payroll in a record hour and a half (pretty good for his second week on the job!), grabbed what he needed at home and started the drive to Iowa City. That is my man.

He stayed for the night and spent almost the entire next day with me...almost exactly 24 hours. He was told by several people that "she really needed you". And they were right. They know me and knew what I needed, but more importantly God did. I'd been begging God for just a little bit of time with Jake, however that had to happen. Though he could have gotten out of jury duty because of me, I wanted him and he wanted to have that experience. I knew it was only going to happen by God making it happen, and He did. I'm always amazed at the way He works.

Since I've been home, we have been on the search for a home of our own. This past Tuesday we found it. Yet another answer to a long prayed prayer. We'll be moving sometime at the end of August and are absolutely thrilled that we'll be on our own again.

This is a theme has popped up repeatedly in our lives lately. In His time, in His way, for His purposes, and His glory. I pray that I won't soon forget the lessons of these past weeks, months, and even years. God is faithful even when we are not and for that I am so very grateful.

Things are moving with the transplant process. I completed a few more tests while in the hospital and will go back in August to meet with Dr. Tait again. I also will have a date soon when I will meet the surgeon. I think I have just one more test before I am eligible to be listed. I will find out more about when that will be when I see the doctors.

As always, thank you for your continued prayers for me, Jake, and my family.

Read the Stats and Then Throw Them Away

After some prodding (Hi, Lynn! ;-) ) I decided I should probably add to my blog.  I started this 4 days ago, but it took me awhile to get it written.

When Dr. Klesney-Tait began talking to us she said "for some people this day is very traumatic".  That's exactly what it was.  With every statistic she gave and every complication she said I could have, the more the weight of the decision I'd made became clear.  This is not an easy life and anything but an easy fix to the difficulties of CF.  This is trading one life-altering challenge for another life-altering challenge.  We didn't know to what extent until that day.

Some of the main points and statistics (accurate only to the point that I took accurate notes and can still decipher them):

• Once the transplant is performed I will remain in the hospital for 2-3 weeks depending on how post-surgery recovery goes.  After that I'll be released and stay in town for 4 weeks at a hotel while continuing to do tests and being monitored multiple times a week. (I can't remember exactly how often...it may be everyday.)  After that I'll be allowed to come home, but will have to come back every month for a few months, and then gradually the visits will be farther and farther apart.
  

• The average age of a person receiving a lung transplant is 55 years old.  CFers are almost always significantly younger than that, so that is a positive thing.  However, they also have a much greater risk of post-surgery infection because the CF still attacks the sinuses and trachea.  (It will not attack new lungs because, CF being a genetic illness, they are different DNA.)  That's why they plan on a 2-3 week stay after transplant.

• Bronchoscopies are performed every day for the first couple of weeks and then on a regular basis during the 4 weeks and at each check up following for at least the first year.  They basically stick a tube down the trachea into the lungs to look for any possible complications before they become a problem.
  

• There is a 5-10% chance of mortality during the initial 2-3 weeks.

• The 1 year survival rate is 87%.  5 years is 52%, 10 years is 35%, and 15 years is 20-25%.

• The majority of those who die in the first year die in the first 3 months due to major complications.
  

• 50% of patients will have acute rejection episodes in the first year.  If the episode is recognized and dealt with quickly, they can be reversed.
  

• Normally only one anti-rejection drug is needed for transplants.  However, we are constantly breathing in bacteria and foreign matter (think dust).   So, for lungs, 3 different drugs are needed to suppress the immune system to lessen the chance of a rejection episode.
  

• At the 5 year mark, statistically, out of the 52% of those still alive, 3 of those patients will experience renal (kidney) failure.  For that reason, many people who get a lung transplant will then also need a kidney transplant.  This is especially true with CF, because we've had a lifetime of strong antibiotics that greatly affect the kidneys.
  

• Because of the drugs used to suppress the immune system, those with transplants are at much higher risk of skin cancer and become extremely light sensitive.  Transplant candidates are required to see a dermatologist every year and need to have a full body check-up prior to transplant to check for anything that could possibly present a problem.  (i.e. suspicious moles will need to be removed).  After transplant it will be much more difficult and possibly life-threatening to take care of these things.
  

• Eyes and teeth will also need to be checked regularly before transplant and any potential problems dealt with.  Things like cataracts and abscesses can also be dramatic problems after transplant.

• A different diet will be prescribed (while still maintaining a CF diet) after transplant.  Things like grapefruit juice will no longer be allowed because of drug interactions.  Also, no homeopathic or "natural" drugs can be taken because they are not required to have their ingredients listed and are not regulated.

Complications and challenges specific to me (not that they're really rare or anything...):

• I have sensitivities (drug effectiveness against infection) to only a few antibiotics that fight the bacterias that grow due to CF.  Because these are the only ones I can use before transplant, these will be the only ones effective after transplant as well.  So, if an infection develops in the sinuses or trachea it will be much harder to fight (especially since I will have no immune system).  Dr. Klesney-Tait said she would talk to Dr. Hornick about holding back at least one of the drugs during admissions before transplant in the hopes that it will be more effective after.
  

• Since I've had kidney issues already (stones and nephropathy) the drugs for anti-rejection may have a greater affect on them and cause more damage.
  

• There is a big question of when to get me on the transplant list.  If I can get 6 or more months out of the lungs I have, then I need to do that, and want to do that.  But you can never really know when is the perfect time...if there is a perfect time.  This is especially difficult because I learned that there is also a chance of sudden death in women with CF.  For this reason, where normally they would list when lung function is around the mid-20% range, they list women at more around the 30% range.  I have remained fairly steady around the mid-30's for a few years, which in all reality, is not that far from 30%.  To put it in raw numbers, at 34% I have a lung function of 0.97 liters.  30% would be about 0.86 liters.  Not a big difference.
  

The news about sudden death in women was probably the hardest part to hear.  All this time I kept thinking that I had another year or two before transplant as long as I stayed in fairly good shape.  Hearing this news hit too close to home.

For several years CFers were not allowed to come anywhere near each other.  They thought that we would pass certain bugs back and forth.  This is still true, but the bad thing is that it cut us off from each other, and really the only people who could really understand what we were going through - our support system.  A couple of years ago, this "rule" was relaxed so that we are now allowed to be within 3 feet of each other, or arms length.  So after several years of CFer relational famine, I started talking to one of the older CFers, Lori (or rather she came to talk to me - I am way to shy to start a conversation with someone else!).  Because she was older, was often in when I was, and we shared a love of Nintendo DS's, we became friends.  She really helped me feel like I wasn't so crazy for a lot of the things I was experiencing.  

Not too long after that I got a phone call that she had died.  It wasn't a "normal" CF death, though.  She had been in the hospital, went home, and a blood vessel burst in her lungs and she died in her husband's arms.  Her PFT's had been in the mid-30% range for a few years and she seemed very stable.  Much like I've been for the last couple of years.  Needless to say, hearing from the doctor that sudden death is much more common in women shook me and Jake.

• The last, and kind of weirdest thing, is that I need to lose weight.  "What?!? A CFer needs to LOSE weight?"  Ya...go figure, huh?  About 6 years ago or so, after 20 some years of constantly struggling to keep my weight up, something happened (insert God here) and I haven't had any trouble with keeping my weight up.  Actually, the majority of the time I'm about 10lbs. over what is considered my "ideal" weight (and really where I feel most comfortable).  So, Dr. Klesney-Tait wants me to lose 5-10lbs.  Honestly, that doesn't sounds too bad to me.  I breathe better without that extra poundage.
  

Those are the statistics and possibilities of everything that can go wrong.  It's extremely overwhelming at first glance.  We got some great advice from a good friend of ours, though.  He told us something like: "Yeah, those are the stats and they look pretty scary.  But we serve a God who doesn't care about statistics.  Throw them out.  If you know this is what God wants you to do, then do it with confidence.".  And you know what?  He's right.  Our God is bigger than all of this.  We may have been surprised by what the doctor said, but God wasn't.  He didn't say "Oh, my, I didn't know that!" and then change His mind about what He was going to do with me.  

The Bible says our days are numbered and He knows when our last day is.  Our responsibility is to follow His lead and go where He says to go even when it's scary.  I'm sure Noah was a little scared when God told him to build an ark when there was no sign of a flood and everyone around him was laughing at him.  Gideon was scared when God told Him to face the Midianites with only 300 men to fight the battle.  And Jesus himself was so scared of the cross that he actually sweat blood.  But the thing all these people have in common is that regardless of the fear, they did what the Father asked them to do.  They did it because they knew who was in charge and that no matter how it looked from their point of view, they knew that if He asked them to go then there was a reason for it and the battle was already won.

I am scared.  I'm scared of what doing this means for me, my husband, my family, and my friends.  I'm scared to the point that I almost can't talk about it without crying.  But more than the fear, I know this is what I've been asked to do.  I said awhile ago that when I made the initial decision to not get a transplant I never really had peace.  I was scared of the surgery and fear took me over.  Now I'm scared, but I have complete peace.  I'm not doing mental flip-flops on the decision.  Finally, I have no doubts that this is what I want to do and that I'm following God's call for my life.  I'm choosing life.

I don't know where this choice to follow will lead, and honestly, I don't know if I'll even make it through the surgery.  I do know that when I wake up I'll be breathing like I never have...breathing in His blessing of having more time here with the ones I love or breathing in the sweet sight of my Savior.  Either way, I can't lose.

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 :)