December 20th....a.k.a. "The talk"

So after all that I had been through since August & all of the talk about lung transplants & trying to decide if it was time to look into it or not, we finally had our "official" mtg w/the CF team about what we should do.  We scheduled this mtg to be after I had a regular CF clinic visit.  Not everyone from the team was at the mtg, but I know that the group as a whole had talked about it extensively before they met w/us & those who were there shared insight from the rest of the team w/us.

I feel the need to preface something here before I start.  I love my CF team in Boise.  Because of them CF clinic & CF care in Idaho has come a long way.  They are all amazing!!! They also each have their own personalities & areas of interest.  While this is good & it helps them to make sure that they are treating the patients as a whole in the best possible way, sometimes it's really annoying.  You know....the GI dr says to do x & the Family Practice dr says to do y & then the Pulmonologist will say to do xyz & you begin to wonder who is right...ahh!  But really it is good.  I also have a good relationship with all of my drs.  We are all open & honest w/each other, even when we have different opinions.  That being said, we are all human & we each perceive things differently.  Not everyone has the same kind of relationship w/their drs like I have w/mine.  That's ok too.  So when I do talk about my drs, I'm only giving my opinion of them & my version of what is going on in my story.  Your experience or opinion might be different than mine.

Ok back to the post...Technically we had "the talk" w/Perry about if I was a good candidate for a transplant a few weeks before this appt.  That first appt/mtg was a hard one for me.  I knew that Curtis, Perry & I were going to talk about transplants that day.  I don't really know what I was expecting "the talk" to be like, but it wasn't the way that it happened.  Perry spent the whole time rattling off statistics about transplant survival rates, the lung allocation score & where I would fall right at that moment & a few other things.  There were lots of statistics & number stuff rattled off.  It was great for Curtis, who had already done his own research about lung transplants, but not so great for me.  All I heard was us talking about me dying.  Seriously.  Perry talked about how CF is progressive & lots of statistics about if I would survive a transplant now compared to my current health & where I would be in 5 yrs for each of them.  Do we go w/what the statistics say, would my quality of life be better or not, or am I sick enough to need the transplant & survive or are we jumping the gun & we do it too early & then I don't do well?  Now I'm thankful for all the research & knowledge Perry has.  The statistic stuff is what helped Curtis the most.  But honestly people....I have CF.  I've lived with it since I was born! I've always known that my disease would gradually progress & eventually take my life.  I've always know that there would come a time when I would need a lung transplant.  I'm not afraid to die!  So why are we dwelling on that part....I know that when it's my time to go then I will go.  I want to have a better quality of life & getting a transplant is the only way to get that.  Aside from all of that, it was good.  We came away from that mtg w/an agreement that Perry would consult w/a few more drs & that we needed to meet at least w/Karen (CF Adult Pulmonlogist) & himself to "get the ball rolling". In the mean-time Curtis & I needed to think about which transplant center we wanted to go to & think about family support, travel, & cost of living.

"The Talk" was actually pretty good.  The "attendees" were: Perry (Pediatric & CF care.....yes, I still see my Pediatrician bcuz until recently CF was considered a childhood disease & a Peds doc was the best one to do managed care for CF), Karen (Adult Pulmonologist), Mary (CF nurse & friend), Curtis & I.  The 5 of us had a great talk.  They each brought up good points.  We talked about what the transplant evaluation process would be like, where we should go, & if it was in fact the right time for us to start down that path.  So here are the answers to some of the things we talked about:

Should we try for a transplant?  Yes! When they look at the formula that is used to come up with the Lung Allocation Score, I still score pretty low.  But when you look at how much lung function I have lost over the last 6 months to a year it is significant & the fact that I've had 2 lung collapses w/in 3 months of each other doesn't help either.  This really points to the fact that I probably just don't have TIME for us to be waiting around trying to decide if I'm sick enough yet.  So we are going for it.

Where should we go? At first we were thinking about going back to the Midwest area because Curtis' sister & her family recently moved to Iowa.  When trying to decide on a center, one of the things to consider is family support.  Most of our family lives in the Boise area, so this didn't help us much.  We talked a lot about different lung transplant centers in the USA.  Every doctor has their own opinion about which hospital is the best.  The top five that they all decided on were Duke University (Durham, NC), Stanford University (Stanford, CA), University of Colorado (Aurora, CO), University of Washington (Seattle, WA) & another one that I can't remember at the moment. In choosing a center we also need to consider the experience of the center w/transplanting people w/CF & if they have a good CF center nearby.  How many transplants do they do in a year? How many people are on the waiting list? What is the survival rate of the transplanted patients for that center?  Then of course there is the travel time to get there (I will have to go back several times a year for check-ups), the cost of living for the area, & previous experience from other patients.  Another point for me to consider was how well the transplant center communicates w/other centers.  We left our mtg not knowing exactly where we were going to go, but knew that my drs would support me 100% where ever I decided to go.  We were going to research more & pray about it & then let them know what we decided.

What is the transplant process like?  Here is what we learned & knew up to this point.  Each transplant center is different.  Some centers will only take results of ALL of the testing for the evaluation from their own center & others will take the latest info of test results that you have had done at your home center & do a few others at their center.  Some have "stronger" rules about who they will accept or not.  The only way for us to know which hospital does what is to contact the hospital & ask questions.  We also found out that a lot of the testing that needs to be done are things that we have already been doing on a regular basis or we have already started to monitor because the CF team knew that my health at some point would progress to needed a transplant. (yes, I have smart drs!)  As soon as we decide where to go my drs would send off my medical history & a referral to the center to get evaluated for a transplant.  After they look at all of that then the center decides if I would be a good candidate for their program, then they schedule a consultation appt to meet w/me & decide if we really understand what is entailed w/getting a transplant, after that if they decide that they want to work w/me then I start the testing & evaluation process.  Yes, it's a complicated mess.....but all worth it in the end!  

So this post is long & packed with information.  If you want to learn more about CF & lung transplants please go to CF Foundation.  This site doesn't have all the answers to questions, but it's a beginning.  As I write more of my story I'll have links on the side of my blog to other websites that also have helpful information.

(side note: I'm now officially done writing about 2011....it only took me till June 2012 to do it...) =)

December in Pictures

A lot of stuff happened in December.  Most of it consisted of me getting out of the hospital, Curtis, Sam & Justin finishing up the fall semester of school, wedding plans & Christmas.  Oh, well there was also the talk of getting a lung transplant, but that is for a different post.  At this point I didn't even want to hear the "H" word again (hosptial).  I wanted to stay as far away from there as I could...at least until after Sam & Justin were married, then I didn't really care what happened as long as I was able to be there & enjoy their big day.  Thankfully everyone managed to survive finals week! Yay!!!

 This was a common sene at our house,

working on homework...or wedding plans

 Justin designed this. I think it turned out really good!

We all had fun stuffing envelops & putting addresses on them....well, it wasn't as fun as it could be, but it was a necessary thing that needed to be done...they sent out around 400 invites!!!  Thank heavens we didn't have to hand write all of those envelops! :)

Christmas day was on a Sunday this year.  It was a very special day for us.  Curtis & I started the day by taking a card & some food to my Dad at work, since he still had to work Christmas day for 12 hrs.  (He is a security guard in Boise).  It was a surprise to Dad so it was exciting to see him light up & realize that he wasn't forgotten about on Christmas day.  After that Curtis' family came to our house & we made traditional Christmas breakfast of potato pancakes, sausage, bacon, eggs, fruit & toast. YUMMY!! We did open a few gifts & we talked to Heather & her family on the phone.  Curtis & I got a new camera (Thanks Mom & Dad Cahoon!) but sadly I couldn't take pictures in the morning because I needed to charge the battery 1st.  I did use it later though. :)   Then Curtis' family came to church with us because Curtis was singing in the ward choir.  (sadly I had to give up choir because I just can't breathe very well...that has been really hard to deal with, I LOVE singing...but I will be back!)  We only had sacrament mtg for church that day since it was Christmas & they wanted us to spend time with our families.  

My family came over around 6 pm on Christmas day & helped finish up preparations for dinner.  Dad came over right after he got off work & then the feast began...baked potato soup w/rolls.  Mmm, mmm, good! :)  During & after dinner we had a great discussion about the true meaning of Christmas, the birth of our Savior Jesus Christ.  What a wonderful blessing He is to all of us! :)

Now for some pictures of the day w/the new camera:  

 Our cute little tree

 These two are amazing!

Can you feel the love there? :)

K-I'm only posting the next couple pictures of Brenda because it is such a great story!  Normally when ever she gets a present that is wrapped she tears through the paper super fast & then moves on to the next gift.  Opening the presents is her FAVORITE part.  We've had to open presents one at a time during Christmas now because she rips through them so fast & then we never get to see her reaction to them.  This year Justin got the privilege, or rather, the challenge, to wrap "the big one" for Brenda.  Boy he did a great job....I think he used a whole roll of packaging tape on the small box.  We let Brenda decide who got to go first & she couldn't wait to find out what was inside "the gift that Justin wrapped".  I just have to say, this is the most fun we have EVER had with Brenda opening presents.  It took her about 20 min to unwrap the box & find out what was inside!!! (we had to cave a little & get the scissors out because she was getting no where...she got 4 small cuts...it probably would have taken her an hour if we didn't "help")  She did a great job at trying & finally succeeding to open her gift.  Justin was so proud of himself when Brenda finally said at the end..."fine, I give up!"  She did get it & boy was she excited!

She sticks her tongue out when she's really focused on something

 She managed to get through several layers of tape & 

wrapping paper, only to find more layers of tape :)

 She has wanted one of these for a long time & we finally caved in & 

gave her one, mostly because we got a really good deal on it. :)

 "YES!!!" She did this several times once she saw what it was.  We also heard for the rest of the night..."Thank you sooo much for my jersey! I love it!"  After all that work, she was exhausted & was very calm the rest of the evening.  :)  Great job Justin!!!

Parley wasn't w/us on Christmas day, but he did come over the next day to get his presents.  I couldn't resist getting this shirt for him, it has Parley written all over it! Love ya Parley! :)

Hospital deja vu

After a busy Thanksgiving Day week, I enjoyed relaxing over the weekend.  After that it was back to our regular routine.  A month previous I had finally convinced Curtis that he needed to have a yearly physical done at the doctor's office so that they could check all of his labs.  He was NOT looking forward to this appointment, especially since we set it up with one of my doctor's, who just happens to be female.  Just so you don't think that he was going to see some off the wall doctor, don't worry he wasn't.  Dr. Elizabeth Rulon is a Family Practice doctor, who also happens to do CF care & OBGYN appointments too.  She is AMAZING!!!

Anyway, the day of his physical was Tuesday November 29th.  That morning I woke up around 5:30 am coughing a lot.  I was also having some pain in my back ribs & was tossing & turning, but I really didn't think much of it since there are often nights/mornings that I have a hard time breathing & therefore sleeping.  I also remember coughing really hard about 8 am & the pain that I had in my back went to the front of my chest.  I finally gave up soon after 8 & decided to just get up for the day & do my morning treatments since I obviously needed to do them.  Doing abuterol & using the Vest didn't really help me to feel better.  I was still struggling to breathe & I still had the pain in my chest, but the pain honestly just felt like I had a rib out (which I've coughed hard enough many times to do & also pull/strain muscles).  My pain was also coming & going in waves.  I decided to still go to my chiropractor appointment for that morning, but had Sam drive me because I wasn't sure about my pain & my breathing.  At my appt. I told my doctor about my pain & he gently worked on my spine & rib cage. Neither one of us thought that I could have a collapsed lung.  I actually felt better after my appt & had Sam take me home.  She dropped me off at the house & then left for school for the day.  10 min after getting home the pain came back & I was struggling a lot more to move & breathe.  After about 15 min I realized that I probably had a collapsed lung, but still wasn't sure because it didn't really feel anything like it did before.  I called Curtis & had him come home early.  I would have called the doctor, but I knew that we were going to be in the office w/in the hour for his appt, so I knew it wasn't going to get me there any faster. Besides, the pain was still coming & going in waves so I still wasn't 100% sure it was a collapse, last time everything hurt & I could hardly move w/out wanting to pass out.  So we went to Curtis' appt & after all of his check-up was done we asked Dr. Rulon to listen to my lungs "just to make sure that they were ok" since I was still struggling to breathe & having pain.  She couldn't hear much air movement on my right side & sent us over for an x-ray.  BIG CLUE right there!  Curtis' appt ended up being a good one for him, but I stole his thunder...I just couldn't let him have the spotlight for the day.  Sorry honey!

So it turns out that I did have another lung collapse, but this time it was about a 50% collapse, where last time it was about 90%.  So x-ray sent me immediately over to the ER where they put me through another horrible chest tube placement and admitted me to the 7th floor of the hospital.  This time I knew what I was getting into with my treatments, so it made it a little easier to deal with.  BUT since it had only been 2 WEEKS since I was last in the hospital & I knew I wasn't coming home until the chest tubes had been out for a few days, I was preparing for a long stay.  That was emotionally hard!  I didn't get crepitus this time around, but I still ended up with 2 chest tubes because I had a pocket of air at the bottom of my lung that wasn't healing.  This time I wasn't nearly in as much pain as far as chest pain goes....but my head was killing me.  I don't know why but this time around I had horrible migraines with this.  They would give me pain medication & my head would still hurt.  I was also sick to my stomach one day & felt horrible because I had thrown up in front of a few ladies from church (I know people understand, but I hate being sick in front of others).  Because of my pain medication I also slept a lot.  I remember one day my Mom had come up to be with me & she finally said she was going to go because she could tell that all I needed to do was sleep.  Thankfully after 5 days of having 2 chest tubes & was able to get them out.  I was also able to go home after being in the hospital for only 8 days.  That was a huge blessing!

During this hospital stay we all started talking more seriously about getting me on the lung transplant list.  I guess once you have a 2nd collapse on the same lung w/in 3 months of each other that it is not good.  (duh!  It also doesn't feel good either!)  Curtis & I started to do our own research, well mostly Curtis.  I don't really care much about the statistics....ok, I do, but for me it's not about the numbers, honestly it comes down to how I feel.  I can either keep feeling lousy & keep watching my body get weaker & weaker, or I can try & get a lung transplant & have a better quality of life.  Besides, my whole life I've been the exception to the rule...I've surpassed all of the statistics & lived longer & had a better quality of life then doctors ever though that I could when I was born.  Medical technology is improving all the time, I've benefited from new medications & new procedures.  Heck, 30 yrs ago lung transplants weren't performed yet.  The 1st successful double lung CF transplant wasn't done until 1989...think about how much better it is now! :)  Anyway, we were still in the beginning stages of looking into this.  Our doctors kept talking about how they needed to meet together & "run the numbers" to see if it would even be a good time to start the process.  We knew at this point that there are several tests that they use to get a lung score for me that determines where I would be at on the list.  We had already started many of those tests so that we had a "base line" for me.  Until we had our meeting with the doctors, we couldn't really go forward with all of this.  So we basically looked at statistics & information about the various CF centers & hospitals in the country that do lung transplants.  We also knew that it there was going to be a waiting period & that I was going to have to relocate to the area where we were going to have the transplant.  Usually they like you to have family support, but most of our family lives in Idaho & the closest centers where they do lung transplants are in Salt Lake City, UT; Denver, CO; & Seattle, WA.  Curtis' sister & family had just moved to Iowa, & they have a transplant hospital that is 90 miles away from their home, so we were kinda thinking about going out that way...but didn't really know where we would go until we met w/the CF team here.  We finally set our meeting for December 20th & put our faith & trust in the Lord that everything would work out the way it was supposed to.  

Good times w/family

I got out of the hospital on November 15th & boy was I glad to be home! It was time to spend some quality time w/Curtis (now that the big project was done), catch up with Sam & Justin's wedding plans, & get ready for a busy Thanksgiving week that was fast approaching.  This year my sister Nicole's birthday was on Thanksgiving Day, so we decided that we would just have a "small" family dinner...meaning my parents & siblings at our house.  Since it's just Curtis' Mom, Dad, & brother Tim at home & they would have just had dinner w/the 3 of them, we invited them over too.  After all, Thanksgiving is about spending time with family & I knew that they would all help w/dinner.  This year we added Justin to the family (since they had just gotten engaged).  Then we ended up with Scott, Trina & Chelsea  Martin & Chelsea's friend June coming to dinner.  (Chelsea is my adopted little sister & she had recently moved up to Idaho from Utah, so we had them over too...after all, it would be another 4 people that could help w/dinner preparation, eating & clean-up).  Anyway, our "small" family dinner ended up being 16 people...but everyone was 20 yrs old or older so it wasn't a lot of work for just 1 person.  Yes, it was probably crazy that we did it at our house so soon after me getting out of the hospital, but I didn't do a thing except give directions & eat food because no one wanted me to over-do it.  We had Parley cook the bird on the grill....YUMMY & of course there was way too much food, but it was a great day! :)

 Getting the bird ready for the grill

 Happy 28th Birthday Nicole!

 The finished product :)

So naturally since Sam & Justin decided that they were going to get married they needed to decide on a date.  This was a little tricky for them because they were both going full time to school, the holidays were coming up, & they were going to be traveling to the Twin Falls, Idaho Temple to be sealed together.  (The Boise LDS Temple closed on July 11, 2011 for renovations/remodeling & will be re-dedicated & open again in about 18 months).  They decided that they were going to get married for Time & All Eternity on January 19th, which also happens to be Samantha's birthday.  (nice for Justin...he better not ever forget that date...)  Samantha also decided to go to the temple to receive her endowment on November 23rd.  (To read more about the Temple & the covenants that we make there please click here) 

November 23rd was a very special day for our family.  Curtis & I were able to drive to Twin Falls w/my Mom, Nicole, Sam & Justin.  We were able to enjoy a wonderful time together inside the Lord's House, as Sam received her endowment. It was such a special day for us.  There were many special memories that were made there that day that are too sacred for me to repeat here.  We all felt the love of the Lord that day & felt extremely blessed to be able to share that together as a family.  We did take pictures outside together afterwards, but I don't have those pictures, Sam does. Sorry.  But here is a beautiful picture of the Twin Falls Temple:  

November 2011 Excitement

November was another eventful month for us.  I'm putting it into 2 posts because so much happened that month....unless I babble on too much, then it might end up being 3 posts....  

I started the month off in the hospital again.  After my lung collapse in August I was having a really hard time getting my lung function tests back up to where they were before (my baseline before was around 34-37% FEV1 & afterwards I couldn't get it above 30%).  Myself & the CF team were starting to think a little more about the possibility of me getting a lung transplant w/in the next couple of years.  It was also hard for them to say whether it was time or not to look into it because you need to have a baseline FEV1 & we didn't really know what mine was.  We decided that since I still didn't feel the greatest & we didn't really get to do an aggressive CF exacerbation "tune-up" like we had planned in August, that I should go into the hospital for 2 weeks & get the aggressive medical treatment that I needed.  The other purpose of the visit was to establish what my true FEV1 level was.  I ended up going into the hospital on Halloween, which wasn't a big deal to me.  The only bummer was that I forgot to bring the candy we had a home & for some reason no one had any candy that day at the hospital. :(

This was a visit full of emotional ups & downs.  Mostly just for me personally.  Part of the ups & downs was due to Curtis being extremely busy with work & school.  I failed to mention in previous posts that after Curtis got released as Scout Master back in August that he then decided to take a class down at BSU.  It was a power electronics class that he had been wanting to take & the time worked for his schedule & it was his favorite professor that was teaching it & since he didn't have a major scout calling he could devote time to the class & still have time for family.  Curtis had passed the engineering licensure exam the year before & in order to keep his license he needs to have 30 professional development hrs every couple of years.  By Curtis taking this class it would fulfill those requirements for a couple more years.  Of course after he signed up for the class my lung collapsed...but we both decided that he should still continue with the class, so he started his class 2 nights a week, a week after my collapse.  That was a busy time for us....well at least for Curtis.  He had a big project for the class that was due the beginning of November.  He did work on it off & on before it was due, but still had a majority of it to do in the final week before it was due.  Curtis ended up taking about 3-4 days off of work so that he could work on his project, he spent a few late nights at the engineering bldg w/some of his classmates, got a last minute 2 day extension on the project & FINALLY finished it just a few hrs before it was due.  This whole project was hard for me because I couldn't help him on it & I was sacrificing my time with him by encouraging him to work on it (or go home & get some sleep) so that then when it was done we could enjoy our time together.  

Some other things that made this stay emotional was the fact that Sam & Justin got engaged & she took Mom, Nicole, Brenda, & Justin's Mom, sister, & grandma to go & pick out her wedding dress.  Don't get me wrong...I was EXTREMELY HAPPY that she got engaged.  I knew it was coming.  I was also the 1st one to know about it after he asked her because they came up to visit me & to show me the ring.  It was just hard because she is my sister & one of my best friends & I was looking forward to doing all of the "wedding planning & excitement" with her & I was missing it because I was in the hospital. (She was able to get a super good deal on her dress the 1st day that she went looking, which is the only reason why she bought it the day she did...so I don't blame her for not waiting for me)  I also missed Brenda's birthday that week & besides Sam, Brenda is the one that LOVES her birthday the most & it still really means something to her, it's exciting & fun. Brenda was pretty sad that I couldn't do something fun with her for her birthday, but we did get to do something after I got out of the hospital, so she was ok with it. :)

I was also an emotional roller coaster that week because 1-it was that time of the month (probably TMI, but honestly sometimes it explains a lot) & 2-I had to stop taking my Celexa because of one of the antibiotics that I was on (bad side effects if taken together).  I started to take Celexa back in June 2011.  I had been fighting depression for over a year & I finally had decided to do something about it.  Depression is a normal thing for someone that has a chronic disease & who experience major changes in their daily living (like no oxygen during the day to wearing it 24/7, just one example).  Thankfully just a small dose was all I needed to help boost my mentality & energy.  When I went off of my medicine for those 2 weeks (& it could have just been bad timing by us) I would be fine & happy one minute, & the next one I would be annoyed or upset & crying the next minute.  Depending on who was around I was able to hide the fact that I was struggling. Thankfully I had a few angels in my life that week who let me cry, laugh, talk & cry some more & knew just what to say to help me. (a Dr, nurse, RT, friend from church, & my BFF!) This was the same week that it really hit me that we needed to start looking into getting a lung transplant.  Like I said earlier, at this time the CF team was still split on whether we really needed to start looking into getting a lung transplant or not.  I LOVE my Boise CF team, they are amazing! But they are also human & have different personalities & approaches to medicine (GI doc compare to family medicine doc)....which is good because one may find something that the other misses, but sometimes it's hard to know which one to listen to when they all have different approaches & opinions.  Thankfully I have a good relationship with all of them & I'm not afraid to ask questions & advocate for my own health care & they are not afraid of talking to me or listening to me or working with me to find the best solution.  Anyway, the whole reason behind mentioning the Celexa/depression thing was because it was the first time in a while that I had cried & realized just how bad my CF was & that I might not actually live another 3-5 yrs.  Thankfully we have the downs so that we can enjoy & remember the ups even more & learn from them. :)

Ok, enough of the depressing part of it.  On to the emotional ups!  Of course the first one was Sam & Justin getting engaged.  Another one was having one of my good CF friends in the hospital room right next door to me during 1/2 of my stay.  Christian & I knew each other from CF camp years ago.  When he was on his mission I started school at BSU, & I met Kendra & became good friends with her.  They met each other after his mission & soon got married.  They are an amazing couple! They always make me laugh! :)  We spent many hours that week talking with each other about everything from hospital food to football to spiritual topics & more.  We even had the radio on out in the area outside or rooms so that we could both listen to the BSU football game that was only on the radio (unless you had a special cable channel or had a ticket to the game that was just a mile away from the hospital...really annoying!).  It really helps to have CF friends.  Our disease is very similar but VERY different at the same time.  It's so nice to talk to them & I don't even have to explain anything because I already know that they "get it", all of the dr visits, medication, insurance stuff, medical mysteries & more...they understand all of it.  Anyway, it was a lot of fun that week & they helped me while Curtis was so busy working on his project for school.  I love the Hooper's! :)  Among some other emotional ups for me was that I was able to finish my cross stitch of Sunshine Bear (or is it Funshine Bear...can't remember).  I was making it for Shasta.  She then surprised me by coming & visiting with me in the hospital for 4-5 hrs. Shasta lives in Mountain Home, which is about an hour away from Boise, & she stayed until after 12 am!  It was a blast! We laughed, we cried, & we laughed some more.  Seriously, you get the two of us together & we can't stop laughing & we are loud.  Some of the nurses & RTs thought that I was having a party in my room & couldn't believe that it was just the two of us making all that noise. :) Yes, laughter is good for the soul!!! I also have to say that I do LOVE my husband & he is my BEST friend, but sometimes a girl just needs to have another girl to talk to, to make everything better & Shasta is the one! We often refer to each other as our twin because we are so much alike.  Even though we didn't get to be blood related sisters, we are forever sisters & friends & we're thankful that Heavenly Father put us together as friends.  Other emotional ups included visiting with family & friends from church & working with & getting to know all of the many nurses, RTs, & CNAs.  They are amazing!!!!

So overall the hospital stay was a success.  I started to feel a little better & we were able to determine that my baseline FEV1 was around 30%.  14 days is a long time to spend in the hospital & I was ready to get out & get through the holidays & on to Sam & Justin's wedding.  But first some pictures:   

The Ring!!! Beautiful!!!

An "Eddible Arrangement" that was VERY YUMMY!!

Thank you Christian & Kendra! :) 

The finished Care Bare project. I love it!

September & October 2011

Ok, so we are going to have to back up a little bit on the happenings in my family life.  JUSTIN THIS IS FOR YOU! :)  Clear back on July 1st (or 2nd...) Samantha had gone on a date with this guy in her Young Single Adult Ward...his name is Justin Mello.  I know I've heard the story several times, but I don't remember all of the details, like when the first date actually was or other things.   Soon after that first date they started seriously dating each other.  Sam met Justin's family a few days after the first date.  Justin wanted to come over & met our family but Sam wasn't going to give into that just yet.  Well she did give in on our Dad's birthday.  Justin had dinner w/our immediate family during Dad's family birthday dinner.  Justin bought shot gun shells for him because he wanted to impress him.  He did a great job of that, that was the perfect gift!!!  Anyway, I could tell that Justin was smitten right from the start.  Sam was too, she just didn't know it yet.  Justin is hard to get to know.  He is VERY quiet (& MELLO) & the complete opposite of Sam.  I wasn't so sure about him at first.  Of course I probably wasn't easy on him anyway.  I wanted to make sure that he was right for my sister & that he knew & understood what CF really is all about.  He seemed to take it all rather well. When I was in the hospital in August (& was "fat Sara"), Justin insisted that he wanted to go with Sam up to see me & visit me. After that hospital stay & all the teasing & joking that I put him through he was still around so then I knew that I would like him & that he would eventually be a part of our family.  During September & October Sam & Justin were at our house making dinner almost every Wednesday night & maybe one other night as well. They would also work on homework together at our house.  (yuck!)  It was during this time that Curtis & I were making bets on how long it would take them before they got engaged.  :)  But that story is for another post.  So Justin, you should now feel honored because I have included you on my blog.  You may not like the pictures that I picked out to put up here, but since they are also on FB I figured you didn't mind. :)

Ah...Justin Mello...

The cute couple again. :)

Justin, Sam & Katy rockin the 80's!

I was pretty wiped out during the months of September & October.  Having your lung collapse takes a lot out of you!!! I do have to back up a little bit here w/some health info...Earlier in the year we had diagnosed me w/having pulmonary hypertension, & I was starting to really have a lot of problems with this, especially after my lung collapse.  According to the Mayo clinic, pulmonary hypertension is: a type of high blood pressure that affects the arteries in the lungs and the right side of your heart. Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries, and capillaries become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, and raises pressure within your lungs' arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs.  They had first diagnosed this back in February by doing an ECCO on my heart (or an ultrasound) that included a "bubble study", where they put small tiny bubbles into my vein & watched how they moved through my heart.  It was pretty cool to watch. :)  The doctors wanted to do this test because of my health at the time & they knew at some point in the next couple of years we would probably start talking about a lung transplant.  This is one of the tests that they have to have done, so they figured they might as well have a baseline test done before we even got to that point.  The treatment for pulmonary hypertension is pretty simple...turn up your oxygen when you are moving/active. So for me I was on 2 liters continually & was suppose to turn it up to 4 liters when moving around.  (there is medication that you can take that can help it, but they haven't really tried it much with CF patients, but other pulmonary hypertension patients use it a lot, it's called Viagra, & you may laugh, (I did) but the actual intention & purpose of the drug was to treat pulmonary hypertension...they found out about the side effects of it later).  I'll admit that at first I didn't think I needed to turn up my O2 & didn't always turn it up to 4....but by summer I could tell you exactly what it was that would exhaust me & I would turn it up automatically.  When I was in the hospital in August we were going to do the next test that they use to help diagnose pulmonary hypertension...a right heart catheterization, but after my lung collapsed we put that test off.  So I had it done in October when I was doing a little better.  This test also helped to give the doctors a baseline for the day that I may start the lung transplant process.  It wasn't a horrible procedure. It's almost they same exact procedure that they use to stop bleeding in my lungs, so it honestly didn't phase me. There were a bunch of numbers, or pressure readings, that were taken & I don't remember what they were or if they were good or bad except that it showed that I have mild to moderate pulmonary hypertension.


We had a family BBQ over at Grandma & Grandpa Ward's house in September.  They wanted to celebrate me getting out of the hospital & they also wanted to meet Justin.  Parley also wanted to have the BBQ because he had cut up a few cord of wood for Grandpa for the winter & he wanted help unloading all of it.  It was a very memorable event that had a few embarrassing or awkward moments for Justin....but I'll keep them between us & not share them here.  :)  I did want to share some pictures of the family. :)
  

trying to figure out where they should stack the rest of the wood

3 amigas! 

Love Grandma's beautiful Smile! :)

Mary, Blaine & Sam

Chatting after the wood was done being stacked

I love my Grandpa Ward!!!

Gotta love family!

A few days before BSU had their 1st home game of the 2011 season (that was on Sept. 24th) we had been given tickets from St. Luke's hospital to go & attend the game.  (Several departments were given a certain number of tickets to give to some of their patients).  Of course I HAD to say YES to the tickets because it is actually kinda hard to get BSU football tickets, especially a few days before the 1st home game of the season.  For me it was one of the best days to go.  I hate being cold at the games, but the temperature for this game was actually in the 80s or 90s & then cooled off after half time.  We didn't get to pick where we sat in the stadium because we had north end zone tickets, which are open seating.  There are some crazy fans that sit in the end zones....but it was a lot of fun!  You really have to go to a game in the stadium, see the fans, watch the players & see the blue turf.  It's amazing!!! (of course I could be a little bias since BSU is my & Curtis' alma mater...)  So here are pictures of the BSU vs Toledo 2011 game...

Blue Thunder Marching Band & Maneline Dancers 

during the Star Spangled Banner

Check out the cool color scheme

Watching the huddle

Can you see the players?

Go Broncos!!!!

BSU 41  Toledo 21 

Pneumothorax

The whole month of August 2011 is a blurr to me.  Curtis & I went on vacation from July 28th until August 6th.  We went to Utah to visit family & friends in Salt Lake & St. George (see previous posts).  It was hot, but nice to spend time together & see everyone.  When we got home I wasn't feeling good & spend a week at home trying to "recover" from our vacation, I may have gone on oral antibiotics that week, but can’t remember now.  We celebrated our 6th Anniversary on August 12^th.  We didn’t do much since I wasn’t feeling good, but I do remember that we had Corino’s take-out.  Sunday August 14^th was a big day for us….Curtis was released as the Scout Master at church!  The whole 6 yrs we have been married, he has been either the Assistant Scout Master or the Scout Master.  But don’t worry; he is still working in scouting, but this time as the Scout Committee Chairman.  So he still gets to do stuff with the scouts, but doesn’t have to go camping every month or go to the weekly activities.  Honestly this couldn’t have come at a better time.

After coming home from vacation we had decided that maybe it was time for me to go to the hospital again.  The last admission that I had was back in January & February of 2010.  This time though we wanted to get insurance approval to go to St. Luke’s hospital because they are the ones that have the Idaho CF center & are more comfortable caring for CF patients. (our insurance is contracted w/St. Al’s…& staying there is tough since my primary doctors are w/Luke’s).  So I contacted our amazing CF clinic nurse Mary & talked to Perry about it, since they had to be the ones to write a letter to get insurance to pay for it.  I did have CF clinic on Tuesday August 16^th.  They were still waiting for the final ok from insurance, but were 99% sure that we had it.  We decide that it would be easier to go into the hospital the next morning.  Then they could get all the paper work/orders done, we would have insurance approval, & I could pack my bags & bring what I need.     

Anyway, the night before I was suppose to go to the hospital my lung collapsed simply from a regular cough while we were at home.  Curtis & I were sitting on the couch trying to decide what to have for dinner & I started coughing. Nothing new.  After I was done coughing I had a pain on my right side.  Again nothing new, especially since I cough so hard, I often can pull a muscle or throw my back out.  After about 20 seconds Curtis looked over at me & asked if I was ok. By this point I felt like someone was stabbing me in the back by my shoulder blade & felt like someone was sitting on my chest in the front.  I also could not get a deep breath in.  We turned up my O2 & I did an abulterol nebulizer treatment.  At the same time as this Curtis was googling chest pain & the symptoms that I had.  We both realized at the same time w/in 10 min that I probably had a collapsed lung.  Curtis wanted to call the ambulance, but I told him it would be faster if he just drove me to the ER.  When I stood up I about passed out because of all the pain! Curtis gave me a quick priesthood blessing & we were on our way. We went on faith & went to St. Luke’s downtown.

It’s amazing how fast you can get into the ER when you come in & can’t breathe! They took me right back & w/in 20 min of arriving it was determined that I for sure had a complete right lung collapse.  Then they placed a chest tube into me to start removing the air & fluid that had filled up the cavity where my inflated lung should have been.  I honestly don't know how I was able to make it through all of that.  Getting a chest tube placed was soooo painful & such a horrible experience.  (They don’t give you any medicine & they stab you w/a huge needle in-between your ribs & into your chest cavity.  Then they pass a tube through it that stays.  The tube is then hooked up to suction, or a negative pressure vacuum.  This then helps remove the air/fluid from the chest cavity & it expands your lung….yes, it is just as horrible as it sounds, sorry for the details if you have a week stomach).  While I was experiencing all of this, if I thought about it too deeply it scared me to death!  BUT I was able to remain fairly calm during everything & the Lord was there helping me.  I know that I had angels in the room with me!  

This is what my collapsed lung looks like.  The triangular drum in my chest is my port that we use for IVs.  All of the black around the right lung is NOT suppose to be there  Yes, my lungs have a lot of scar tissue in them.  (one of my amazing RTs showed me my xrays & took the picture for me)

About 6 hrs after I got my chest tube place, in the wee hrs of the morning (4 am…) I had an air leak from my chest tube & my soft tissue/skin on my body swelled up.  I thought that my lung was collapsing all over again.  It hurt sooo bad!!! It started in my right chest & shoulder area & spread pretty quickly through the rest of my body, except my legs.  My arm looked like a Poppeye arm after he eats spinach, my cheeks looked like golf balls were in them & I had a double chin.  The air leak that I had is called crepitus.  The medical definition is:  Crepitus: A clinical sign in medicine that is characterized by a peculiar crackling, crinkly, or grating feeling or sound under the skin, around the lungs, or in the joints. Crepitus in soft tissues is often due to gas, most often air, that has penetrated and infiltrated an area where it should not normally be (for example, in the soft tissues beneath the skin). Crepitus in a joint can indicate cartilage wear in the joint space.   When you touched my skin you could feel the “rice crispies” or “bubble wrap popping” under my skin.  It was extremely painful & scary. So, then I had to get a second chest tube placed.  (Thankfully I was given medicine this time & so it wasn’t so traumatic). That first 24 hrs were the scariest that I have ever had! 

 This is the one and only time I will be “fat Sara”

The first couple of days w/two chest tubes & crepitus were horrible.  I was on constant pain medication & could only move enough (with help) to get out of bed, turn & sit to use the bedside commode. I also couldn’t take a shower while I had chest tubes.  Thankfully each day was a little better.  By day 5 or 6 I could get to the bathroom (with help) & use the toilet in private.  While I was hooked up to the chest tubes I was on full suction.  So I had 2 boxes that only had about 12 ft of tubing total for me to be able to move around the room with.  Man, I had so many tubes & cords during that week…O2 tube, 2 chest tubes, IV line, 24 hr heart monitor on (w/5 wires that were stuck to me all the time), my feeding tube at night, & I’m sure there was some other tube/cord that I am missing.  So yes, I only had about 12 ft. of room to move around with.  By day 10 I was starting to really wish that I could take a real shower (instead of a bed bath) & wanted to even just go out & walk the halls.  But I couldn’t be off of suction.  Finally on day 12 they pulled the bottom chest tube out & the doctor FINALLY gave me permission to go out and walk the halls and just be on water seal (meaning no more vacuum suction & being stuck to the wall).  I LOVED being able to go out of my room!!!  On day 13 they pulled out the last chest tube.  I had to stay ibin the hospital a few more days after that before I was released to go home.  By this time I only had one small area of crepitus & I wasn’t needed any more pain medication.  Yay!!!

Boxes that collected all of the fluid that the chest tubes were pulling out from 

my chest cavity & helping to re-inflate my lung.  These were part of the 

tubing/12 ft of  leeway that I had for 12 days

Lungs 1 week after having chest tubes, there was still an area on the top right lung that wasn't completely healed, but you can tell it's MUCH better than before! 

Finally being able to go more than 12 ft & getting out of 

my hospital room for some new scenery!

My hospital stay was full of scary moments but there were so many blessings. During that time I was blessed to have my lungs get better a little bit each day.  I was able to get lots of rest & lots of good therapy for my lungs to heal.  Curtis was also blessed to be able to handle all of this very well.  He was able to keep up with his busy work schedule while also getting to spend time with me each day.  During my whole hospital stay, but especially at the beginning of it, I often thought of my Savior Jesus Christ.  I can’t imagine that the pain that He suffered.  His pain was even MORE than what I was currently experiencing. I still don’t completely understand the Atonement, but I did gain a small glimpse into what Christ has done for us when He took on himself all of our pain (physically/emotionally/spiritually) that we experience.  I have gained a stronger testimony that the Lord really does KNOW who WE are & that HE LOVES US.   All of my needs were met through other people being there when I needed them most...doctors, nurses, & others.  Each day I had small tender mercies from the Lord.  Those tender mercies are what helped me get through all of this.  I'm soooo thankful for them, for the power of prayer & for the knowledge that I have that I am a Child of God & that He loves me & is helping me every step of the way.

July 2011

Our Utah vacation was the last week of July & the first week of August, so that is why it got it's own post.  But there were some other fun things that happened in July that I wanted to document (or show pictures of). After this post, then we'll get to all the exciting medical stuff that has been going on with me, along with the other family happenings that have been going on at the same time.

July 4th weekend we got to meet our little niece Annie Kate Shores.  Heather & Ben decided to have her baby blessing up in Idaho instead of at home in Utah, so that more family could attend the blessing.  It was a fun & busy weekend full of family fun.  The cutest picture of all weekend was this one:  

Snuggling up with Uncle Curtis!!!

I LOVE THIS PICTURE!!

Another fun even that we went to that has no real significance, but was a blast, was the annual Overland Ward Water Bottle Rocket activity.  We had a BBQ in the park & everyone was invited to make a rocket.  Since Curtis is an engineer, he was SUPER excited about this activity.  I think he spent most of a day designing & building this rocket.  He named it the "Cahoon Duct Tape Express".  It didn't do too bad for it's first & only launch.  The best part of the whole activity was watching the kids & how excited they were.  Right after we were married, this was the 1st family ward activity that we attended, so we look forward to it every year.  And every year it gets better & better. :)

   

 The rocket

 Loading...

 3, 2, 1....

Another day that I wanted to document was getting to spend a few hours with my friend Brandis & her family.  Brandis & I know each other from our days growing up in Kuna & going to school together.  I ran (well, sort of ran...) cross country with her my senior year.  That is the one & only time I did.  I only completed 1 race that season & did half of another one.  I was slow & I admit, I was mostly there to have more time to spend with my friends. One of my good friends from that time was Tracy, Brandis' younger sister. Tracy was a great example to me & a great friend at a time when I was learning that I could push myself.  Her & I were often the last to finish running at practice & we had many good talks while we were suppose to be running out in the middle of nowhere.  Unfortunately Tracy was in an auto accident & her sweet spirit was called back home.  I have often thought about her since then & have loved the times when I've seen the Edwards family out in the community. Well, after high school & several yrs of not really keeping in touch with anyone....along comes Facebook.....& along comes me connecting up with the Edwards again.  Now Brandis lives in Arizona, so it's nice to have FB, or email, or texting to keep up with her.  (for the record, I did find out this year that Brandis & I are actually the same age....I just happen to have a March b-day & she has one in December, so unfortunately she was a year behind me in school)

At the time that we became "friends" in FB, I had started reading Brandis' blog.  I saw her small family growing & saw pictures & read stories about all of them.  About the time Raya was born, I was trying to make the decision about getting a feeding tube. A few months after Raya was born, she needed a feeding tube.  She started with an NG tube.  Then I got my G tube placed about the time that they were thinking of switching Raya to a G tube.  It was at this time that Brandis & I really connected.  Even though I'm 20+ yrs older than Raya, we were still going through the same thing.  I had the patient perspective & Brandis had the caregiver perspective.  We shared a lot together about things that worked or didn't work etc.  Then as Raya's health problems grew, I started blog-stocking her blog about Raya & her tube.  You can find her story here. Through all of my G tube problems & medical supplies & other stuff relating to tube feeding, I know that at least one person truly understood what I was going through.  I didn't have to try to make anyone understand me bcuz I knew that she got it.   Brandis has a strong testimony & is a wonderful friend & mother.  She is a great example to me & I want to be like her when I grow up. :)  When Brandis came up to visit her family last summer, we set up a time in her busy schedule to meet up. It was fun seeing all of Brandis' family again & also meeting her kids.  They are adorable.  So even though we don't have a lot of pictures of our time together, we did get this one & I love it!

Thank You Brandis & Raya for all that you do for me!!!