Trikafta Update

Hello, hello!  I need to write a post on our vacation (quite possibly the most amazing vacation I've ever been on!!).  But that will have to wait until I have more time.

For now, a quick Trikafta update will have to suffice.  I (think) I mentioned previously that we were a bit concerned about the effects of Trikafta on A's liver (actually, it was probably just myself who was concerned, but anyway...).  A's liver enzymes were slightly elevated and had been for a year or so.  He had the necessary blood work done before starting the drug and has had two appointments with a hepatologist since then.  Good news!  A's liver enzyme levels actually decreased since starting Trikafta.  A has no scarring and the test results were "reassuring".  He has mild fat levels that the doctor was not concerned about.  Such a relief and we're so thankful for this drug!!

Trikafta Update

Just before Christmas, I shared that A finally got insurance approval for Trikafta.  It was a frustrating month as A followed up with his clinic and Vertex.  He was initially denied approval – twice.  When the approval finally came, I was so excited, but also nervous.  What if it didn’t work for him?  What if he experienced adverse reactions and had to stop taking it?  What if it affected his liver function?

The approval also came after a really disappointing clinic visit.  I shared a bit here.  In a nutshell, A had his lowest pft results ever.  I was really scared and upset.  A needed a new nebulizer and he was prescribed an oral antibiotic.  He was also to start on Cayston (earlier than planned).  The nurse practitioner wanted to admit A, but he declined thinking that once he had a new nebulizer and the antibiotics, things would improve.  He also wasn't feeling particularly bad despite the pft results.

A started on Trikafta just before Christmas – 12/21 to be exact.  He wanted to wait until the weekend because we’d heard so much about the “purge” so many CFers have experienced - lots of productive coughing, headaches, fatigue, body aches, etc.  We were prepared for the worst.  I think I asked A about 50 times over the course of that Saturday how he was feeling.  He kept telling me “fine”, that he didn’t feel much of a difference.  Hmmm.  The following day, we again prepared for the worst.  Again, A said maybe he felt like he could breathe a bit better, but for the most part, he didn’t feel much different.  Day after day I’d ask and day after day, A felt fine.  I wasn't convinced the Trikafta was even working.

On 12/23, A started Winter Break.  The timing couldn’t have been better.  We all needed some down time after a few really busy weeks.  We slept in, spent time with family, and ate well.  We also went on a few really long family walks.  We often walked for an hour in chilly weather and I noticed A didn’t seem tired – at all.  I also noticed he was coughing less (not at all). 

Because of the low pft results, A had a follow up appointment 3 weeks after his clinic appointment (2.5 weeks after starting Trikafta).  If his numbers didn’t improve, he would likely be admitted.  He seemed to be feeling better, he was eating well, and he seemed to have energy, but I was still nervous about the appointment.  On the day of, I asked A if he was nervous.  He responded with a flat out “no”.

A texted me a photo of his results.  The results page contained his numbers for the past 11 years.  On first glance, I could see the numbers were good and I was so relieved.  Upon further examination, I realized that these were his highest numbers in 4 years!!  And with a 10% improvement over his results 2.5 weeks ago, this was the biggest jump in pft percentage that he’d experienced in 11 years!! Fortunately, A's pft numbers are typically very stable.  He may go up or down 1 to 2 percentage points from clinic visit to clinic visit, but for the most part, they're stable.  This is also why there was concern when he was down 5% at his last clinic appointment.  10 percent is huge for him.  I’m so grateful.  And I’m still cautiously optimistic.  A meets with a hepatologist later this month.  I’m still worried about his liver enzyme levels and the effects of Trikafta on his liver.  But for now, I’m incredibly thankful.  Approval came just when we really needed it!

One other point of note, for the first time in a REALLY long time, A could not provide a sputum sample.  I've known A for over 16 years and he's always been able to cough something.  This time, the NP had to swab the back of his throat!  I'm pretty amazed.

Trikafta Update

It's been a week... a very challenging week.  One that consisted of a pretty terrible clinic visit for A (more on that in a bit), Charlie ruining the quilt on my bed (thanks to the boys letting him in our bedroom while I was showering), the boys accidentally recycling the pricey Christmas gift I purchased for W's teacher, my company announcing they were moving further away (only about 15-20 minutes, but that means an extra 30-40 minutes of driving per day), and I was supposed to have Friday off, but a surprise email from the FDA on Friday morning meant I worked all day and through the weekend (and will work tomorrow).  UGH.  I think I was near tears more than once.

But one really great thing happened....

On Tuesday, A had clinic.  He picked me up for lunch and when I asked how it went he responded with "ehhh...".  I knew that wasn't good.  I asked what happened, what was wrong?  Apparently A's lung function was the lowest it has ever been.  Wait, what?  A had a cold, but didn't seem to be affected by it.  He seemed normal for the most part.  I've seen him at low points and expected that his clinic appointments wouldn't be good, but this one was a bit of a surprise.  A admitted that he'd run out of one antibiotic and his nebulizer wasn't working.  He didn't think it would make much of a difference to wait for clinic to get replacements and he was wrong.  I was really upset and told him his health had to be his first priority.  No more waiting.  The NP suggested a hospital admission and A declined.  He thought his PFT scores would improve once he had his antibiotic and working nebulizer.  He was also prescribed an additional antibiotic.

I was also really angry.  We've been fighting with insurance to get approval for Trikafta for a month.  Maybe if A was on it, he wouldn't have experienced such a decline.

I arrived home from work feeling pretty defeated.  And then A held out his phone and played a message he'd received just before I got home.  Insurance FINALLY approved Trikafta!!!!  I was so excited!!

We're both hopeful the drug will have a positive impact, but also cautious.  We found out that A's liver enzymes are slightly elevated so another concern.  Things can never be easy, but we're thankful that A is able to try this new drug.

CF Blogs

My blog was featured on the My Therapy App site along with a few other CF blogs - most of which I already follow.  I love the summary that was written.  Check it out!  And follow the other fabulous blogs highlighted! :)

https://www.mytherapyapp.com/blog/top-cystic-fibrosis-bloggers

CF Clinic

A had clinic on Tuesday and all went well.  I was worried his lung function may be down since he doesn’t have to walk Addie dog anymore and he hasn’t been on the treadmill lately.  He has stayed active this summer and often goes on walks with the boys so that helps.  He didn’t receive a results print out, but was told his lung function was up – always the best news!!  I’ve been pushing him to ask about the Monarch or Afflovest.  He did and was told something about the manufacturer not working with his current vest provider.  It didn’t make any sense to me and I think the portability of both vests would be a game changer for him.  He could essentially do his vest while making dinner or playing with the boys.  Compliance would be so much easier to achieve.  I’ll keep pushing.

So all in all a good visit and I’m very relieved – especially as everyone is heading back to school, which means germs, germs, and more germs.

Also!!  On the topic of CF, I received an email from Christa a month or so ago.  Hi, Christa!  She is a CFer and asked that I mention her Instagram account.  I’m sorry that it took me so long, but you can follow her at @cfwithgrace.

Finally, I came across these tees at Jumping Jack Apparel and fell in love.  I ordered one for the boys.  A portion of the proceeds benefit Caleigh, a CFer who just had her second lung transplant.  I follow her on Instagram (@Fight2Breathe) and she’s incredibly inspirational and positive about everything she’s experienced.  Definitely check out Christa and Caleigh!!

(Not) Sharing CF

A's most recent blog post explains why he doesn't tell people that he has CF.  When he first told me about the disease, I'll admit that I didn't understand why he never discussed it or didn't tell more people about his condition.  I remember questioning why he didn't want more people to be aware of the disease itself and the need for further research, better treatments, and a cure.  Now that I've known him for 14 years (holy moly!!), I get it.  And as someone who's very private (with the exception of having a blog... I know, it doesn't really make sense...), I get it even more.  Anyway, this is one of my favorite posts of his (though he doesn't have too many yet)... keep them coming, A!!

CF Clinic

Wanted to pop in and provide a really quick update on A’s appointment yesterday.  I know he was really concerned going into the appointment and even thinking about a hospital admission.  To be clear, he didn’t think he needed to be admitted.  He wasn’t feeling bad, but he knew the previous virus he caught, was a bad one and he could feel it affecting his lungs.  Antibiotics helped immensely and he was relatively back to normal when he started feeling another cold coming on over the weekend.  I know that it’s so dejecting to catch a cold right before clinic and A was worried his doctors might overreact before giving him a chance to fight the virus.  With all that said, there was good news and bad news from the appointment.  Bad news first:  A’s weight was significantly down.  The lowest it’s been in years.  Down 9lbs from his highest weight ever last appointment.  I was really surprised.  I guess seeing him every day, I didn’t realize he had lost so much weight over the course of three months.  CFers know that decreased weight often results in a decrease in lung function so that was very concerning.  Now the good news: A’s lung function was only slightly down.  His doctor even said it was within the range of error of the spirometer equipment so wouldn’t even be considered down.  Huge relief.  A is to continue weighing himself and increase his caloric intake and if he doesn’t see an increase in the next few weeks, he’s supposed to call his doctors.  Otherwise, he won’t have to go back for another 3 months.  I have to give A major props because for the past month, he’s been doubling his vest time and also going for long walks.  I really believe that these activities kept his lung function up and if he can continue these and increase his caloric intake, I think his lung function will improve more.  We’re also going to try yoga, which makes me laugh just typing that, but apparently yoga is especially helpful for CFers.

Unfortunately, the appointment was with the doctor neither of us is very fond of.  Just when I was thinking she wasn’t super annoying this time around, she made the following comment (I’m paraphrasing…): “The flu can be extremely detrimental to people with CF because of the bacteria in their lungs and many times they can’t recover.  So good luck.”  WTF?!?  I’m not sure why we were talking about the flu.  A hasn’t been tested for it or shown signs of having the flu.  And good luck?!?  Was she trying to make a joke?  I have no idea, but what kind of doctor gives a “good luck!” as their only advice?!?

Trip Recap and a Health Update

We’re back from our trip.  It was absolutely wonderful.  So nice to get away after A’s illness and the stresses of buying a house.  It was exactly what I needed.  And it was great to see family, spend time in the pool, eat amazing meals, and visit Washington D.C.  W was also perfect.  He was great on the plane and throughout the entire trip.

 

We arrived late Monday (6/30).  My uncle had prepared a crab quiche and beer soaked bratwurst for the non-seafood eaters.  He is an amazing cook and I always look forward to his creations.  I’m not a seafood fan, but felt I had to try the crab quiche since I was in Maryland. J  It was yummy.  There were also several delicious salads.  We caught up with family and got settled in.

 

Tuesday, W, A, and I headed to Washington D.C.  D.C. is about an hour from where my aunt lives and it’s probably my favorite big city.  I love all the monuments and buildings.  It was a long car ride for W, but he did well.  We decided to check out a couple of the museums.  First stop was the Air and Space museum.  I thought W would be more impressed, but he wasn’t really into the airplanes and rockets.  For me, the museum was a bit boring. :\  Not my thing.  Then we headed over to the American History museum.  About a 15 minute walk in the heat.  I liked this museum much better.  I absolutely LOVED seeing all the dresses worn by first ladies.  After that, we headed back to my aunt’s house and enjoyed some marinated chicken my uncle prepared along with several sides… mmm.

Wednesday, W, A, my mom, and I headed to a local petting farm.  It was adorable, but that day was so freaking hot.  A had to sit in the shade while we visited the animals.  W was a sweaty mess.  We thought the morning wouldn’t be so hot.  Wrong.  We stayed for a short time – long enough to see a lamb, piglets, horses, cows, ducklings, kittens, and W played in the corn.  When we left around noon, the heat index was 103.  Holy moly.  We spent some time in the pool.  That night, my uncle made some awesome hamburgers.  These weren’t your typical burgers.  He had purchased fresh beef from a neighboring farm.  Yum.  We also had corn on the cob, fruit, and more fabulous salads.  A perfect summer meal outside.

Thursday was a bit rainy and A and I were both tired.  We had been getting emails indicating that our mortgage broker needed further documentation to complete the “clear to close” for our new house.  Extremely frustrating.  We thought we had provided all the documentation and didn’t understand why no one had asked for it sooner.  Not to mention we were in Maryland and had very limited access to the necessary documentation.  The best part was, they needed the documents by the following day or our closing could be delayed.  Somehow A was able to obtain what they needed.  We relaxed, played in the pool, and ordered several gourmet pizzas for dinner.  They were delicious.  We also had gourmet brownies for dessert.  Yup, much of the trip was about eating. ;)

Friday was the fourth of July.  A got us tickets to the Cubs/Nationals game.  I love National’s Park and the seats were awesome.  W joined us and we had so much fun.  We walked around, I ate way too expensive nachos, we cheered on our Cubs.  After that, we headed back to the house where my uncle had prepared a taco bar along with sides.  This wasn’t your ordinary taco bar.  There was marinated steak, pork, ground beef, and fish to choose from, several salsas, and toppings.  Oh my.  It was heavenly.  There were also several desserts to choose from.  We didn’t see any fireworks and that was fine by me.

 

We also took walks, played with bubbles in my aunt’s massive yard, and ate most meals outside.  It was perfect and restorative.  I had a really hard time with A’s hospital stay and illness.  I was stressed and emotional.  I was trying my best to be a great mom, wife, employee, and also prepare for our move and our trip while keeping up with cleaning, cooking, etc.  I was trying to do all that while A wasn’t feeling well.  And I felt like I was failing at everything.  It was exhausting – emotionally and physically. 

It’s such a relief to have him feeling better.  It feels like a huge weight lifted.  I really hope we don’t experience anything like that for a while – or ever again.  AND the best news… A had a doctor’s appointment this morning.  His lung function has improved greatly.  He had the highest numbers he’s had in a while. J J

Now it’s back to work and preparing for our move.  But at least I’m in a happier, refreshed state of mind. J

Tough Times

A is still undergoing IV treatment and still not feeling great.  I can’t speak for his emotional state, but I can say that I’m having a really hard time dealing with this situation.

It’s really depressing coming home from work and seeing A in his pajamas, hasn’t showered, no energy, no motivation.  Part of me blames the hospital.  That seems unfair, but before A was admitted, we were going out to lunch, looking forward to vacation, and living life.  Now, we’re moping around the house and planning tasks around the IV schedule.  It’s just sad.

I was very naïve and thought life would return to normal when A returned from the hospital and that’s just not the case.  My expectations were way too high.  Partly because I never experienced a situation like this before and partly because I was hoping for the best.

I usually get home from a long day of work at 6.  I try to put together a quick dinner, clean up a bit, play with W until his bed time, give him a bath, put on pjs, and rock him to sleep.  I feel like I’m on my own and I never have any down time.  It’s tough.

I just want A to get better.  I want to be excited for plans and upcoming events.  I want my partner back.  Right now, I’m just disheartened.  Maybe I’m overreacting a bit (likely), but I miss my active, upbeat husband.  Please send positive thoughts and prayers our way!

When CF clinic goes horribly wrong

I knew things had been going well.  Too well.  We had so much good news within one week and we're so excited about moving and having renters for our current house.  In my mind, I knew that all that goodness couldn't continue.  I can be a bit pessimistic (or maybe realistic?) and I just had a feeling that bad news was on the way.

A had his usual CF clinic visit last Tuesday (6/17).  He goes to clinic every 3 months.  I always try to go with him, but this time I had a business trip planned for the following day and was trying to catch up on some work.  I knew the clinic visit was not going to go very well because A had been battling a virus for a long time.  His weight was down and he was having a harder time breathing.  I knew all this, but expected that A would be put on a stronger antibiotic and told to eat more and that would be that.  Imagine my shock when I received a text from A saying that his doctor wanted to admit him to the hospital.  At first I didn't believe it.  The news didn't register.  I expected another text saying the doctor was overreacting and that A was on his way home.  So when the next text indicated that A would be heading to the hospital that night, I burst in to tears.

I tried to tell my boss what was going on.  No one at work knows about A's CF, but I wanted to explain that I was leaving the office because A was being admitted to the hospital.  I don't think any of my words made sense, but my boss is wonderful and offered to drive me.  I said it wasn't necessary and headed home as fast as I could.

I waited for A.  He arrived after picking up W.  He grabbed a few essentials and we said our goodbyes.  I think I cried the entire time and the whole situation just didn't seem real.   I realize A is lucky - and I'm lucky he's never been hospitalized the entire time I've known him.  But that also made this hard.  I wasn't expecting it and hadn't experienced it and I didn't know what to do.

I still had a business trip scheduled for Wednesday and I wasn't sure if I should go.  It was only supposed to be overnight and I was scheduled to return home by 5 the next day.  I asked A if I should go and he said it was fine.  We arranged for our parents to care for W and Addie to go to doggy day care.  I felt incredibly guilty about going, but I knew that although A wasn't feeling great, he wasn't totally miserable.  We had just gone out for lunch the day prior.

The business trip was a complete nightmare.  I was delayed going (4 hours) and delayed returning (7 hours).  I totally regret going.  Not because of the 11 hours in delays.  That was awful.  But I hated being away from my family.  I should've been with A and W.  I should have visited A in the hospital.  I should have been with him while he was undergoing tests and procedures.  I feel like I chose work over my family and I'll never do that again.  I also know that if the roles were reversed, I would expect A to stay with me.  I would've been extremely upset had he gone on a business trip.  I'm still mad at myself.

I wasn't happy with the care A received.  His picc line wasn't even inserted until Wednesday evening.  He wasn't given the proper amount of enzymes.  His meals looked horrible.  He didn't receive what he ordered.  I should've been there to advocate and ask questions.

A and I both returned home Thursday night.  Well, technically, I returned Friday morning - at 1:30 am thanks to my horrible delays.  A will have the picc line until Sunday.  He's been administering his own IV treatments every 6 hours.  We've had nurses to the house quite a bit.  Things have been tough on both of us.  Because of the treatments and limited mobility of his arm, A hasn't been able to help with W very much.  I feel like a single mom lately and have mad respect for single parents.  I can't wait for things to return to normal again.  This has definitely been one of the toughest weeks I've experienced (probably A too, but I can't speak for him).  I really hope these iv antibiotics work and A's lung function improves.  This experience has really given me a glimpse at how devastating CF can be.  It really scared me.

Fighting the Plague

I have not been doing a very good job at keeping up with the blog.  We’ve all been fighting viruses.  I was the first to get a cold, but mine was never bad and I felt fine for the most part.  W was diagnosed with an ear infection over a week ago.  He still has a runny nose and mild cough.  He had a cold for a week prior to the ear infection diagnoses so cold symptoms for over 2 weeks now.  A has been fighting a nasty virus for over a week.  He’s been tired, coughing, has no appetite, and no energy.  Not good.  Calls to two doctors haven’t proved very helpful.  One doctor said he could have pneumonia or mono.  Another said virus.  Antibiotics haven’t seemed to help.  Throw in the fact the W has been waking in the night and we’re all just exhausted.

So lately, our days seem more about survival.  Just trying to get through the day.  It’s been rough and I think we’re all feeling a bit defeated on the health front.  BUT A’s last day of school is Friday so he’ll have some time to rest… maybe... if we make it through this week. J

I do have updates to share so stay tuned!

A week without a post

I came down with a cold last week so I took a little break from the blog.  It was my first cold in a really long time so I guess I was due.  Sometimes I think colds are the body’s way of forcing you to slow down a bit.  And that’s exactly what I did.  I took sick days both Thursday and Friday.  I did some work from home, but for the most part, I rested.  I was bored out of my mind, but I think I needed it.  Anyway, as soon as I shake this cough and I'm able to sleep, I’ll be back to normal.

 I’m not sure if anyone actually reads this blog.  If you do and you happened to say a little prayer for a good CF clinic visit for A, then I really really appreciate it (and so does he).  His appointment went really well… yay!!  He’ll be getting back on Cayston and he even gained 2 pounds… way to go A!!  I hope I’m able to attend the next appointment.  Very thankful for good health.

 Friday, baby W had a first that I hope doesn’t repeat anytime soon.  W had been standing, lost his balance, and landed on his butt.  It seemed like no big deal, but he started screaming.  A scooped him up and I came over the check on him.  That’s when I saw blood on W’s mouth and on A’s shirt.  W must’ve bit his lip when he fell.  My poor baby. L

 Saturday was the Halloween Parade in Grandma W’s neighborhood.  When I was pregnant, I decided that baby W would be a cow.  Addie already had a pig costume (yes, we dress up the dog – go ahead and judge) so I thought it would be cute if we had our own little farm.  Well, it sounded like a cute idea, but baby W HATED his costume.  He cried when I put it on him and had a sad/mopey face the entire time that costume was on.  He did look extremely cute despite the pouty face.  My poor little sad cow.  The Halloween parade was cute, we enjoyed lunch at Grandma W’s, baby W got to play with his cousins, and then it was time to head home.

 And then Saturday night… make that Sunday morning, around 12:30 am, baby W decided that he no longer needed to sleep.  For the next 2 hours, A and I tried to get him back to bed.  And for the next 2 hours, W would fall asleep in our arms only to wake up and cry as soon as we tried to put him back in the crib.  I finally gave up and brought him to our bed.  He thought this was the best thing ever.  He’d look at A and smile, then look at me and smile.  FINALLY, he fell asleep and I was able to put him in his crib.  I am paranoid and don’t let W sleep with any blankets or other items in his crib so there was no way I was going to let him stay in bed with us.  I’m not sure what happened to my wonderful sleeping baby – if you find him, let me know!  He only had one short nap that day and I think it threw everything off.

 Sunday was our typical church and Starbucks routine (bonus points for making it to church despite the lack of sleep).  Then it was off to Grandma G’s for trick-or-treating.  Trick-or-treating is always the Sunday before Halloween in Grandma G’s town.  I was hoping my little cow would be in a better mood, but no such luck.  After visiting Grandma and her neighbor, Joan, the costume was taken off and happy baby W returned.

 Sunday also happened to be A and I’s 6^th wedding anniversary.  We’re planning a date night this coming weekend… I can’t wait!  I feel like the anniversary of our marriage deserves its own special post, but I’ll say this:  I’m extremely grateful to have a best friend who also happens to be my husband and an amazing father.  I often think about the future and how much Baby W will appreciate his dad.  It warms my heart.

 I think that about sums it up.

 Oh, I’ve mentioned it in previous posts -  A and I have been trying to decide when to do IVF again.  It’s a really hard decision to make.  I’m excited about the new doctor we met with and I think we finally decided on a month in 2014 (after changing our minds at least 4 different times).  Our plan may change again, but for right now, I’m happy and at peace with our decision.  We’ve decided to wait a bit longer than originally planned to save up a little more money… here’s hoping our plan is the best path for our family.

 

Sorry for the long post - that's what happens when I go a week without blogging. :)

 

 

 

Baby W is 10 months old... and life lately...

Lots on my mind, lots going on so pardon me while I ramble…

 

Baby W turned 10 months old on Sunday.  10 months!  That’s crazy.  Here’s his 10 month post:

Happy 10 months!! Wow, double digits. This past month was one of my favorites.  I think I say that every time.  You grew so much - both physically and cognitively.  At 9 months, you were crawling, but now, you are crawling all over the place and fast.  We can’t take our eyes off of you and have to use baby gates throughout the house.  You started pulling yourself up to standing and you’d much rather stand than sit these days.  Of course, booboos and ouchies accompany this milestone and you’ve already gotten a couple. L  You love when we hold your hands and help you “walk” through the house.  You also love when we help you chase Addie.  It’s nearly impossible to change your diaper lately… you roll over and start to crawl away no matter how many toys we have on hand to distract you.  Is it too soon to potty train? J  You babble and say dada, mama, and up quite often, but I don’t think you understand what these words mean just yet.  You clap, wave, give high five, and raise your arms to make the touchdown sign.  You love pulling off people’s glasses (especially daddy’s), pulling hair (mom’s), and your favorite song is currently Twinkle Twinkle Little Star (I think it may have taken the place of the beloved Cookie Monster song).  You’ve gotten quite a few giggles when you try to “sing” during church.  We’ve been trying to transition you to table foods, but you just aren’t a fan – you seem to be very sensitive to texture.  We’ll keep trying.  You can’t eat purees forever, right?  We’ve had so much fun taking you to pumpkin farms and going on family walks this month.  You bring us so much joy every day.  You are our everything and more, little man.

A has CF clinic today.  I always get a little nervous when he goes.  I get even more nervous when I can’t be with him (like today).  Hoping for good results and a good report.  Extra prayers for him, please.  The last CF clinic did not go well... but not for health related reasons.  A was annoyed that the staff seems to constantly try to change his meds despite A having no major issues and good results.  I complained about the horrible survey they sent out and they seemed very taken aback by my interpretation of the survey.  AND there’s this social worker there.  She means well and she’s nice, BUT she looks so young.  I should’ve prefaced this by saying that during CF clinic, A meets with the nurse, doctor, dietician, and social worker – it’s the standard protocol.  Anyway, back to the social worker.  When I first met her, she asked who I was.  I’ve been going with A to CF clinic for almost 10 years now… and also who the heck else would I be other than his wife?!?  Furthermore, I don’t think either one of us feel comfortable sharing our fears and concerns with someone who looks like she should be in high school.

A and I met with a new RE last night!!  I LOVED him.  Now the big question remains… When do we do IVF again?  We’re waiting to find out what exactly will be covered by insurance and that will be a major deciding factor.  But if the majority of IVF is covered by insurance, then when?  I had an arbitrary date chosen.  BUT the new RE’s confidence is causing me to question that date.  I know that confidence is a good thing, but now I’m reconsidering the timing.  The new RE was very assured and even thought it was quite likely we could have twins.  That totally threw me off… we were thinking about IVF next year - maybe even spring time because we figured there was a good possibility it would take multiple attempts to be successful.  I wasn’t even thinking twins.  If we have another baby, we absolutely have to move.  I know people think I’m ridiculous and unreasonable when I say that, but we’re out of space.  I refuse to add another person to our current house.  I discussed that in a previous post.  Now I have no idea what to do.  The previous RE was also really confident/optimistic and our first cycle failed – I know there’s still a good possibility the next cycle won’t work, but I guess I wasn’t expecting the new doctor to be so positive?  Last night I had decided that we would wait before undergoing another round of IVF.  Today, I’ve decided we’ll go with the original plan.  Uggh.  Obviously I have lots of thinking and considering to do… I should mention that A seems to be on board with whatever – he’s so easy going.  I’m not trying to leave him out by saying ‘I’m deciding’, it’s just that he doesn’t seem to have strong opinions on when the next IVF should take place, whereas I’m much more anxious/analytical/worried/stressed about the topic.

 

My car said it was 33 degrees this morning.  Umm what?!?!  I am NOT ready for winter.  I am not ready for my beloved autumn to leave.  BUT with winter comes the end of road construction…. Hmm.  At least that’s one positive.

 

I have a business dinner tonight.  I also have a sore throat and a pimple the size of Mt. Rushmore.  I’ve never seen Mt Rushmore, but it’s big, right?  Yeah, 32 years old and still dealing with pimples.  Not. Cool. L  Nothing says business professional like a huge bump…. Whaaaaa.  How embarrassing.  Okay, I know there are far worse things in life so I’ll shut up about that.

Office Politics

I didn’t plan on two posts in one day, but I had to pop on.
 
I’ve mentioned that I work for a pharmaceutical company.  Well, today we were required to attend a meeting with one of our state’s congressmen.  There were some grumblings around the office about boring political presentations and having more important things to do, but I was secretly looking forward to it.  I know next to nothing about politics, but I do enjoy hearing other’s viewpoints, learning about the bills up for debate, the work being accomplished <insert political satire here>.  Anyway, the CEO began his introduction of the congressman.  He talked a bit about our company, how we started off with one person and have grown significantly.  He talked about how small companies were accomplishing big things.  Then he mentioned Vertex Pharmaceuticals!!!!  VERTEX!!  He discussed how they were making huge advancements in the treatment of Cystic Fibrosis!!  One small company achieving life changing discoveries!  I actually teared up.  No one at my office knows A has CF.  We’re very private and I leave it up to A to decide who knows he has CF… that’s a completely different post.  The point is, the word is spreading… this is a disease that needs a CURE.  With more research, there WILL be a cure.  I assumed no one at my company had ever heard of Vertex, and now they all have.  I’m so proud of the company I work for and the industry I work in.  At the end of the day, despite all the politics, we [in the pharma industry] just want to help people, to make them feel better, to improve their lives. <3 <3

Dropping the CF Bomb

I distinctly remember the moment A told me he had CF.  It was only a few weeks after we had started dating.  A showed me the large scar on his belly – the result of a surgery that was performed when he was just a tiny baby.  He told me that he had Cystic Fibrosis and gave me the impression that he really didn’t want to talk about it any further; he just wanted me to know.  I was stunned, but refrained from asking any further questions.  A seemed completely healthy to me.  He cleared his throat or coughed every now and then, but I never thought much of it.  I never even noticed the enzymes he took before a meal or snack.  After I left his house that night, I cried during my drive home.  The minimal knowledge I had of CF stemmed from a high school health class.  I only knew that the disease affected breathing and it wasn’t good.  I didn’t know the severity of A’s CF, but I couldn’t believe this new relationship was beginning with such a revelation.  That night as I drove home, I told myself it was fight or flight.  I was either in this relationship for the long run and was willing to deal with the challenges that CF would bring or I had to get out right now.  Complicating my decision was that fact that I had lost my dad unexpectedly just a year prior and I didn’t know if I was strong enough to handle A’s disease.  I might also add that Google is NOT your friend when you’re looking for positive stories regarding CF (Why does Google always seem to highlight the worst possible outcomes?!?!  Any time I Google some random symptom, I’m convinced I have rabies, Lyme Disease, or the bubonic plague.).

Obviously I decided to stick by A.  I figured there were no guarantees in life – we just have to make the most of the relationships we have and the situations we find ourselves in.  We’ve been together ever since and it remains one of the best decisions I ever made.

I’m also proud of A for taking great care of himself.  He’s awesome about his daily vest regimen, keeps up with all his medications/inhalers/nebulizers, and hardly ever misses a doctor’s appointment.  He’s awesome.

And So It Begins

I contemplated starting a blog while I was pregnant.  I had been searching for stories that were similar to ours, but I just couldn’t find many (maybe I suck at searching?).  So here I am, nearly a year later, finally writing my very first blog entry.  I’m not sure how often I’ll post.  I’m a pretty busy girl.  But I find writing therapeutic and so I hope to find time to write on a routine basis.  Not to mention, I love reading about others, getting a glimpse into their life, learning about their viewpoints and interests (maybe I’m just really nosey?).   I hope you enjoy learning a little more about me and my family.

So here is the story of a wonderful guy (A, hubs) – he happens to be a great husband, a fabulous father, a teacher, a serious sports fan (particularly a fan of Chicago teams), a Simpsons watcher, and a trivia buff.  He also has Cystic Fibrosis.  Me (C, wifey) – I’m a (super) wife, a (wonderful) mom, a bit of a science geek (I have a degree in Chemistry), an animal lover, and a shopaholic.  And I should warn you that I can be a bit very sarcastic – it often gets me in trouble.  I went through two rounds of IVF in order to have our miracle baby.  Sweet Baby W (little man) – he’s currently 7 months old and perfect in every.single.way.  He is my everything and I’m constantly amazed by him.  Seriously, I don’t have words to describe how awesome he truly is.  Not to mention he is unbelievably adorable.  And last, but not least – Addie.  I’ll use her real name.  She’s our first baby; our fur baby, our rescue dog.  Nearly 6 years old and 25 pounds of crazy.  She’s a Beagle/Jack Russell terrier mix.

I should also mention I’m not yet comfortable with the entire world knowing who we are.  With that said, I will start with very few pictures and will not use names… not yet, anyway… we’ll see how the blog evolves over time.  Enjoy…