Hello All,
I know you've been anxiously awaiting an update on my Trikafta journey, so here we are!
If you don't really know what Trikafta is/does...I've gotta get a little scientific. The genetic mutation with CF causes the Cystic fibrosis transmembrane conductance regulator (CFTR) Proteins to either not reach the surface of the cell or if they do reach the surface of the cell, then they do not open properly, which in turn causes a disruption to the sodium and water balance. Therefore causing thicker and stickier mucus in all your bodies passage ways. So CF affects the lungs, digestive system, etc. The thicker and stickier mucus in the lungs makes it's easier for bacteria to adhere and more difficult to get it out, so infections (colds, flu, etc) hang around longer because it's harder to get rid of the bacteria/virus that causes them...and it makes it more difficult to breathe by causing inflammation. The mucus causes issues in the digestive system by making it harder to absorb nutrients from food (that's why many people with CF have difficulty gaining weight). The enzymes that help break down the food in the digestive system, have trouble getting out of the pancreas because of the thick and sticky mucus that clogs the ducts to the stomach and intestines...this is the same for the insulin from the pancreas. So many people with CF end up with Cystic Fibrosis related Diabetes. Trikafta is a triple combination. It's made of 3 different medications. It helps the CFTR Proteins to reach the cell surface and to open properly and stay open longer, therefore helping the mucus to thin out, which makes it easier to cough up.
Trikafta is NOT a cure. It is the first medication/treatment that we have that actually treats at the cellular level. But it is not a cure!
I'm going to start by telling you my hope for my Trikafta journey.
My hope is to at least maintain my lung function, and decrease the decline of my health, and to see a decrease in my symptoms of CF. If that's all that happens I will be happy.
So...how am I doing?
A lot of people I'm friends with on FB or who have posted in FB groups I'm in have posted that they no longer feel like they have CF. Some have had 20-30 percent increases in their lung function. Some have no longer had coughing fits. Some have no trouble breathing or coughing when exercising. Some people have had what they're calling "the purge", where they are coughing up lots and lots of thick mucus.
I don't feel hugely different...
I haven't noticed a whole lot of changes...
On days 2 and 3, I'd say I had my "purge". And by purge I mean I coughed up maybe 3-4 tablespoons worth of mucus total. I'll save you all from posting the picture I took of it. But I will tell you this, I RARELY ever cough anything up. It's a chore, usually, to produce something when they want a specimen at the doctors office. Unless I'm sick, I hardly ever have a productive cough. So, to EASILY cough up a tablespoon or so at a time without much effort, was HUGE for me.
My sister lives 2 doors down, and on day 3 or 4 I ran from the back of her garage, to my garage (maybe 50 yards total) and I was not Short of breath, upon arrival, nor did I have a coughing fit afterwards.
I'm not sure what my weight was before starting Trikafta, but at my most in my life, I was around 136. I haven't been there for a few years, but I weighed myself on Thanksgiving (albeit after I ate, at my parents) and I was back to 136. Heather, we may not need the cure to make me fat after all...HAHA!
I usually sleep through the night and really well. The first week I woke up every night with a dry cough that wouldn't subside until I did albuterol and a round of my vest. I think that's starting to pass, not sure though if it's related to the Trikafta, or that I was not at my 100% when I started the medication to begin with and Fall is my difficult time. But this is the only real "negative" I've seen since starting the medication.
AND that's about all I've noticed so far.
I don't have a follow up for lung functions for another couple months. We will see if I maintain or if it does give me an increase. Again, my hope is to have a decrease in symptoms and to maintain my current lung function. At this point, less shortness of breath with increased activity and being able to produce mucus easier to expel have hit those marks.
I want you to check in. I want you to ask, but please understand, it is hard for me to answer how I'm doing, what I'm seeing and if I'm "better"...
While I am excited about Trikafta, hopeful, happy, I am also nervous and cautiously optimistic. Again, Trikafta is not a cure. Some people may not see a change in their CF, it may not help them. Even on this medication we will still have people with decline, we will still lose precious lives too soon.
Trikafta is only approved for 90% of the CF population. Which means there is 10% of my Cysters and Fibros that have no CFTR modulator or can't take one yet. They are sitting in the wings waiting for treatment. They have nothing and would give anything to be at my stage.
I also have some survivors guilt.
When I think of friends who have passed, that never got to get to this point. Some were adults, some have been children. Why do I get to experience this and they didn't? I'm grateful but sad all at the same time.
So it's hard for me to think only of the "better" it will bring to me and to those that are able to take it.
With all that said...please keep my CF family in your thoughts and prayers. Pray for those who are on these CFTR modulators, that we would see the results we hope for, and maybe a few nice surprises on the side. Pray for those who have no modulator, that they would thrive despite not having these treatments at their disposal...and that the scientists would be swift in developing modulators and new treatments, and Ultimately a cure for us all!
I love you all and am so blessed to have so many loving friends and family to share this journey with. I am a Salty Girl and my Team and Tribe of supporters are the BEST around.
As D-Dub says: #LoveEternal
Saturday, December 7, 2019
Thursday, August 15, 2019
Bucket List
I keep seeing people posting 40 by 40 and other "goals" of things to do before a certain birthday, or the end of their life.
In case you can't read it (some of the chalk has rubbed off over the years), here's what it says.
~ Red Barn
~ Cure CF
~ Go to Hawaii
~ Live to 86
~ Ride in a gondola in Italy
~ Work with Joy in Niger
Let me explain, and then add a few more...
~ Red Barn
For quite a while my sister, Heather, and I have been wanting to turn my Dad's (previously my Grandparents) barn in to an event space. Chris and I bought the house my grandparents built. They sold antiques and depression glass out of the little red barn behind their house. It was called Whetsel's Red Barn.
If you've seen pictures on facebook, you realize, the barn we are using is MUCH larger and it is actually white...
A friend took our picture the evening the boys finished dropping the loft completely.
I'm so excited for where the barn is going and the fact that we get to do it together!!!
~ Cure CF
Okay, I am not specifically curing CF, but I want to see it. I really think I will see a cure in my lifetime! It's coming and it's so exciting.
~ Go to Hawaii
I've never been, and it looks beautiful, so I'd like to go.
~ Live to 86
With the life expectancy, for people with CF, being 42 (when Chris met me it was 28) and rising every few years, I have always said I will die of something other than CF. Chris and I decided we will die together of Euthanasia at 86, so we never have to be without each other. Once the CF cure comes, the age may change ;0)
~ Ride in a gondola in Italy
Chris and I went to Vegas for our 2nd anniversary. We rode in a gondola at the Venetian hotel, it was fun. But I would love to travel and I'd love to go to Italy and ride in a gondola there.
~ Work with Joy in Niger
Joy is Chris's Aunt. She and Gary (Chris's Uncle) are missionaries in Niger. Joy is a nurse and has run a clinic in the bush for years. Every time they come home to Indiana, we make it a point to see them. Joy and I sit and talk the ENTIRE time. I love this, it's my fave! Ever since I met Joy, it has been a dream of mine to work with her in Niger.
With a lot of the unrest where they are, she hasn't been able to be out in the Bush in her clinic for a while now. So I'm not sure if this will be able to come to fruition. But I won't take it off my bucket list, because if things change, I'm on the next flight out (during the season Joy says is best weather wise to come....it's HOT in Africa)!
Here's a few more that I've added over the past few years:
~ Sing lead on a cover at Crosspoint
Bucket list items are supposed to be things that are BIG, and while this may seem small to some, it's BIG for me. I did this once when we met at school, before we built our building, but Chris wasn't there (It was the Indy 500, and he goes every year with my parents).
Every weekend we do a cover song that relates to the message and I would love to sing lead on one.
~ Teach a message at Crosspoint
Oooh, this one is REALLY BIG! It gives me jitters just typing it out. We have a great teaching team at Crosspoint, and I love when we have guest speakers to give us a new perspective. I'm not even sure what I would talk about, or what kind of message or perspective I could give others. But I feel like God is prompting me to share my life insights, and I know if the opportunity arose, He would guide me with the words.
~ Travel to Haiti with Chris
Chris went on a mission trip to Haiti this past February. I sat and listened to all of his stories and experiences and was kinda jealous. Also, he was like, "You HAVE to go next year!" Serving others is something we are passionate about and I would LOVE to do that together.
~ Emma
Yes y'all, I know we have her ;0) I mean all kinds of things related to Emma. There are so many and so many more that will come up. Get past 2nd grade reading (seriously), watch her get her license, pick out prom dresses, be there for her first heartbreak, see who she becomes, cheer her on as she chooses her career, help her pick out her wedding dress (she wants to go to Kleinfeld's, but she said YES to my dress a few years ago, so this is really just a technicality), dance with her at her wedding in The Red Barn (Mom's can do this too).
~ Volunteer
I recently "retired" to focus more on my health. I'm not made to just sit and do nothing, and I haven't been...but I would like to get out and serve/volunteer in other capacities.
~ Increase lung function and return to workforce
I had a doctor's appointment last week and my lung function is already up to a percent higher than it has been since before October 2017...WOO HOO!!!!
So there it is. My bucket list, in no specific order (other than I started with what was written on the door). Things will be added in the future, I'm sure, but now it's written down.
I love nothing more than to cross things off my lists, so time to get to it!
We never know how much time is left, how long we are blessed to be here and with the people we love, doing the things we are passionate about.
A few years ago when Chris was doing Fight Club (not the Fight Club you're thinking of), he was prompted to get with the family and have us all write down our life goals. We wrote them down on our chalkboard basement door.
Here's Mine:
Here's Mine:
In case you can't read it (some of the chalk has rubbed off over the years), here's what it says.
~ Red Barn
~ Cure CF
~ Go to Hawaii
~ Live to 86
~ Ride in a gondola in Italy
~ Work with Joy in Niger
Let me explain, and then add a few more...
~ Red Barn
For quite a while my sister, Heather, and I have been wanting to turn my Dad's (previously my Grandparents) barn in to an event space. Chris and I bought the house my grandparents built. They sold antiques and depression glass out of the little red barn behind their house. It was called Whetsel's Red Barn.
If you've seen pictures on facebook, you realize, the barn we are using is MUCH larger and it is actually white...
It's called The Red Barn, as a nod back to Grandma and Grandpa. We think it's kind of fun and that it will help people remember us.
We have done a lot of work...and by we I mean our whole family. Mom and Dad, Heather and me, our husbands, but especially Killian and Keegan. The boys took out the entire loft of the barn this summer. Actually in about 3 weeks. It's amazing.
We celebrated the beginning of the barn reno with dinner IN the barn!
Sweet Hank was there too! (I love you Hanky!!!!!)
The loft is down, we saved all the wood we could. The barn is SMILING!!!!!!
A friend took our picture the evening the boys finished dropping the loft completely.
I'm so excited for where the barn is going and the fact that we get to do it together!!!
~ Cure CF
Okay, I am not specifically curing CF, but I want to see it. I really think I will see a cure in my lifetime! It's coming and it's so exciting.
~ Go to Hawaii
I've never been, and it looks beautiful, so I'd like to go.
~ Live to 86
With the life expectancy, for people with CF, being 42 (when Chris met me it was 28) and rising every few years, I have always said I will die of something other than CF. Chris and I decided we will die together of Euthanasia at 86, so we never have to be without each other. Once the CF cure comes, the age may change ;0)
~ Ride in a gondola in Italy
Chris and I went to Vegas for our 2nd anniversary. We rode in a gondola at the Venetian hotel, it was fun. But I would love to travel and I'd love to go to Italy and ride in a gondola there.
~ Work with Joy in Niger
Joy is Chris's Aunt. She and Gary (Chris's Uncle) are missionaries in Niger. Joy is a nurse and has run a clinic in the bush for years. Every time they come home to Indiana, we make it a point to see them. Joy and I sit and talk the ENTIRE time. I love this, it's my fave! Ever since I met Joy, it has been a dream of mine to work with her in Niger.
With a lot of the unrest where they are, she hasn't been able to be out in the Bush in her clinic for a while now. So I'm not sure if this will be able to come to fruition. But I won't take it off my bucket list, because if things change, I'm on the next flight out (during the season Joy says is best weather wise to come....it's HOT in Africa)!
Here's a few more that I've added over the past few years:
~ Sing lead on a cover at Crosspoint
Bucket list items are supposed to be things that are BIG, and while this may seem small to some, it's BIG for me. I did this once when we met at school, before we built our building, but Chris wasn't there (It was the Indy 500, and he goes every year with my parents).
Every weekend we do a cover song that relates to the message and I would love to sing lead on one.
~ Teach a message at Crosspoint
Oooh, this one is REALLY BIG! It gives me jitters just typing it out. We have a great teaching team at Crosspoint, and I love when we have guest speakers to give us a new perspective. I'm not even sure what I would talk about, or what kind of message or perspective I could give others. But I feel like God is prompting me to share my life insights, and I know if the opportunity arose, He would guide me with the words.
~ Travel to Haiti with Chris
Chris went on a mission trip to Haiti this past February. I sat and listened to all of his stories and experiences and was kinda jealous. Also, he was like, "You HAVE to go next year!" Serving others is something we are passionate about and I would LOVE to do that together.
~ Emma
Yes y'all, I know we have her ;0) I mean all kinds of things related to Emma. There are so many and so many more that will come up. Get past 2nd grade reading (seriously), watch her get her license, pick out prom dresses, be there for her first heartbreak, see who she becomes, cheer her on as she chooses her career, help her pick out her wedding dress (she wants to go to Kleinfeld's, but she said YES to my dress a few years ago, so this is really just a technicality), dance with her at her wedding in The Red Barn (Mom's can do this too).
~ Volunteer
I recently "retired" to focus more on my health. I'm not made to just sit and do nothing, and I haven't been...but I would like to get out and serve/volunteer in other capacities.
~ Increase lung function and return to workforce
I had a doctor's appointment last week and my lung function is already up to a percent higher than it has been since before October 2017...WOO HOO!!!!
So there it is. My bucket list, in no specific order (other than I started with what was written on the door). Things will be added in the future, I'm sure, but now it's written down.
I love nothing more than to cross things off my lists, so time to get to it!
Wednesday, March 27, 2019
Five Feet Apart - My Thoughts
This post isn't all about the movie... it's basically become a brain dump for me. On where my head is with CF...the movie gave me a catalyst to start putting it down.
I'm going to preface this post with the fact that there will most likely be some spoiler alerts in regards to the movie. If you read the book, honestly, the movie very closely follows it, so there won't really be any spoilers for you. If you haven't seen the movie, you plan too, and you don't want to know what is going to happen, don't read any further.
Chris and I read the book together. So I expected to ugly cry more than I actually did! As I said before, the movie very closely follows the book, so I think knowing what was coming, I could mentally prepare myself and didn't cry as much as I had originally thought I would.
I did cry at parts, parts that really resonated with me. Quotes and moments that I could feel as part of my own story, those inevitably brought tears. A few times they rolled down my face and I didn't even recognize at the moment how poignant what had just happened was, until I felt the hot sting down my cheek.
I liked the movie, as much as someone can like a movie about a terminal illness. If you have it in your head that it's going to be like A Walk to Remember, or The Fault in Our Stars, you're wrong. I don't know, maybe you're not. I walked in to those movies, having read those books as well, but I didn't have the disease the movie was portraying. It felt heavier, less cinematic to me, more real...
This was different for me.
I walked in to a theatre to see a movie trying to pay homage to what I live with on a daily basis, knowing full well it wouldn't 100% stand up to my life and the 30,000 other Americans living with CF. I knew walking in that what I saw on the screen was going to be a Hollywood adaptation, but also, knowing they had worked with Claire Wineland (a prominent person in the CF community) to try and get things right, I had high hopes.
In the book, Stella (the main female character) has a lung function of 35% (if you read my previous post, you know that's where I am). Unlike me, she's on oxygen pretty much all the time, and is on a lung transplant list. Will (the main male character) is also on oxygen, but he has B. Cepacia and is therefore not eligible for a lung transplant. *While many transplant centers will not transplant for people with B. Cepacia, there are some centers that will, so this was a little bit of a false piece of info from the movie.
Stella is very organized, she makes to do lists daily - my sister, Heather, leaned over to me and was like, "OH My Gosh...She is YOU!" Ha!
Chris, Heather and my brother - in - law Shawn all went with me
Will is completely over CF, he's come to the point where he believes he's going to die soon no matter what, so why try anymore. He's on a trial drug to help with B. Cepacia, his Mom wants him to do it, so he is.
I grew up in a time before the Cystic Fibrosis Foundation had all these rules about being six feet apart. My Mom joined a CF Mom's group when I was diagnosed. All the Moms were stay at home Moms at the time, so they got together once a month, YEP - we kiddos came along, and they chatted about how life was going, their struggles, their triumphs. While the kids ran around and played together...breathed on each other (no doubt). Once a year we went to a CF conference in Indy. It was a weekend long thing. We stayed at a hotel, our parents went to break out sessions to learn about new medicines, treatments, etc. And the kids? We played together, we went to our pow wow's, we swam together...we were most definitely not six feet apart.
I think this was a huge part of why I view CF the way I do. I made lifelong (some shorter than should have ever been) friendships with people who absolutely know exactly what I go through every single day. I can't really speak for Heather, but I would guess that being with other Siblings of CF was a major plus for her. She had other people to talk to about what it was like to have a sibling deal with things she doesn't have to, and how sometimes it's could be a bummer and hold her back from fun stuff if I was sick.
So, while I understand the point of these cross contamination rules, I don't want to say I don't care, but honestly, I think it's almost more detrimental in some ways, than helpful. If someone else doesn't want me within 6 feet of them because they want to follow that rule, I will respect their wishes, but my dear sweet CF friends, if you need a hug, and I am there, please know, my arms are wide open and my airway is facing the opposite direction!
Okay, back to the movie:
They explained what CF is, cross-contamination, and a few things that people with CF go through. But it was all based in the hospital. I wish there would have been more info about how those things are done when you're at home, and healthy. Treatments don't stop when you get out of the hospital. They start day one of diagnosis and continue daily until you leave the earth.
I've mentioned my regimen on Facebook multiple times...
Not everyone has a g-tube, I don't, but some do.
They didn't mention that some people have CF Related Diabetes, and how this brings a whole other bag of tricks to deal with it. I'm on an insulin pump because of CFRD.
They didn't mention that after a while, some peoples bodies become resistant to the antibiotics they're on and there aren't a lot of antibiotics out there to treat our specific bacterias.
They didn't mention that many of the primary IV antibiotics used can cause Ototoxicity, which means, you end up with hearing loss from them. I now wear a hearing aide in my right ear daily...Thanks Tobramycin!
I don't bring my own comforter set with matching pillows, decorative lights, mug of pens, and art work for the wall of my hospital room. Others might, but dear Lord, that's a LOT of crap to pack up after a hospital visit.
A respiratory therapist never came in to the do their treatments either.
I haven't been inpatient since 2005, so maybe things have changed. Maybe if you're constantly in and out of the hospital you do these things and have more independence with your care...I'll plead the 5th on this one.
What they did show...
You become friends with the other people on the floor...patients and nurses, your roommate (if you have one).
You roam around the hospital together and find things to do and get in to that you probably shouldn't.
That stuff is true.
I used to do wheelchair races with other kids. We'd go in a big room and there would be a tutor/teacher that came in every day and they would help us with our school work. Other times we had crafts and snack times, etc. I'd take walks through the hospital, find the library, ride the glass elevators up and down.
The isolation is also true.
Heather mentioned how the parents/families didn't seem to come much and that surprised her.
You all know me and my family, that is NOT at all how my family would ever handle an inpatient stay with me. In fact, the only time I really remember not having someone with me every day or night, was when I did an enzyme study the summer after I graduated high school. I wasn't even sick, I just had to stay so they could watch my input and output...and I was flabbergasted that my parents weren't going to spend the nights with me. In fact, I think they went to the lake while I was in...
But if I was sick, Mom or Dad or a grandparent was always there. Heather even came and stayed with me a couple times.
But even with a very supportive family, there can be some isolation...
As Chris said in the middle of Central Park in NYC, "I live with CF every day, but I don't LIVE with CF every day."
It can be isolating to be the only one to know what it's like to live with these lungs every day.
To look at a flight of stairs and question what your lungs will feel like after you climb them.
To wonder if you can, in a year, go on a mission trip with your husband, because it's harder to breathe when you're hot.
To think you may not be able to continue working full time or at all, because you don't know what the future holds and you want quality as well as quantity.
At one point in the book and movie, you mourn Stella's friend Poe and her sister Abby.
Survivor's guilt is real ya'll. In more ways than one, I'd argue.
I know people in the CF community that have passed away. Friends, fellow Cysters and Fibros. Some I knew personally, some I knew only through CF and connections we made on social media.
You feel guilty because you're still here...and they're not. Why do I get to be here and continue my life...why not them?
Then there's the guilt I feel for those still living, but who are doing much worse than me...
I feel that. It may sound stupid, but it's true.
I'm in lots of groups on FB and people are posting daily about how they're back in the hospital for the 6th time already this year (it's still March people...the 3rd month of the year), or they're sharing information on a 6 year old waiting for new lungs on the transplant list.
In 2 months I will turn 39 and I'm still kicking it on the 2 lungs God blessed me with at Birth! Why me, and not them too?
They showed the rage that comes with the frustration of doing everything you're supposed to do and still getting sick.
CF is a progressive disease. Yes, the new treatments out are tremendous and have given people back function they had lost long ago. But they're not a cure. And no matter how well you stick to your regimen, and do what you're supposed to do when you're supposed to, you still get sick at times.
Poe dies and Stella trashes her room. Out of anger for this stupid disease that neither of them can stop from progressing forward.
I get it.
All too well, I understand what it's like to sit and do treatments, time sucking treatments, and still walk in and find my lung functions have dropped.
You're supposed to see positive results when you do what you're supposed to, right?
CF doesn't necessarily work that way! It Sucks!
There are many people with CF who deal with Depression and anxiety on top of all that CF gives them already.
I have spent my life telling people that I have CF, CF doesn't have me. I won't let it get in my way. I won't use it as an excuse. It's true! I believe all of that.
However, I also recognize that at some point I have to admit that there are limitations because of it. And that is HARD!
So, I guess that's where I'm at with the movie...all over the place. HA!
I liked it. It gave an okay representation of CF, but there was so much missed all at the same time...mainly because everyones CF story is so different. But I didn't hate it and I didn't feel like it made CF look like a breezy walk in the park.
If nothing else, I hope it helps people learn a little more about CF. I hope people that meet someone with CF will at least be able to say they've heard of it, and feel they can ask questions.
So, if you have questions, feel free to ask, I'm an open book.
I'm going to preface this post with the fact that there will most likely be some spoiler alerts in regards to the movie. If you read the book, honestly, the movie very closely follows it, so there won't really be any spoilers for you. If you haven't seen the movie, you plan too, and you don't want to know what is going to happen, don't read any further.
Chris and I read the book together. So I expected to ugly cry more than I actually did! As I said before, the movie very closely follows the book, so I think knowing what was coming, I could mentally prepare myself and didn't cry as much as I had originally thought I would.
I did cry at parts, parts that really resonated with me. Quotes and moments that I could feel as part of my own story, those inevitably brought tears. A few times they rolled down my face and I didn't even recognize at the moment how poignant what had just happened was, until I felt the hot sting down my cheek.
I liked the movie, as much as someone can like a movie about a terminal illness. If you have it in your head that it's going to be like A Walk to Remember, or The Fault in Our Stars, you're wrong. I don't know, maybe you're not. I walked in to those movies, having read those books as well, but I didn't have the disease the movie was portraying. It felt heavier, less cinematic to me, more real...
This was different for me.
I walked in to a theatre to see a movie trying to pay homage to what I live with on a daily basis, knowing full well it wouldn't 100% stand up to my life and the 30,000 other Americans living with CF. I knew walking in that what I saw on the screen was going to be a Hollywood adaptation, but also, knowing they had worked with Claire Wineland (a prominent person in the CF community) to try and get things right, I had high hopes.
In the book, Stella (the main female character) has a lung function of 35% (if you read my previous post, you know that's where I am). Unlike me, she's on oxygen pretty much all the time, and is on a lung transplant list. Will (the main male character) is also on oxygen, but he has B. Cepacia and is therefore not eligible for a lung transplant. *While many transplant centers will not transplant for people with B. Cepacia, there are some centers that will, so this was a little bit of a false piece of info from the movie.
Stella is very organized, she makes to do lists daily - my sister, Heather, leaned over to me and was like, "OH My Gosh...She is YOU!" Ha!
Chris, Heather and my brother - in - law Shawn all went with me
Will is completely over CF, he's come to the point where he believes he's going to die soon no matter what, so why try anymore. He's on a trial drug to help with B. Cepacia, his Mom wants him to do it, so he is.
I grew up in a time before the Cystic Fibrosis Foundation had all these rules about being six feet apart. My Mom joined a CF Mom's group when I was diagnosed. All the Moms were stay at home Moms at the time, so they got together once a month, YEP - we kiddos came along, and they chatted about how life was going, their struggles, their triumphs. While the kids ran around and played together...breathed on each other (no doubt). Once a year we went to a CF conference in Indy. It was a weekend long thing. We stayed at a hotel, our parents went to break out sessions to learn about new medicines, treatments, etc. And the kids? We played together, we went to our pow wow's, we swam together...we were most definitely not six feet apart.
I think this was a huge part of why I view CF the way I do. I made lifelong (some shorter than should have ever been) friendships with people who absolutely know exactly what I go through every single day. I can't really speak for Heather, but I would guess that being with other Siblings of CF was a major plus for her. She had other people to talk to about what it was like to have a sibling deal with things she doesn't have to, and how sometimes it's could be a bummer and hold her back from fun stuff if I was sick.
So, while I understand the point of these cross contamination rules, I don't want to say I don't care, but honestly, I think it's almost more detrimental in some ways, than helpful. If someone else doesn't want me within 6 feet of them because they want to follow that rule, I will respect their wishes, but my dear sweet CF friends, if you need a hug, and I am there, please know, my arms are wide open and my airway is facing the opposite direction!
Okay, back to the movie:
They explained what CF is, cross-contamination, and a few things that people with CF go through. But it was all based in the hospital. I wish there would have been more info about how those things are done when you're at home, and healthy. Treatments don't stop when you get out of the hospital. They start day one of diagnosis and continue daily until you leave the earth.
I've mentioned my regimen on Facebook multiple times...
Not everyone has a g-tube, I don't, but some do.
They didn't mention that some people have CF Related Diabetes, and how this brings a whole other bag of tricks to deal with it. I'm on an insulin pump because of CFRD.
They didn't mention that after a while, some peoples bodies become resistant to the antibiotics they're on and there aren't a lot of antibiotics out there to treat our specific bacterias.
They didn't mention that many of the primary IV antibiotics used can cause Ototoxicity, which means, you end up with hearing loss from them. I now wear a hearing aide in my right ear daily...Thanks Tobramycin!
I don't bring my own comforter set with matching pillows, decorative lights, mug of pens, and art work for the wall of my hospital room. Others might, but dear Lord, that's a LOT of crap to pack up after a hospital visit.
A respiratory therapist never came in to the do their treatments either.
I haven't been inpatient since 2005, so maybe things have changed. Maybe if you're constantly in and out of the hospital you do these things and have more independence with your care...I'll plead the 5th on this one.
What they did show...
You become friends with the other people on the floor...patients and nurses, your roommate (if you have one).
You roam around the hospital together and find things to do and get in to that you probably shouldn't.
That stuff is true.
I used to do wheelchair races with other kids. We'd go in a big room and there would be a tutor/teacher that came in every day and they would help us with our school work. Other times we had crafts and snack times, etc. I'd take walks through the hospital, find the library, ride the glass elevators up and down.
The isolation is also true.
Heather mentioned how the parents/families didn't seem to come much and that surprised her.
You all know me and my family, that is NOT at all how my family would ever handle an inpatient stay with me. In fact, the only time I really remember not having someone with me every day or night, was when I did an enzyme study the summer after I graduated high school. I wasn't even sick, I just had to stay so they could watch my input and output...and I was flabbergasted that my parents weren't going to spend the nights with me. In fact, I think they went to the lake while I was in...
But if I was sick, Mom or Dad or a grandparent was always there. Heather even came and stayed with me a couple times.
But even with a very supportive family, there can be some isolation...
As Chris said in the middle of Central Park in NYC, "I live with CF every day, but I don't LIVE with CF every day."
It can be isolating to be the only one to know what it's like to live with these lungs every day.
To look at a flight of stairs and question what your lungs will feel like after you climb them.
To wonder if you can, in a year, go on a mission trip with your husband, because it's harder to breathe when you're hot.
To think you may not be able to continue working full time or at all, because you don't know what the future holds and you want quality as well as quantity.
At one point in the book and movie, you mourn Stella's friend Poe and her sister Abby.
Survivor's guilt is real ya'll. In more ways than one, I'd argue.
I know people in the CF community that have passed away. Friends, fellow Cysters and Fibros. Some I knew personally, some I knew only through CF and connections we made on social media.
You feel guilty because you're still here...and they're not. Why do I get to be here and continue my life...why not them?
Then there's the guilt I feel for those still living, but who are doing much worse than me...
I feel that. It may sound stupid, but it's true.
I'm in lots of groups on FB and people are posting daily about how they're back in the hospital for the 6th time already this year (it's still March people...the 3rd month of the year), or they're sharing information on a 6 year old waiting for new lungs on the transplant list.
In 2 months I will turn 39 and I'm still kicking it on the 2 lungs God blessed me with at Birth! Why me, and not them too?
They showed the rage that comes with the frustration of doing everything you're supposed to do and still getting sick.
CF is a progressive disease. Yes, the new treatments out are tremendous and have given people back function they had lost long ago. But they're not a cure. And no matter how well you stick to your regimen, and do what you're supposed to do when you're supposed to, you still get sick at times.
Poe dies and Stella trashes her room. Out of anger for this stupid disease that neither of them can stop from progressing forward.
I get it.
All too well, I understand what it's like to sit and do treatments, time sucking treatments, and still walk in and find my lung functions have dropped.
You're supposed to see positive results when you do what you're supposed to, right?
CF doesn't necessarily work that way! It Sucks!
There are many people with CF who deal with Depression and anxiety on top of all that CF gives them already.
I have spent my life telling people that I have CF, CF doesn't have me. I won't let it get in my way. I won't use it as an excuse. It's true! I believe all of that.
However, I also recognize that at some point I have to admit that there are limitations because of it. And that is HARD!
So, I guess that's where I'm at with the movie...all over the place. HA!
I liked it. It gave an okay representation of CF, but there was so much missed all at the same time...mainly because everyones CF story is so different. But I didn't hate it and I didn't feel like it made CF look like a breezy walk in the park.
If nothing else, I hope it helps people learn a little more about CF. I hope people that meet someone with CF will at least be able to say they've heard of it, and feel they can ask questions.
So, if you have questions, feel free to ask, I'm an open book.
Monday, March 4, 2019
Thirty-five Percent...
Do you ever get news that just sort of Rocks ya?
Not really in a good or a bad way...it just throws you for a loop?
Like, you were rolling along and all of a sudden you find something out and you're like, "Huh? Really? I never would've guessed that?"
I'm talking about news about yourself, by the way.
I feel like I once wrote a blog post that started very similar to this. That time it was news about stuff you had lived your life thinking could never happen, and then all of sudden you were told something was a possibility. That time I was talking about Dr. Eigen telling me that it may be possible for Chris and I to have a baby biologically.
This time, it's about my lung function...
At church on Sunday, we were ripping our tape measures, and mine started at 38.5, and ended with the normal life expectancy for a woman, of 81. This was supposed to show us how much "time" we potentially have left on this earth. We were to be thinking about what impact we want to have with the time we have left. How will we make the time we have left meaningful?
I sat there and looked at that tape measure and I paused...
Thirty-five percent
Maybe because I'm approaching 39 this year...
Maybe because I know that the median life expectancy for someone with CF is now 44 years old...
Maybe because that number is the lowest I've seen and I pray it was just a fluke...
Maybe because in some ways I feel like I'm in denial about that number and I tell myself I don't function there...
Something had to be wrong with that machine in December, right?
Maybe they didn't calibrate it that day?
I mean, do people with a lung function at that number work full time? Do they "test" in to the advanced workout group? Do they have 98% SpO2 saturations when checked, on room air oxygen? Do they go over a year without an exacerbation that lands them in the hospital or on Home IV? Do they work full time while they're on Home IV?
Do they?
I've always been somewhat of an exception to the rule when it comes to my CF.
If it works for others, a lot of times it doesn't for me.
I pride myself in not letting CF hold me back. I like that I can proudly and boldly say, "I have CF, it does NOT have me!"
I've been thinking about my life, or rather, my mortality, since that appointment in December.
The quality of it vs the quantity...
The meaningfulness of it all...
The changes I am facing so that I can have both quantity and quality...
I paused and I thought, am I looking at the right measure? Should I have ripped this sucker way further down than where I did?
Then I added 5 more centimeters because I remembered Chris and I are going together at 86 of Euthanasia.
Because thirty-five is just a number on a computer.
Not really in a good or a bad way...it just throws you for a loop?
Like, you were rolling along and all of a sudden you find something out and you're like, "Huh? Really? I never would've guessed that?"
I'm talking about news about yourself, by the way.
I feel like I once wrote a blog post that started very similar to this. That time it was news about stuff you had lived your life thinking could never happen, and then all of sudden you were told something was a possibility. That time I was talking about Dr. Eigen telling me that it may be possible for Chris and I to have a baby biologically.
This time, it's about my lung function...
At church on Sunday, we were ripping our tape measures, and mine started at 38.5, and ended with the normal life expectancy for a woman, of 81. This was supposed to show us how much "time" we potentially have left on this earth. We were to be thinking about what impact we want to have with the time we have left. How will we make the time we have left meaningful?
I sat there and looked at that tape measure and I paused...
Thirty-five percent
Maybe because I'm approaching 39 this year...
Maybe because I know that the median life expectancy for someone with CF is now 44 years old...
Maybe because that number is the lowest I've seen and I pray it was just a fluke...
Maybe because in some ways I feel like I'm in denial about that number and I tell myself I don't function there...
Something had to be wrong with that machine in December, right?
Maybe they didn't calibrate it that day?
I mean, do people with a lung function at that number work full time? Do they "test" in to the advanced workout group? Do they have 98% SpO2 saturations when checked, on room air oxygen? Do they go over a year without an exacerbation that lands them in the hospital or on Home IV? Do they work full time while they're on Home IV?
Do they?
I've always been somewhat of an exception to the rule when it comes to my CF.
If it works for others, a lot of times it doesn't for me.
I pride myself in not letting CF hold me back. I like that I can proudly and boldly say, "I have CF, it does NOT have me!"
I've been thinking about my life, or rather, my mortality, since that appointment in December.
The quality of it vs the quantity...
The meaningfulness of it all...
The changes I am facing so that I can have both quantity and quality...
I paused and I thought, am I looking at the right measure? Should I have ripped this sucker way further down than where I did?
Then I added 5 more centimeters because I remembered Chris and I are going together at 86 of Euthanasia.
Because thirty-five is just a number on a computer.
Saturday, January 16, 2016
I'm back!
It's been a while...and I've missed you.
Apparently some of my friends have missed my blog too, because I mentioned it at one point on Facebook and they were all, "YES, please blog again!"
So here I am.
I'm not even going to try to update from the last time I blogged. It's been too long.
Life is good.
God is good.
And I'm excited to be back and see what 2016 brings us!
Apparently some of my friends have missed my blog too, because I mentioned it at one point on Facebook and they were all, "YES, please blog again!"
So here I am.
I'm not even going to try to update from the last time I blogged. It's been too long.
Life is good.
God is good.
And I'm excited to be back and see what 2016 brings us!
Thursday, March 13, 2014
It's been a year!
It's been a year.
A year from the call that turned our world upside down.
A year exactly, from the day we brought our sweet little Bert Gert home.
It's been a year, since Chris became a Dad.
It's been a year, since I became a Mom.
It's been a year!
It seems like longer, but at the same time it seems like it was just yesterday.
Our lives have changed so dramatically.
I've learned a lot this past year.
Want to know the Number 1 thing I've learned?
I still have NO clue what I'm doing as a Mom!!!!!
Yes, I know more now, than I did a year ago, but I still don't really know what I'm doing.
And to be honest, I think it will always be like this to some degree ;0)
Something I do know...
I know how to be B.G.'s Mom.
I know what she's saying when she asks for "mulk", or for "takes", or tells me "I Paya'!"
I know that "Bubbles" means she wants to watch Bubble Guppies.
I know her favorite person in the world is her Papaw!
My heart skips a beat when she yells for the duckies and runs to our bedroom to get them. (I sincerely can't wait to get a call from her teacher that says, "B.G. told us her brother is, Sexy!?!?!?!?!")
I am the proudest Momma on the planet when she prays aloud with us at night or at the table, says "Amen," and comes up to me at random times, grabs my leg, kisses it, looks up at me and says, "I yuv you!"
There will always be new things to learn and discover with her.
We will always have moments that frustrate us, that drive me to run into the bathroom, shut the door, and pray that we can make it through the rest of the afternoon.
We'll always be reinventing how our days look, because one moment she'll love something and the next she will want nothing to do with it.
We'll constantly be growing into our roles, as Mommy and daughter (and Daddy for Chris), and what our family looks like.
But the best part of this is that we will get to learn and grow and do all of these things together.
It's been a year...
It's been a GREAT year, and we're so thankful we get to call ourselves a family!
A year from the call that turned our world upside down.
A year exactly, from the day we brought our sweet little Bert Gert home.
It's been a year, since Chris became a Dad.
It's been a year, since I became a Mom.
It's been a year!
It seems like longer, but at the same time it seems like it was just yesterday.
Our lives have changed so dramatically.
I've learned a lot this past year.
Want to know the Number 1 thing I've learned?
I still have NO clue what I'm doing as a Mom!!!!!
Yes, I know more now, than I did a year ago, but I still don't really know what I'm doing.
And to be honest, I think it will always be like this to some degree ;0)
Something I do know...
I know how to be B.G.'s Mom.
I know what she's saying when she asks for "mulk", or for "takes", or tells me "I Paya'!"
I know that "Bubbles" means she wants to watch Bubble Guppies.
I know her favorite person in the world is her Papaw!
My heart skips a beat when she yells for the duckies and runs to our bedroom to get them. (I sincerely can't wait to get a call from her teacher that says, "B.G. told us her brother is, Sexy!?!?!?!?!")
I am the proudest Momma on the planet when she prays aloud with us at night or at the table, says "Amen," and comes up to me at random times, grabs my leg, kisses it, looks up at me and says, "I yuv you!"
There will always be new things to learn and discover with her.
We will always have moments that frustrate us, that drive me to run into the bathroom, shut the door, and pray that we can make it through the rest of the afternoon.
We'll always be reinventing how our days look, because one moment she'll love something and the next she will want nothing to do with it.
We'll constantly be growing into our roles, as Mommy and daughter (and Daddy for Chris), and what our family looks like.
But the best part of this is that we will get to learn and grow and do all of these things together.
It's been a year...
It's been a GREAT year, and we're so thankful we get to call ourselves a family!
Friday, September 6, 2013
Heavy Heart
As usual, I got up this morning after my 4am treatment, turned on my phone and started my morning routine.
I didn't really know him.
I never actually met him.
We never spoke outside of facebook.
But my heart hurts...
for him...
for his family...
for his fiance...
for the CF Community in general.
As I get older, now that I'm a wife and a Mom...my health and making it a priority is very different than it used to be.
And not that I never thought it wasn't a priority before, it certainly was.
But I see things a bit differently now.
I probably shouldn't.
I should have seen my health, and the things I do as being important for other reasons before.
But I'll be honest.
Before, I looked at what I did (or didn't do) to maintain my health as something that was only going to hurt me, no one else.
It's true that my failing health would primarily hurt me, but secondarily it would hurt my parents, sister, brothers-in-law, sisters-in-law, nieces and nephews, husband, and now Bert Gert.
Recently I've been very intentional about doing everything I'm supposed to do.
Since my freshmen year in college (when I went in the hospital after getting UBER sick), I have been extremely purposeful about doing my treatments daily. It started at once a day for 30 minutes, then I bumped it up to twice a day...then my timer on my vest broke, so it was 45 minutes twice a day.
If I was sick, or coughed a lot, I'd do it more.
I did my inhalers and my nebulizer treatments as well.
I was diagnosed with CF related Diabetes my last year in college.
I've never been good at monitoring this. Partly because it really only seemed to be an issue when I was sick....and partly because, Seriously???? It's just one more thing to have to do.
So I've been very intentional now about taking my enzymes when I eat, and checking my blood sugars and taking insulin now.
I'm playing softball with a church Co-ed league, and I'm working out twice a week after school on top of that. I hope to increase this once I get used to that schedule to begin with.
I'm pretty much a HOT WET MESS...but I'm trying to work on that.
In general, I don't feel bad.
I think I'm pretty "healthy" for a 33 year old living with CF.
But I don't always do the best job at maintaining the best health for me.
I'm trying hard.
I have to!
Please don't misunderstand me...in no way do I mean to imply that Kyle didn't do what he was supposed to do, or should do to maintain his health.
I know he did.
CF is a part time job to begin with.
And even when we do EVERYTHING, exactly right, and go above and beyond....
We still get sick...
We still cough for a few hours during and after treatments (at times)...
We still have to go on IV medications...
We still have to go in the hospital at times...
And that SUCKS!!!!!!!
There's nothing worse than feeling like you're on top of things, doing everything you're supposed to, trying your best in that moment, and finding that your Pft's have dropped.
CF tries everyday to break us down.
to suck the life out of us.
It never stops...
So we can't ever stop!
Dear Kyle,
I didn't know you personally...but we had a special connection that only people with CF have. We know personally the ups and downs of living with CF. Fighting every day. Fighting on the good days and fighting on the bad. Doing whatever we can to breathe a little easier, to put on a little weight, to live as normal a life as we can, in spite of all the abnormal things we deal with that others don't. I'm sad for you, that your new lungs didn't work out like you, I, and everyone in this special community hoped they would. I'm sad for your family, that they've lost someone so very precious to them. I'm sad for the CF Community, and that we have lost another wonderful member of our family.
At the same time, I'm so happy that you are now breathing easy. I'm so happy that a nasal cannula, nebulizer, percussion, FEV1, and a million other CF related things are no longer a part of you. I'm so happy that you now have the ability to do everything your gunk filled CF lungs tried to hold you back from.
Breathe easy my friend. Run, jump, dance, paint, enjoy the pure oxygen and deep, full breath of life that you now get to experience. Oh...and put in a good word with God, ask him to bring a cure fast.
Love,
Holly
To help find a cure for Cystic Fibrosis, please visit www.cff.org to make a donation.
But this morning, instead of all the usual happy things hitting my facebook feed, I saw quite a few sad posts.
Posts that weren't from my friends...they were from friends of one of my Facebook friends.
The CF Community lost another precious life.
I didn't really know him.
I never actually met him.
We never spoke outside of facebook.
But my heart hurts...
for him...
for his family...
for his fiance...
for the CF Community in general.
As I get older, now that I'm a wife and a Mom...my health and making it a priority is very different than it used to be.
And not that I never thought it wasn't a priority before, it certainly was.
But I see things a bit differently now.
I probably shouldn't.
I should have seen my health, and the things I do as being important for other reasons before.
But I'll be honest.
Before, I looked at what I did (or didn't do) to maintain my health as something that was only going to hurt me, no one else.
It's true that my failing health would primarily hurt me, but secondarily it would hurt my parents, sister, brothers-in-law, sisters-in-law, nieces and nephews, husband, and now Bert Gert.
Recently I've been very intentional about doing everything I'm supposed to do.
Since my freshmen year in college (when I went in the hospital after getting UBER sick), I have been extremely purposeful about doing my treatments daily. It started at once a day for 30 minutes, then I bumped it up to twice a day...then my timer on my vest broke, so it was 45 minutes twice a day.
If I was sick, or coughed a lot, I'd do it more.
I did my inhalers and my nebulizer treatments as well.
I was diagnosed with CF related Diabetes my last year in college.
I've never been good at monitoring this. Partly because it really only seemed to be an issue when I was sick....and partly because, Seriously???? It's just one more thing to have to do.
So I've been very intentional now about taking my enzymes when I eat, and checking my blood sugars and taking insulin now.
I'm playing softball with a church Co-ed league, and I'm working out twice a week after school on top of that. I hope to increase this once I get used to that schedule to begin with.
I'm pretty much a HOT WET MESS...but I'm trying to work on that.
In general, I don't feel bad.
I think I'm pretty "healthy" for a 33 year old living with CF.
But I don't always do the best job at maintaining the best health for me.
I'm trying hard.
I have to!
Please don't misunderstand me...in no way do I mean to imply that Kyle didn't do what he was supposed to do, or should do to maintain his health.
I know he did.
CF is a part time job to begin with.
And even when we do EVERYTHING, exactly right, and go above and beyond....
We still get sick...
We still cough for a few hours during and after treatments (at times)...
We still have to go on IV medications...
We still have to go in the hospital at times...
And that SUCKS!!!!!!!
There's nothing worse than feeling like you're on top of things, doing everything you're supposed to, trying your best in that moment, and finding that your Pft's have dropped.
CF tries everyday to break us down.
to suck the life out of us.
It never stops...
So we can't ever stop!
Dear Kyle,
I didn't know you personally...but we had a special connection that only people with CF have. We know personally the ups and downs of living with CF. Fighting every day. Fighting on the good days and fighting on the bad. Doing whatever we can to breathe a little easier, to put on a little weight, to live as normal a life as we can, in spite of all the abnormal things we deal with that others don't. I'm sad for you, that your new lungs didn't work out like you, I, and everyone in this special community hoped they would. I'm sad for your family, that they've lost someone so very precious to them. I'm sad for the CF Community, and that we have lost another wonderful member of our family.
At the same time, I'm so happy that you are now breathing easy. I'm so happy that a nasal cannula, nebulizer, percussion, FEV1, and a million other CF related things are no longer a part of you. I'm so happy that you now have the ability to do everything your gunk filled CF lungs tried to hold you back from.
Breathe easy my friend. Run, jump, dance, paint, enjoy the pure oxygen and deep, full breath of life that you now get to experience. Oh...and put in a good word with God, ask him to bring a cure fast.
Love,
Holly
To help find a cure for Cystic Fibrosis, please visit www.cff.org to make a donation.
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