After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
With Thanksgiving just around the corner, I have to remind myself constantly all that I truly am thankful for. This past Saturday made certain I be as thankful as one can be.
Andrea was taken to the ER by ambulance this past Saturday from what we would later learn would be an episode of a vasovagal syncope.
She had been fighting signs of a cold earlier in the week and by Friday it hit her full-fledge. She went to bed at 11 and didn't get up until 1 the next day. I asked her to start her sinus rinses and salt gargles, but she said she was ready to jump into the shower. This girl takes scalding hot showers and that in combination of not feeling well, having slept for 14 hours and gotten up with no food or drink for that long caused this vasovagal thing.
She felt dizzy while in the shower and decided to sit-down in the tub, but there was about 2 inches of standing water because our drain has been plugged. Being the "beyond her years" kind of girl, she thought to herself..."I better get out, if I faint I could drown." So she got out, held on to the sink counter top and called for me, then said "I feel faint". That's all I heard and then three loud thumps!
I'm sure you can imagine how I felt. I screamed for her and when I tried to open the door I couldn't because her body was blocking the door from opening. I screamed her name and started crying. She came to and was able to sit up long enough for me to get in, hug her and ask what was wrong. But before she could answer she passes out again. Luckily we were already on the floor, so I just kept holding her. She came to quickly and I told her I wanted to get her to her bed to lay down. So we gently stood up and down she went...like a sack of potatoes. I couldn't hold her so I went down with her, laid her on the floor and covered her up with a towel.
Jeff was downstairs watching football. I ran to the door, opened it and screamed for him to come be with Andrea while I dialed 911. He shot up like a rocket and went to her. Meanwhile, I've dialed 911 and they don't answer. It rang at least 8 times and no one picked up. I hung up and screamed "911's not picking up the fucking phone!", as I ran to my room to get dressed. That's when our phone rings and it's 911 calling back. I told them what was going on and they asked a bunch of questions to make sure Andrea was breathing. By this time Andrea had regained conscientiousness and asked if I could dress her. Jeff stayed with her on the bathroom floor as I dressed like she a two year-old again.
The paramedics arrived and took all her vitals. Everything seemed fine. They said they could take Andrea to the ER or we could call the doctor and ask him what to do. I told them to take her and I would ride along because Andrea fell the first time from a full standing position. She hit her head on the bathroom sink and on the way down she hit the door and also bit her lip. I wanted her looked over well and quickly and didn't want to chance having her faint again with mo medics around...so off we went.
3 hours later, more vitals taken and a full bag of fluids administered by IV we were back home with instructions for her to rest and take pain meds if needed. And I swear I aged like 10 years. I wanted to vomit and my eyes have been twitching ever since. BUT I'M THANKFUL, SO VERY, VERY THANKFUL because I still have my baby girl with me to love, hold, kiss and cry with. Sigh!
Not a happy camper...but thankfully all turned out well in the end. Whew!
So yesterday (11-2-11) we–and I mean we as in the entire world–were hit with the news of a new drug that will treat the actual defect of cystic fibrosis persons that carry the G551D mutation.
I immediately found the news clip online and posted it on facebook. I found a couple of news articles and posted it as well.
I posted about how huge this was and wanted to share it with everyone. And then the outpouring posts of support by family and friends came rolling in and I felt nothing. Absolutely nothing. I realized I was posting about it because it was something I should just do. I wasn't even feeling any emotion about it, I just did it. And I've been racking my brain wondering what the hell is wrong with me.
I'm not quite sure what it is but here are some thoughts:
I've known about this drug for years. I'm guessing almost 7 years ago I started getting emails about it and reading about it when I'd do some CF research on my own. I would skim through the announcements and delete it quickly. I remember thinking this was just the beginning and I was not going to get my hopes up because so many drugs never make it to the final stages of testing and getting FDA approval.
The drug that is working right now is only for a very small percentage of CFers...4% to be exact. This is a rare mutation and it is one that Andrea does not have. So this drug will not help her.
I'm afraid that after all the excitement winds down, we'll get hit with something we don't want to hear. I know this is 'the glass is half empty' way of thinking, but it's how I'm feeling at the moment.
I'm remembering a friend that lost his life to CF 8 years ago and I found out through his widow that he carried the G551D mutation. I feel so sad that this wonder drug didn't come sooner.
My emotions are starting to surface though. Slowly but surely I'm able to let the tears out and accept the good that all of this is. It took a third article I read today for my eyes to finally weld up with tears and it was a huge relief to let it all out.
Friends have been sharing the news too and that makes me cry. Two of them (that did more than most would ever do) are recalling the day they shaved all their hair off to raise money in honor of Andrea and I'm finally able to bawl recalling those days as well. I mean look at what all the hard work, volunteering, monetary donations have accomplished...GENE THERAPY! And I owe it to everyone that gave and gave tons over the past 10 years.
A friend posted on facebook the following "How do you thank someone for doubling your child's life expectancy?" The answer: I don't know, but I sure as hell will do so for the rest of my life!
The ugly is cystic fibrosis itself – the hideous
monster that attacks our children's lungs, pancreas, digestive system and more.
I hate it! I hate that it makes my child hurt. I hate that there's no cure. I
hate that no matter how well we try to control it, the monster attacks – without
warning – and leaves us exhausted from fighting it back into a cage, until the
next time it rears its ugly face again! I hate CF ... period!
The good and the bad...
Well you can't have one without the other. There
are a lot of good things about being in the CF club, and these good things are
what help me deal with the ups and downs that CF brings. But like I
mentioned, you can't have one without the other. Here are some examples:
Family and friends: when bad
news strikes you quickly find out who will be there for you and who won't. The
good part is that those that truly want to help DO. They are the ones that call
and ask how they can help. They send letters, emails, flowers and shower you
with love. They think of ways to help raise money. They donate lots of money.
They donate their time, volunteering hours throughout the year at multiple
events. They listen and hug you and cry with you and they definitely don't judge you!
Then there are those who can't (or won't) handle someone else's
hardships. They are the ones that get on your case for asking for help or
donations. They are the ones that will blame you for making them feel obligated
to give (as if I were to have that much power...I wish!). Many won't donate one
dollar to the cause of finding a cure. They won't ask how you're doing or ask
how they can help. But you know what? At least I know who they are, so I know
not to count on them; and in the long run ... it's okay. We're all different and
the biggest lesson I've learned about this area is to accept them as they are.
I may not like it, I definitely can't change it ... so I just accept it for what it is.
My husband: Jeff is the number one great
thing to have with me in the CF roller coaster ride. There are so many good
things about this man I can't list them all. He helps with anything and
everything I ask of him, from holding his own money-raising events to licking
envelopes shut for mailing campaigns. He puts up with all my crazy ideas and with
my mood swings. How he didn't divorce me within the first 3 years of learning
Andrea had CF is beyond me. I was one down and depressed mama and he was my
punching bag. He's a wonderful daddy and really helps teach the kids that there
are different ways of dealing with horrible news. He's my perfect counterpart,
with enough differences that we just work.
And what bad thing can I say about him and
CF? Is that he too has to deal with the beast that CF is. To see my man cry
over the thought of possibly losing his daughter to this disease was almost
unbearable. It was heart breaking to see him suffer, yet it was astonishing to
watch him move past it so quickly (in my opinion). I envied him so much and
still do to this day ... he handles bad news so much better than I do; when it
come to CF related things. Now, watch him deal with putting up the Christmas
lights AND that's a whole different story!
My children: Definitely more good than bad
here. Andrea has taught me more than I could ever have imagined a child could
do. She didn't have to deal with CF since birth, because she wasn't diagnosed
until she was 4-1/2. She took to it like it was nothing. Treatments, pills,
therapy sessions, and doctor visits were just one more thing to do and no big
whoop. She did everything she was asked of and to this day she's still very
compliant with her CF protocol. David (who does not have CF) was born with
sensory neural hearing loss and has had his own set of issues to deal with;
multiple surgeries with ear tubes, adnoids and tonsils, working with speech
therapists and sign interpreters, and intergrating into the hearing world. He
too has done all of this without much fuss and continues to amaze me daily.
Just like with their daddy, the bad thing here is knowing how trying it is for them to deal with all their special needs.
No matter how awesome Andrea is with doing all she needs to
do, she does have a day or two [a year] where it just becomes overwhelming and
she "lets loose" with lots of crying. To see her in such pain brings so
much sadness that it can be almost too much for me to handle. Thank goodness
for the husband, friends and family that come to the rescue. As for David, he
is just starting to understand what CF is and what it does to his sister. He
has days too where he feels very sad and wishes he could make everything
better. Luckily these days are far and few in-between.
Faith: Ah, a subject that can be
taboo ... but it's part of dealing with CF. I personally am full of faith. I have
so much faith in everything mentioned above, plus more. I have faith in the
world and what it provides. I pray daily to life, and thank life for all the
greatness it brings. I am surrounded by people full of faith too. Theirs may
be different than mine, but if it works for them I'm all for it. I personally
do not pray to a God (unless you want to call life God). I don't believe in a
God that provides us with good and bad. I cannot find it in me to
"feel/believe" that God is looking out for me, I've tried and tried lots but it's just not in me.
The things people have said to me in the name of
God has astounded me. I've been told that I need to go to church so no more bad
comes to our lives. Someone even made reference that because we didn't baptize
our kids it was God's punishment that Andrea got CF. And as much as they mean well, I've been told
multiple times that it was God's plan to give me a child with CF and that that
was a good thing. Well to someone who does not believe in a God that allows harmful things to occur in ones life ... it is definitely not a good thing to me.
We have had friendships fade because we don't share the same views in
faith/religion, and it's something that has troubled me. I try to not put forth
energy on this subject but it can be difficult, especially when I go out of my
way to respect their way of life but they can't reciprocate. It just plain
makes me sad.
CF friends: What would I do without my
CF pals? We help each other out so much. We meet for drinks and to let
loose of our CF woes. I have met some awesome CF parents and I'm so thankful to
have them in my life. They are the good, no the GREAT thing about CF. And what
about the cysters and fibros? They too are an awesome bunch of people to know
and have around. They are inspiring and so giving. Many blog or have their own
"foundation" or Internet support sites to help others in the same
boat. They help make my job as a mom to a CFer a little easier, because they
bring a truckload of knowledge and support I can't provide. The best, most wonderful thing about CF is the people you meet that live it or have it. I'm truly thankful for all of them.
Of course the bad about this is watching them deal
with CF during times of crisis. Watching parents hold their child as they take
their last breath of life (TEARS!!!), learning of those that are in the hospital A-GAIN,
hearing of those that are frightened and ready to give-up ... this ultimately has
to be the baddest of the bad. And as hard as I try to not think about this
aspect of CF, unfortunately it's there and forever will be ... until we find a
cure!
Me: Yep, me ... Susana Guadalupe Fernandez Rider. What good am I in the CF world? Well, I'm a great advocate for my children. I consider myself a decent fundraiser and a go-getter. I'm ready to do what it takes for CF yet know when to pull back if it's getting in the way of raising my children and being a good wife. I'm really good at asking family and friends to help out and thank goodness I have many that agree to do so.
And with all the good I do, I too suffer from the bad CF brings. The first 3 years with CF in our lives was horrible. I cried daily, I was rude, I snapped at the littlest of things. Oh how I wish I could find all those poor pharmacists that had to deal with me when medication errors would occur. I had a chip on my shoulder so big that it took a long time to knock that sucker off. Every once in a while it creeps back on but I'm better at knocking it back off. I still cry and think of the worse case scenario CF could bring. I know it's stupid, but I do it. I've allowed CF to consume me and it's a challenge to overcome. I figure I'll fight with these negatives off and on...so I'm grateful of the good I do have to help me through the bad.
Oh there's more I could add but I won't. I think I've blogged enough about the main ones. So until there's a cure for CF ...
I went to wash my face last night before heading to bed. As I looked in the mirror I saw a black smudge on my check and wondered what the heck it was. I quickly realized...it was Andrea's mascara. It had smeared onto me as I held her last night while she cried for a full hour. A full hour of crying because she was sad and angry with the news that she needs to start daily insulin shots. The doctors just aren't happy with the numbers from her glucose readings she did a week ago and before we start seeing complications arise, she needs to start this new regimen to keep her healthy.
And so here we go...another new and ugly norm added to Andrea's life. Added to all our lives really. Yes, I don't have to give myself shots and poke my finger daily to get sugar level reads, but I'll have to watch Andrea do so and I know the first few weeks will be heart breaking. This will affect our entire household emotionally, mentally and physically.
CFRD: cystic fibrosis related diabetes - I've known this acronym for years, since about the time Andrea was diagnosed with CF. I knew it could come knocking on our door, bags packed and ready to move in and for about 8 years we've been able to shut the door on its ugly face. But about two years ago it finally stuck its foot in the door; slowly pushing itself in and finally successfully moving in for good. Truly, an unwelcome guest!
CFRD is NOT type 1 diabetes. It's not even type 2. It's kind of a combination of the two and it occurs in about 78% of CFers. CF affects the pancreas because it blocks the pancreatic duct which sends enzymes to the digestive system to help with breaking down the food we eat. Andrea's pancreatic duct is fully blocked and thus in return causes problems to the liver. All of this leads to poor insulin function and voilà ...CFRD. It's a lot more complicated than this but it's the basic jest of it. If you really want to know more about it, just click here: What is CFRD?
Our next step is to schedule an appointment with the diabetes clinic and meet with a nurse educator. She will answer all our questions and show Andrea options for injecting insulin and teach her, Jeff and I how to administer the shots.
Andrea had a lot of questions last night. It was amazing watching her the full hour go from sad, to angry, to feeling sorry for herself, to an "I won't do it" attitude, to even wondering what's the point of continuing with all of her CF protocol. Eventually she came back to the strong, courageous Andrea I know and realized that things could be worse and that she's not alone when it comes to all of this. She mentioned her friends that have type 1 diabetes and that they've been dealing with it longer and so could she. I was at awe at how calming it was for her to acknowledge what her friends have to deal with, stating that one friend deals with frequent migraines, another has to do facial treatments to keep her face clear of severe acne, while another suffers from back pain. They may seem minor compared to her CF but non-the-less it helped her get past the "why me/my life sucks" feeling.
In the end, as much as I know I helped Andrea she--once again--has helped me even more. I learn a lot from this 15 year old and together we will get past this ugly hump!
Since I've started blogging, I haven't really vented about CF here. But after visiting a friend in the hospital today, I just feel the need to get some things out...
I met a young girl through her dad, Joe. Joe was a sweet man and adored his two daughters (H and S) and his wife (T). His youngest of daughters (S age 25) has CF and when I met her she had some mild complications but nothing severe.
Joe died a couple of years ago and if he were alive today he would be very sad. S has started having more complications within the last year and is in the hospital again. I finally went to see her. She looked tired but was in good spirits. Her mom was with her. I gave her a big hug...I can't imagine how she's feeling right now. Well, I can imagine...I guess that's why I'm venting, right?
The doctor's told S that she needs to start thinking about a lung transplant. They were also planning on sending her to stay at the University of Iowa hospital to get care from the adult CF team, since we don't have one in Des Moines.
I stayed about an hour and we talked lots. I hugged them goodbye and went to pick Andrea up. I knew I had to tell her about S and it just made me sad. You see, we really work hard at staying upbeat. At not letting the beast that CF is get to us. But alas the beast wins sometimes and today is one of those days of defeat.
Andrea took the news so-so. She asked some questions but she had that look like she didn't really want to hear what I was telling her. You see, last week during her CF clinic she learned more about the cirrhosis in her liver. The GI doctor had to increase the dosage of her liver medication since she's bigger and weighs more. Andrea waited a few days, then asked what all that meant and if it will get worse. It was hard explaining it to her, but it had to be done. She understands better but I know it must be difficult at her young age to absorb all of this. And now our friend S is possibly going to need a lung tx? It's a lot to take in in such a short time.
Lately there have been more hospitalizations of kids' that I know because I'm friends with their moms. Andrea knows most of them and has even friended one of them on Facebook. She asks about these kids often, so I know she thinks a lot about how CF affects them, and I'm sure she worries if what happens to them could happen to her. Oh how I hate that she has to worry about things like that!
My profile picture on Facebook is FUCF because that's what I keep repeating lately. I rarely say Fuck You CF...it's usually just Eff U CF. But I can honestly say that right now and probably for the next few days it will be...
As most of you know, part of the routine of a CFers life is to attend a CF clinic every 3 months. At the accredited CF clinic, Andrea meets with specialists to discuss how things are going with her and all her CF needs. This includes (for the most part) meeting with a pulmonologist, gastroenterologist, chest phyisotherapist, dietician, social worker and a pharmacist. We also always visit with a respiratory specialist and Andrea does what is called a PFT (pulmonary function test).
The purpose of a PFT is to get a reading of how her lungs are doing. They read the numbers of the FEV and FEV1 (forced expiratory volume). The FEV1 seems to be the one they really look at most (forced expiratory volume in the first second). Andrea started doing PFTs when she was 5 and we've been lucky that her FEV1 has always been high, usually above 100! Which means her lungs are doing better than most people that don't even have CF.
Here's a quick video of Andrea doing her PFT. This was shot in 2009...
Today (8/18/11) was an annual clinic visit. The annual visit consists of what I mentioned above plus lab and other tests: blood work to check vitamin levels, rule out infection, assess iron levels, check for liver disease, nutritional status, and CFRD (cf related diabetes). Andrea also has to have a chest xray and ultrasound of her liver, stomach, gall bladder, intestines, plus they do a glucose tolerance test as well.
We started our morning checking in at 7:00 a.m. to get paperwork ready for all the tests. We then went to start the first of a few vials of blood to be drawn. This time it was only 7. She must be fasting during this portion. She thens drinks a high glucose concentrated drink and must come back for more blood to be drawn 2 hours later. We left there at 7:30.
We headed to radiology and didn't have to wait long. First was the ultrasound, which takes about 20 minutes, then the chest xray, that took about 10 minutes. We were ready to head to get PFTs done.
The PFT room has changed a bit and they have a new computer system to run the tests. I waited in the larger room, just outside from where Andrea does her PFT. I couldn't believe what I was hearing. When she was doing the second of three standard breathing techniques, I turned to look because she sounded like a power horse. Her breathing sounded so great and when we got the numbers they proved it to be so. Her FEV1 was at her all-time highest of 119!
By the time we finished with PFTs and got to the CF clinic it was 8:30. Our appointment wasn't until 9:30 but they got is in within minutes. She got weighted again, and measured AGAIN, and had her blood pressure checked. We couldn't wait to tell everyone how PFTs had gone.
We met with the nurse first and she handed us a sheet of all her meds, to go over them and make sure all was accurate. I noticed it didn't include the calcium we started giving Andrea about a year ago. There are CF standards that is followed regarding meds one must take depending on symptoms one is having: miralax to help with bowel obstruction, pancreatic enzymes to assist with food fat absorbtion, azithromycin antibiotic to help avoid lung inflammation, singular and nazonex for sinus allergies, ABDEK vitamins to help maintain levels at a norm, ursodial to assist with her liver cirrhosis (inflammation and scarring), advair and xopenex for asthma symptoms, pulmozyme to keep mucus thin so it's easier to cough up and spit out AND on top of all of these--on our own--we give her omega 3/6 pills plus the calcium.
The best part of going to CF clinic is the team role we each play. Of all the meds mentioned above, the doctors did not prescribe the omega and calcium. There is no study saying this helps, but with research I've done I believe it helps overall and decided to start her on those...so the team makes note of it because it plays a huge role in her CF treatment. Whether they like what I do with Andrea or not, together we keep each other informed of her overall healthcare needs and proceed, keeping in mind that things may need to change depending on what transpires as she grows older.
We met with the social worker next. They're starting a new program with the CF teenagers to help them stay compliant with their CF protocol. It's available through Novartis, the makers of TOBI (inhaled antibiotic). Lucky for us, Andrea is very compliant...but through the questionnaire she filled out she did notice she needs to work on eating a healthier breakfast.
By the time we were done with the social worker it was 9:30 and time for the second of blood to be drawn. Normally it would have only been 2 vials more, but because Andrea volunteered to be part HOLA-CF they took a total of 5 vials more. This is a big deal, because Andrea does not like needles and she used to faint when having her blood drawn. But she was a trooper and did fantastic!
HOLA-CF is a study of Health of Latin Americans with CF and they are investigating potential genetic modifiers among Latinos with CF. Andrea gets $20 to participate in this study. BONUS!
Back we went to CF clinic. We met with Dr. Bacon our pulmo doc, then with Elaine our dietician, Dr. Sloven the GI doc and lastly with the nurse so Andrea could have her throat swabbed. This is to check for any bacteria growth inside the lungs. We left clinic with everyone elated of Andrea's PFT numbers and her overall excellent health. And just when we thought we were done...we had to go to the diabetes clinic and meet with our endocrinologist.
CF affects not only the lungs, but the digestive system, liver and pancreas. Because of that many CFers will get CF related diabetes. Thus the reason behind the glucose test. We met with Dan and Andrea's fasting numbers were great, under 100, but her non-fasting numbers were above the 140 range. It proves that Andrea's body has a hard time handling too much sugar and that we just need to avoid an overload as much as possible. Thankfully she does not need insulin and thankfully she's not a sweet tooth or a simple/carb junkie!
By the time we left the hospital it was almost noon. Five hours of meeting with docs, having lab work and tests done, talking and repeating ourselves over and over again. We went out for lunch, ran one errand, got home and we both hit the sack. Andrea napped for almost 4 hours and I for almost 5.
So there you have it. A very long-ass blog about our long-ass day during an annual CF clinic visit. I promise not to blog about it again, but I get asked a lot about how our clinic visits are, especially the annual ones. Now I have it in writing and can direct people to come read this. And if you've read this far...thank you! Thank you for your interest in Andrea's life and taking time to learn more about it.
I haven't posted anything since our 65 Roses countdown project ended on May 20th. After Great Strides I got busy with lots of work and getting ready for our trip to Peru.
Yes, I took the kids to Peru for a full month. Jeff joined us for 10 days. Going away for 30 days does take a lot of planning, making sure there's enough money to cover bills and to have during our travels; packing, scheduling tours, etc. are what everyone does when they travel. Then you add CF into the mix and boy is there a lot more planning needed.
Because we'd be gone for a full month, I had to make sure I'd have enough CF medications while we were there. Our refills are due around the 3rd week of the month, so I had to call our insurance company to make sure they would okay a 2 month refill. Luckily they did. I spoke with the pharmacy as well and all was set. Two months worth of miralax, advair, zithro, singular, albuterol, urso, abdeks, and pulmozyme were in check. I had one carry on strictly for meds and vitamins and one carry on for her vest and compressor.
I was prepared to be pulled aside during the security check and sure enough I was. I prepared the kids for this too, so they wouldn't be scared why we were asked to step aside and go with the TSA officer to look through our bags. I had all my paperwork in order...prior to leaving I had the hospital write a note on their letterhead, stating why Andrea needed all the things we were bringing to Peru. They also made a list of all her prescribed and over the counter meds she's on. I was prepared for everything except for the personal question the TSA officer asked..."bless your heart, how do you handle all of this? I have a hard enough time packing my babies diaper bag." I don't know why that caught me off guard. I guess it was the anxiety of traveling and I hadn't slept a lot...but I could barely answer her because I got choked up. I actually thought to myself "ya, how the hell do I do all of this?" I composed myself and gave her the "you gotta do what you gotta do" answer. I was glad to just be done with the bag check and get going to our gate.
Traveling with all the carry on bags was a lot of work. When I purchased the ticket I stated we'd have medical equipment with us and this actually helped a lot. The attendants checking our tickets knew of this and we were allowed to board before everyone else and get settled. It makes me uncomfortable to have people waiting in line on the plane while I put my carry ons overhead, so to do this calmly without a line of 20 people behind me helped a lot.
Once we arrived in Peru, it was time to unpack all the CF things and put them away, and find a place to keep the vest and compressor. My mom's place felt like home so this wasn't too bad. I had bought some transformers because the electricity voltage is a lot higher there, but what I bought could not be used for large items like the vest and compressor. Luckily my mom had one transformer we could use, but only one. So I used that one for the compressor so Andrea could do her pulmozyme inhalations, while I manually pounded her back during the 7-8 minutes it takes for her to inhale the pulmozyme. After she was done with that, I plugged the vest into the transformer and she finished her session using the vest machine. We eventually bought another transformer so I wouldn't have to pound her back by hand every night.
Traveling with pulmozyme can be tricky. It must be refrigerated and not exposed to sunlight, but it can be kept at room temperature as long as it's not more than 24 hours. I did have an ice bag I wrapped the meds in while traveling from the US to Peru, but when I traveled within Peru I would just pack it without the ice pack and as soon as we arrived at our destination I would place it in a fridge. This meant asking the hotel receptionist to place it in the kitchen of the hotel, because our hotel rooms in Peru did not come with an individual mini fridge. Cleaning the nebulizer was interesting as well. We started using the sterilization bags recommended by our CF clinic, which one places a small amount of water in the bag along with the nebs, then you just nuke it for 1-1/2 minutes and it's clean. But in Peru the water is not potable, so I had to make sure I had bottles of water to place in the bag with the neb, and get permission to use the microwave in the hotel kitchen as well. If there were no microwaves, then I'd have to get the okay to boil the neb. Luckily everywhere we stayed went above and beyond to accommodate our needs.
Jeff manually doing CPT while Andrea does her inhalation treatment of Pulmozyme
My darling husband helped me pack our things when we went to visit Cuzco. He was in charge of the vest and compressor. Our first night in Cuzco, as I went to unpack the vest and compressor, everything was there except the actual vest Andrea must wear to do the chest physiotherapy (CPT). I was fuming, but calmed down and nicely told Jeff that he would have to do the CPT manually during the entire trip in the "city of the Inkas". Five days of Andrea being manually pounded on her back and chest, Jeff was tired but did an excellent job. However, on day two of our trip in Cuzco I plugged the compressor into the wrong transformer and POOF the compressor "blew". We had just poured the pulmozyme into the neb and the tour guide was coming in two hours to pick us up for that days tour. For those of you who know pulmozyme, you know that that one dosage of liquid is worth almost $100 bucks. Off I went to the front desk and explained our problem. They called a nearby clinic and sure enough they said they had compressor we could use. Off we hurried to the clinic, after telling the rest of our traveling party the problem. We get to the clinic and there's no compressor! They had an oxygen type of tank machine and I had no idea how we could use that. The doctor on call had to evaluate Andrea (thank goodness for all the paperwork I brought with me describing her disease and medications), then he called a pulmo specialist and with the help of that doctor they were able to switch something around with the oxygen tank and it worked perfectly for the nebulization treatment. The doctor was interested in Andrea and asked a lot of questions. He was amazed at how well she looked and congratulated Jeff and I for our healthy daughter. We went back to the clinic two more times for her nightly CF routine and it ended up costing approximately $30 worth for the use of their "compressor".
At the O2 Clinica in Cuzco - Peru waiting to do an inhalation treatment
Andrea was amazed at how calm I was. She even asked me how I could stay calm and I answered, "I have to stay calm Andrea, because if I don't what would happen?" Andrea replied "you'll feel awful?" "Exactly!" I said "and I don't want to feel awful, so I choose to stay calm instead." Without knowing, this was a valuable lesson for her and for me. While maintaining calm, I was actually able to ask the right questions and provide the help my child needed to keep her going with her CF needs. I was a little concerned with my family waiting for us, our tour started over an hour late, but everyone was very understanding and our day ended up being a fabulous one.
Our trip to Peru was a trip of a lifetime. We enjoyed our full month spending time with family, visiting magical places like Machupicchu and Tarapoto, enjoying the beauty that nature gives us and eating fresh healthy food daily! But the best thing about this trip was the lesson Andrea got out of it...that despite having CF she is capable of traveling the world while keeping up with her CF protocol. That CF doesn't have to take control of her life...she's in charge and she alone has the right to live life to the fullest!
David and Andrea at one of the 7 wonders of the world: Machupicchu - Peru
Well the day has arrived. The 65 Roses countdown has come to an end with rose image #1. I can't believe I started this 65 days ago and mostly I can't believe I stuck to it...uploading a new photo of Andrea every day. I can't even stick to diet this long! I won't lie, it's been a tad stressful but mostly it's been a lot of fun. And the biggest thing that came out of all the efforts put forth from all our supporters is surpassing the $20,000 goal.
Yes, in just a mere four months, Andrea's angels raised over $21,000 for Great Strides 2011. This is the first time that this amount of money was raised in such a short period of time. We couldn't have done it with out the support of so many people who love and care for Andrea and want nothing more than to see her live a life full of happiness and good health.
Thank you 'angels'! You totally outdid yourselves and we are truly moved. I think this photo is a great way to end the countdown...don't you?
11 years ago when Jeff and I got the news that our baby boy was born with hearing-loss, I cried and I cried a lot. I couldn't believe I was looking at - what I thought was a perfect baby boy - wondering how could he have something wrong with him. I didn't want to believe that doctors could tell a baby could not hear well, but they were right and now at almost 11 years old, David can tell me himself.
6 months after getting the news about David, we learned that Andrea had CF. My very first thought was "why couldn't it be her hearing?!" Amazing how quickly one's perspective on something can change so drastically. Hearing-loss sucks! For a long time, taking care of David's needs was actually more time consuming than Andrea's needs, BUT the huge difference is...hearing-loss is not fatal - CF IS FATAL!
I cried practically EVERY SINGLE DAY for 3 years solid. The first year was the toughest. I would cry so hard while driving that I would have to pull over and gain control, fearing I could get in a car accident from all the tears flooding over my pupils. I know I went 3 months telling people I was "just there", when asked "how are you?" The day I answered "I'm good, how about you?"...I bawled! I couldn't believe I had answered that way, because I really wasn't sure yet if I was good. The next two years the crying was less intense, but it was daily and for the most part several times a day.
Well 10 years later I can honestly say that I still cry, but not daily. However, I still cry a lot but it can be about so many different things. I've become a lot more sensitive due to the kids' health concerns, but I'm also very sensitive of all the great things going on. I cry a lot more tears of joy.
The things people do for us - the Riders - in honor of my kids (primarily Andrea) just leaves me at awe. It just amazes me what a simple request for help can amount to. As you know I fundraise for the CFF in honor of Andrea and I ask for a lot from everyone. I ask for money, for time, for material donations, for people to fundraise, and so on. And even though I know I ask hoping to get a yes, I'm still always taken a back from those yesses. Here's a list of things people have done for us: (sorry if I left something out)
monetary donations in amounts of $2, $5, $10, $15, $20, $25, $50, $75, $100, $200, $300, $500, $1000+
volunteering for: the Great Strides walk, basket auctions, helping the CFF office with mailers, shirts, etc.
holding fundraisers: CF Fun Night, Locks Be Gone, Apple-pie auction, Tie Dye socks, Martini night, restaurant nights, Hot Coco sales, Cut-a-thons, garage sales, bake sales, Glazed Expressions night, Jar Wars, Game books, etc.
helping promote CF: Andrea's friends have done school assignments and given presentations. People have given speeches about CF for their college speech classes, designed bookmarks to hand out that explains CF, etc.
Yes, I've cried and still cry a lot. I mean, look at all the things people have done for us. How can someone not cry over things like that? I am one very lucky and very happy person and I owe that to so many people in my life! The gratitude is immense!
“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.” ~ Washington Irving
