Cystic Fibrosis... or CF.... what really is it?
I have been struggling with people not really knowing what CF is. I had a neighbor stop us to chat the other day as we returned from our family walk. He commented on how big Brandon is getting.. then he said "So he is probably growing outta that thing he has huh?" I told him "No he will always have it and it gets worse as he gets older". It is a comment that has stuck with me for a while now and I cannot get it to leave my brain. I believe its because it was not intended as a hurtful comment nor did I take it that way, but as time goes on I find it sad that people don't get it. I know I have blogged about this and yet it still is heavy on me. How else are you out there gonna get it if I don't show you.
I spend a good part of my days and life being positive for Brandon and my family. To often us Cf families don't like to think about or even talk about CF in a negative light because simplicity is bliss. I guess I think about when I have been in pain or even better getting a tattoo I had to think about other things than the pain to get through it. If I spent the whole time talking about how much the needle hurt and the artist was being a little heavy handed then I would either want to hit the artist or quit in the middle. Most of the time you talk about things that have nothing to do with what is going on at the moment. Other times you talk about the positive things, like how you hope it will turn out in the end. People who actually have CF have to be able to learn to ignore pains often that you may not even know they are struggling. I guess this is why I really study Brandon, I know as of now he cannot tell me and as he gets older he won't tell me every time he is struggling or hurting. Most of the time we only really know is when its gotten bad enough to earn a 14 day stay or longer "in the hole" as many jokingly call it. This is where IV medications are given because oral medications are not enough to kill off the bacteria attacking their lungs. During this time they are also struggling to have an appetite so they must usually force themselves to eat, children often refuse to eat and many time even through daily care at home must have feeding tubes to supplement the nutrients their body needs. Many times even if the person does eat it may not be enough which can be extremely frustrating and they have no other option. (I have recently written a guide for parents to fight through the food issues and hopefully avoid a feeding tube.) Also while in the hospital IVs can only stay on for so long, so they start their stay with an IV to later be given a PICC line:
A PICC is inserted in a peripheral vein, such as the cephalic vein, basilic vein, and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava or cavoatrial junction.
PICCs are usually inserted by radiologists, doctors, physician assistants (in the USA), radiologist assistants (in the USA), or specially trained certified registered nurses using ultrasound, chest radiographs, and fluoroscopy to aid in their insertion and to confirm placement. PICC insertion is a sterile procedure, but does not require the use of an operating room. When done at bedside, (that is, in the patient's room), a suitable sterile field must be established and maintained throughout the procedure. For this reason, visitors are normally requested to leave the room until the insertion is complete.
The insertable portion of a PICC varies from 35 to 60 centimeters in length, that being adequate to reach the desired tip position in most patients. Some lines are designed to be trimmed to the desired length before insertion, others are simply inserted to the needed depth with the excess left outside. As supplied, the line has a guide wire inside. This wire is provided to stiffen the (otherwise very flexible) line so it can be pushed through the veins. The wire is removed and discarded after insertion.
I have heard variations of how this affects people who are frequent fliers so to say on the PICC lines. Brandon's first PICC he was not sedated enough which resulted in 5 tries of insertions and a hamburger resemblance on the failed arm. Also these things are fraqile so B has broken one and even has a scar from receiving a central line in the groin. I have talked to parents of little ones who often have issues of their little ones ripping out PICC lines. I have talked to adults who have received so many that they have many collapsed veins and or numbness and rejection from many veins. Often people consider getting a port a cath, which is a line that is connected to a button so to say that is buried under the skin. this way when it needs accessed it is there and just need to have a needle break through the skin each time. It is often used in cancer patients or others who receive frequent IV's. This to some is still a hard choice and for many can cause them to be selfconcious.
So daily while at home CF still affects them more than you, or even I for that matter can know. I try to often think about the times I have had a horrible sinus infection and I have all that build up of mucus in my body... yeah that is normal and extra thick for someone with CF. I think of the times I have had bronchitis and it felt like it was hard to breathe and that there was junk stuck inside my lungs that no matter how hard I tried it wouldn't go away. How often I coughed and surprisingly it felt good and hurt at the same time when I coughed because It relieved that nagging tickle in my throat and lungs of needing to release the gook, yet when you are always coughing it irritates other areas of your throat and chest.. Yes this to is normal for CF. I think about when I go running and I get that burning sensation and I find it difficult to catch my breath, so I stop and take in some deep breaths and realize someone with CF doesn't get to stop and "catch" their breath. I think of someone drowning and realize that if I run that thought in slow motion minus the water I am sadly looking at CF's destruction it has on the lungs....
How is this so? The easiest way to describe it is the gene that doesn't work regulates the salt and water in our body. When you think of a frog and they have the mucus coating that is sticky, which is how they can shoot their tongues out and catch flies. We all have a mucus type substance in our body that travels through many channels and organs, such as the lungs and pancreas. Our bodies regulate this mucus to make it the right consistency to carry the things the body needs with out holding onto too much. Someone with CF has that regulator broken. The salt which breaks that mucus down is sent to the wrong place and leaves the system through the flesh, which is why they will taste really salty when sweating. At times they loose way to much salt from their bodies, so when they are hot and sweaty they are advised to have a little salt. Because this is broken the mucus in their bodies not only catches the flies, but then becomes too sticky and can't let it go.. any bacteria or dangerous attacker can hang on quite easily. Also because of how heavy and thick it is it doesn't make it out of the body as it is supposed to. Filling every duct and blocking the body from releasing other essential things, such as enzymes in the pancreas to digest food. Which they must take supplemental enzymes to digest their food. Over time and as someone with CF gets older these organs tend to become damaged and scarred. If you can imagine your lungs are two buckets. As time goes on these buckets get filled. Every morning and night you empty these buckets but there is always things left behind, slowly coating more and more of the open space in the buckets. If one is not good about emptying their buckets they will sooner not have room for what they need (air). Every time they have an attack there is possibilities of severe damage and when this happens we will use a rock to represent the space it damaged so between rocks and mucus slowly filling the buckets eventually there is no room left.
Now sometimes people are blessed with new buckets (lung transplants) to start out fresh and begin the process over again, yet they get to hopefully add many, many years on to their lives. Also This lung issue is not to be compared to asthma, even though it may sometimes look like it. When an asthma attack happens the bronchials close and tighten making it hard to breath until the attack is over, although many people with CF do also have an attack on the brochials the area of concern is the lungs themselves that slowly deteriorate over their live. People with CF do massive amounts of therapies to try to force out as much of that sticky mucus as possible. They take antibiotics daily to help the everyday intruders that their bodies are unable to defend against. They take many medications to help with eating and reflux, and SO much more. They have many things that break down and do not work because of all the other things attacking them. Someone with CF fights daily to live half of the projected life the rest of us are said to expect. Most people with CF are used to coughing, shortened breathing, tightness and shooting pains in the chest, gas, bloating, indigestion and stomach pain, and way more than I could ever describe. They are plagued with enough things that many of us would take off work for, and as time goes on forces them to not be able to work with as much ease, whether its because of frequent sickness, long hospitalizations, employers not understanding CF and treating them as if they are liers or lazy. Also many adult CF'ers struggle with medical insurance and often times are not covered for many things. CF is not taking as serious as cancer or other more understood or common medical conditions. People talk alot about Cancer because it is well known, anyone you meet most likely knows one or more people who have struggled with, died from or survived cancer. Cancer is caused from so many things and in so many parts of the body, cancer can hit you at any age and can take you at any age. You can suffer for years or even die before being diagnosed with cancer. It is Horrible, I have lost many people I know to cancer. For someone to come to you and say my child has cancer everyone knows what it is and everyone sympathises and is there to rally and support. When you tell someone my child has CF, even if they stay to listen to what CF is in the short, they say that's to bad and walk on more often than not. Now I have a hard time with this because it is a double edge sword. Do I want more people to know about CF so it is taken serious and understood as the horrible destructive disease that is genetic and incurable...yes, but at what cost is that gonna be? I do not wish there were more people with CF so others can understand it, So what is a mom to do? How do I save my child without wishing more people to suffer? How do I get people to understand and care even though it doesn't affect them in any way?
CF does suck, it sucks everyday from day one from a medical and physical standpoint for those who suffer from it and it sucks for those who love someone with it to not be able to take it away or control the inevitable. So we all just focus on the positive things and carry on, we have all learned things about life and how precious it is. We all know that CF doesn't control your soul, your heart, your faith or your you-i-ness, only you control that. This is why the most common statement is found.."boy I never knew they were really that sick" because it is just a body, a very earthly thing that will not come with them in Heaven. They are not sick, their body is.
Monday, July 26, 2010
Friday, July 23, 2010
Simplicity is bliss.
So this morning I had a lot on my mind. I really wanted to revert back to my old ways and be angry, possibly even a little back at ya attitude, but I thought before I spoke. Haha, remember when our parents and teachers and possibly even other people said you need to think before you speak. I did it, I have been doing it lately a lot. I think when we get let down or hurt we tend to take things so personal with out a moments consideration of that other person.
As we prepare for this move there is a lot of work and a lot we need help with. Its hard to find good and free help. I miss the days that I never got to be apart of when your neighbors helped to help. I miss when someone said they were family they were family in action. I have to sit and wonder what is a "family"? What is a "friend"? Are you just an acquaintance? I get to caught in peoples "words", I want to believe what people say for what it is. I think we are all so busy that we forget that we committed to a relationship on whatever level. I know in the past I have lost many of people in my life because I took them literal in their promise of relationship. Once they did not meet that qualification I was badly hurt because their promises and actions did not match. I guess I have been rather tough on people. But then I have to ask am I really being tough because I expect those who make a promise to me to keep it? At what point are you just holding someone accountable? I think people these days want the credit without the work. Maybe I am old school, maybe I am naive in thinking people should have to prove in their actions. It hurts less to take someone for their actions more than their words. I remember hearing once that people will tell you who they are if you are willing to listen. I guess it is a horrible thing to ask people who love us to help us leave them. I don't want to claim that it is my favorite thing to ask for. I am able to see who really cares about us at least.
I have been praying alot to take the right road, and be only kind with my words. Many hurts are there if I let them, but that is the thing. I can stop them from hurting by my choice of thoughts. It is not my right or place to judge another's actions. I really do believe that others are to busy and have other things going on, so that is ok. I am not denying the fact that people are unable because their time is dedicated elsewhere. The only question I have is, if time is never dedicated to a person, then how can you claim friendship or even more being of family? I think we all have great intentions, yet we often fall short of a promise we have made. I know I have been guilty of this my self, which is why after thought and debate over and over in my head I realize I must have forgiveness, mercy and if possible even grace. I have to get an even heavier heart when I think of how many times we may fall short in our relationship with the Big Guy Upstairs. How not one time has he said " I am done" Not only that but he even shows us much grace by saying, " I know you forgot to invite me to dinner or thank me for paying the bill, but here is dessert!". This is the moment I am fighting back the lump in the throat and the heavy tear in my eye. So yes we may need to listen to the wiser when told to make a promise and intend to keep it. Even if that means not making that promise at all. I think we take this serious when we promise something easy like, "sure you can borrow my movie" or even "I would love to meet you for coffee and chat" these things are fun and or easy to do, I am sure you can think of many other scenarios. We are great givers of convenience, its the selfless giving that really counts, the kind where there is no self gain.
I find it refreshing when I do meet those people who are kind for no self gain. Who truly and unconditionally love to serve or even just love to love others. I took a step back today to not think of the negative, hurtful things that really aren't that big. I wanted to think of the great and positive things that many people do and possibly even think about that I don't even know. I have to give my church great props at being filled with great and kind hearted people. When it came to churches my life has been filled with disappointments, so to find a great one, I feel truly blessed. One thing that made my heart melt this week was the out-a-the-blue message I received from one of the members, who I know but not to well. She told me she read a book about a little girl with CF, she had a grander understanding of what our family goes through. She was very kind through this message and it brought me to tears. I know not everyone is gonna go and read a book to understand Brandon's battle and what our family goes through because of this disease. I can even be understanding as to why many people don't need to know more. I also want to make it clear that when people do understand only then can they truly get it. Many people with this disease are just wanting people to "get it". We hear to many comments, like "so now that your boy is getting older is he growing outta that thing?" Such an innocent question, but also a very impossible thing. I am always delighted at the fact that others are concerned and care, but they still don't get it. This isn't asthma or allergies, it is not even in the same league. I have to hold my tongue when others around freak out about the small stuff, they want to give me crap like you have it so easy! I have to shed a tear and shutter at the one negative thought of the day because for once they are right, I do have it so easy, but my son does not. I would take it away and endure it for him if I could, but God designed me to be his mom. I can't spend a negative moment in something so big that I can not control. I am positive because there is no other way through this. I think before I speak, because it makes my life simpler. Simplicity is bliss
As we prepare for this move there is a lot of work and a lot we need help with. Its hard to find good and free help. I miss the days that I never got to be apart of when your neighbors helped to help. I miss when someone said they were family they were family in action. I have to sit and wonder what is a "family"? What is a "friend"? Are you just an acquaintance? I get to caught in peoples "words", I want to believe what people say for what it is. I think we are all so busy that we forget that we committed to a relationship on whatever level. I know in the past I have lost many of people in my life because I took them literal in their promise of relationship. Once they did not meet that qualification I was badly hurt because their promises and actions did not match. I guess I have been rather tough on people. But then I have to ask am I really being tough because I expect those who make a promise to me to keep it? At what point are you just holding someone accountable? I think people these days want the credit without the work. Maybe I am old school, maybe I am naive in thinking people should have to prove in their actions. It hurts less to take someone for their actions more than their words. I remember hearing once that people will tell you who they are if you are willing to listen. I guess it is a horrible thing to ask people who love us to help us leave them. I don't want to claim that it is my favorite thing to ask for. I am able to see who really cares about us at least.
I have been praying alot to take the right road, and be only kind with my words. Many hurts are there if I let them, but that is the thing. I can stop them from hurting by my choice of thoughts. It is not my right or place to judge another's actions. I really do believe that others are to busy and have other things going on, so that is ok. I am not denying the fact that people are unable because their time is dedicated elsewhere. The only question I have is, if time is never dedicated to a person, then how can you claim friendship or even more being of family? I think we all have great intentions, yet we often fall short of a promise we have made. I know I have been guilty of this my self, which is why after thought and debate over and over in my head I realize I must have forgiveness, mercy and if possible even grace. I have to get an even heavier heart when I think of how many times we may fall short in our relationship with the Big Guy Upstairs. How not one time has he said " I am done" Not only that but he even shows us much grace by saying, " I know you forgot to invite me to dinner or thank me for paying the bill, but here is dessert!". This is the moment I am fighting back the lump in the throat and the heavy tear in my eye. So yes we may need to listen to the wiser when told to make a promise and intend to keep it. Even if that means not making that promise at all. I think we take this serious when we promise something easy like, "sure you can borrow my movie" or even "I would love to meet you for coffee and chat" these things are fun and or easy to do, I am sure you can think of many other scenarios. We are great givers of convenience, its the selfless giving that really counts, the kind where there is no self gain.
I find it refreshing when I do meet those people who are kind for no self gain. Who truly and unconditionally love to serve or even just love to love others. I took a step back today to not think of the negative, hurtful things that really aren't that big. I wanted to think of the great and positive things that many people do and possibly even think about that I don't even know. I have to give my church great props at being filled with great and kind hearted people. When it came to churches my life has been filled with disappointments, so to find a great one, I feel truly blessed. One thing that made my heart melt this week was the out-a-the-blue message I received from one of the members, who I know but not to well. She told me she read a book about a little girl with CF, she had a grander understanding of what our family goes through. She was very kind through this message and it brought me to tears. I know not everyone is gonna go and read a book to understand Brandon's battle and what our family goes through because of this disease. I can even be understanding as to why many people don't need to know more. I also want to make it clear that when people do understand only then can they truly get it. Many people with this disease are just wanting people to "get it". We hear to many comments, like "so now that your boy is getting older is he growing outta that thing?" Such an innocent question, but also a very impossible thing. I am always delighted at the fact that others are concerned and care, but they still don't get it. This isn't asthma or allergies, it is not even in the same league. I have to hold my tongue when others around freak out about the small stuff, they want to give me crap like you have it so easy! I have to shed a tear and shutter at the one negative thought of the day because for once they are right, I do have it so easy, but my son does not. I would take it away and endure it for him if I could, but God designed me to be his mom. I can't spend a negative moment in something so big that I can not control. I am positive because there is no other way through this. I think before I speak, because it makes my life simpler. Simplicity is bliss
Friday, July 16, 2010
In need of a prayer
Oh Lord! Thank you for your blessings and thank you for your love..
Without out you I would crumble, I would be defeated in one step. I need your strength and I trust in your plan. You who are my father and my maker, only you know what I need.
Today I need you, just as I did yesterday and just as I will tomorrow. I can not go one day without you in it.
You are my rock and my foundation and I will build only on you. I will not question your plans yet accept them even in their darkest hours. I will not just praise you when things are great, but I will praise you when things are rough. I will acknowledge the grace and mercy you have bestowed upon me and I will thank you daily.
Praise to you and thank you, from the depths of my heart and soul!!
Amen
Without out you I would crumble, I would be defeated in one step. I need your strength and I trust in your plan. You who are my father and my maker, only you know what I need.
Today I need you, just as I did yesterday and just as I will tomorrow. I can not go one day without you in it.
You are my rock and my foundation and I will build only on you. I will not question your plans yet accept them even in their darkest hours. I will not just praise you when things are great, but I will praise you when things are rough. I will acknowledge the grace and mercy you have bestowed upon me and I will thank you daily.
Praise to you and thank you, from the depths of my heart and soul!!
Amen
Thursday, July 15, 2010
Wildflowers are enough
well today we moved one step closer! Every time one thing gets finished the lump in my throat welds up and I realize we are that much closer to our move. Don't get me wrong I am excited about this move and even more so, I know it is the right answer. For that one thing I am sure of more than anything else right now. How does one leave the life they know for a new life filled with uncertainty and fear. Ya I know, I know it is a God thing. This is the one reason I am able to keep faith and sleep at night knowing my choice is not really mine. I let God take the big stuff and he is leading me somewhere unknown.
I find it great that people are still willing to help us out and be my friend although they know where things are headed. I guess the realistic people that I am close to know I will not just leave and forget them. Yes it will put a strain on relationships but it will not end them. I learned this lesson this year very well. I have several people I am close to but one person that I am very close to is 34 hours away in CA. I believe I talk to her more than anyone outside my home. To be more exact I text and email her all day long sometimes. I learned you don't have to live close to be close. yes we want to see each other but we just have to work at making that happen when it can.
I guess its weird for me and everyone. No one wants me to go but every one understands why. If we could we would pick up everyone and everything and take it with us. I find it hard at times because although people understand they really don't. Only a few I know really get it. I wish I could explain it in the proper way.. I will try my best.........
One day there was a little girl filled with glee and love in her heart. She loved to wear piggy tails and pick flowers. the sunlight gleamed in her dirty blond hair. Her blue eyes sparkled and the grin across her face. Her mother loved to take her for walks every day and every day they crossed a beautiful meadow full of the rarest of flowers. In the front of the meadow at the gate of rod iron there was a sign that said "No Picking Flowers". Being that the little girl was to young to read she was beaming with the happiest smile around. She had her picking hands ready and said "mama, may I pick a flower please" Her mom was so sad to tell he "no you may not" the little girl accepted her mothers answer but ever so much yearned to pick those flowers. In an attempt to not upset her daughter this lovely mother picked another route to walk the following day. Hand in hand they had a great walk until they came across another meadow, this meadow had average flowers and no sign, it was well picked over with not much to offer her daughter. There were other children walking around with what must have been the flowers of this meadow and her daughter was once again saddened by the fact that there were none left for her. Finally after some research her mother took what she felt to be the longer and further route, no where near their home or comfort but it did seem to have a promising wild flower field that she may be able to offer her daughter what she so badly yearned for. As they approached this Field her daughters bright blue eyes had a twinkle that said it all. She looked up with joy and said " mama, May I pick these flowers" The mother replied " I am sorry I cannot offer you more darling, but yes you may pick these wild flowers, its not the best ones or the ones the other kids had, but you may pick as many as you wish". Her daughter replied, quietly in that meek little child voice, " mama, it may not be perfect or what the other kids had, but its enough for me".
The thing with this story is that as parents we may not always be able to give our children what they want or even need. Unfortunately for Brandon its a life matter. Being able to offer him just a little more than what he has is enough. I will never stop finding ways to improve the one part of his life that I can control, the quality! I may not be able to offer him perfection, or even what the others kids have, but I can offer him something more than what he has.
Having your child wake up in the morning and give you the biggest smile with those big brown eyes blinking at you and as they open their mouth to gasp..cough...cough.. sneeze..cough.. gasp, followed by some shallow breathing, it breaks your heart. I don't care who you are, you are willing at that point to do what ever you can to take that away. When you see your child in the hospital, you as a parent would do anything to prevent that from being a common occurrence. We do what we can where we can. I hurt and I am brought to tears often at the fact we are leaving, but I am also brought to tears by the fact that I am able to offer more to my son.
I find it great that people are still willing to help us out and be my friend although they know where things are headed. I guess the realistic people that I am close to know I will not just leave and forget them. Yes it will put a strain on relationships but it will not end them. I learned this lesson this year very well. I have several people I am close to but one person that I am very close to is 34 hours away in CA. I believe I talk to her more than anyone outside my home. To be more exact I text and email her all day long sometimes. I learned you don't have to live close to be close. yes we want to see each other but we just have to work at making that happen when it can.
I guess its weird for me and everyone. No one wants me to go but every one understands why. If we could we would pick up everyone and everything and take it with us. I find it hard at times because although people understand they really don't. Only a few I know really get it. I wish I could explain it in the proper way.. I will try my best.........
One day there was a little girl filled with glee and love in her heart. She loved to wear piggy tails and pick flowers. the sunlight gleamed in her dirty blond hair. Her blue eyes sparkled and the grin across her face. Her mother loved to take her for walks every day and every day they crossed a beautiful meadow full of the rarest of flowers. In the front of the meadow at the gate of rod iron there was a sign that said "No Picking Flowers". Being that the little girl was to young to read she was beaming with the happiest smile around. She had her picking hands ready and said "mama, may I pick a flower please" Her mom was so sad to tell he "no you may not" the little girl accepted her mothers answer but ever so much yearned to pick those flowers. In an attempt to not upset her daughter this lovely mother picked another route to walk the following day. Hand in hand they had a great walk until they came across another meadow, this meadow had average flowers and no sign, it was well picked over with not much to offer her daughter. There were other children walking around with what must have been the flowers of this meadow and her daughter was once again saddened by the fact that there were none left for her. Finally after some research her mother took what she felt to be the longer and further route, no where near their home or comfort but it did seem to have a promising wild flower field that she may be able to offer her daughter what she so badly yearned for. As they approached this Field her daughters bright blue eyes had a twinkle that said it all. She looked up with joy and said " mama, May I pick these flowers" The mother replied " I am sorry I cannot offer you more darling, but yes you may pick these wild flowers, its not the best ones or the ones the other kids had, but you may pick as many as you wish". Her daughter replied, quietly in that meek little child voice, " mama, it may not be perfect or what the other kids had, but its enough for me".
The thing with this story is that as parents we may not always be able to give our children what they want or even need. Unfortunately for Brandon its a life matter. Being able to offer him just a little more than what he has is enough. I will never stop finding ways to improve the one part of his life that I can control, the quality! I may not be able to offer him perfection, or even what the others kids have, but I can offer him something more than what he has.
Having your child wake up in the morning and give you the biggest smile with those big brown eyes blinking at you and as they open their mouth to gasp..cough...cough.. sneeze..cough.. gasp, followed by some shallow breathing, it breaks your heart. I don't care who you are, you are willing at that point to do what ever you can to take that away. When you see your child in the hospital, you as a parent would do anything to prevent that from being a common occurrence. We do what we can where we can. I hurt and I am brought to tears often at the fact we are leaving, but I am also brought to tears by the fact that I am able to offer more to my son.
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