So.. one of the challenges of the ecmo was the it basically took most of my blood out of my body, oxygenated it and put it back.. but I guess because the majority of my blood was outside of my body getting the oxygen, the blood I had left in me wasn't enough.. so I ended up needing a blood transfusion. (Disclaimer: I'm not actually sure if that's the reason haha but it makes sense to me, so that's what I'm going with.)
Needing the transfusion explained my chills, and the reason that I was more exhausted and had less strength than before. The problems with getting a transfusion:
-- It complicates the donor selection process.. making my donors even more limited.
-- the blood transfusion can't go through my regular IV (my port) so they'd have to access another vein for an IV .. and my veins are tiny to begin with.. and now they are lacking blood .. wasn't going to be good.
So anyway, God is nice (why should I be surprised?) and they numbed up my arm pretty hardcore, and tried to put in a mid-line -- which is basically a sturdier, longer lasting IV -- unsuccessfully. Then they decided to try to put an IV in my ankle because frankly there weren't a lot of options left to try for. I laid there trying to hold still the best I could while one of my sisters in Christ held her phone next to me just replaying a God song that really helped to calm me. (Thank you, Patti! I'm impressed at how long you could hold your arm up! haha!) Praying, and singing, and trying to fight off panic attacks, God opened up that tiny vein, and they quickly set up my transfusion, and I definitely felt the improvement of it the next day.
At the time I was too tired and sick to feel how scary this really was. I was obviously a priority patient for procuring (getting) lungs for because of how sick I was, and we hadn't received one single call.. not ANY potentials even.. and now we are putting another limit on the lungs that I can receive.. the possibility of getting lungs, at least to me, seemed to just be getting dimmer and dimmer.
Obviously we know that darkness was completely overwhelmed by the Light. Thank You, Jesus!
Anyway, I needed two blood transfusions -- one before transplant, and one after. Yesterday at the store, the clerk was wearing a shirt that said "donate blood" so I asked him if he had donated blood. He told me he had and I thanked him, telling him that a blood donor saved my life and I've had two blood transfusions..
This is one of the things that is slowly coming around to me about transplant. Everything was SUCH a big deal that I'm still just now getting around to feeling the impact and realizing what happened.
A blood donor helped save my life. I needed blood, and without it, I wouldn't have made it to transplant. So to all of you who donate blood and take it lightly; don't. You don't know how much of an impact this simple act has made upon someone -- you are literally donating blood to save lives. Who knows, maybe it's even one of you who saved mine. All I can say is thank you..
And then I got to thinking even more... A blood donor saved my life. Jesus is the first blood donor.. I know we hear this cliché all the time haha but that doesn't make it any less true. Needing transfusions really hit me hard and I am SO thankful for the person who decided to donate their blood one day.. Like really thankful, to the point of tears. And then I thought.. my salvation is SO much greater than anything on this earth.. this whole situation has made me realize how lightly I take my salvation without even knowing, and how gracious God is to us to not only keep saving us, but also to gently remind us how grand our salvation through Jesus Christ is.. which I still can't comprehend fully.
So thankful tonight (and every night) for my blood donors, and for the very first blood donor.
I've been saved physically through my donor's blood, and saved completely through Jesus' because God is love. <3
Thursday, September 26, 2013
Friday, September 20, 2013
Mission impossible
Sorry I have been off my blogging-game.. but now that I can actually do some things, the computer takes the back-burner :P
Anyway, so I left off at being on ECMO & trach/vent.
Ahh.. the ecmo days... where every single day felt like it drabbed on... when it was finally night, I couldn't sleep anyway, and every single day was almost exactly the same.. the only difference was each day seemed slightly (some days greatly) harder than the previous, and each day seemed to have a new problem.. it was almost like the days were competing with one another as to which day would be worse.
I had to "exercise". The first day of my PT (physical therapy) the therapist just wanted to get me out of bed and sit in a chair which was maybe 3 steps from the bed. Seems easy enough.. except they had to rewire all the contraptions that were hooked up to me, move around machines, and literally pull me up to a sitting position before I could even think about getting my feet on the ground. Let's just say... the first day wasn't my favorite. Not that ANY of the days were particularly on my "good times list", but the first day I barely made it to the chair -- and I felt super sick once I got there, only to need to return to the bed shortly after, and still feel sicker than before I had gotten up. So not only did I feel miserable, but I felt like I didn't accomplish what I was supposed to.. and for me.. that's a really huge deal.
That night I got chills and started shaking like my bed was on some kind of vibration mode. I had gotten a fever. Thankfully I was too tired and in-and-out of it to worry that much about it because they say if you have a fever, you can't get transplanted, so of course it was a concern that THAT night would be when the call came for my lungs, and we would possibly have to reject it. God saved me the heartache of that. The next day they didn't make me "exercise", thank You, God! lol that day might have been one of the only days when the therapist saw me smile as I happily told him that I wasn't allowed to exercise that day. The day after, however, was a different story. My temperature had only gone down to 102, my blood sugar just read "high" on the meter (meaning it was too high for the meter to calculate), but regardless -- I was told it was time to get back on my feet.. and this was truly the strength of God --- it took eleven adults, mostly men, to get me out of the bed, hold all my tubes, rewire everything, connect my trach to a portable system, and move my ecmo and vent machines -- but I WALKED! And JUST like God.. he never gives the minimum but always in abundance -- I walked 340 feet!! ON 2 DIFFERENT FORMS OF LIFE SUPPORT, WITH AN EXTREMELY HIGH BLOOD SUGAR, AND A HIGH FEVER!
Needless to say, even though my body physically felt awful still, I at least felt accomplished.. AND I became a celebrity amongst the MICU hahah! Doctors I didn't even know were popping in to say "we heard you're the girl who walked 340 ft!" Not only that, it showed my new doctors, who had only just met me, that I'm a fighter and not slacking off when they tell me this will help me.. but most importantly.. it showed my doctors, and doctors who weren't even mine, and patients, and anyone else who heard about it, that my GOD is STRONG! He can make the blind men see and the deaf man hear, and (sorry if this statement upsets anyone), while my body was dying, His Spirit trumped over that and gave me strength to not only do what was required, but to OVER achieve. My body was drained but His Spirit was overflowing.
Seriously... how nice is our God?
Not only that, the guy who was pushing my portable vent machine found the perfect setting for me which made my breathing a lot more comfortable than the previous setting! (Thank you, Paul from MICU-B!)
Peter walked on water in storm. He literally did something impossible because Jesus gave him the ability to. Now I didn't walk on water, obviously...(I wasn't even allowed to drink water, let alone try to walk on it :P) but walking 340ft with an entire entourage while your body is dying.. I'd say that's pretty close to impossible.. but then again..
"Nothing is impossible with God."
Luke 1:37
I did the impossible that day because God is love.
(And just wait.. more crazy, seemingly-impossible things are to come :) )
Anyway, so I left off at being on ECMO & trach/vent.
Ahh.. the ecmo days... where every single day felt like it drabbed on... when it was finally night, I couldn't sleep anyway, and every single day was almost exactly the same.. the only difference was each day seemed slightly (some days greatly) harder than the previous, and each day seemed to have a new problem.. it was almost like the days were competing with one another as to which day would be worse.
I had to "exercise". The first day of my PT (physical therapy) the therapist just wanted to get me out of bed and sit in a chair which was maybe 3 steps from the bed. Seems easy enough.. except they had to rewire all the contraptions that were hooked up to me, move around machines, and literally pull me up to a sitting position before I could even think about getting my feet on the ground. Let's just say... the first day wasn't my favorite. Not that ANY of the days were particularly on my "good times list", but the first day I barely made it to the chair -- and I felt super sick once I got there, only to need to return to the bed shortly after, and still feel sicker than before I had gotten up. So not only did I feel miserable, but I felt like I didn't accomplish what I was supposed to.. and for me.. that's a really huge deal.
That night I got chills and started shaking like my bed was on some kind of vibration mode. I had gotten a fever. Thankfully I was too tired and in-and-out of it to worry that much about it because they say if you have a fever, you can't get transplanted, so of course it was a concern that THAT night would be when the call came for my lungs, and we would possibly have to reject it. God saved me the heartache of that. The next day they didn't make me "exercise", thank You, God! lol that day might have been one of the only days when the therapist saw me smile as I happily told him that I wasn't allowed to exercise that day. The day after, however, was a different story. My temperature had only gone down to 102, my blood sugar just read "high" on the meter (meaning it was too high for the meter to calculate), but regardless -- I was told it was time to get back on my feet.. and this was truly the strength of God --- it took eleven adults, mostly men, to get me out of the bed, hold all my tubes, rewire everything, connect my trach to a portable system, and move my ecmo and vent machines -- but I WALKED! And JUST like God.. he never gives the minimum but always in abundance -- I walked 340 feet!! ON 2 DIFFERENT FORMS OF LIFE SUPPORT, WITH AN EXTREMELY HIGH BLOOD SUGAR, AND A HIGH FEVER!
Needless to say, even though my body physically felt awful still, I at least felt accomplished.. AND I became a celebrity amongst the MICU hahah! Doctors I didn't even know were popping in to say "we heard you're the girl who walked 340 ft!" Not only that, it showed my new doctors, who had only just met me, that I'm a fighter and not slacking off when they tell me this will help me.. but most importantly.. it showed my doctors, and doctors who weren't even mine, and patients, and anyone else who heard about it, that my GOD is STRONG! He can make the blind men see and the deaf man hear, and (sorry if this statement upsets anyone), while my body was dying, His Spirit trumped over that and gave me strength to not only do what was required, but to OVER achieve. My body was drained but His Spirit was overflowing.
Seriously... how nice is our God?
Not only that, the guy who was pushing my portable vent machine found the perfect setting for me which made my breathing a lot more comfortable than the previous setting! (Thank you, Paul from MICU-B!)
Peter walked on water in storm. He literally did something impossible because Jesus gave him the ability to. Now I didn't walk on water, obviously...(I wasn't even allowed to drink water, let alone try to walk on it :P) but walking 340ft with an entire entourage while your body is dying.. I'd say that's pretty close to impossible.. but then again..
"Nothing is impossible with God."
Luke 1:37
I did the impossible that day because God is love.
(And just wait.. more crazy, seemingly-impossible things are to come :) )
Monday, September 9, 2013
Moments and miles
We will continue with specific transplant stories after these short messages.
So I was listening to "Not for a Moment" by Meredith Andrews.. and that is basically the soundtrack for my life... well one of the soundtracks at least.
I was thinking of all the ways God blessed and brought me through transplant (or at least trying to.. there's so much He did that I can't remember everything! Add that to the stuff I don't even know about.. WOW) and it occurred to me...
"You were singing in the dark, whispering Your promise even when I could not hear."
That basically describes transplant.. hahah this would have been good in my last post -- about God holding onto me even when I wasn't holding on back. I love it.. I love that God keeps knocking and persuing us even when we don't respond. He knows our hearts and He knows what will bring us joy. (If you haven't responded to his knocking yet, do it! Trust me.. it's a lot better to do it sooner rather than later.)
"I was held in Your arms, carried for a thousand miles to show not for a moment will You forsake me."
I have been battling cystic fibrosis my entire life -- 23 (almost 24!) years. There was sooooo much that led up to transplant. It wasn't just these past months, but 23 years and 11 months worth of God holding me in his arms, not for even a moment forsaking me.
I did not like my pre-transplant hospital experience at all. I keep using the word traumatizing when I talk about it. But God gave me the victory over that! Now I can stand here and say (or technically at this moment, sit here and type :P) that He carried me the thousand miles, and I hope that it does show everyone that not for a moment will God forsake his children. "Even in the dark, even when it's hard, You will never leave." It may be hard. Maybe the hardest thing you've ever done (I know mine was).. but He never left, and He's not leaving now (or ever). And when you come out of whatever you're going through, (and you ARE going THROUGH.. not staying there) praise Him! I loved what someone said to me -- That God and I have a history.. and this was just going to be added to our memories of all the things He brought me through, and all our time together. Think about it.. Having a history with someone usually means a stronger, more in depth relationship with them. Who do you have more of a history with than the One who formed your head and counted your hairs, molded your hands and feet, and to this day pumps every beat of your heart? If you answered "no one" then BING BING BING you are correct!
I know this is short (well shorter than usual), random and a little blabby..but I like it. (wait, did I just describe myself? no wonder I like it :P)
What are some of yours and God's miles together? If you ask Him to help you think of some, no doubt your heart will be filled.
I have 23 years and 11 months worth of miles and victories with Jesus because God is love.
So I was listening to "Not for a Moment" by Meredith Andrews.. and that is basically the soundtrack for my life... well one of the soundtracks at least.
I was thinking of all the ways God blessed and brought me through transplant (or at least trying to.. there's so much He did that I can't remember everything! Add that to the stuff I don't even know about.. WOW) and it occurred to me...
"You were singing in the dark, whispering Your promise even when I could not hear."
That basically describes transplant.. hahah this would have been good in my last post -- about God holding onto me even when I wasn't holding on back. I love it.. I love that God keeps knocking and persuing us even when we don't respond. He knows our hearts and He knows what will bring us joy. (If you haven't responded to his knocking yet, do it! Trust me.. it's a lot better to do it sooner rather than later.)
"I was held in Your arms, carried for a thousand miles to show not for a moment will You forsake me."
I have been battling cystic fibrosis my entire life -- 23 (almost 24!) years. There was sooooo much that led up to transplant. It wasn't just these past months, but 23 years and 11 months worth of God holding me in his arms, not for even a moment forsaking me.
I did not like my pre-transplant hospital experience at all. I keep using the word traumatizing when I talk about it. But God gave me the victory over that! Now I can stand here and say (or technically at this moment, sit here and type :P) that He carried me the thousand miles, and I hope that it does show everyone that not for a moment will God forsake his children. "Even in the dark, even when it's hard, You will never leave." It may be hard. Maybe the hardest thing you've ever done (I know mine was).. but He never left, and He's not leaving now (or ever). And when you come out of whatever you're going through, (and you ARE going THROUGH.. not staying there) praise Him! I loved what someone said to me -- That God and I have a history.. and this was just going to be added to our memories of all the things He brought me through, and all our time together. Think about it.. Having a history with someone usually means a stronger, more in depth relationship with them. Who do you have more of a history with than the One who formed your head and counted your hairs, molded your hands and feet, and to this day pumps every beat of your heart? If you answered "no one" then BING BING BING you are correct!
I know this is short (well shorter than usual), random and a little blabby..but I like it. (wait, did I just describe myself? no wonder I like it :P)
What are some of yours and God's miles together? If you ask Him to help you think of some, no doubt your heart will be filled.
I have 23 years and 11 months worth of miles and victories with Jesus because God is love.
Thursday, September 5, 2013
Ice chips.
While I was in the hospital, a friend sent me a nice little care package of activities to do, along with a poster. The poster had a verse on it, and the picture behind the Word was a beautiful mini waterfall rushing into a sparkling clear spring. It was beautiful. We hung it exactly where I could see it, and it was always in my view. (Thanks Catherine Langhoff!)
Having a trach meant that I needed to take a swallow test before I could eat or drink. In order to qualify to take this test, you had to be on "trach collar" which basically meant that you weren't hooked up to a vent, you only had a little oxygen mask over your trach. After being on the vent, I was able to come off and be on trach collar, and was able to take the test! There were two parts to the test - one for liquids and one for solid food. After taking the one for liquids, I had to wait 24 hours for results. With excitement of possibly being able to finally drink something the next day, my little lungs just couldn't work that hard anymore, and I was put back on the vent --- aka .. no drinks in my near future. The results came in.. I passed. I could drink something --- if I wasn't on the vent...
I was so upset. My mouth and throat had reached a new level of dryness that makes a desert seem like the ocean. I was so close to having a drink and now I was so far. I was already not myself from being on the ECMO and trach for awhile at this point, and I was feeling pretty bla- of course physically, but what was worse was spiritually. The only way I can describe it is that God was still holding onto me, but I wasn't holding back. I wanted to, but at this point, my attitude had started sliding into the neutral zone -- my emotions had become indifferent. I just was. I didn't care either way, except during my panics. My soul wanted Jesus, but my body didn't care. This made me feel guilty too. He was doing so much and I just didn't even want to talk to him. I made myself pray anyway. I can't remember exactly, but in short (even though it was probably the shortest prayer ever to begin with) I apologized for not holding onto him, thanked him for holding on to me, and desperately asked that he wouldn't let go. He confirmed his compassion and love, and that he'll never ever let go of me. But who knew he would do it through ice chips?
I was allowed to crunch on ice chips because they trusted me that I wouldn't swallow them, and I didn't. They brought me my first cup of ice chips and handed me a little suction thing -- like they have at the dentist -- to be able to slurp up the water. My hand slowly reached up and grasped the cold, Styrofoam cup full of ice chips. If you were ever to describe something as mouth watering, that was the time. They just looked so pretty -- clear ovals with sparkling ridges from the frost of the ice machine, I kid you not, they resembled crystals. I picked one up, put it in my mouth, and CRUNCHED! Immediately it burst, filling my mouth with cold water and pieces of ice. And as I enjoyed this eruption of refreshment, my eyes were focused on the beautiful poster hanging in front of me. I closed my eyes and imagined all the wonderful enjoyments of water. I pictured that same waterfall and spring from the poster.. but this time I was in it. The water would was so clear, and felt so nice as it just glided across my skin and through my hair. I could drink it, too. It was cool, and for lack of better term, refreshing as it ran down my throat, quenching all my thirst as I felt its briskness, and tasted its pureness. With every ice chip I put in my mouth (and then suctioned out.. don't worry, people.. still followed the rules while I was day dreaming!) I imagined this over, and over. And before I could open my eyes again, God reminded me that HE is the Living Water.
John 4:13-14 “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.”
John 7:37-39 "On the last and greatest day of the festival, Jesus stood and said in a loud voice, "Let anyone who is thirsty come to me and drink. Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” By this he meant the Spirit, whom those who believed in him were later to receive."
And it just made me think.. if an ICE CHIP brings such relief, what does God bring? If water is so enjoyable, what is God? God is more. I can't tell you exactly what he is because my mind can only grasp ice chips and water.
Isaiah 64:4 "Since ancient times no one has heard,
no ear has perceived,
no eye has seen any God besides you,
who acts on behalf of those who wait for him"
1 Corinthians 2:9 "However, as it is written:
Having a trach meant that I needed to take a swallow test before I could eat or drink. In order to qualify to take this test, you had to be on "trach collar" which basically meant that you weren't hooked up to a vent, you only had a little oxygen mask over your trach. After being on the vent, I was able to come off and be on trach collar, and was able to take the test! There were two parts to the test - one for liquids and one for solid food. After taking the one for liquids, I had to wait 24 hours for results. With excitement of possibly being able to finally drink something the next day, my little lungs just couldn't work that hard anymore, and I was put back on the vent --- aka .. no drinks in my near future. The results came in.. I passed. I could drink something --- if I wasn't on the vent...
I was so upset. My mouth and throat had reached a new level of dryness that makes a desert seem like the ocean. I was so close to having a drink and now I was so far. I was already not myself from being on the ECMO and trach for awhile at this point, and I was feeling pretty bla- of course physically, but what was worse was spiritually. The only way I can describe it is that God was still holding onto me, but I wasn't holding back. I wanted to, but at this point, my attitude had started sliding into the neutral zone -- my emotions had become indifferent. I just was. I didn't care either way, except during my panics. My soul wanted Jesus, but my body didn't care. This made me feel guilty too. He was doing so much and I just didn't even want to talk to him. I made myself pray anyway. I can't remember exactly, but in short (even though it was probably the shortest prayer ever to begin with) I apologized for not holding onto him, thanked him for holding on to me, and desperately asked that he wouldn't let go. He confirmed his compassion and love, and that he'll never ever let go of me. But who knew he would do it through ice chips?
I was allowed to crunch on ice chips because they trusted me that I wouldn't swallow them, and I didn't. They brought me my first cup of ice chips and handed me a little suction thing -- like they have at the dentist -- to be able to slurp up the water. My hand slowly reached up and grasped the cold, Styrofoam cup full of ice chips. If you were ever to describe something as mouth watering, that was the time. They just looked so pretty -- clear ovals with sparkling ridges from the frost of the ice machine, I kid you not, they resembled crystals. I picked one up, put it in my mouth, and CRUNCHED! Immediately it burst, filling my mouth with cold water and pieces of ice. And as I enjoyed this eruption of refreshment, my eyes were focused on the beautiful poster hanging in front of me. I closed my eyes and imagined all the wonderful enjoyments of water. I pictured that same waterfall and spring from the poster.. but this time I was in it. The water would was so clear, and felt so nice as it just glided across my skin and through my hair. I could drink it, too. It was cool, and for lack of better term, refreshing as it ran down my throat, quenching all my thirst as I felt its briskness, and tasted its pureness. With every ice chip I put in my mouth (and then suctioned out.. don't worry, people.. still followed the rules while I was day dreaming!) I imagined this over, and over. And before I could open my eyes again, God reminded me that HE is the Living Water.
John 4:13-14 “Everyone who drinks this water will be thirsty again, but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life.”
John 7:37-39 "On the last and greatest day of the festival, Jesus stood and said in a loud voice, "Let anyone who is thirsty come to me and drink. Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.” By this he meant the Spirit, whom those who believed in him were later to receive."
And it just made me think.. if an ICE CHIP brings such relief, what does God bring? If water is so enjoyable, what is God? God is more. I can't tell you exactly what he is because my mind can only grasp ice chips and water.
Isaiah 64:4 "Since ancient times no one has heard,
no ear has perceived,
no eye has seen any God besides you,
who acts on behalf of those who wait for him"
1 Corinthians 2:9 "However, as it is written:
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—"
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—"
But I can tell you one of the things he is -- My God is my refreshment. My God is the Living Water. And for every panic attack, every bad dream, every procedure or potential scare that day.. I just repeated "I found my Living Water" and just like when I crunched that ice chip, something burst into my being, except this time it was the safety and comfort of Jesus Christ - My Redeemer... My Refresher... My Living Water.
My God can even use ice chips to comfort me because God is love.
Subscribe to:
Posts (Atom)