I never announced who won the contest I posted HERE.
It was my dad! He guessed November 30th- only two weeks off! Now I get to take him to lunch!
December 31, 2009
Positive Thinking
I have had one of the fastest recoveries of a double lung transplant that I know of. When we went to check out my old lungs, one of the lab technicians (I don't know his official title, haha) asked me how long it had been since my surgery. "15 days post," I replied. His jaw dropped wide open, and stayed there for like a minute. I was thrilled to know that he obviously thought I was doing very well, and he probably comes across transplant patients a lot. (Or at least more than I do anyway.)
Over the last few weeks I hear people say "she must have the right attitude" or "she must have a strong will to live" or "her positive attitude played a big part of it" etc.
I do love life. I love my family. I love my son. I love colors, and smells and weather. I love to be out doing things, and I love to stay active....
That being said...
While it would feel nice to stand here and take credit for a fast, smooth transplant recovery due to my "grit and determination" I stand here to say the opposite. It is by the grace of God that I'm here.
For a long time I have been praying that God do His will in my life.... no matter what that may be. Whether I end up having a super hard life, a super easy life, a miraculous life, or He takes me home - I'm okay with that. When I was really sick two months before transplant, I thought that I was going to die - and I was okay with that. My main reason to live is for God. I've read the book- I know how it's gonna end. I know that in the long run there is always victory.
Without God I would be nothing. The only reason I can walk across a street, I believe, is because He is "holding me up" in a sense and allowing me to live. I personally do not believe that my attitude positive or not has anything to do with my health, living longer etc.
Granted, God does allow us freedom to chose any path, and make all decisions in this life. If I were to take a bottle of whiskey, go sit in an alley and forsake all my transplant medications, I am sure I would be dead in a few days....
But the reason that I am not destructive, the reason why I do want to live is because that is what God wants. Sticking close to Him, I know that. Jesus says in John 10:10
The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.
God is the ultimate giver of life. He has blessed me with eternal life.....
So yeah, having gone through end stage Cystic Fibrosis I have been told to "think positive" or "stay positive" more times than you would imagine. People see someone who is hurting, and they don't know much else what to say. Our culture is filled with this positive thought movement.
I do not believe in positive thinking. I do not believe if I have a positive attitude it will get my anywhere regarding health, business, psychology or sports. That may come off as sounding negative but let me explain.
Again, my goal in life is to live the way God wants me to. (Let's not talk about how often I fall short of that goal!) The bible says in Philippians 4:8
Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.
If I come off as having a positive attitude, it's because I am meditating on all of the good things God has done in my life. I do not think positive for the sake of thinking positive. I treasure being "real" I treasure rejoicing with those who rejoice, and weeping with those who weep.
I have met "positive thinkers"and I have met "negative thinkers" and have met people who are just "real".
I prefer the latter.
Yet I will rejoice in the LORD, I will joy in the God of my salvation. Habakkuk 3:18
I have accepted Jesus in my life, and I have salvation through Him, I always have a reason to be hopeful and filled with peace and true joy.
Over the last few weeks I hear people say "she must have the right attitude" or "she must have a strong will to live" or "her positive attitude played a big part of it" etc.
I do love life. I love my family. I love my son. I love colors, and smells and weather. I love to be out doing things, and I love to stay active....
That being said...
While it would feel nice to stand here and take credit for a fast, smooth transplant recovery due to my "grit and determination" I stand here to say the opposite. It is by the grace of God that I'm here.
For a long time I have been praying that God do His will in my life.... no matter what that may be. Whether I end up having a super hard life, a super easy life, a miraculous life, or He takes me home - I'm okay with that. When I was really sick two months before transplant, I thought that I was going to die - and I was okay with that. My main reason to live is for God. I've read the book- I know how it's gonna end. I know that in the long run there is always victory.
Without God I would be nothing. The only reason I can walk across a street, I believe, is because He is "holding me up" in a sense and allowing me to live. I personally do not believe that my attitude positive or not has anything to do with my health, living longer etc.
Granted, God does allow us freedom to chose any path, and make all decisions in this life. If I were to take a bottle of whiskey, go sit in an alley and forsake all my transplant medications, I am sure I would be dead in a few days....
But the reason that I am not destructive, the reason why I do want to live is because that is what God wants. Sticking close to Him, I know that. Jesus says in John 10:10
The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.
God is the ultimate giver of life. He has blessed me with eternal life.....
So yeah, having gone through end stage Cystic Fibrosis I have been told to "think positive" or "stay positive" more times than you would imagine. People see someone who is hurting, and they don't know much else what to say. Our culture is filled with this positive thought movement.
I do not believe in positive thinking. I do not believe if I have a positive attitude it will get my anywhere regarding health, business, psychology or sports. That may come off as sounding negative but let me explain.
Again, my goal in life is to live the way God wants me to. (Let's not talk about how often I fall short of that goal!) The bible says in Philippians 4:8
Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy—meditate on these things.
If I come off as having a positive attitude, it's because I am meditating on all of the good things God has done in my life. I do not think positive for the sake of thinking positive. I treasure being "real" I treasure rejoicing with those who rejoice, and weeping with those who weep.
I have met "positive thinkers"and I have met "negative thinkers" and have met people who are just "real".
I prefer the latter.
Yet I will rejoice in the LORD, I will joy in the God of my salvation. Habakkuk 3:18
I have accepted Jesus in my life, and I have salvation through Him, I always have a reason to be hopeful and filled with peace and true joy.
December 30, 2009
Cytomegalovirus Immune Globulin Intravenous (Human)
It's been a long day... Today we went over to the hospital for a 3.5 hour dose of Cytogam. It is one of the anti-infection drugs immuno-compromised folks like Leah need to take. It reminded me of dialysis for cancer patients - a room where people go to get infusions of whatever meds they need on an outpatient basis. Leah was loaded up with Benadryl the whole time so she was pretty sleepy.
Last night Leah didn't really get any rest. The drugs are keeping her from falling asleep (not the Benadryl - maybe the Prednisone...). We hope to get some better rest tonight.
Until next time,
seth...
December 28, 2009
My Old Lungs
Today we got the opportunity to come back to the hospital to look at my old lungs. They have been washed and preserved in a formaldehyde type solution. It was pretty strange. We were taken into the surgery pathology room, which was filled with different people's body parts.
Creepy.
 |  |
My old lungs were in pretty bad shape (obviously) The lab technician explained the details to us. My bronchial tubes were enlarged and filled with puss and mucus. They showed signs of lots of infection. I was also surprised to learn that because I live in an urban area that there was a thin layer of "black" because of pollution. In fact everyone who lives in a city has that. Crazy.
It was pretty gross because the room had a strong odor. We didn't know if it was because of the preservatives or just because it was filled with organs. Holding the lungs felt like holding a piece of meat from the grocery store.
Later that day I came back home and started shredding cooked chicken breasts to make enchiladas. Seth and I started to get creeped out because it was so similar to my old lungs - haha.
It was a really cool experience. We took lots of photos, and got to say "goodbye" to my old Cystic Fibrosis lungs.
December 27, 2009
Two Weeks On
It's been two weeks now since I got the call! I can't believe how much has transpired in the last 14 days. I am continuing to recover well. Thank you so much for continuing to keep us in your prayers. Here are some more detailed prayer requests....
-Please pray that my lungs continue to stay clear. Clear of dust, mold, fungus, germs, viruses, bacteria, mucus and all the nasty stuff that could float in there and cause damage to my lungs. Please pray for wisdom for me to know in which situations I should or should not wear a respirator or a paper mask, or nothing at all.
-Please keep in prayer that my body would be able to regulate my temperature well. Although I don't think I have gotten any fevers, I keep getting extremely, uncomfortably hot and sweaty - especially at night. It's the middle of winter and I always want the sliding glass door open. Pray for Seth too.... that he doesn't freeze to death, haha.
- I'm still hooked up to I.V.s for the next couple of weeks. I am on very high doses of antibiotics to prevent the risk of infection. While I.V.s are something that I am used to, having CF and all, they are never fun. Please pray for patience as we finish this course up. Anyone who knows me, knows how much I like to shower everyday, and every time I am on home I.V.s I can only really get one good shower in a week (between needle changes) Please pray for me not to feel too yucky.
-Last week my vein on my left forearm got infiltrated, meaning it burst. It has been a very painful event for me. My arm is purple and bruised. I am not allowed to stop the I.V. therapy even though it continues to aggravate my veins, because of the importance of the antibiotics. I have been wrapping it daily in ACE bandages and using hot packs. Please pray that it will continue to heal properly. My fingers and wrist have seemed numb ever since it happened, and I get anxious that there is permanent damage. Please pray this is not the case.
- I am on so many brand new medications. I'm not sure how many ( I should really count them) somewhere around 15. With this comes new side effects. Prednisone is known to mess with your sleep, appetite, and your moods. Please pray that the side effects will be at a minimum and that I'll be able to sleep and won't get moody.
- Please pray for no rejection. At any moment my body could decide to just up and reject these new lungs. The human body recognizes transplanted organs as "foreign" and naturally wants to attack them. Hence all those new "anti-rejection" medications I am now on, and will be on for the rest of my life. Please pray that my body would accept the lungs and not reject them.
-Although our "hometel" is cozy, and we are blessed to be here, please pray that we will be able to return to our real home, soon and healthy. We get to see Levi often, but it is not quite the same as just living together at home as a family. Please pray for Seth, Me and Levi to not miss each other too much the hours we are not able to spend together.
-Please pray that my lungs continue to stay clear. Clear of dust, mold, fungus, germs, viruses, bacteria, mucus and all the nasty stuff that could float in there and cause damage to my lungs. Please pray for wisdom for me to know in which situations I should or should not wear a respirator or a paper mask, or nothing at all.
-Please keep in prayer that my body would be able to regulate my temperature well. Although I don't think I have gotten any fevers, I keep getting extremely, uncomfortably hot and sweaty - especially at night. It's the middle of winter and I always want the sliding glass door open. Pray for Seth too.... that he doesn't freeze to death, haha.
- I'm still hooked up to I.V.s for the next couple of weeks. I am on very high doses of antibiotics to prevent the risk of infection. While I.V.s are something that I am used to, having CF and all, they are never fun. Please pray for patience as we finish this course up. Anyone who knows me, knows how much I like to shower everyday, and every time I am on home I.V.s I can only really get one good shower in a week (between needle changes) Please pray for me not to feel too yucky.
-Last week my vein on my left forearm got infiltrated, meaning it burst. It has been a very painful event for me. My arm is purple and bruised. I am not allowed to stop the I.V. therapy even though it continues to aggravate my veins, because of the importance of the antibiotics. I have been wrapping it daily in ACE bandages and using hot packs. Please pray that it will continue to heal properly. My fingers and wrist have seemed numb ever since it happened, and I get anxious that there is permanent damage. Please pray this is not the case.
- I am on so many brand new medications. I'm not sure how many ( I should really count them) somewhere around 15. With this comes new side effects. Prednisone is known to mess with your sleep, appetite, and your moods. Please pray that the side effects will be at a minimum and that I'll be able to sleep and won't get moody.
- Please pray for no rejection. At any moment my body could decide to just up and reject these new lungs. The human body recognizes transplanted organs as "foreign" and naturally wants to attack them. Hence all those new "anti-rejection" medications I am now on, and will be on for the rest of my life. Please pray that my body would accept the lungs and not reject them.
-Although our "hometel" is cozy, and we are blessed to be here, please pray that we will be able to return to our real home, soon and healthy. We get to see Levi often, but it is not quite the same as just living together at home as a family. Please pray for Seth, Me and Levi to not miss each other too much the hours we are not able to spend together.
December 26, 2009
Lovely
Today I got to walk through a field hand in hand with Seth as fast as I wanted to....
Went out to the yummiest seafood dinner....
Talked to one of my very best friends on the phone....
Rented a movie and just cuddled in a recliner....
Got to visit with Rebecca and Kyle and open even more Christmas presents....
Got to make a neighbor house call and meet the Ormans....
Praise God for the wonderful life He has given me....
Went out to the yummiest seafood dinner....
Talked to one of my very best friends on the phone....
Rented a movie and just cuddled in a recliner....
Got to visit with Rebecca and Kyle and open even more Christmas presents....
Got to make a neighbor house call and meet the Ormans....
Praise God for the wonderful life He has given me....
December 25, 2009
December 23, 2009
Waiting... Hmmm...
Please pray that we can leave the hospital today. Last minute details, insurance, bureaucracy, circumstances, etc. threaten to keep us here another day for no important reason... It is in God's hands.
When you are a patient or a caregiver it is your job to be the "squeaky wheel that gets the grease." Needless to say, I have been "squeaking" a lot lately... You cannot blindly trust everything the doctors and nurses tell you, give you and plan for you. They are simply people (like you and me) who put things off to the last second, get tired and make mistakes, and don't care about you as much as you do...
That being said, I have to say that almost everyone here in the step-down unit has been very good and we are very appreciative for the great job they have been doing.
December 22, 2009
One More Hurdle
Today should have been easy for Leah, but one of the sutures/stitches around where one of the chest tubes had been was just way too tight. Poor Leah has been in too much pain for about half the day. Finally we have gotten some proper attention (a doctor...) on this situation and we are going to numb it up locally, remove the suture and replace the stitch with steri-strips and give her extra pain meds... (Which just happens to be exactly what I recommended...heheh.) Thank God Leah is finally getting relief from this random but intense pain.
Tubes!
Leah is being prepped for the removal of her final two chest drain tubes!
"I can't wait..." she says.
The removal process is painful - they just get un-taped and pulled out, but like a bandage being ripped off it hurts for a moment and then... you're free!
We are still waiting for the pain meds to come - oh wait - they're here.
Lord willing we should be moving out to the temporary apartments tomorrow or maybe the next day. I am officially renting it as of today...
"I can't wait..." she says.
The removal process is painful - they just get un-taped and pulled out, but like a bandage being ripped off it hurts for a moment and then... you're free!
We are still waiting for the pain meds to come - oh wait - they're here.
Lord willing we should be moving out to the temporary apartments tomorrow or maybe the next day. I am officially renting it as of today...
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