I wanted to let everyone know about Bryan, I met his mom thru this blog and Facebook ~1mos ago. He is 17 and recently diagnosed with bronchiolitis obliterans. They live in Canada and are helping to promote organ donation with my t-shirts! The response has been amazing!
I cannot get the flyer to upload but please remember to pray for Bryan, his mom Kirstie, and their family as they are battling this scary disease and the unknown which is in my opinion the most difficult!
Monday, May 27, 2013
So much support!!!!
I designed T-shirts to promote organ donation and my work -Grand Valley Medical Specialists had T-shirt Tuesdays in April (National Organ Donation Month).
One of my co-workers (Melissa) brought her dear daughter in Allison. Allison is 8yrs old and made duct tape bracelets to sell and gave me her earnings. I was so moved by this random act of kindness, I thought about Allison and her pure sweet spirit for days to follow.
Here's Allison:
I met Rachael Rasikas ~5mos ago. Her dad is one of the docs I work with. She has an awesome blog and wrote on me. Please ck it out, she is also going to be running this Sat 6-1 with her dad, trying to raise awareness and taking donations.
She has great recipes too. :)
FH Northern won the baseball tournament! Great job guys and we had a great time meeting everyone that day.
Words cannot express how much I appreciate all everyone is doing for me. In a world where you hear so much distressing news, know that there is still so much goodness and love.
THANK YOU FROM THE BOTTOM OF MY HEART!!!
Sunday, May 5, 2013
Had some follow-up...
This past Monday, Greg and I traveled to Wisconsin for routine follow-up. Once you are listed at a center you need routine testing and follow-up. Some of the testing can affect ones score. Everything is stable currently. U of W transplant center seems to be a well oiled machine and that brings me some comfort in a very uncomfortable situation.
The waiting can be excruciating, especially as the weather is getting nicer and I would love to be able to travel or plan a trip. My life feels like it is on hold, will perfectly matched healthy lungs come my way?? When?? These are questions I do not know but they go thru my mind many times a day. Then of course doubt starts to creep in, it's never going to happen. But then I remind myself there is The One that is greater than all of us, He is in control and His timing is perfect.
It is a daily battle, please continue to pray for perfectly matched, healthy lungs and never take a day for granted.
The waiting can be excruciating, especially as the weather is getting nicer and I would love to be able to travel or plan a trip. My life feels like it is on hold, will perfectly matched healthy lungs come my way?? When?? These are questions I do not know but they go thru my mind many times a day. Then of course doubt starts to creep in, it's never going to happen. But then I remind myself there is The One that is greater than all of us, He is in control and His timing is perfect.
It is a daily battle, please continue to pray for perfectly matched, healthy lungs and never take a day for granted.
Sunday, April 21, 2013
2nd listing official
I got the call from Spectrum Health April 17 of this week, I am officially listed for bilateral lungs at their facility. (was listed on Jan 16 at U of W--pretty close dates)
The repeat testing and meetings with the various departments over the last several weeks has been tiring and the raw emotions come screaming back. Since most of the testing was done in Dec at Wisconsin I did not have to repeat the 'major testing'. Nonetheless, I still had to meet the Spectrum team, submit to another 15vials of blood, PFTs, ABGs, xrays.
I think its hard for both transplant centers to grasp the severity of my illness, yes they are doctors but most have never seen Autoimmune BO. I don't believe U of W has ever transplanted a patient with that diagnosis and I know Spectrum hasn't especially since they are new. The doctors they have are experienced but I'm finding that when you are not on oxygen they don't think you are as sick as you are. Requiring oxygen is one of the points on the UNOS lung listing allocation score. It gets very technical but not being on oxygen does affect my current score (not as high).
Again, my disease is one of the small airways that shut off and scar (and your lungs have A LOT of small airways) and it doesn't affect the oxygen levels like the large airways.
I also find that the transplant centers that I have had experience with deal with severe emphysema, pulmonary fibrosis, and cystic fibrosis routinely and not my disease so I'm a bit of an anomaly.
I could easily qualify for disability with my health conditions, I choose to attempt to continue to work part-time and stay as productive as I can. Is it easy? HECK NO!!! My job is stressful and when the day is done I am physically exhausted. After 2-3days I am mentally exhausted. There are days I literally drag myself out of bed, get dressed and then lay down again for a few minutes before I go to work.
So sometimes I feel because my drive is so strong that I get penalized a bit for my lung score--when they test my oxygen for 6minutes -they make you walk and see how far one can go. Because I walk more than 500ft in 6min I don't get a higher score. I will tell you right now, if I had oxygen and 10monkeys on my back I would push myself to walk 500 ft.
Does it feel like my heart is pounding out of my chest in those 6minutes, does it feel like I have quicksand in my lungs in those 6minutes, do I feel lightheaded in those 6minutes??? A RESOUNDING YES to all those questions!!!!!!!!!!!
UNOS should develop a category/score for drive and how one attempts to stay as physically strong as they can in the face of adversity then mine would be through the roof.
Pray for perfectly matched young lungs -sooner rather than later.
The repeat testing and meetings with the various departments over the last several weeks has been tiring and the raw emotions come screaming back. Since most of the testing was done in Dec at Wisconsin I did not have to repeat the 'major testing'. Nonetheless, I still had to meet the Spectrum team, submit to another 15vials of blood, PFTs, ABGs, xrays.
I think its hard for both transplant centers to grasp the severity of my illness, yes they are doctors but most have never seen Autoimmune BO. I don't believe U of W has ever transplanted a patient with that diagnosis and I know Spectrum hasn't especially since they are new. The doctors they have are experienced but I'm finding that when you are not on oxygen they don't think you are as sick as you are. Requiring oxygen is one of the points on the UNOS lung listing allocation score. It gets very technical but not being on oxygen does affect my current score (not as high).
Again, my disease is one of the small airways that shut off and scar (and your lungs have A LOT of small airways) and it doesn't affect the oxygen levels like the large airways.
I also find that the transplant centers that I have had experience with deal with severe emphysema, pulmonary fibrosis, and cystic fibrosis routinely and not my disease so I'm a bit of an anomaly.
I could easily qualify for disability with my health conditions, I choose to attempt to continue to work part-time and stay as productive as I can. Is it easy? HECK NO!!! My job is stressful and when the day is done I am physically exhausted. After 2-3days I am mentally exhausted. There are days I literally drag myself out of bed, get dressed and then lay down again for a few minutes before I go to work.
So sometimes I feel because my drive is so strong that I get penalized a bit for my lung score--when they test my oxygen for 6minutes -they make you walk and see how far one can go. Because I walk more than 500ft in 6min I don't get a higher score. I will tell you right now, if I had oxygen and 10monkeys on my back I would push myself to walk 500 ft.
Does it feel like my heart is pounding out of my chest in those 6minutes, does it feel like I have quicksand in my lungs in those 6minutes, do I feel lightheaded in those 6minutes??? A RESOUNDING YES to all those questions!!!!!!!!!!!
UNOS should develop a category/score for drive and how one attempts to stay as physically strong as they can in the face of adversity then mine would be through the roof.
Pray for perfectly matched young lungs -sooner rather than later.
Monday, April 8, 2013
Just what I needed to hear...
So I've been feeling a bit anxious about life happenings: more testing, more decisions, more stress and I opened my devotion called Jesus Today by Sarah Young (given to me by Jill at our church-KCC and this is what I read:
"Sometimes my Sovereign Hand--My control over your life-places you in humbling circumstances. You feel held down, held back, and powerless to change things. You long to break free and feel in control of your life once again. Although this is an uncomfortable position, it is actually a good place to be. Your discomfort awakens you from the slumber of routine and reminds you that I am in charge of your life. It also presents you with an important choice: You can lash out at your circumstances-resenting My ways with you-or you can draw closer to Me.
When you are suffering, your need for Me is greater than ever. The more you choose to come near Me, affirming your trust in Me, the more you can find hope in My unfailing love. You can even learn to be joyful in hope while waiting in My Presence--where joy abounds. Persevere in trusting Me, and I will eventually lift you up. Meanwhile, cast all your anxiety on Me, knowing that I care for you affectionately and am watching over you continually."
"Be joyful in hope, patient in affliction, faithful in prayer" Romans 12:12
God always knows what we need to hear. He is in control.
I meet the Spectrum transplant doc again Weds (finished testing this past Fri) and meet the surgeon Friday. I should have a decision from Spectrum and dual-listing in the next week or so.
Pray those perfect lungs come.
"Sometimes my Sovereign Hand--My control over your life-places you in humbling circumstances. You feel held down, held back, and powerless to change things. You long to break free and feel in control of your life once again. Although this is an uncomfortable position, it is actually a good place to be. Your discomfort awakens you from the slumber of routine and reminds you that I am in charge of your life. It also presents you with an important choice: You can lash out at your circumstances-resenting My ways with you-or you can draw closer to Me.
When you are suffering, your need for Me is greater than ever. The more you choose to come near Me, affirming your trust in Me, the more you can find hope in My unfailing love. You can even learn to be joyful in hope while waiting in My Presence--where joy abounds. Persevere in trusting Me, and I will eventually lift you up. Meanwhile, cast all your anxiety on Me, knowing that I care for you affectionately and am watching over you continually."
"Be joyful in hope, patient in affliction, faithful in prayer" Romans 12:12
God always knows what we need to hear. He is in control.
I meet the Spectrum transplant doc again Weds (finished testing this past Fri) and meet the surgeon Friday. I should have a decision from Spectrum and dual-listing in the next week or so.
Pray those perfect lungs come.
Sunday, March 31, 2013
One of those weeks...
It was one of those weeks where disappointment, stress, and life collides.
I think I have the final tests that Spectrum requires finally figured out and scheduled for this upcoming Friday. I will meet the transplant surgeon the following Friday with repeat lung function testing the day before.
Once all testing is complete, the transplant team will review everything and decide if they want to list me at Spectrum. I anticipate the decision in the next 2-3wks.
Going through this again is difficult and it will be nice when all is done and plans "finalized".
Today is Easter and normally we spend it at my mom's-instead we were here. (I missed last yr as I had pneumonia) I really cannot leave the city of GR as one never knows when 'the call' will come. I need to be able to get to my plane within a hour of receiving the call and make it to Wisconisin in the allotted time. It is an approximate 1.15-1.30 hr flight in my reserved Cessna. Flying west across the lake there is always opposing winds and anyone around this area knows weather in general can change in an instant.
So I'm really tied down to this area which I don't think people realize.
It is times like this where I feel trapped, there is no escape, Greg and I can't take a weekend away, and there are certainly no future vacation plans. We would love to be able to plan a Disney trip with our 5yr old but that is on hold. This sucks!
The uncertainty of my life is so heavy at times. Instead of a Disney trip for Eric, I'm thinking of writing cards to him for future b-day/special occasions in case mommy isn't there. How wrong does that seem?!?!?
AAAAAAAAAAAAAAAARGGGGGGGGGGGGGHHHHHHHHHH!!!!!!!!
I tell myself, one day at a time and keep your head up but sometimes I just want to bury my head in my comfy blankies and hide. But life does not stop and neither will I.
P.S.
Thank you Heidi and Becky for offering their families for Easter celebration. Both tried a few times to have us over today but I declined, I needed some time to recharge my batteries. I can't say I feel totally recharged but will keep trying.
I think I have the final tests that Spectrum requires finally figured out and scheduled for this upcoming Friday. I will meet the transplant surgeon the following Friday with repeat lung function testing the day before.
Once all testing is complete, the transplant team will review everything and decide if they want to list me at Spectrum. I anticipate the decision in the next 2-3wks.
Going through this again is difficult and it will be nice when all is done and plans "finalized".
Today is Easter and normally we spend it at my mom's-instead we were here. (I missed last yr as I had pneumonia) I really cannot leave the city of GR as one never knows when 'the call' will come. I need to be able to get to my plane within a hour of receiving the call and make it to Wisconisin in the allotted time. It is an approximate 1.15-1.30 hr flight in my reserved Cessna. Flying west across the lake there is always opposing winds and anyone around this area knows weather in general can change in an instant.
So I'm really tied down to this area which I don't think people realize.
It is times like this where I feel trapped, there is no escape, Greg and I can't take a weekend away, and there are certainly no future vacation plans. We would love to be able to plan a Disney trip with our 5yr old but that is on hold. This sucks!
The uncertainty of my life is so heavy at times. Instead of a Disney trip for Eric, I'm thinking of writing cards to him for future b-day/special occasions in case mommy isn't there. How wrong does that seem?!?!?
AAAAAAAAAAAAAAAARGGGGGGGGGGGGGHHHHHHHHHH!!!!!!!!
I tell myself, one day at a time and keep your head up but sometimes I just want to bury my head in my comfy blankies and hide. But life does not stop and neither will I.
P.S.
Thank you Heidi and Becky for offering their families for Easter celebration. Both tried a few times to have us over today but I declined, I needed some time to recharge my batteries. I can't say I feel totally recharged but will keep trying.
Monday, March 25, 2013
Prayers everywhere!
Heres their facebook link if interested in checking it out further: http://www.facebook.com/pages/Faith-In-Deeds-USA/339566304349
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