Nolan's New Lungs
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Thank you so much for checking out my gofundme page. For those of you who might not know me, I'll start from the beginning. My name is Nolan Gottlieb and I was diagnosed with Cystic Fibrosis when I was three months old. CF is a genetic disorder that ultimately affects a person's lungs, sinuses, and digestive system. As a child my symptoms were minimal and it wasn't until I was in middle school that CF started to catch up with me. When other kids my age started to grow, I did not. I had trouble gaining weight and wasn't growing any taller. Additionally, I began having sinus issues and breathing problems during this time. This was problematic for a couple reasons; not only for the obvious health reasons, but also because I had a dream of playing college basketball one day. I knew I needed to be healthier and bigger to play baskeball, but I fought it for a few years . With the help of my doctors at Emory, I got a feeding tube placed and within a year I'd grown 6 inches and gained 25 pounds! I was healthier, happier, and actually began to think playing college basketball was possible. I played for my high school team and when I graduated I was able to walk on as a JV player at Anderson University in South Carolina. However, after a few years I thought that I might be able to play on the varsity team. I'd go to my JV workouts as well as the varsity workouts and finally an opportunity presented itself to join the varsity team of a NCAA basketball program. That was a dream come true!
After college I coached for a year at Anderson University, worked in part-time ministry, and went back and got my master's degree in teaching. My health was pretty consistent during that time as well. I'd go in for my routine IV antibiotics, did my breathing treatments, took my pills and remained pretty active. However, CF is a progressive disease which means it gets worse over time...and it did. Once I began teaching 3rd grade (which in retropsect wasn't a great idea because kids are ALWAYS sick) my health took a turn for the worse. Within two and a half years my lung function was cut in half. I've been struggling to keep my lung function in the mid 20% range ever since. This past November, my doctors made it clear to me that my need for new lungs was real. In December we began my evaluation for transplant and after many tests and lots of appointments at Emory, I've officially been listed for a double lung transplant. This, as you can probably imagine, is a very overwhelming process! It will be an extremely intensive surgery and lenghty recovery, but I know it's needed and is for the best. I have been very fortunate and blessed in my life to have been able to do some things that not many people with CF could ever do. It's time now, though, to do something that most people with CF must do. It is for this reason that I'm reaching out for help. The cost associated with any organ transplant, much less a double lung transplant, are outrageous (google what a lung transplant costs...it's insane!). We have been fortunate beyond belief with good health insurance that will cover most of the medical costs associated with the transplant. However, there will still be a lot of costs associated with the transplant and recovery that will not be covered...and that is where we're asking for help.
The number that we've set as our goal is $95,000. If you're anything like us you are probably thinking that number is enormous...yeah it is. I cringe at the thought of having to raise support and ask people for help. This is one of my least favorite things to do in the whole world. However, I know that there are people who have asked about fundraising and how they can help. I cannot explain how grateful we are for people with a willing spirit to help us through this time in our lives. We know that people will have questions about the specifics of how we came up with $95,000 as our goal so I will break it down for you.
To start, most of the figures we came up with are what we're hoping would be worst case scenario as far as costs are concerned. As you know, there's no way to predict exactly what we might need and how much it would cost, but we are hoping that these figures would cover us in most cases. Our first and most expensive cost is my income that has been and will be lost due to the transplant. I stopped working in December when it became evident that the transplant was going to happen. We agreed with my doctors, that the risk of getting the flu or some other illness from continuing to teach would not be worth the risk while my lung function is so low, and we didn't want that to jeopardize my chance at going through the tranplant operation. We're hoping that after one year I'd be able to continue working in some other field...teaching will not be a possibility once I start taking immunosuppressant medications post-transplant. My yearly salary is around $45,000. The next cost is for around the clock care for up to 6 months. If we were to have to hire a nurse to do this job it would be MUCH more costly, but my wonderful brother has made himself available to step into this role so that it allows my wife, Maggie, to continue teaching. My insurance is through Maggie's job so she needs to continue working. She'll be able to take time off to be with me when it's necessary, but even with FMLA leave we need this help. We've estimated that $16,500 will cover my brother's costs and the income lost when Maggie needs to be with me. The next expense is the Mason House. The Mason House is a place that I'll have to live once discharged from the hospital for a few months while I recover from surgery. Mason House is only for post-transplant care patients and will be home until I'm cleared to come back to Athens. A room that will allow Tyler (my brother), Maggie and myself would cost $85 per night and could be needed for up to 8-10 weeks...approx $5000. The out of pocket maximum cost for our insurance is $6000 per year. You can imagine that this will be met after the first day in ICU. We are planning on meeting this very quickly and if transplant doesn't take place until late in the year it could be met quickly for 2 years...a total cost of $12,000. Post-transplant anti-rejection medications are insanely expensive! Some people have to pay co-pays of $2,000+ every month for the rest of thier lives. Thankfully, we are only going to have to pay a fraction of that because of our great insurance. We anticipate$100 per month in medication co-pays for the first 2 years...$2,400. If you've ever been to Emory you know that the parking situation is out of control! There's no way around it. As long as I'm in the hospital it will be a minimum of $10 per day each car. With Maggie and Tyler both needing parking we anticipate spending $2,000 on parking over the course of the year. Gas for Maggie and travel expenses, maintenance, etc. going from Athens to Gainesville (where she works) to Emory will add up quickly over the course of the year we anticipate at least $2000. There will, of course, be miscellaneous and unexpected costs throughout the year for which we've allotted. Finally, even though this one is a bit morbid I feel it wise to account for, is life insurance. My small life insurance policy that I had was through my job. It wasn't much, but it was something. Now that I'm not working I lost that and with my CF as a pre-existing condition, it is impossible to get approved for life insurance. The great thing about this is that we don't have much debt at all...thanks Dave Ramsey! But I would like to have what little debt that remains be taken care of if something were to happen to me.
I know that this is a lot to take in and a bit overwhelming...believe me, I get it. However, God has been consistent my whole life with putting people in place by my side to help carry the burden so that I'm able to carry on. I'm sure this will be no exception.
THANK YOU, THANK YOU, THANK YOU so much for taking time to read this. We would both be honored and grateful beyond belief if you choose to help us out in any way with this whole process. We understand that every dollar is valuable and do not take for granted your willingness to help. Please continue to pray for us and that God will be glorified in this process! Please feel free to ask any questions that you may have.
After college I coached for a year at Anderson University, worked in part-time ministry, and went back and got my master's degree in teaching. My health was pretty consistent during that time as well. I'd go in for my routine IV antibiotics, did my breathing treatments, took my pills and remained pretty active. However, CF is a progressive disease which means it gets worse over time...and it did. Once I began teaching 3rd grade (which in retropsect wasn't a great idea because kids are ALWAYS sick) my health took a turn for the worse. Within two and a half years my lung function was cut in half. I've been struggling to keep my lung function in the mid 20% range ever since. This past November, my doctors made it clear to me that my need for new lungs was real. In December we began my evaluation for transplant and after many tests and lots of appointments at Emory, I've officially been listed for a double lung transplant. This, as you can probably imagine, is a very overwhelming process! It will be an extremely intensive surgery and lenghty recovery, but I know it's needed and is for the best. I have been very fortunate and blessed in my life to have been able to do some things that not many people with CF could ever do. It's time now, though, to do something that most people with CF must do. It is for this reason that I'm reaching out for help. The cost associated with any organ transplant, much less a double lung transplant, are outrageous (google what a lung transplant costs...it's insane!). We have been fortunate beyond belief with good health insurance that will cover most of the medical costs associated with the transplant. However, there will still be a lot of costs associated with the transplant and recovery that will not be covered...and that is where we're asking for help.
The number that we've set as our goal is $95,000. If you're anything like us you are probably thinking that number is enormous...yeah it is. I cringe at the thought of having to raise support and ask people for help. This is one of my least favorite things to do in the whole world. However, I know that there are people who have asked about fundraising and how they can help. I cannot explain how grateful we are for people with a willing spirit to help us through this time in our lives. We know that people will have questions about the specifics of how we came up with $95,000 as our goal so I will break it down for you.
To start, most of the figures we came up with are what we're hoping would be worst case scenario as far as costs are concerned. As you know, there's no way to predict exactly what we might need and how much it would cost, but we are hoping that these figures would cover us in most cases. Our first and most expensive cost is my income that has been and will be lost due to the transplant. I stopped working in December when it became evident that the transplant was going to happen. We agreed with my doctors, that the risk of getting the flu or some other illness from continuing to teach would not be worth the risk while my lung function is so low, and we didn't want that to jeopardize my chance at going through the tranplant operation. We're hoping that after one year I'd be able to continue working in some other field...teaching will not be a possibility once I start taking immunosuppressant medications post-transplant. My yearly salary is around $45,000. The next cost is for around the clock care for up to 6 months. If we were to have to hire a nurse to do this job it would be MUCH more costly, but my wonderful brother has made himself available to step into this role so that it allows my wife, Maggie, to continue teaching. My insurance is through Maggie's job so she needs to continue working. She'll be able to take time off to be with me when it's necessary, but even with FMLA leave we need this help. We've estimated that $16,500 will cover my brother's costs and the income lost when Maggie needs to be with me. The next expense is the Mason House. The Mason House is a place that I'll have to live once discharged from the hospital for a few months while I recover from surgery. Mason House is only for post-transplant care patients and will be home until I'm cleared to come back to Athens. A room that will allow Tyler (my brother), Maggie and myself would cost $85 per night and could be needed for up to 8-10 weeks...approx $5000. The out of pocket maximum cost for our insurance is $6000 per year. You can imagine that this will be met after the first day in ICU. We are planning on meeting this very quickly and if transplant doesn't take place until late in the year it could be met quickly for 2 years...a total cost of $12,000. Post-transplant anti-rejection medications are insanely expensive! Some people have to pay co-pays of $2,000+ every month for the rest of thier lives. Thankfully, we are only going to have to pay a fraction of that because of our great insurance. We anticipate$100 per month in medication co-pays for the first 2 years...$2,400. If you've ever been to Emory you know that the parking situation is out of control! There's no way around it. As long as I'm in the hospital it will be a minimum of $10 per day each car. With Maggie and Tyler both needing parking we anticipate spending $2,000 on parking over the course of the year. Gas for Maggie and travel expenses, maintenance, etc. going from Athens to Gainesville (where she works) to Emory will add up quickly over the course of the year we anticipate at least $2000. There will, of course, be miscellaneous and unexpected costs throughout the year for which we've allotted. Finally, even though this one is a bit morbid I feel it wise to account for, is life insurance. My small life insurance policy that I had was through my job. It wasn't much, but it was something. Now that I'm not working I lost that and with my CF as a pre-existing condition, it is impossible to get approved for life insurance. The great thing about this is that we don't have much debt at all...thanks Dave Ramsey! But I would like to have what little debt that remains be taken care of if something were to happen to me.
I know that this is a lot to take in and a bit overwhelming...believe me, I get it. However, God has been consistent my whole life with putting people in place by my side to help carry the burden so that I'm able to carry on. I'm sure this will be no exception.
THANK YOU, THANK YOU, THANK YOU so much for taking time to read this. We would both be honored and grateful beyond belief if you choose to help us out in any way with this whole process. We understand that every dollar is valuable and do not take for granted your willingness to help. Please continue to pray for us and that God will be glorified in this process! Please feel free to ask any questions that you may have.
Organizer
Nolan Gottlieb
Organizer
Athens, GA
