I hear a lot of people say "I wish you could get a lung transplant" or "Can you get a lung transplant." Which is fine and I completely understand. It does sound great.. new lungs right?!?!?! But I heard A LOT of those remarks over the last few months when I was struggling in the 30s for lung function.
I wanted to explain. No, I don't want a lung transplant (tx), well not until I have to look at them. And no, I cannot receive one yet, which is a GOOD thing! A double lung transplant is way of extending our life when we are running out of time, it is not a CURE. When someone is waiting for a transplant, they are holding their breath, just hoping to get a pair of lungs. To even be considered you normally have to be below or around 30%. So by that point daily life is fairly limited and difficult, but if you get too ill or drop too low, it you may not be eligible anymore. So I don't wish to ever get that low in lung function, I do not wish to struggle for breath anymore than I already do. When I was low 30s I couldn't even carry a grocery bag or walk around a store, daily chores were exhausting. I cannot imagine what it is like being in that range or lower every single day knowing it isn't going to get better.
Also, you have to think about all the risks too. While, I will never turn one down in the future, it is very complex. The CF Foundation has a great website full of information about transplants HERE!
But I am a numbers person. Yes, huge nerd. I loved my college stats & stats research classes! Here are some numbers: Most people to be eligible have technically less than 1 half of one lung working, terrifying huh. Once you do get listed it can be months, years before (if) you get the call for lungs!
While I'm beyond thankful to everyone who is an organ donor & happy to say over 200 people with CF received transplants in 2014, I do not wish to need one yet. In fact, I hope to never need one... because... around 80% survive the surgery (so 20 out of 100 don't). Out of the 80 people who do survive the surgery, only 40 of those people will be alive after 5 years post transplant. So out of the 100 originally listed, only 40 are still alive in 5 years! Everyone is different, some friends have celebrated 10 year lung anniversaries already, while some of my friends were denied (Laura), did not receive lungs in time, didn't survive surgery, or their body couldn't fight the rejection of the organs(Alyssa). I'm just saying those numbers aren't good enough for me to want a transplant. My CF doctor discussed transplants a little with me this fall. He said my allergies to the Keflex, Bactrim, Levaquin families won't hurt my chances, but we would have to find ways to work around those, my pain med allergies & drug resistance. So it is tricky for people with CF, lots of things to consider.
It's a long and difficult road pre & post transplant. Andrew & I have discussed this in depth. Our goal is for me to never need one, but as you can see this fall (one small illness or change in meds) can drop my lung function so fast. It is hard to recover from that. So while we hope I don't need one, we are making sure we are prepared.
I have researched a couple hospitals that I would feel comfortable with (knowing their numbers) and even have friends that live near those cities. Andrew & I know there might be a day we have to pack up and move while I am waiting for lungs. We also know how expensive it is, over $800,000 for hospital, surgery, and medical related costs. This doesn't include transportation to hospital, gas, food, extra rehab. Plus, Andrew might not-working for periods of time, in order to care for me. We started a Health Savings Account (AKA transplant fund) this fall. His employer matches up to 1,000 a year. So we put slightly over 1,000 of his paycheck into it a year and his company matches. Now for more math.
One CF doc in the past explained to me in a good year I will lose 1-2 % and in a year I get sick (flu, or pneumonia) probably more like 5% (this was pertaining to me particularly, not everyone with CF). Now I currently have 45% and TX range is 30% so I have 15% of "wiggle room" assuming I'm healthy every singe year (average 1.5% decrease per year) = 10 years I would need a TX, sooner if I get sick more often. I have beaten those numbers, for example from 2010-2012 I gained lung function. Some years I maintain too. So we are working towards me not needing one, but planning just to be smart.
We put $1000 per year in the HSA & his employer matches: it means we will have $20,000 for transplant expenses in 10 years or 40,000 in 20 years. We also opted into a higher paying & higher benefit insurance through his employer. We pay more, but it has critical care pay-outs. For TX it was like an automatic $20,000 & $500 per travel expense (for 1 person).
I'm also making sure I gain more muscle & I'm trying to be as healthy as possible. I'd love to see my lung function rise up again, it takes dedication & time. So only time will tell. I wanted everyone to have a clear picture of what TX means & specifically how it affects me. I don't see it as my goal, I see it as a back-up plan. My goal is to keep raising money & see CF cured before I need a transplant!!!
Also, please consider being an organ donor, check out DonateLife website for more info & facts, for instance did you know "Just one organ, eye, and tissue donor can save up to 75 lives!
I wanted to explain. No, I don't want a lung transplant (tx), well not until I have to look at them. And no, I cannot receive one yet, which is a GOOD thing! A double lung transplant is way of extending our life when we are running out of time, it is not a CURE. When someone is waiting for a transplant, they are holding their breath, just hoping to get a pair of lungs. To even be considered you normally have to be below or around 30%. So by that point daily life is fairly limited and difficult, but if you get too ill or drop too low, it you may not be eligible anymore. So I don't wish to ever get that low in lung function, I do not wish to struggle for breath anymore than I already do. When I was low 30s I couldn't even carry a grocery bag or walk around a store, daily chores were exhausting. I cannot imagine what it is like being in that range or lower every single day knowing it isn't going to get better.Also, you have to think about all the risks too. While, I will never turn one down in the future, it is very complex. The CF Foundation has a great website full of information about transplants HERE!
But I am a numbers person. Yes, huge nerd. I loved my college stats & stats research classes! Here are some numbers: Most people to be eligible have technically less than 1 half of one lung working, terrifying huh. Once you do get listed it can be months, years before (if) you get the call for lungs!
While I'm beyond thankful to everyone who is an organ donor & happy to say over 200 people with CF received transplants in 2014, I do not wish to need one yet. In fact, I hope to never need one... because... around 80% survive the surgery (so 20 out of 100 don't). Out of the 80 people who do survive the surgery, only 40 of those people will be alive after 5 years post transplant. So out of the 100 originally listed, only 40 are still alive in 5 years! Everyone is different, some friends have celebrated 10 year lung anniversaries already, while some of my friends were denied (Laura), did not receive lungs in time, didn't survive surgery, or their body couldn't fight the rejection of the organs(Alyssa). I'm just saying those numbers aren't good enough for me to want a transplant. My CF doctor discussed transplants a little with me this fall. He said my allergies to the Keflex, Bactrim, Levaquin families won't hurt my chances, but we would have to find ways to work around those, my pain med allergies & drug resistance. So it is tricky for people with CF, lots of things to consider.
It's a long and difficult road pre & post transplant. Andrew & I have discussed this in depth. Our goal is for me to never need one, but as you can see this fall (one small illness or change in meds) can drop my lung function so fast. It is hard to recover from that. So while we hope I don't need one, we are making sure we are prepared.
I have researched a couple hospitals that I would feel comfortable with (knowing their numbers) and even have friends that live near those cities. Andrew & I know there might be a day we have to pack up and move while I am waiting for lungs. We also know how expensive it is, over $800,000 for hospital, surgery, and medical related costs. This doesn't include transportation to hospital, gas, food, extra rehab. Plus, Andrew might not-working for periods of time, in order to care for me. We started a Health Savings Account (AKA transplant fund) this fall. His employer matches up to 1,000 a year. So we put slightly over 1,000 of his paycheck into it a year and his company matches. Now for more math.
One CF doc in the past explained to me in a good year I will lose 1-2 % and in a year I get sick (flu, or pneumonia) probably more like 5% (this was pertaining to me particularly, not everyone with CF). Now I currently have 45% and TX range is 30% so I have 15% of "wiggle room" assuming I'm healthy every singe year (average 1.5% decrease per year) = 10 years I would need a TX, sooner if I get sick more often. I have beaten those numbers, for example from 2010-2012 I gained lung function. Some years I maintain too. So we are working towards me not needing one, but planning just to be smart.
We put $1000 per year in the HSA & his employer matches: it means we will have $20,000 for transplant expenses in 10 years or 40,000 in 20 years. We also opted into a higher paying & higher benefit insurance through his employer. We pay more, but it has critical care pay-outs. For TX it was like an automatic $20,000 & $500 per travel expense (for 1 person).
I'm also making sure I gain more muscle & I'm trying to be as healthy as possible. I'd love to see my lung function rise up again, it takes dedication & time. So only time will tell. I wanted everyone to have a clear picture of what TX means & specifically how it affects me. I don't see it as my goal, I see it as a back-up plan. My goal is to keep raising money & see CF cured before I need a transplant!!!Also, please consider being an organ donor, check out DonateLife website for more info & facts, for instance did you know "Just one organ, eye, and tissue donor can save up to 75 lives!
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