What is the maximum FEV1% that you have to be at to be able to receive lungs?

[nocode]

I'm not talking about FEV1 needed to be considered for evaluation, but to actually be transplanted. I live in the Netherlands and I was informed today that only patients with an FEV1 of 20 or below 20% are able to get organs due to shortage of organs!

Thanks for your input.

Vera 29
Netherlands

 

[Daverog75]

I am in Canada and have 24% lung function and have been on the list just over a year.

Dave,

 

[nocode]

Thanks Dave. And you could get lungs anytime since you've been on the list right? Here they have 2 lists: the normal list and the high urgency list. Only people in the high urgency list can get lungs and those have to be really sick and close to dying.

 

[Twistofchaos]

Hoi Vera,

Those numbers aren't set in stone here. It depends on your decline and general health.
They make sense though as a general guideline. Because getting a transplant is rather risky in itself and then there's the risk of rejection and further complications. Something you only want to do at a point where you are running out of options.
At a stable 30% I really would not want to have a transplant personally.
Also because I know people that were in their 20%'s for maybe ten years before going the transplant route.
And I know people that were in fast decline at much higher fev1% and also went the transplant route so it just depends.

Anyway let's compare the Netherlands to America, and to Canada while I'm at it.

About 17 million people here and about 60 lungtransplants done here in the Netherlands a year. (looking to rise to atleast 80 or more on the very short term thanks to some machine making donorlungs better suited before going in. But that's besides the point for the comparison.)
About 320 million people in America and about 1600 lungtransplants done in America a year.
About 35 million people in Canada and I can find about 160 done in 2006.

So that's about one in 280.000 people a year here in the Netherlands.
About one in 200.000 people a year in America.
And about one in 220.000 people a year in Canada.

Not a shockingly huge difference I'm afraid. Shortage of organs is everywhere and quite similarly so.

 

[nocode]

Hi twistofchaos. I think the numbers you chose for comparison purposes are not too relevant. What really matters is the number of people that are on the transplant list against those who get a transplant. The number of people in a country is not too relevant in this case.
Based on research I have been doing lately, I can tell you that last year there were already 80 people who received a lung transplant throughout the Netherlands, against 194 people on the list. This is lung transplants alone. This means that 41% of the people waiting for lungs got a transplant in 2012.

I also read that for the US, an average of 1400 people are on the lung transplant list, on average, per year, and there are around 1200 people who receive organs. I am not 100% sure about these numbers though because I got the information from different sources.

What I said about people needing to be very very sick to get lungs here in the NL is, however, true. Doctors, nurses and physiotherapists alike have all been informing me that due to shortage of organs (especially lungs), people only get on the high urgency list when they only have a few weeks to live. When I compare this scenario to what I hear from the US, it definitely sounds worse here because I have heard of a lot of cases where people go on the list in the US and have the possibility to get called for a lung transplant when they're still "out and about". Obviously they are also very sick, and there are still a lot of people who die while waiting for a transplant, but it does sound more gloomy for us in the Netherlands.

One last thing is that I was also recently informed that even though the transplant allocation method here in the NL is changing and finally adopting the US allocation method, which has been proving more efficient, Holland is still working with both, which means that some people are falling through the cracks because they are still under the old method.
For example, a girl suffering from CF that used to go to my clinic was on the high urgency list, but then the next day they did some more tests and decided that she was no longer on the high urgency list. She passed away the following day. This was due to confusion caused by using the 2 methods (it takes a few years to fully transition to the US allocation method). This occurred just last month. Sad, but true.

 

[Twistofchaos]

Hiya,

It's relevant if you want to figure out how many transplants are actually done on people with CF.
I agree ofcourse that the whole transplant system has to be hugely improved, and mainly that donorship has to be the default for everyone till one objects and some specific exceptions. Which would solve a lot and it's something that is proposed every few years here in politics but never quite makes it.

Anyway in the US 1 per 3700 people are born with CF.
In the Netherlands that's 1 per 4750.

So help me figure out how more people with CF get transplanted when you don't have a huge increase in transplants especially compared to the higher % of people with CF in the population.
Fewer people get screened/go on the transplantlists in the US at all?

 

[nocode]

I maintain that out of everyone waiting for a transplant in the US and in the NL, in the US they have a higher chance of receiving one. Not only do the numbers speak for themselves (I stated those in a previous reply), but just the fact that people in the US are able to receive lungs for a period of over 1 year or 2 and still be alive (a lot of them) at the end of that period shows that the chances there are higher. Like I said, in the NL you can be on the normal list for years but you will not get lungs while you are on that list. This is something that all doctors have confirmed to me. Due do shortage, you only get on the high urgency list (when you are finally able to receive lungs if they become available) when you are extremely sick and close to death.
I was also informed that due to my height (5'3"), it will be even harder for me to get lungs that are suitable in the Netherlands because everyone is much taller than me. This presents another problem.

 

[Twistofchaos]

Ok,

About 4 million people are born in America a year. (some would call them babies)
In the Netherlands about 190.000 people are born a year. (some would call them gorgeous studs)

Ignoring immigration, because who knows what's going on there and atleast both countries have plenty of that so.

4 million / 1 per 3700 people = 1081 people are born with CF a year in the US.
190.000 / 1 per 4750 people = 40 people are born with CF a year in the Netherlands.

1600 transplants a year with 1081 people born with CF a year = 1.48 times as many transplants.
60 transplants a year with 40 people born with CF a year = 1.5 times as many transplants.

Sure everything is much better in the US but their transplantrate seems fairly identical.

You say here the waitinglist is more than twice as big as the transplantrate but in America it's almost one on one. Then what gives? That's not cynical, I'm curious.
They were doing transplants in the US earlier (1969) but we've been doing them for a while here as well (1990, and since 2001 in 3 locations) so I'm not sure how in 2013 we still have a 200+% demand here but not in the US.

Anyway but my parents always saved a lot and me and my sister were indeed raised from early age with the idea to save money if one day we had to go to the US (or another country) if we would need a transplant. To be able pay for it ourselves. Still always live with that idea when it comes to spending money and so CF turned me into a terrible cheapskate. That by the way counts his savings at night in the dark with nothing but a flickering candleflame softly laughing with always suddenly a thunderstorm over my house out of nowhere when I do that. Weird.

 

[nocode]

You're still focusing on the total number of people with cf and newborns etc, and not on the number of people on a transplant list at any given time. It doesn't matter if 1000 people are born with cf or not, what matters is how many of those will be on the transplant list at the same time (as far as what my question is; I'm sure your numbers count towards different studies).

 

[Twistofchaos]

Yes because how many people you put on a transplantlist is quite arbitrary and I rather wish to know how many transplants are actually done. but never mind that.