5 Year Survival

When I was pre-transplant, and discussing the whole idea of getting a lung transplant, everyone, everywhere, constantly told me that half die within the first 5 years. Many people said that you should try and wait as long as possible, because you basically were turning over an hourglass and starting the clock running where you would soon die from the transplant. I mostly ignored such comments, but it does take its toll when so many tell you the same thing. Of course, I knew that the 5 year survival at my hospital was more like 65% and not 50%, and also that part of that statistic was people getting hit by a bus or falling down the stairs, but still, if enough people tell you the same thing, some of it will sink in.

Well, I am approaching my 5th anniversary, and met with my doctor this week, who warned me to not let it get to me. She said that many see the 5 year anniversary as kind of a barrier, and some become much less conscientious about their health and special precautions they have used since their transplant. After 5 years, many think that since they've made it this far, anything else is just gravy and unexpected. Some even give up after they make it to 5 years.

I know that this may sound ridiculous, but the mind is a mysterious thing, and sometimes, things can affect us that we would never expect. I was surprised by her comments, but it is true that before my transplant, I was told that I would be lucky if I made it past 5 years by a very many people.

I was just wondering if this makes sense to anyone, or has anyone heard of anything similar?

Tags: 5 year, Lung, mental, survival

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Replies to This Discussion

Permalink Reply by Brett on January 21, 2012 at 1:03am

First of all, congratulations. What you've written is very interesting. I'm just over 9 months out and often think about the 5 year survival stat. I told a friend who is also post transplant that odds are one of us won't be here in 4 years. Much like just before transplant I will hear of a movie coming out this summer and hope I'm still here when it shows.

I didn't think about the possibility of "quitting" after 5 years. It's good to know about these dangers ahead of time so we can stay in the right place mentally.

Here's wishing you many more great years.

Permalink Reply by Steve on January 21, 2012 at 1:16am

Hi Jay,

Great post and Congratulations on your 5th anniversary!

What you are saying makes a great deal of sense.... If you are like me, in the pre-transplant interviews they may have discussed all of the statistics. I know my doctors stressed that a lung transplant is not a cure, but we're really exchanging one condition for another.....and in some cases we keep what we started with.... My condition/cause for transplant was/is Sarcoidosis. Unfortunately, Sarcoidosis can affect any organ, and will even come back to the transplanted lungs in about 75% of the cases. So, my Sarcoid stayed with me, even when my lungs were gone (eventually taking my spleen and affecting my liver...but that's another story).

I had my Double Lung transplant in Oct. '08, so I just passed my 3rd anniversary. My doctors had broken down the math to me like this: Generally speaking (they said), they lose about 10-15% in the 1st year (this includes about 5% in the first month or so), by the 3rd year, we have lost about 35% and by year 5 we lose 60-65%. And I believe it's about 85% at 10 years. What I was told and read in many articles here online is that these statistics are consistent with the national results (results do vary from one transplant center to another but as I have learned, some of that is due to the acceptance criteria for transplant).

Keep in mind too that they are making incredible strides in improving the methods of transplant and the medications and treatment post-transplant which will continue to make these statistics improve.

The troublesome thing for us is that we still have to deal with the issue of Chronic Rejection, (BOS) which is the highest % cause of death in Lung Transplant. For some still unknown reason, we still have not been able to overcome this irreversible and generally fatal condition. And the statistics for acquiring this are eerily similar to those of the mortality stats.

So for most of us, our limitation will be due to Chronic Rejection (BOS). Unfortunately, I found out I was in Chronic Rejection just a few months before my 3rd Anniversary and my prognosis is not good. In August they told me they expected that I have only about 6-12 months left, possibly as much as 18. ...I guess I fit the statistics right about on the head. HOWEVER, it's important to remember that these are just statistics.

STATISTICS ARE CREATED USING HISTORICAL DATA. The way I looked at it was; the stats only told me what happened during this learning curve. Lucky for all of us still here, we have the benefit of those who took the risk before us. If you could break down these statistic into 5 year periods I am confident you would find that the results have gotten better and better over time.

Hopefully, one of the things we all give back in exchange for this tremendous gift is that our doctors and Transplant Centers are learning from us and that will help our future transplant patients achieve even greater results. Of course each of us, will realize different results depending on a whole host of factors....including our overall health, cause/need for transplant, age at transplant, genetics, and more..... AND as I mentioned, we all know, new medications are being introduced all the time. I fully expect that within a few years they will improve the statistics.

I can understand that some may have different feelings as they approach each milestone. I think it's just important not to get too hung up on what happened to those before us and follow our doctor's recommendations to the fullest so that we can enjoy the benefit of the experience they have gained by these statistics. Even though my doctors tell me my time is short, I keep to my restrictions and precautions, follow all my doctor's instructions and hope that they come up with something in time for me.....if not, then I'll be grateful for this additional time it's given me. Heck, I wouldn't be here now if I didn't have the transplant....so every day is a miracle.

Jay, I never thought much about the stats...like I said, it's nice to understand...but that's what someone else did. You may well see a 10th and even 20th anniversary! Just before my diagnosis of CR, I met a fellow transplant patient who had just celebrated his 10th Anniversary!

Good luck and who knows...maybe I'll achieve my 5th Anniversary and fool them all! I'm sure not giving up....as I say, I Thank God for every day....

Best wishes,

Steve D.

Permalink Reply by Jim on January 21, 2012 at 11:10am

Jay, I am impressed with both replies prior to mine. I just celebrated one year on Jan. 19 for a right lung. I received a left on Nov. 10, 2010 and it has had complications and could not fully support my needs. Steve pretty well said it all, we are all blessed by GOD and our donors along with the great doctors and nurses that have given us this extra time. Don't let yourself dwell on mortality, be happy every day, take your meds as prescribed, excercise, enjoy life but be careful in public places. I always carry a mask and use it when I feel a need and use sanitizer. My plans are celebrate life for many more years and be a witness to GODs grace and the donors charitable greatest gift they could ever give. Your outlook and optimisim helps you daily.

Hope to still hear from you in 10 years and good luck to Steve who hits this issue dead on the head.

Jim B.

Permalink Reply by Peter on January 21, 2012 at 11:59am

Hi Jay,

I never heard and I never thought that some people could say things dumb like that. They really don't know how fare science has improved since the first transplant. I remember when I left my wife in the room at the hospital to go for my transplant never have I thought one second that maybe this was the last time I see her. For me, OK my lungs are sick so replace them and life goes on. After getting back home from my transplant Ive went to so many funerals of friends that thought they had a better health than me. I am going for my 10th. year of my double lung transplant and I feel like a young guy even if I am 60yrs. old. Eat well, exercise, make plans for the future, think POSSITIVE, now that you know my secret go for MANY MANY more years.

PETER

Permalink Reply by Lola Sharpe on January 21, 2012 at 1:38pm

Wow Jay! I think you have been reading my mind. I went to Duke for my 2nd pre-tx visit on 01/18/12 and this was and has been on my mind for a very long time. When I spoke with my MD about it, she kinda got a "your right" look on her face and suggested that I go ahead and plan (fund-raising and weight loss) on the tx, and that once the finances and all are in order ....then I could decide. This is very touch and go. I am alive today, granted, not living a very productive or the finest "quality" of life, but I am here. I worry also about the immuno-suppresents and the chance of me dying from a simple "cold". Thank You so much for sharing. You are positive hope for me.

Permalink Reply by Lola Sharpe on January 21, 2012 at 1:40pm

Thank You Peter! You are another ray of HOPE for me! Sounds like you never looked back. and you continue to move forward. I need to read more comments like this.

Peter said:

Hi Jay,

I never heard and I never thought that some people could say things dumb like that. They really don't know how fare science has improved since the first transplant. I remember when I left my wife in the room at the hospital to go for my transplant never have I thought one second that maybe this was the last time I see her. For me, OK my lungs are sick so replace them and life goes on. After getting back home from my transplant Ive went to so many funerals of friends that thought they had a better health than me. I am going for my 10th. year of my double lung transplant and I feel like a young guy even if I am 60yrs. old. Eat well, exercise, make plans for the future, think POSSITIVE, now that you know my secret go for MANY MANY more years.

PETER

Permalink Reply by Lola Sharpe on January 21, 2012 at 1:46pm

Way to go Steve, thank you so much for your input. I wish you the best.

Steve said:

Hi Jay,

Great post and Congratulations on your 5th anniversary!

What you are saying makes a great deal of sense.... If you are like me, in the pre-transplant interviews they may have discussed all of the statistics. I know my doctors stressed that a lung transplant is not a cure, but we're really exchanging one condition for another.....and in some cases we keep what we started with.... My condition/cause for transplant was/is Sarcoidosis. Unfortunately, Sarcoidosis can affect any organ, and will even come back to the transplanted lungs in about 75% of the cases. So, my Sarcoid stayed with me, even when my lungs were gone (eventually taking my spleen and affecting my liver...but that's another story).

I had my Double Lung transplant in Oct. '08, so I just passed my 3rd anniversary. My doctors had broken down the math to me like this: Generally speaking (they said), they lose about 10-15% in the 1st year (this includes about 5% in the first month or so), by the 3rd year, we have lost about 35% and by year 5 we lose 60-65%. And I believe it's about 85% at 10 years. What I was told and read in many articles here online is that these statistics are consistent with the national results (results do vary from one transplant center to another but as I have learned, some of that is due to the acceptance criteria for transplant).

Keep in mind too that they are making incredible strides in improving the methods of transplant and the medications and treatment post-transplant which will continue to make these statistics improve.

The troublesome thing for us is that we still have to deal with the issue of Chronic Rejection, (BOS) which is the highest % cause of death in Lung Transplant. For some still unknown reason, we still have not been able to overcome this irreversible and generally fatal condition. And the statistics for acquiring this are eerily similar to those of the mortality stats.

So for most of us, our limitation will be due to Chronic Rejection (BOS). Unfortunately, I found out I was in Chronic Rejection just a few months before my 3rd Anniversary and my prognosis is not good. In August they told me they expected that I have only about 6-12 months left, possibly as much as 18. ...I guess I fit the statistics right about on the head. HOWEVER, it's important to remember that these are just statistics.

STATISTICS ARE CREATED USING HISTORICAL DATA. The way I looked at it was; the stats only told me what happened during this learning curve. Lucky for all of us still here, we have the benefit of those who took the risk before us. If you could break down these statistic into 5 year periods I am confident you would find that the results have gotten better and better over time.

Hopefully, one of the things we all give back in exchange for this tremendous gift is that our doctors and Transplant Centers are learning from us and that will help our future transplant patients achieve even greater results. Of course each of us, will realize different results depending on a whole host of factors....including our overall health, cause/need for transplant, age at transplant, genetics, and more..... AND as I mentioned, we all know, new medications are being introduced all the time. I fully expect that within a few years they will improve the statistics.

I can understand that some may have different feelings as they approach each milestone. I think it's just important not to get too hung up on what happened to those before us and follow our doctor's recommendations to the fullest so that we can enjoy the benefit of the experience they have gained by these statistics. Even though my doctors tell me my time is short, I keep to my restrictions and precautions, follow all my doctor's instructions and hope that they come up with something in time for me.....if not, then I'll be grateful for this additional time it's given me. Heck, I wouldn't be here now if I didn't have the transplant....so every day is a miracle.

Jay, I never thought much about the stats...like I said, it's nice to understand...but that's what someone else did. You may well see a 10th and even 20th anniversary! Just before my diagnosis of CR, I met a fellow transplant patient who had just celebrated his 10th Anniversary!

Good luck and who knows...maybe I'll achieve my 5th Anniversary and fool them all! I'm sure not giving up....as I say, I Thank God for every day....

Best wishes,

Steve D.

Permalink Reply by Janice on February 8, 2012 at 4:08pm

I attended Emory in Atlanta's 300th Lung Transplant Celebration last year. There were about 100 recipents who attended. Some were 10, 15 and even 2 recepients at 20 years out. I try not to think about the time but just live one day at a time.

Permalink Reply by sherry on February 15, 2012 at 4:35pm

Hi- I just passed my 5th year post double lung tx. and feeling fine. I too have had a lot of set backs but somehow just pull through and keep on going. I still see the tx doctors every three months - its a three hour drive from my home- but they still want to see me every three months. I take my meds and do what I have been told to do and I forget that I have a tx- I have chronic Aspergillous and am on V-fend twice a day and have been on that med for over a year. I pray to make it to 15 and beyond. Good luck to you all!!!!!

Permalink Reply by Janice on February 16, 2012 at 8:05am

I am 4 years out and feel as thought I am very lucky. The only problems I have is with my Kidneys. They say that is to be expected but it has not gotten worse in the past year. I see my tx doc once a year and have labs and Pfts quarterly at my local hospital.

Permalink Reply by T. Sepulveda on February 16, 2012 at 9:07pm

Hi Jay,

First of all, I would like to say, "CONGRATULATIONS ON YOUR TRANSPLANT AND SURVIVAL". You sound like a person who has chosed to not just survive, but you thrive. I am truly happy for you.

My daughter is 28 yrs old and has been suffering since 2008, and diagnosed with Non-Specific Interstintial Lung Disease in 2009. I just posted a video I did for her this week, and to bring Donor Awareness to the people. Please take a peak at it if you can.

My daughter is still here with us after given only six months to live. She was denied transplant twice, and as of January 2012 she has been listed and so she waits. WE WAIT! I do believe the power of the mind is so very strong. Jen, my daughter is so strong and she has even taught me, how strong our minds are and how we can overcome the negative things that come our way. We too, hear what people say regarding the survive rate and years, and she has been told the samethings you were told. We pay no attention for the most part. I would love to share more. Her story is amazing as is yours is. We have met a few amazing and incredable people that though we knew not of one another, our common bond was, they were like her and their families were like us (Jens family). No need for anything else. We were all connected through the love of life.

Again, Congratulations!!!!! PLease check out my video and it will tell more of Jen's story and in a shorter time than I can tell it.

God Bless.

Permalink Reply by Steve on February 17, 2012 at 3:14am

Tani,

I just want you to know that you and your daughter, Jen are in my prayers.

Steve