For those living with the specter of lung disease shortening their lifespan, one question is often asked that has never had a very good answer.

 

The question is:
“When should I get listed for a (double/single) lung transplant?” 

Until recently, it was a guessing game… a crap shoot… an educated guess based on very little hard data. In other words, for the most part, people chose to get evaluated and listed was based mainly on emotions and less on science.

 

That was until now. 

When should I get listed for a lung transplant? Finally, there is an answer for that. 

In the past, individuals suffering from lung disease needed to get listed for transplant at least 2 or more years before actually needing a transplant. Most transplant centers had a waiting list that meant that newly admitted individuals would have to wait their turn and that time waiting could often times run into two or more years. This wait time on the list led many patients, working with their doctors, getting listed well ahead of actually being ready to trade out the old lungs for the new - but there was no better way to go about getting in line in time. 

Unfortunately, that system was by its very nature skewed in favor of those patients who could wait 2 or 3 years on the list while their lung function slowly and predictably deteriorated. What it also meant was that those individuals whose disease process moved faster than the list could – those persons would often die during the wait. Clearly, the allocation methodology favored those who could withstand a multi-year wait at a good transplant center where they performed enough transplants to create a demand and a multiyear wait list. The only real alternative for those who couldn’t wait was to go find a transplant center where the wait list was shorter. Generally speaking, centers that did fewer transplants would have shorter wait times. Unfortunately, that also meant that such centers had less practice performing transplants and their outcomes were worse than those performed at the larger centers. The system was patently unfair to those who had an aggressive lung disease. 

It is for these very reasons that UNOS (the United Network for Organ Sharing) changed the lung allocation methodology to offer available lungs to the worst – first. Now it isn’t a matter of how long you have been waiting on the list at a given transplant center that determines if you get a chance at some lifesaving organs; it’s how sick you are combined with the ability to and are you able to withstand the rigors of transplantation. 

Within the lung disease community there is a base line test known as “The 6 Minute Walk”. It is used to determine how far an individual can walk in 6 minutes. The distance that someone might be able to walk on a picture perfect day where all that person’s variables are working in their favor might have a much better walk than they themselves or someone else might have after having eaten a heavy lunch and walking a mile on their own just to get to the test. These real life variables can and do influence how well someone performs in their test. 

But when you get down to it….when you compare apples to apples – comparing good and/or bad 6 minute walks to other 6 minute walks – research is showing something very interesting. 

In the past, when to get listed for transplant was a very subjective decision. Rarely would two individuals use the same set of criteria to come to that point where they say – “I want to get a lung transplant”. Fortunately for the lung affected community there appears to be strong evidence from a recent study that shows that optimal time for getting a transplant would be when the patient can complete the 6 minute walk and cover 400 meters. That translates roughly to 2.2 MPH for 6 minutes. For someone with severe lung disease that is quite a challenge but I may be a little biased since I am nowhere near able to make 400 meters in 6 minutes. 

Based on a study at the NIH (National Institutes of Health) -
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2714545/

They showed that the best survival rates occurred in those individuals who received transplantation when they got listed for transplant when they could no longer complete 400 meters in 6 minutes. That is roughly the equivalent of walking at two and a half miles an hour for 6 minutes – covering 1313 feet. 

On the other side of the coin, according to the Indiana University Lung Transplant program in Indianapolis, IN. they require that patients be able to walk a minimum of 700 – 800 feet in 6 minutes. That means that the prospective transplant patient needs to walk at a speed of between 1.3259 and 1.5160 MPH for at least 6 minutes in order to meet the minimum required distance to be considered for a lung transplantation. 

In a nutshell: 
If your 6 minute walk in under that – you should get listed for transplant. But if you are under the minimum, you need to get into pulmonary rehab and get up to that minimum as soon as you can. 
If you are over, you are still too healthy to get listed. That is a good thing! 
It has always been a moving target for clinicians and patients to determine when the time is right to go through the rigors of transplantation evaluation but at least now, with this study to guide us, we now know when we should make that call to the transplant center and start the process. 
Below is a table I put together to show some of the goalposts in how to determine if you are ready to pursue transplant.

 

Speed in MPH

Distance covered in 6 minutes

 

0.60 / 316.80 
0.70 / 369.60 
0.80 / 422.40 
0.90 / 475.20 
1.00 / 528.00 
1.10 / 580.80 
1.20 / 633.60 
1.30 / 686.40 

1.3259 / 700.08 Minimum Txp.Range. Start
1.40 / 739.20 
1.50 / 792.00 
1.5160 / 800.45 Minimum Txp. Range. End 

1.60 / 844.80 
1.70 / 897.60 
1.80 / 950.40 
1.90 / 1003.20 
2.00 / 1056.00 
2.10 / 1108.80 
2.20 / 1161.60 
2.30 / 1214.40 
2.40 / 1267.20

2.49 / 1312.3440 400 meters

2.50 / 1320.00 
2.60 / 1372.80 
2.70 / 1425.60 
2.80 / 1478.40 
2.90 / 1531.20 
3.00 / 1584.00 
3.10 / 1636.80 
3.20 / 1689.60 
3.30 / 1742.40 
3.40 / 1795.20 
3.50 / 1848.00 
3.60 / 1900.80 
3.70 / 1953.60 
3.80 / 2006.40 
3.90 / 2059.20 
4.00 / 2112.00 

So there you have it.

 

If you can walk more than 400 meters (1312.3440 feet to be precise) in 6 minutes, congratulations… you are too healthy still to consider getting a transplant. If, on the other hand, you are under that – perhaps it is time to get listed.

 

Now, if you can’t cover between 700 to 800 feet in 6 minutes, you should get yourself to a pulmonary rehabilitation program pronto in order to get yourself up to that level of fitness.

 

Transplant centers are very particular about giving organs to people who are not healthy enough to withstand the transplant surgery and recovery process. There are other criteria to be sure… but this article isn’t trying to address those issues. Just this one… and it’s a big one.

 

Good luck and God Bless.

Prostate cancer.

That thing that jumps up and redefines your plans for the rest of your life. Period.

Your cancer is back

In September of 2011 I was surprised to learn that I had developed cancer of the prostate. All indications pointed to a very small and localized cancer on a corner of my prostate. My urologist and I discussed the options... surgery or radiation or watch and wait. Watch and wait wasn't an option. She said it would kill me within 6 years. That left surgery or radiation. I did my homework and opted for radiation since it was considered a cure. I needed to be cured. With my lungs in the shape they are in due to hereditary lung disease, I have to be cancer free for at least 5 years in order to get a lung transplant. At the first of the year, my PSA was 0.8. Dr. Sinha said that it was normal for the numbers to fluctuate for the first year after the radiation was completed. What she didn't tell me was that if it went up for 3 consecutive tests in a logarithmic fashion ... 0.9 to 1.7 in 6 months and to 2.5 in 3 months. Apparently cancers are counted in terms of doubling time. How long does it take for the cancer cells to double. As you can see, mine are busy little sonsofbitches.

When I opted for the radiation as the treatment of choice it was because it promised a cure while at the same time being the least damaging to the entertainment center as well as the sewage treatment center nerves located in that region. As far as I was concerned it was the best possible choice. Apparently, however, it appears to have been a poor choice.

With the cancer back, I now am faced with having to have surgery on a body part that resembles a over cooked Swedish meatball where all of the nerves and tunnels have been mushed together. Before radiation therapy, I could have had surgery on an anatomically normal prostate with potentially few or no problems "down there" post op. Now, however, the story is very much changed. It appears that there is little or no chance that anything will ever be the same as far as the waste processing or the fun rides at "HappyLand" are concerned. Both are doomed to become issues for me in the years to come.

Did I mention that all I wanted to do was to get to be cancer free so I could live the rest of my life with my wife who has had a double lung transplant after getting my own?

Until I can get clear of the cancer, I can not have the transplant. Unless I get the transplant I will not be able to join my wife in the life we had planned on enjoying together.

This cancer makes me angry. I am angry at the cancer. I am angry at the doctors who took aim at my prostate with the million dollar radiation machine and missed. I am angry at my Urologist for not telling me that this radiation treatment path could be a big mistake. I didn't know that 30% of those who opt for radiation have recurrent cancer. I'm also angry to find out only now that my Urologist does not want to do surgery on me because she is afraid that she might not be able to extubate me after surgery. It seems to me that it would have been nice of her to tell me of her bias before letting me decide to go for radiation. To now say I'm too high risk is somewhat disingenuous if you ask me. I'm angry. I'll admit it. Damn it I'm angry.

This was supposed to be over and done with and it isn't. I watched my dad die from a mix of COPD and prostate cancer. It was not pretty. He was 74 and a shell of his former self. A shell.

I intend to keep on fighting. I have an appointment on the 31st with the IU medical center in Indianapolis and I've already called the transplant center at Methodist to alert them to the kink in my plan for transplant. I've been told that being cancer free is the goal and even though the rule is 5 years free prior to transplant, I may be allowed to count the past 2 years toward that.  In the meantime I'm finding myself rushing headlong into the oblivion of neuter hood. Dr. Sinha's last gift to me was her assurance that she has some patients on hormone therapy that survive 5 to 10 years out. Since she wasn't willing to do surgery, this was her best 'advice'. I'm 57. Screw her.

Back in 2001 I was evaluated for a lung transplant at Methodist hospital in Indianapolis. As part of that evaluation, the transplant surgeon sat across from me and said... "You know John, only 50% are still alive after 5 years."
I said, "I know and you know what? After 5 years, 50% are still alive!".

He said, "I like the way you think."

I'd like to think I still have the right thinking going on. Before the end of the year... I will be cancer free. I will be ready for my new lungs and I will no longer be the man I was born as and yet I will praise God every day for every breath He allows me to take. I will continue to engage in pulmonary rehab. I will keep taking care of my loving wife and never consider for a moment that she won't take great care of me.

It's hard to not post some bawdy joke of how I'd love to get to sleep with as many women as I possibly can between now and the surgery... but that is not who I am... in fact... it's not who I ever was. I married my first wife out of a misplaced sense of commitment to a bipolar woman who was determined to graduate Purdue with a husband. She did. Me.

My second marriage was to an opposite to my first. She was mildly autistic and had a high functioning autistic son to boot. To paraphrase Billy Joel, I go to extremes.

Ironically, only last year did I marry the love of my life... an alpha-1 friend of 14 years who has been there for me for many of my best and worst days. My best friend. Carole and I are together as we head into these final chapters of our lives. She is 10 years post double lung transplant and now in need of a kidney transplant caused by the damage of 10 years of caustic anti-rejection drugs on her kidneys. God only knows how long these future chapters will be but I can assure you they will be the sweetest... the best and most honest and loving of any chapter I've lived to date.

Stick around. It's beginning to get very, very interesting.

May God bless us all with His peace as we head into the future unsure of what that will hold for any of us.