How an organ transplant changed my life
July 20, 2014 9:14 PM   Subscribe

John Faherty tells his story of undergoing a pancreas transplant in a bid to cure his type-1 diabetes.

"Pancreas transplants are not experimental, but they are not common. In 2013, there were 16,894 kidney transplants performed in this country and only 256 pancreas transplants."
posted by soelo (33 comments total) 27 users marked this as a favorite
Fascinating. Thanks for posting.
posted by ocherdraco at 10:21 PM on July 20, 2014

That's a remarkable story.
posted by SLC Mom at 10:39 PM on July 20, 2014

My hands still shake from the medicine, and they always will.

posted by benzenedream at 10:46 PM on July 20, 2014

Huh. I have a colleague who had a pancreas + kidney transplant a few years ago. I didn't know it was such a rare thing.
posted by mollymayhem at 10:50 PM on July 20, 2014

What a wonderful piece of writing.
posted by incessant at 10:53 PM on July 20, 2014 [1 favorite]

I do research in this area and am also a two-time transplant recipient myself (kidney - thanks, dad and mom!) This article nails down precisely a lot of the challenges people face post-transplant. A transplant is not a cure, and rejection is not unlikely at some point down the road, so you're in a constant state of expectancy (as another researcher once put it). I wrote more about the challenges transplant patients face previously on Metafilter.

Kidney transplants are overwhelmingly the most common type of transplant, in large part because living donors are possible and each deceased donor can provide two of them. So far in 2014, over 5,408 kidney transplants have been performed in the US. Contrast that with 273 kidney/pancreas transplants or the even lower number of pancreas transplants (71). In fact, only 9,339 transplants of any organ have been done this year - kidneys account for more than half that, and about a quarter or kidney transplants have come from live donors (1,735 total). This data all comes from the United Network for Organ Sharing, which maintains a very comprehensive database.

This post was excellent, and I really appreciate John writing about what he's experienced, and in such a lovely and eloquent way. Thanks for sharing it here.
posted by k8lin at 11:24 PM on July 20, 2014 [15 favorites]

That is an amazing article. Thanks for posting it.
posted by medusa at 2:12 AM on July 21, 2014 [1 favorite]

It strikes me that just a pancreas transplant isn't really a good deal. Instead of taking insulin, you have to take immunosuppressants, which are really nasty drugs.

That's not the case for a kidney; you're taking immunosuppressants but you no longer have to do dialysis every couple of days. I can definitely understand why people do this, and I'm sure it's a massive improvement in their lives.

And getting a kidney and a pancreas at the same time looks like a win. You'd be taking immunosuppressants anyway for the kidney, so adding a pancreas doesn't change that, but does mean you don't have to take insulin any more.

But just a pancreas? No. The only real advantage is that insulin has to be injected, and immunosuppressants are pills.

So I'm not surprised it doesn't happen very often. A surgically-implanted insulin pump sounds like a better deal all around.
posted by Chocolate Pickle at 3:50 AM on July 21, 2014 [2 favorites]

Insulin pumps are great. I wear one. But they will never give you the granular control a properly working pancreas will. That makes all the difference in longevity.
posted by Benny Andajetz at 4:24 AM on July 21, 2014 [3 favorites]

Chocolate Pickle: There's also the advantage that you're trading pills for (hopefully) never checking your blood sugar and finding a nasty surprise in one direction or the other. I'd take that deal in a heartbeat if it meant never having to stumble blindly out of bed and make a run for the carbs. It's literally the worst feeling I've had or can imagine having, worse that 3rd degree burns, worse than recovering from surgery, worse than that time the temporary crown fell off my tooth and I bit it hard.

Really though this should have been a solved problem decades ago. I remember "promising trials" with dog/pig islets into monkeys with some kind of encapsulation. No immune suppressants, no fuss/muss. It was 10 years away from people when I was diagnosed in '91. I'm convinced it's never happening at this point. There's too much money to be made with patent insulins that are 6-10 times the cost of the behind the counter stuff and don't work any better. Also selling pumps and pump accessories.
posted by mcrandello at 4:28 AM on July 21, 2014 [2 favorites]

Thank you for this. I work in ICU, and during the summer months we see an uptick in the number of patients who come in with traumatic brain injuries. Caring for a patient who may potentially be an organ donor is very complex, both medically and psychosocially, and it's rare that we ever hear about the final transplant outcomes. I always love reading stories from organ recipients.
posted by makonan at 4:43 AM on July 21, 2014 [6 favorites]

Also selling pumps and pump accessories.

If somebody does cure Type I diabetes Medtronic will probably sue for criminal interference with their business plan. Pumps and pump supplies are the same price today they were my my wife was one of the early users 20 years ago. The volume alone should have brought prices down a bit.

Lee Iacocca was funding some very promising research 15-20 years ago. I donated and used to get regular email updates. Haven't heard anything in years...
posted by COD at 4:44 AM on July 21, 2014 [2 favorites]

Now that I read the the whole article...

I'm sure his statistics about complications due to diabetes are correct, but they are also based on data collected when diabetes management was two shots a day and trying to eat the same number of carbs at each meal. Carb counting, 4 shots a day, and adjusting your insulin dose to the meal only became common around 1990, and the pump is only used by about 25% of Type I diabetics in North America. I don't think we have any data yet on what the long term complications are of well controlled diabetes, because I don't think we have enough data on people with 40+ years of well controlled diabetes.

Personally, I think some sort of artificial pancreas that auto adjusts your dose of insulin in real time based on constant glucose monitoring is probably a more realistic option for most people in the relatively near future. They are getting pretty close on that already.
posted by COD at 5:10 AM on July 21, 2014 [1 favorite]

Terrific article. Another one of those medical treatments that getting through is much harder than one might ever expect from the outside. He writes about it so well.
posted by leslies at 5:42 AM on July 21, 2014 [1 favorite]

I kind of wish we could not Monday-morning quarterback his medical decisions in this thread? I mean, it'd be great if every diabetic could manage their diabetes easily with shots or a pump, but that's not actually the case. This man lived with active diabetes for years. Insulin shots for 22 years, and a pump for 12 more. He has 34 years of experience managing diabetes with insulin, and his doctors still thought that a pancreas transplant was his best bet, in spite of the crushing side-effects of the antirejection drugs and the miserable transplant experience.

It does sound like he was fully informed about all of the possible side effects and complications of the transplant, but assumed that he'd be one of the lucky ones.

I also am kind of troubled by the idea that he's only a Dad if he's able-bodied enough to lift his kids, shop for the groceries, go out for a bike ride, assemble a dollhouse with 119 tiny screws. He got the transplant to be there for his kids. How is that not being a Dad?

Also, the transplant program I'm familiar with deliberately separates pre-transplant and post-transplant patients from one another. I assumed that was generally the case, but it doesn't sound like that's true in the transplant program he was part of.
posted by pie ninja at 6:09 AM on July 21, 2014 [14 favorites]

Such a good article, and it does make you question if the procedure is worth it. I imagine that reading it might put you right off, if the transplant was one of your options. So, informative and valuable, the best sort of journalism.

I wondered about the photographs, about the process of stopping to self-document in the middle of these very emotional moments. Obviously, a professional decision by the two of them, both journalists, probably taken even before they committed to the procedure. Very hard-headed decision! In documenting the emotional impact of the transplant, altogether contributing to the truth and journalistic value of the article. I do wonder what might have been published if he'd died? - which it seems there was a fair chance he might have.

Also I think he made a fair case for the difficulty of maintaining control over diabetes long-term, and the unlovely prospect of decline. On preview, what pie ninja says about that.
posted by glasseyes at 6:21 AM on July 21, 2014 [1 favorite]

Also I think when you've had an active, capable, taking-care-of-business life, it's a huge part of your identity, self-image etc.
posted by glasseyes at 6:25 AM on July 21, 2014

What an amazing story, and so well-written.
posted by xingcat at 6:57 AM on July 21, 2014

That article has entirely turned me off the idea of a pancreas transplant. Maybe when I'm older I'll change my mind. Maybe. Maybe if the procedure changes dramatically.

What I'm surprised at is what appears to be the continuing non-specificity of immune suppression treatments. It is likely a very specific antibody (or set of antibodies) that's targeting the new pancreas; don't we know yet how to identify exactly which ones (that part seems easy: there'll be a huge increase in their numbers after the transplant) and shut just those ones down, instead of having to suppress the entire immune system?
posted by clawsoon at 7:00 AM on July 21, 2014

Well, I'm in tears.

That article has entirely turned me off the idea of a pancreas transplant. Maybe when I'm older I'll change my mind. Maybe. Maybe if the procedure changes dramatically.

My dad has been in medicine his entire life. He smoked until well into his 40s and retired just over a year prior. In January he was diagnosed with Stage IV lung cancer - with a five year survival rate of about 1% - and given a more realistic 12 months. Chemotherapy is generally ineffective and treatment is pretty poor. Other complications exist including metastasizes to his adrenals and a broken hip - which he's been walking on for the past 6 months (seriously - 6 months)

But, he lied to me about how severe his cancer is (and if you look through my askme questions, you'll see a little bit of my naivety as a result) and as a result, I'm trying to fight the odds. I coach my mom and my dad from over the phone on how to fight Stage II cancer - which I assume he has and has a ~30% chance of survival.

My dad's 40 year career in medicine made him say that he would never go through chemo therapy when I was younger. He knows how bad it is and how he the quality of life suffers. He knows the strain it puts on family - and at this time in his life - that is largely just my mom, since both my sister and I are 12 hours away. My sister, is pessimistic about his condition and sort of writes him off. My mom, who as a result of him being in medicine has never had to be the principal medical provider or decision maker. Everything about this would read 'he will not fight this'.

And yet, he does.

Maybe it was just for my words, maybe it was because I told him how tough it would be but that I reminded him that he survived Vietnam and this is going to just be something he'll have to power through - that the success on the other side is actual success - that there is a better day - that if he wants this that he can beat the odds. Maybe he wanted more time with mom - or that he didn't want to stick my sister or I with her... Maybe he fought it for himself, that on his 12 month to live deathbed, stuck in a wheelchair, in constant pain, that he wanted to do this. For whatever reason... he chose to do it.

So, he's now in his 7 month, and he chose to fight. He's been through countless rounds of chemo at this point (countless for me, he knows them well). In april, they told him that if the tumors responded that he might be eligible for a total hip replacement (with a cage for you Dr types... so the 5 hour variant, not the 3), but that there would be a very small window of opportunity to do it, because surgery requires this host of conditions and one is that you can't be on blood thinners, something that his chemo meds apparently double up as for side effects. I was lucky enough to be visiting when he got the news that yes, it was possible to do the surgery - but I also got to hear the doctor do the traditional string the patient along line because realistically they don't want to give a hip to someone that is going to die 8 months from then. So when they said "more chemo" and "we'll have to see if the chemo is effective" I took that as code words for "we're not really going to do this."

Well, my dad continued to push hard, continued to do the chemo, continued to fight... they delayed twice, but every time they've tested there have been steady improvements - unexpected improvements. the tumor on his adrenals is gone, the one on his lung has dropped significantly in size from the chemo. At the end of July, he will go under the knife - something that would not be happening if he had kept with initial plan and opted not to fight something like this.

Maybe the perceived current road to recovery will end in tragedy five months from now, maybe his hopes, my mom's hopes, and my familys' hopes are all too high - but the signs of steady progress have moved him further and further forward towards recovery - and if not recovery - at least longer than the original 12 months they gave him. There are days when it is horrible, but his improvement from frailty six months ago to now is astounding.

To fight or not fight an illness is always an individual's decision - giving up is always an option. The options the author had were really, die, lose a limb and die, be sickly then die, get a transplant and die, or get a transplant and live. Two of those outcomes involve getting a transplant and only one involves living.
posted by Nanukthedog at 7:56 AM on July 21, 2014 [3 favorites]

In early 2012, Laura was hired as managing editor of The Enquirer, and I was hired as a reporter. So we moved to Cincinnati, put the kids in school, bought a home and I found a doctor.

Chuckled when I saw this. Not that it affects the credibility of the article, though. It was just the matter-of-factness about the statement.
posted by Mental Wimp at 8:03 AM on July 21, 2014

That is the Cincinnati Enquirer, a newspaper and not the tabloid. I had the same reaction when I first read this until I saw the domain of the article.
posted by soelo at 8:19 AM on July 21, 2014 [3 favorites]

In my future, I saw a footless, blind and impotent man having a stroke. And my gums would hurt.

Got to love that dark humour. Great read.
posted by colie at 8:43 AM on July 21, 2014

I don't get the quarterbacking. It seems pretty likely that John's paranoia that his health was about to decline dramatically wasn't really paranoia, it's what happens to Type 1s eventually and he had reached the point where his levels were uncontrolled even with good compliance, so it was underway.

I do think the post-transplant weeks are maybe played up a little for drama so that people walk away with the wrong message. Major abdominal surgery is incredibly traumatic to the body (which wasn't healthy at the start of surgery anyway), organ transplant is traumatic, anesthesia is basically medically-induced brain damage, and you do not pop out of bed and go dancing a couple of days later. It is normal to feel so fucking awful that you cry and say you regret it and scare the shit out of everyone. Pneumonia, unfortunately, is still a serious risk with post-surgical bedrest on immunosuppressants. The couple of months after any transplant are hard and scary as hell even when things go great, and that should be a thing people are prepared for but it is not a good reason to not have a transplant that experienced doctors believe you should have.

Dying of diabetes feels really fucking awful too except it tends to go on for years and years as bits of you quit working and/or get taken away. There is a lot of time for regret and scaring everyone, so much time that it does not fit neatly in a 7-minute documentary.
posted by Lyn Never at 8:58 AM on July 21, 2014 [5 favorites]

mcrandello, a pretty large proportion of the kinds of trials you mention didn't make it through even stage I because of safety issues and the (understandable, sensible) resulting difficulty in convincing people to sign up for new tweaks on the same old paradigm.

There are a lot of more human-relevant trials going on right now--at various stages (many still recruiting)--but, as always, clinical trials are tough things to qualify for, much less commit to, when stakes are high. Even when data is collected in trials that end early like this one, it tends to get locked up and never used. One of the recent Mayo Clinic trials that was cancelled early due to low subject recruitment (only 2 people were found eligible enough to be treated) is a good illustration of this. To quote the cancellation report, "The sample size (n=2) was too small to perform a meaningful analysis; therefore the data were not analyzed due to study termination."
posted by late afternoon dreaming hotel at 10:19 AM on July 21, 2014

Also possibly worth noting, the 2013 Elaine Stritch: Shoot Me doc goes into a bit of detail about her diabetes, drinking, and the problems those two things (among others) precipitate for an 86 year old woman. At one point Stritch goes into a pretty profound hypoglycemic event on camera, developing some aphasic attributes and struggling with memory and communication amid her growing sense of feeling very unwell. It was unsettling to watch, but just as much of a public service as articles like this (which I generally applaud for their frankness about personal medical matters, which have too long been relegated to the impolite-or-dangerous-to-discuss category).
posted by late afternoon dreaming hotel at 10:27 AM on July 21, 2014

clawsoon, that is an excellent question. Immunosuppressive drugs are actually fairly targeted - they don't just suppress the whole immune system, but specific cellular processes within the immune system.

Because I don't know much about all this, I asked a smart-as-heck biochemist friend to explain it better, and this is what he said: Tacrolimus (prograf) targets T-cells that contain antigens. When an antigen (the foreign object against which the immune system needs to mount a defense) is identified inside a cell, there is a special set of proteins that bind it and bring it to the surface where it can bind with the T-cell receptor on the membrane of the T-cell. With Tacrolimus, the T-cell receptor binds to cell with antigen at the surface causing increased calcium, but now the calcineurin is bound by this FKBP12 protein so it can't bind to and activate NF-AT, meaning those cytokine genes won't be upregulated by that transcription factor and the cells will not mount an immune response to whatever that antigen was.

This is an incredibly limited view of all the regulation that surrounds all the proteins and molecules that are involved and it only barely touches on the intricacies and redundancies of the immune system, but no doubt that "antigen" can be other things that aren't "your new organ" and thus you become "immunocompromised" when you take these drugs.

Any virus/bacteria/poison/etc... can be an antigen. This is why rejection drugs cause increased susceptibility to infections. The idea (as far as I know, and take that with a grain of salt, because my knowledge is limited) is to get a kidney that matches close enough that your body won't mount a full on immune response and reject it right away, and the closer the better. You will never have a new organ that your body didn't create that won't have some immune response, but if it's close, drugs like prograf will allow you to suppress enough that your organ should be healthy and won't be rejected, but they also cause your body to be slower to react when an infection or virus or other scenario would otherwise cause your immune system to kick in and fight the invading cells/molecules. The redundancies in your immune system (and that fact that tacrolimus isn't 100% at blocking dephosphorylation of NF-AT) means that you aren't going to die from a cold necessarily as you still have some functioning immune response, but it's probably best when taking such drugs to simply not get a cold.

I asked him why we can't target specific antigens and he said we just don't know how to do that yet, for whatever reason, although there are undoubtedly people working on that very problem. This is one of the holy grails of transplant technology, and as we can see with more specificly targeted drugs like Prograf, we've come a long way.

Also, I failed to mention this in my comment above, but another reason that there are so many more kidney transplants performed than other organ transplants is not just because there are more available kidneys; it is also because the waiting list for other organs is smaller - there are just fewer people who get pancreas transplants, or liver transplants, or heart transplants, etc. Kidney disease is an epidemic in the United States and in many parts of the world where hypertension and diabetes are prevalent. Those two diseases are the leading causes of kidney disease. For example, right now there are 100,890 (yeah, you read that right) people on the waiting list for a kidney, while there are 1,181 people on the pancreas waiting list, 2,051 on the kidney/pancreas list, 15,748 on the waitlist for a liver, 4,003 waiting for a heart, 1,620 waiting for lungs, and 53 on the heart/lung list. So kidney transplants are more common in general, and it's a bit misleading to compare the numbers of transplants performed without also considering the size of the waiting lists for each organ.
posted by k8lin at 3:16 PM on July 21, 2014 [3 favorites]

The transplant decision is tough. This guys is unique.( I think, I'm not an expert.) He got to choose transplant. My choice was transplant or death.

FUN FACT: When they call you saying there's a transplant available you can say 'no.' There's a lot of reasons you might do this. You have to trust your doc in these situations. Fortunately I got lucky and had a good, reasonable doctor.

Getting a transplant is trading one set of health problems for another. I know people who got a transplant and feel great and have few problems. Others have tons of problems because of the immunosupression.

My hands still shake from the medicine, and they always will.
I had a liver transplant, maybe pancreas is different, but you eventually reduce the prograff and the tremors kind of diminish. MMV

Let me tell you, it is and existential brain-bender to get a transplant from a deceased donor. Imagining someone having to die for you to live will keep you up at night. :P
posted by hot_monster at 3:51 PM on July 21, 2014 [1 favorite]

it's probably best when taking such drugs to simply not get a cold. Ha! Yes! If only it were that easy.
Yeesh. I had a virus for months that normal people would get rid of in a few days.
You're in a weird world when it comes to symptoms. Getting a fever while on immunosupression drugs it's an 'Oh Sh**!' moment. By the time your body can react to disease with a fever, the disease has a tight grip on you.
posted by hot_monster at 4:05 PM on July 21, 2014 [1 favorite]

My sister was 27 when she died of Type 1 diabetes coupled with grand-mal epilepsy; neither condition was ever controlled well, but this was in the late 60s and early 70s and things have improved somewhat over the years, though I think the combination of the two disorders would still be a major challenge today.

She had been a diabetic for 15 years when she died - of her second heart attack. She was blind, had only a few very bad teeth and terrible gum disease, was on kidney dialysis, and had lost one foot, toes from the other, and three fingers to amputation. And there was more - no part of her little body was spared.

In those days, patients didn't even have the resources to check their own blood sugars at home - they had to rely on urine testing, which was obviously hours behind what would have shown up in the blood. Her food was weighed - so many grams of this or that, and her insulin titrated according to her urine tests, which was pretty pointless. She took two forms of insulin, one of which was pig insulin and the other synthetic. She had been to medical institutions in Arizona, where she lived, Texas, the Los Angeles Children's Hospital and Stanford University.

She was so, so damaged by this disease, and when she was just a little kid.

I wish she could have had a chance at even an insulin pump - or a new pancreas - but things change over their own time and we have to wait for the medical advances that might give us life. How many people died of TB before they tamed it? It's the way it is.

I'm so glad this man's transplant is working. He's been through enough of the hard stuff now and it's time for some good life with his family. I thank him for writing about his experience; his story will go down as one of the early ones to receive a pancreatic transplant. In time, it will seem amazing more from an historical perspective than from a medical one because there will be something that works - really works - for Type 1 diabetes.

Thank you for posting this.
posted by aryma at 4:55 PM on July 21, 2014 [3 favorites]

Oh, I know, hot_monster - it's so much easier said than done! It's downright impossible to escape colds as a transplant recipient, despite being super careful, washing hands a lot, etc. In the past few years I've had quite a few "normal" colds, the flu twice (despite flu shots), pneumonia, several infections, dental issues, etc. Being immunosuppressed is really difficult. I think my friend was being a bit tongue-in-cheek when he wrote that part of his description about how immunosuppressants work. You get sick easier, it's harder to treat, and you're sicker for longer when your immune system is suppressed.

And, yeah, the symptoms of colds and infections are all messed up when your immune system is suppressed. A lot of our symptoms come directly from the immune system, so usually when I'm sick I just feel exhausted and bad - I don't get a runny nose, or a sore throat, or a fever - unless it's really, really serious. You have to be very mindful of how you feel at all times. It's a full-time job.
posted by k8lin at 5:05 PM on July 21, 2014 [2 favorites]

Really though this should have been a solved problem decades ago. I remember "promising trials" with dog/pig islets into monkeys with some kind of encapsulation. No immune suppressants, no fuss/muss. It was 10 years away from people when I was diagnosed in '91. I'm convinced it's never happening at this point. There's too much money to be made with patent insulins that are 6-10 times the cost of the behind the counter stuff and don't work any better. Also selling pumps and pump accessories.

There are a fair number of Type I endocrinologists and researchers (myself being one), which makes such a conspiracy unlikely. The number of people that work to develop a drug/therapy is very large, and getting all those people to keep their mouths shut when any of them could win a Nobel prize with the result is unlikely.

The islet encapsulation work was overly optimistic, and most immunologists even at the time thought it was a long shot. The immune system has been dealing with biofilms and bacteria secreting all kinds of protective goo since it evolved. Even if you make a sphere that the immune system can't get into, insulin has to get out, and insulin is a fairly big molecule. Meanwhile, the macrophages are surrounding your alginate/buckyball/polystyrene/etc. sphere and secreting hydrogen peroxide to bleach the foreign cells to death. Good luck preventing that.

Most JDRF work is presented to get grants, which means "cures" within a visible future. Lots of donors are also to blame, since they will push to get "cure based" research funded, even if the basic science hasn't been figured out at all (e.g. islet stem cells without immune tolerance).
posted by benzenedream at 9:48 PM on July 21, 2014 [2 favorites]

Speaking of encapsulating insulin producing cells inside of a protective film and implanting into people: there's another device entering trials. I've been a Type 1 diabetic for about 24 years and have stopped keeping very close track of work on these types of solutions. They've kind of always been "just around the corner", which makes me lose some hope when they're actually not. We've talked before about how hard it is to even monitor bloodsugars accurately, let alone use that data to dose insulin and other medications.

There is some work going on to develop an external, mechanical artificial pancreas that seems promising. We've talked before about how hard it is to even monitor bloodsugars accurately, let alone use that data to dose insulin and other medications. As a couple companies get closer to gathering blood glucose data that is accurate enough to be useful, other problems crop up. For instance, while insulin (the hormone used to lower blood sugar) is stable for use in insulin pumps, glucagon (the hormone used to raise blood sugar) needs to be almost immediately after its mixed. Both hormones are required for a closed loop system. Now teams are working on the glucagon problem.

Basically every aspect of managing Type 1 diabetes is complicated. In some cases extremely complicated. This is a great, well written story that captures the frustration and despair that I suspect a lot of us feel from time to time. I'm glad people are working on multiple new options for treatment. It can't come quickly enough.
posted by pkingdesign at 10:31 PM on July 21, 2014 [1 favorite]

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