Monday, July 18, 2011

Oh, Shi(f)t! or ... Why PSC is not all bad

I can't get over this quote from a book called Oh, Shi(f)t! by life coach Jennifer Powers ...

"The things that happen aren't happening to you, for you or against you. They are just happening. You are not here to control what happens. Your job is to control how you react to what happens. The way you react to everything that happens will determine how your life unfolds from that point on."

I think this is so relevant to all those who are facing the overwhelming trial of waiting for a liver transplant. Carl and I know first hand that getting a diagnosis of liver disease (and dealing with the physical pain and exhaustion that go along with it) is devastating. But, here's the thing -- you can either choose to throw a pity party or you can choose to embrace the challenge. Feeling sorry for yourself and looking at all the negative aspects of the situation won't help!

Never in a million years would I change our story. Yes, it was a very difficult time. But Carl and I decided early on that we were going to be thankful and positive despite our circumstances. Now, we can look back and plainly see that his battle with PSC was actually a really good thing. If you decide to react to your situation in a downtrodden manner, well, I can pretty much guarantee that the whole experience is going to be a lot more difficult than it would otherwise!

PSC is not happening to you, for your or against you. It is just happening. React positively. Figure out how you can learn and grow from the situation. Be thankful. Continue to live your life to the fullest to the best of your ability. And most of all, don't feel sorry for yourself! Before you know it, the pain will be a thing of the past.

Monday, July 11, 2011

New Facebook page!

Our blog now has a Facebook page! This will make it a lot easier for us to stay connected to readers, and will also provide an easy way for readers to connect with each other. Please like our page, and feel free to share it with others. Thanks!

When do patients with PBC or PSC receive transplants?

I received an email from a reader the other day who has Primary Billary Cirrhosis (a condition that bears a lot of similarities to Primary Sclerosing Cholangitis). She is currently in the earlier stages of the disease, but is already experiencing unbearable itching. Her question to me (because, I'm assuming, she's wondering when she'll be able to get on the list) -- at what stage did Carl receive his liver transplant?

Carl received his transplant on August 8, 2007. When they wheeled him into the OR, his MELD score was 24. When we began the evaluation process four months prior, his MELD score was 16. Is this typical? Well, honestly, it is hard to say. At the time, we were told our that our hospital (Oregon Health and Science University) was transplanting patients with scores in the low-ish 20s. So, in some ways, Carl was pretty typical. However, in other ways, he was not typical at all. For one thing, he was only on the list for five days! A true miracle. Also, patients with PSC often wait a long, long time for their scores to inch up into the transplantable range. I remember (at our first evaluation appointment) asking his hepatologist, Atif Zaman, how long this whole process was going take. He said it could be years! Fortunately things moved along faster for us.

On the flip side, we have a friend who recently received a transplant. He also had PSC, but his score was much higher than 24 and he waited more than a year for his liver.

I guess what it all boils down to is everyone's experience is going to be a little bit different. There are so, so many factors that are taken into consideration. The bottom line, though, is that the sickest patients have priority. It is unlikely that someone with a lower MELD score will receive a transplant because they aren't sick enough. If your MELD score is high, you are probably experiencing complications and your life could be at imminent risk. If your score is low, you might be sick and uncomfortable -- but your disease is probably still manageable (the liver is such a resilient organ!). When Carl received his transplant, he was obviously one of the sickest patients at our hospital and in our region. Someone else with a score of 24 might wait a lot longer. It all depends on who else is on the list and when appropriate livers become available.

Friday, March 25, 2011

Scooping the cat box: Who's on deck?

Disclaimer: The following post contains information that might be controversial and should not be construed as medical advice. It is not medical advice or an opinion on what anyone else should do. It is simply the story of the decision we made.

We have some very exciting news to share! We are expecting a baby. Our due date is October 23rd, and we couldn't be happier.

When we learned the news, though, we had to ask ourselves a big, big question. Who will scoop the cat litter box? Carl is technically not supposed to deal with cat litter because of his suppressed immune system. Pregnant women are not supposed to go near soiled cat litter either. Talk about a dilemma.

By the way. This is our cat, Lucy (a.k.a. "The Looch). We adore her.

We left the cat box to rot for a few days while we mulled it over (totally gross, as I usually scoop it every single morning -- sorry, Lucy). I also did some research and learned a few things about why these guidelines are put in place for transplant recipients and mothers-to-be. Our decision: until the baby arrives, Carl is the official cat box scooper. He scoops it every day, wears gloves and quadruple washes his hands after the chore is complete. We don't anticipate any issues.

I want to emphasize that we didn't take this decision lightly. Carl's health is a big deal, and so is the health of our unborn baby. But the facts, in my opinion, indicate that this is OK. Here's our reasoning: the concern here is a parasitic infection called toxoplasmosis. For most folks, this infection doesn't cause serious complications, but if a woman is exposed early in her pregnancy it can cause stillbirth, miscarriage or serious health problems for babies who manage to survive the infection. For someone like Carl, flu-like symptoms can develop (usually not serious, but it is always more difficult for organ recipients to bounce back). However, we are not worried and believe that Carl's risk here is 0%. Here's why:

1) Indoor-only cats generally do not carry toxoplasmosis. Lucy is an indoor-only cat, and has been her entire life.

2) Carl grew up with outdoor cats, so there is a pretty good chance he has already been exposed to toxoplasmosis. If he's already been exposed, he's immune (according to my intensive research).

3) Cats catch toxoplasmosis by killing small creatures and by digging in manure and by getting into other nasty things out in nature. Lucy does not engage in these activities (we don't believe she's even capable of killing a mouse -- she's so gentle).

4) Toxoplasmosis is spread from cats to humans via feline fecal matter. However, the poop has to sit in the box for two days before the parasite becomes contagious. The solution? Scoop the box every day (something I'm in favor of anyway).

Just to be safe, we're going to have Lucy tested for the parasite next month when she goes in for her annual check up. On the off chance that she is a carrier, we'll adjust our plans. Honestly, though, we're not worried. Carl has already been scooping the box for several weeks, and he's fine.

Tuesday, March 01, 2011

The itchy and scratchy show

Itching and PSC go hand-in-hand. If you have PSC and haven't experienced itching yet, you probably will in the future. I personally consider it one of the worst symptoms because it tends to come and go for years and there is very little you can do to stop it.

As most PSC patients know, the disease involves inflammation of the liver's bile ducts. The ducts are unable to process and breakdown bile, so the bile gets into your bloodstream. The result? Itching (among other things).

Carl experienced itching off and on for at least a decade, mostly in his hands and feet (it is my understanding that hands and feet are pretty typical). It was a problem for him before he even knew he had PSC, and it was terrible. Though nothing really alleviated the discomfort, he did find a couple of ways to take the edge off ...

1) When the itching was so bad that it kept him awake at night, he would wrap his feet in three layers of towels (alternating hot and cold). We have no explanation as to why exactly this helped, but he suspects it distracted his nervous system. 

2) He also had a square of rough mesh fabric that was pretty useful when it came to scratching itchy feet and hands (don't rub, just press). It didn't provide any lasting relief, but it also served as a distraction and allowed him to at least feel momentary relief in one small area.

Unfortunately, there is really nothing your doc can do to make the itching disappear (and on a side note, Benedryl isn't going to help since the itching is not skin or allergy-related). The medication Ursodiol is often prescribed to PSC patients and in some folks it helps manage the symptoms on the disease, but it is really hard to quantify. Carl took Urso for years. He said it did help to some degree, although it definitely did not eliminate itching altogether. Another patient's experience might be completely different.

The good news, though, is that once you have your transplant itching will be a thing of the past!

Update: I talked to Carl tonight about the itching issue, and here is what he had to say.

"As much as you want to, you must resist digging at your skin. It will not relieve the itching and it will create open wounds that can get infected."

Tuesday, February 22, 2011

If there's anything I can do ...

When you are struggling with PSC and the transplant waiting game, people want to help out. They want to know how you are doing, and they want to support you. And so they say "let me know if there is anything I can do."

I always struggled with this, because while I really really appreciated the offers of help and the genuine care we received from our friends, neighbors and church family it wasn't always easy to pinpoint exactly what someone might be able to do. We didn't need child care (no kids). We didn't need help with yard work (not much of a yard). We didn't need meals, and we didn't need anyone to clean the house or run errands for us ... I usually had plenty of time to take care of those things. Nonetheless, people kept asking.

The difficult part about this is that so many people genuinely wanted to help. Turning them away felt wrong, but the idea of coming up with some way for them to lend a hand created more stress. I just had other priorities.

In talking with others who are currently in the midst of PSC or some other health crisis, Carl and I think we have sort of nailed down why "is there anything I can do to help?" is such a tough question to answer. This might be somewhat hard to explain, but I'll do my best. When you are dealing with a potentially terminal illness or recovering from a transplant, you have a lot on your plate. Coming up with lists of things you need is just one more thing to add to the to-do list. Some folks might actually have a lot of stuff they need help with -- but the idea of making a list and delegating items on said list to everyone who wants to help (and even keeping track of who the people are) is overwhelming (if not impossible). And honestly, I don't think the caretaker or the patient needs this extra burden.

I didn't have a solution four years ago, but I think I have one now -- appoint someone to do this for you. A gatekeeper, so to speak, who coordinates meals, arranges for household help, returns phone calls and updates your Caring Bridge site. This can be your best friend, your next-door neighbor, your cousin, etc. (anyone trustworthy and reliable who has the ability and desire to take this on). Trust me, you probably have several people in your life who would be honored to take on this role! This person will keep in close contact with you, so they can find out what you need most, and then they can pass along information to others who are asking.

All of this coordinating and arranging can, of course, be accomplished with email, phone calls and spreadsheets -- but I recently learned of a couple of super cool web sites specifically designed for this purpose.

Take Them A Meal is a "free online tool for coordinating the delivery of meals to someone in need." I haven't used it, but it seems like a very efficient, effective and hassle-free way to handle meal delivery.

The other LotsaHelpingHands allows you to create a free community page where people can sign up for various tasks. So, if you need someone to mow the lawn or to give you a ride to a medical appointment, your delegated coordinator can post the task. Potential volunteers can then see the specific needs and sign-up to meet those needs. I love this idea!

Wednesday, February 16, 2011

Research and progress in the transplant world: good things are happening!

On Sunday, Carl and I stopped by the new Liver Support Northwest meeting to hear what Dr. Scott Naugler (one of the transplant hepatologists at OHSU) had to say about advancement in liver transplants and immune suppression. We learned some pretty interesting info! He talked about the history of liver transplants, and explained the delicate balance between making sure the body doesn't reject a transplanted organ and keeping the rest of the body healthy (if you are into in medical studies, check out this abstract from the a recent issue of the medical journal Transplantation). We also learned about some of the research and progress scientists and doctors are making in the field -- research that could (at some point, probably in the distant future) make a huge, huge difference in the lives of people with liver disease. For example, one area of research involves harvesting human liver cells and growing them outside of the human body. Pretty amazing (in fact, right now, there is a mouse somewhere who is thriving with a mouse-sized human liver in his pint-sized body)! As for the microarray technology,  I mentioned last week, Naugler didn't have any specifics on that topic. And, after listening to his talk, I am reminded that it is probably wishful thinking that Carl will see a med-free regimen in the future (which is completely cool with us -- we're just glad the meds are available!).