Health Update

November 29th, 2010



Health Update



Okay, I’m going to try to make this as simple and concise as possible but a lot has been going on and it will take some explaining. So just bear with me here.

Life has continued to be narcotic-free. I am not 4 months clean! I go to NA (Narcotics Anonymous) meetings, have an awesome sponsor, and see a chemical dependency councilor.

My PSC has been getting worse, however…but this also means a higher MELD score (last count it was a 21). In the past couple of weeks I’ve been starting to experience PSC symptoms more seriously. Fatigue, itching, loss of concentration, distended belly, liver pain and more active Crohn’s have been the most prevalent for me. The fatigue has got to be one of the worst. It seems like such a understatement to call it fatigue because of how completely debilitating it can often be. It’s difficult to explain to someone who has never experienced it. I guess I’d say it feels a little like being very, very anemic.

Last Saturday my mom drove me up to Rochester where I was scheduled to finish my transplant evaluation. Mom drove back to Lincoln on Sunday because she had to be at work. I was settled in a nice hotel room with a sort of kitchenette, sofa bed, queen bed and, of course, free wireless internet. J

The Mayo buildings are all linked together by a subway and my hotel is hooked up to that subway so I didn’t need to have a car or walk outside in the bitter Minnesota cold. I have come to really appreciate this. I thought it was cold in Nebraska when I left…it’s so much worse here. I’ve already had to buy a new fleece hoodie at the Mayo store to make up for my lack of really warm clothing.

I had tests all during the week. The good news: my lungs, kidneys and teeth all look great. My heart looks okay, too, but as I’m having some artery problems in my liver it’s rather complicated.

My liver rather shocked everyone. It’s very, very big. Judging by how my weight has gone up I’d say my liver weighs somewhere in the 10 lbs area. This isn’t uncommon with my disease, though. With the cirrhosis the liver gets bigger and heavier and I’ve heard of some people having their liver weighed post-transplant and it’s amazing how heavy they get. You can actually see the outline of my liver through my skin. I still have a little bit of ascites so combined with the huge liver I’m looking rather pregnant. I’ve started shopping in the maternity section. No joke.

The pressure of the liver on all my other organs makes it hard for me to breathe sometimes and makes my stomach cramp. I have very little room for food in my stomach so I try to just snack throughout the day. Like a pregnant woman I also have to sit in a recliner a lot to ease the internal pressure. It’s hard to sit up and carry this liver around all day!

That’s how it affects my day to day life. Scientifically, what is going on is that as the PSC infiltrates my liver deeper and further, the bile ducts close up and eventually that area of the liver becomes pure scar tissue (cirrhosis). That part of the liver is dead. According to the docs at Mayo my liver is probably more than half dead (they can’t know for sure without actually opening me up and looking at the liver). One way they know this is by a test they did to look at my heart. I have what is called portal hypertension.

Okay, ready for an anatomy lesson? Open the picture attachment on this email. That’s a liver. See the sort of lavender colored tube with an arrow pointing to it that says “Portal Vein”? The portal vein delivers blood into the liver to be detoxified. However, when there is cirrhosis it meets a dead end because scar tissue is hard, heavy and, well, dead. So now the blood in the portal vein backs up and flows back into the heart. This can cause some bad stuff to happen. I believe the most common thing to happen is for that blood to flow into the esophagus and burst or create varices.

Maybe some of you remember that when I was around 4 my esophageal varices burst and I threw up gallons on blood. They haven’t burst since then but the portal hypertension is putting me at a higher risk. I can sometimes feel this weird sensation in my chest and heart that I know is the portal hypertension. It usually passes within a few minutes, though. Practicing meditation and deep breathing really helps with this because it lowers your heart rate and blood pressure. I also take a medication to keep my blood pressure low.

Here’s a good link that will give a little more info about cirrhosis and portal hypertension. http://familydoctor.org/online/famdocen/home/articles/188.printerview.html

I talked to one of the transplant surgeons at Mayo and I asked him about living donation. He said that if I wanted to do it it would have to be done now because I was quickly becoming too sick for it to be an option. However, he said he didn’t recommend living donation for me because one, I was already pretty sick and two, this third transplant is already very risky. By using only half a liver they wouldn’t have all the hook-ups for the plumbing (remember that picture? All that stuff and more has to be hooked up in the right places in the new liver). Most of the major bile ducts and arteries running into my liver are already in pretty bad shape. The surgeon said they would be taking bits of artery from the deceased donor to put into me to replace my old, shabby equipment. What a great recycling program!

In talking with the surgeon I learned that my chances at making it to transplant are slimmer than I originally thought. It’s great to get to know more people with my disease and compare notes and experiences with them but the other side to that is that I often hear about PSCers who die before getting a transplant. There’s still a lot of hope, though. I wouldn’t be on the transplant list if I and my doctors didn’t think there was a good chance of me getting through this. Currently my MELD score is a 21. If I can just get sick enough for it to get up to 25 I’ll be on easy street for getting a liver

Also, new studies are being done all the time to look into PSC. It’s one of the most mysterious diseases and since it’s rare there is very little funding for studies. Someday, however, we all hope that a cure can be found. A liver transplant is only a treatment, not a cure (obviously, since I’m waiting for my third transplant because of PSC). I know I bully people all the time about this but please look into doing something to raise and/or contribute money to help find a cure. Even if you can just spread the word about PSC that will help. There needs to be more awareness. Visit http://www.pscpartners.com and do all your internet searching through goodsearch.com with PSC Partners as your charity and do your internet shopping though goodshop.com with the same charity.

After many appointments at Mayo I was finally put on the transplant list there! I am now double listed, i.e. on both UNMC’s list and Mayo’s. This covers pretty much all the states in the Midwest. I could get a liver from any of them. That liver would then be delivered to whatever either Mayo or UNMC depending on location. Mayo gets its livers from Michigan, North and South Dakota. Nebraska gets its livers from Kansas, Iowa, Wisconsin and…um, I think that’s it. I can’t remember. But still, that’s a pretty broad range. It definitely ups my chances of getting a liver quickly.

So, all in all, life has had to take a bit of a slower pace and I’ve had to put aside a few things that I’m just not up to doing anymore but I’m keeping a positive outlook and trying to see the blessings and joy in each day. I’m doing my best to get in the very best shape I can for transplant. Taking care of myself is a full-time job and can feel selfish and really boring sometimes but I hope that soon it will all pay off.

I apologize to those I haven’t been keeping in touch with very well. I really appreciate the emails and whatnot. Just be patient with me. You have to understand that some days it’s all I can do to just shower and make a few phone calls. I swear I’m not ignoring you!

A big hug to all of you for supporting me (and my family) during this time and being so understanding. Ya’ll are heros in my book and you brighten up my life!

<3 Becca