Break Please?

No sleep tonight (again). When do I get a break? When will my body regulate its temperature, have less pain and discomfort, look healthier? When will I get free enough from the fatigue to have a somewhat normal day? When will I wake up without nausea swirling, threatening in my stomach? If God bestows these gifts to most people, why not me? Will this pass or will I, despite all efforts, live and die like this? I feel death in me, waiting, watching for me to lower my defenses and for a physical opportunity. I thought the transplant would mean years more of life, most of it reasonable healthy. Now I’m not so sure. I’m determined to keep my will to live strong and to enjoy the beauty in life. Yet still, in the background, I prepare myself for death. Few will understand this.

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12th Liverversary

March 17th, 2011

Today is my twelfth year with this liver. I was transplanted on St. Patrick’s Day twelve years ago. I remember it well. It was 1999 and my mom, sister and I were living at my Gramma’s house. My parents had just separated and my sister and I were going to my mom’s old school in her hometown of Lincoln, Nebraska. I was currently sleeping in the basement on the fold-out couch. I heard a small noise and was instantly wide-awake. I don’t think I was sleeping so well those days due to the disease and stress of the move. I sat up in bed and grabbed onto a frog stuffed animal I had been sleeping with. I thought I heard the phone ring and looked at the clock: Six AM. Who would be calling so early? As I waited to hear another sound that might clue me into what was going on I heard my mom’s voice very faintly. She sounded like she was talking to someone. I quickly put two and two together and my heart skipped a beat. Hardly able to believe it I made my way to the stairs at the top of which was the phone and my mom. I climbed quietly, slowly and unbelievingly up the stairs on all fours, stuffed frog still in hand. My mom finished her conversation on the phone and, after hearing it I was sure. I climbed the rest of the way up the stairs at the top of which my mom’s nightgowned form appeared.

“My liver is here, isn’t it?” I said.

Mom, who had a strange look on her face, replied, “That’s right. Get dressed quickly and get your stuff. We need to get to the airport.”

Soon after we were at a place by the airport called Duncan Aviation. There was a volunteer pilot there getting his jet ready to take us to Rochester, Minnesota where the Mayo Clinic was. An hour’s flight later we were driven by a charter car to the hospital. Preparation in the PICU (Pediatric Intensive Care Unit) took a couple hours. Washing in a special body wash, getting an IV started, being hooked up to all the machines and other such medical preps.

I remember being really excited and happy. Even after saying goodbye to my tearful mother and being taken to the ER I was in a wonderland of possibility. I was getting a new liver! Think of how much better my life was going to be! Not to mention all the stories I could tell my friends at school.

In the OR my eyes feasted on the biggest spread of medical equipment I had ever seen in my seven years of medical tests. A nurse was sorting huge buckets full of clamps. “It looks like she’s sorting silverware!” I said excitedly and expressed my frustration that I couldn’t stay awake and watch the whole operation. But all too soon I was falling under the powers of the anesthesia.

After only a week recovering in the hospital I was set free to live the rest of my life. But three years later the PSC came back and so here I am today. That wonderful liver that was such a miracle twelve years ago has been turned against me, although it still fights as best it can. This liver has been with me longer than any other and we have bonded very well. If you’ve never had an organ transplant you can’t understand the special relationship that forms between the organ and the recipient. I can’t quite explain it other than to say that there is constant communication between the two entities. Not only that but you acquire a few new memories that are not yours but that of the organ’s former owner. Even things like hair and eye color change. I got my wavy hair and green eyes after receiving this liver.

My mom never contacted the donor family of this liver and I have enquired of my social working about doing this myself. I was hesitant at first because this liver isn’t exactly being a ‘gift of life’ at the moment. But I don’t think I’ll mention that in my letter. I just want to try and express the gratitude I have towards that family for making the decision of organ donation for their child (I received an entire pediatric liver meaning that the recipient was probably younger and smaller than I was at the time). It’s really impossible to truly express thanks to someone for giving you a second chance at life when there were no other options but the point is that contact is made and this often brings the family closure.

I wish you all a happy St. Patrick’s Day. Please don’t destroy your liver with drinking on this day. Instead, raise your glass of appropriate beverage and say a toast to life. Today I celebrate my life and the amazing privilege I was given to continue living it when my body had almost given up. Life may be hard for me these days but it is, wholly and undoubltably life. And it’s beautiful.

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Mayo Days 1 & 2

Health Update
February 16th, 2011

Tuesday:

Had abdomminal and vaginal ultrasound. It hurt less that I had anticipated and soon I was dozing. Then it was off for a blood test and to give a urine sample. Too tired and sore to walk back to my hotel room, I napped in the sun on a couch in the Gonda building where one of the walls is a big window. Also, I had a yogurt parfait and some hot chocolate which I, of course, dribbled on my Super Liver PSC Partners shirt.

Next I saw Lynn, my wonderful transplant nurse coordinator. I gave her my first attempt at lucky star hoop earrings and an origami string (she picked stars made out of pink paper with hearts and musical notes printed on it). I was really not feeling well and just sort of moaned to her. Not too long after I saw my liver doctor, Dr. Tahlwalker. He ordered MRIs of my legs and gave me some Tramadol for the pain until we could figure out what was going on. We also discussed presenting my case before the UNOS board to see if my MELD score could be brought up a few points. He is going to talk to my surgeon, Dr. Rosen about it and he sounded pretty confident that this could be done. With my bilirubin so high, my symptoms being what they are and my high ammonia level (which is hard for me to control because I have a hard time the Lactulose) I probably have a pretty standard case. Dr. Rosen came in to say hi to me and really just said, “You look very green.”

I gave a good amount of origami strings to the ladies and gents at the desks on the transplant clinic floor and told them to give them to people who were having a particularly hard time. But really they could go to anybody. I new creation of mine is also hanging with the other origami at the check-in desk.

Then it was time to chill and eat delivered Japanese food. The Tramadol Dr. Tahlwalker had given me was helping my pain so I had a much easier evening than I would have had without it. Tramadol is not a narcotic but is very close to one. I take as small a dose as possible as little as possible. It won’t get in the way of my standing on the transplant list. I mean, it was okay-ed by my Mayo transplant doctor, so all is well.


Wednesday:

First off I saw the social worker. Got info to contact the donor family of my current liver. Basically I can write a letter just telling them how much I appreciate their sacrifice/gift and tell them how it’s helped me live a fuller life. The letter is then sent through an agency so it’s all very anonymous. The donor family has the option of contacting me back but I am told this doesn’t happen often.

Had an MRI of my legs which I, of course, slept through. Saw the gynecologist about my ultrasound but everything looks good, so that’s a relief.

During lunch I met another person on the liver transplant list. I sat with him and his sister and we swapped stories and medial tips. We shared contact information and got some pictures together. Hopefully I can see them tomorrow since it’s a day off for me.

So those are the highlights. It’s been very busy and I’m exhausted.

Love and Light,
Becca

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Health Update

Dear Friends and Family,

As Facebook becomes more popular I have been using it to post little updates about myself (what I’m doing, my health, etc.) to keep all of you informed. However, I know a few of you are not on Facebook so I will continue with my health updates as much as possible. I’m not always forthcoming about what is going on with me on Facebook, anyway. Instead I usually just ask for extra prayers and good thoughts when I am having a rough time.

I am writing from Rochester, Minnesota this evening. I am here for my 3-month check-up (both UNMC and Mayo want to see me every 3 months while I am on the transplant list). I am hoping to have some things cleared up and made better while I am here.

Pain control has become a bigger issue as I have more abdominal and liver pain. It is hard for me to sit up for more than a few hours, sometimes less. And lying down is rather uncomfortable as well. I’ve also had increasing pain in my joints, especially the knees and shoulders. Nausea is a bigger issue as well. I’ve also been having very bad chills (although no fever). Portal hypertension has been pretty well controlled but it’s still an issue sometimes. Heptaic Encephalopathy has been much worse as of late with my last ammonia level being 160! Note: Normal ammonia is 24-40.

My MELD score was at a 23 a couple months ago but it’s gone down to 20 (lower on the list so to speak) as I’ve become sicker. My bilirubin is higher, however, so jaundice, itching, aches and digestion are worse. While bilirubin factors into the MELD score it does not count as high as, say, the INR (which has gotten a tiny bit better) and Creatinine (which has mostly stayed the same).

I’m going to discuss with my doctors the possibility of having my case presented before the UNOS board to see if my score can’t be brought up. I’m not sure how that will go over as I’m not currently hospitalized or suffering from any major infections. Mostly I just want to see if there’s anything to be found out that can help me be in less pain and live a fuller life while waiting for a transplant.

Tomorrow I start appointments. I will do my best to update you all along the way.

Thank you to all of you for lending your support and prayers through this time!

Much love,

Becca

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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

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Some PSC Info

Doing some online gift shopping and hoping to support a great cause? Well look no further than http://www.pscpartners.org/shop Funds from your purchaces go to further research in finding a cure for PSC (the liver disease I have). Having funds for this research is vital as the only known treatment for PSC is a liver transplant; and even that is often temporary (just look at me!).

Also, on the same note, I'd like to share a link to an article about a friend of mine who suffers from PSC. It's a wonderful bit that gives a good glimpse into what it's like to live with the disease and what the disease does. I hope everyone I know reads this. Click here.

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Thanksgiving

This is another post from the PSC Partners Seeking a Cure discussion board. The "friend" in this post is Rayne, of course!

I got an email today from a good friend who has inflammitory Crohn's. We have a lot in common besides our health issues so friendship was natural. Her email was just to say hi and that her husband forgot to get potatoes. My response is as follows:

No! Not the potatoes! Us sick people need bland starches, darnit! lolI made asian food and nibbled on a little of "real" thanksgiving stuff. I did eat pie. Last year I was too sick to eat much and there was no pumpkin pie left by the time I felt a bit better. I threw a pity fit about how it was already bad enough that I had missed out on Thanksgiving stuff and felt too miserable to socialize much and now my last shred of tradition had been ripped out from under me. This year I made sure to at least eat a piece, even if my stomach wasn't thrilled about it.

My friend responded saying she spent days taking Phernergan beforehand and had done alright in the eating department. However, she admitted to me, she was secretly not a Thanksgiving fan because of the emphasis on eating, which is always a struggle for her (and us PSCers). My second reply is as follows:

I'm with you on the "secretly hating Thanksgiving" part. Back before I was veggie I used to spit out my turkey into a napkin when my parents weren't looking. I was used to lunch meat (which I don't think really counts as "meat") but the real thing wasn't something I found very appetizing. My mom is the same way. This year I was able to eat okay, but I ended up getting weepy anyway because I was so drugged that I couldn't be "present" and have a good time. Right now I'm really going downhill and, after a week of being a normal 22-year-old and not going to the ER, it seems so cruel to be thrown back into this sick life. Especially around holidays where you have some sort of Hallmark expectation of yourself.

I thought that probably a lot of you were having some thoughts along the same lines. Maybe holidays can be hard for you because of your illness. If you need to rant about it, rant about it. If you have some tips, please share. Maybe by getting together and realizing that we all struggle on somewhat of the same level with some of the same things around the holidays will help us all feel less alone.

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The Month of Health

From teh PSC Partners Seeking a Cure discussion board:

So, by some miracle, I woke up one morning about a month ago and felt great. Yeah, I had my moments and still needed some pain med. But let me tell you, I was out shopping and driving. I bought high heels and lacy underwear and told myself I didn't have to face a life of Ugg boots and hospital-appropriate panties.

I wore makeup and did my hair. I hung out with friends. I cooked food. I ATE the food. I danced and laughed. My MELD went down to an 11....which wasn't so great, but my health was showing on paper, anyway.

I wanted to share this because, although this board is a good place to come when you need help, it's also a place to come and tell people, "Hey, things will be okay and I'm living proof of that!"

For the past 4-7 days (can't keep track) I've been really starting to go downhill. Back to where I started. It's hard and sometimes that brief breath of healthy air seems like a curse. Like life was taunting me or something. But deep down I know that's not true. I came back with new lessons, a new perspective and some cute new outfits. Before this happened I was pretty sure I wasn't going to live that much longer. I'd even written down some funeral plans and asked my dad to come to Lincoln so I could see him one more time. So believe me when I say, if a one-month-of-miracle-health can happen to me, it can happen to you.

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Two Health Updates

Monday:

So, yeah, I've been really sick. I've been having weak spells where I can barely move, I've got a fever, I'm achey, I'm shakey, I have ammonia in my brain plus about a billion other things. I've been seing my doctor a lot and we even went up to Omaha. I'm seeing my chiropractor every other day. It sounds like the doctors WANT to hospitalize me, but they don't have a reason that insurance will buy yet. Omaha is getting a copy of the CD of my CAT scan tomorrow and that'll give them more information.

In the meantime I'm lying in bed sleeping or making origami. Or just plain staring at the ceiling. Thank goodness for nurse Velvet and the rats.

Tuesday:

I was told if I got a really bad "weak spell" (one where my heart beat goes all mushy and my breathing gets shallow) I should go to the ER. So go to the ER we did last night when I had a weak spell and aches all over that even heavy duty narcotics couldn't take care of. The doctor didn't really understand what I was experiencing even though I tried to describe it in many different ways. Nevertheless, I was given more pain med, got an EKG, blood cultures and urine sample test done. So far they are unconclusive. So far. I'm also wearing one of those 24-hour heart monitor thingys.

Also in the works: tests for my 1-year-on-the-transplant-list checkup and seeing the pulmonologist about my breathing problem. Oh, and the colonoscopy :(

UNMC should have gotten my CAT scan today and I called them but they never called back.

My doctors are being exceptionally brainless at the time I need them most to help me. Add to that the fact that I'm a medical mystery.

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The Latter Days

Every day of sickness can seem like a year. Sometimes every moment is so clear and precious. Others days every moment is a frustrating boundary or a dark cloud of pain. I've been having some of the latter days.

I know it is beyond my control, but I'm tired of not being able to be the loyal friend I think I should be. Everyone works so hard for me and gives, gives gives. Sometimes I think that if if I'm not working towards something (like returning a friend's phone call or finalizing plans with them) then everyone else must be having to work extra hard. Then I feel guilty and I feel angry at my disease. I feel like I'm constantly letting people down.

Living with a such a severe illnesses as mine is like living between the worlds. I know I've said this before, but I think it bears repeating here. When you're living “between the worlds” you feel like if you can't be a part of the lives of those around you and the world around you then you'll disappear. And yet the amount of effort it takes to communicate, to connect, seems gargantuan at times.

I've told my friends to always let me know what they're doing so that if I feel up to joining in I will. But more often than not I have to turn down invitations. Everytime I do that I feel like I've let them down, like I've given in to my disease. I know this isn't true, but it's how I feel. When I do get out to be with my friends I often end up pushing myself or covering up any pain I'm feeling. I don't want to let the disease win. I feel like if it shows, if it interferes, it wins. I also feel like I'll worry my friends too much if they see my true condition.

Yesterday, however, I decided that my friends wouldn't want me to be putting on some mask. I tried really hard to allow myself to be how I feel. It's hard, though. I cover up even at home. I'm tired of having to have people take care of me so, even if it kills me, I'll get up to do something myself. Or maybe I'll hide my symptoms until I really can't anymore.

I wish that people would come here to see me. It seems like my friends very rarely come over. I'm always coming to them. At home I feel like I have more permission to be sick. At home I can stay in bed, I can wear whatever and I have all my “supplies” at hand. I realize people want to get me out of the house and I appreciate that. I do like to get out of the house. But most of the time it's far more trouble and pain than it's worth.

Then I think that if people did come over I may be too sick to really respond to their conversation or to participate in what they're doing. Again, all they do is give and I have nothing! I feel so guilty and selfish because of it. I want everyone to realize that, although I may not respond to you with the feeling you expect it's not because I'm not interested. It's just that communication is so much work for me. Sometimes it's all I can do to send a simple text message.

And all of those times where I seem to disappear or fail to communicate—I haven't stopped thinking about all of you! If only you would come to me then maybe I could express how much I appreciate you better. I love it when people come to visit me!

It seems that I am doomed to fall short of others' expectations. Or are they my expectations? And I mustn't think that.

There will be a miracle.

I will get better.

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