Rochester Flowers

The flowers in Rochester are in full bloom. There are different flowers than the ones I see each summer in Lincoln. I’m rather surprised at the Rochester flowers’ hardiness. We’ve had days of hot, humid weather. The kind where even the outdoorsy people are seeking the solace of dark, air-conditioned rooms. The flowers, however, seem unaffected.
Mom and I went to the Mall of America today. I was thinking that the distraction and exercise would do me good since I’ve basically been lying in bed the last couple of days with the overwhelming fatigue, nausea, aches, chills and sweats. But, of course, I got caught up in things at the mall and ended up so exhausted (and hot!) that I gave myself a migraine, plus extra pain. I seriously need to figure out how to pace myself. I might have done a bit better if I had gotten in a good meditation this morning…
Also, I’m supposed to only be taking two doses of Imitrex a week. Period. No ifs, ands or buts. And since my neurology appointment I’ve had two doses. I don’t have the rain to blame anymore so I have to break the chain, otherwise I’ll keep getting daily migraines because my brain expects the drug.
Last night I was thinking about how central physical pain has been in my life and how I still have fears and expectations about it. As in, expecting that if I have to sit in the sun all day I’ll get a migraine. And then that thought or expectation generates fear of the pain to come. Some of my expectations are true, some can probably be overcome. It will take a lot of self-discipline, though. Meditation helps, too because then I learn to disassociate from the pain. I notice it, but I don’t have to be identified with it. This is a crucial journey for me as pain has been a major factor in my life since I was little and pain will most likely continue to be a part of my life until I leave this body.
Tomorrow are my last appointments unless the doctor decides to do another biopsy. This depends on how yesterday’s blood work looks. I hope we can go home, at least for awhile. I miss everyone and everything, Mom even more and I hope we can go for her sake. Also for Ginny who is very lonely. I got her some things at the mall, though they can’t really soothe my guilt over causing so much stress these past five weeks. Daily I must learn to forgive myself for things I cannot help.
I’ve been thinking a lot about what I should do with my life now, provided I become relatively healthy. It stresses me out because there are so many different things I want to pursue but, not having experienced them fully out in the “real world” I don’t know what would be the perfect fit. I know, then, that it’s all in God’s hands and I just need to follow my heart day by day. The right opportunities will be presented to me when I am ready.
But then think of all the projects I already have going or need to get done! Day by day, I tell myself. Life is very different now and it will continue to change. I must be gentle with myself in this time of change and adjustment. Day by day, moment by moment.

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Last Two Days At Mayo

Health Update

I left off with Wednesday so I’ll pick up on

February 17th, 2011 Thursday

I didn’t have any appointments this day so I got in contact with Dean and his sister Kathleen to see if they wanted to get together. We did a little Mayo touring. We went to the patient education center and got free DVDs and booklets and saw the clear, plastic man with the light-up insides. He seriously needs some pants. The fact that this is a rather old piece of educational equipment and therefore yellowing in places does not help matters.

We also went to a meditation room with a labyrinth, prayer wall and a small, circular room with prayer rugs and copied of the Quar’an in it. I completed the labyrith and waited for David Bowie to show up in stripped leggings. He didn’t show. Okay, sorry, geek joke, I know. If you have no idea what I’m talking about just Google “Labyrinth, David Bowie”.

Next it was on to some shopping. We ate lunch and made our way through subway and skyway to the amazing Barnes & Noble (the one that’s in the old theatre). I rather overloaded Dean with

dietary information about liver disease.

Soon my friend from PRC, Jess, showed up. I said goodbye to Dean and Kathleen and continued to putz around Barnes only with Jess this time. We were both exhausted so we went back to my hotel room and acted as lazy as possible, ending our evening with a delivered pizza and TV.

Friday:

Friday morning I got a call from Lynn, my transplant nurse coordinator. She said that the results from my MRI were back and that I had Bursitis. I had no idea what this was other than Lynn telling me I should get cortisone shots in or around the joints.

Mayo’s website says this:

Bursitis is a painful condition that affects the small fluid-filled pads — called bursae — that act as cushions among your bones and the tendons and muscles near your joints. Bursitis occurs when a bursa becomes inflamed.
http://www.mayoclinic.com/health/bursitis/DS00032

That explained all the deep-bone pain then. I’m supposed to rest my legs and arms but still get some movement going on. I read that the movement shouldn’t be repetitive, though.

Soon after that phone call my friend Sage came to pick me up as I checked out of the hotel. Then we were on the road to famous author Neil Gaiman’s house! That’s a whole story in and of itself which I will post on my blog soon. Neil was so totally sweet and charming and hospitable. Looking back on it, it all seems like an amazing dream and then I remind myself that yes, it was real! Sage was awesome for driving to pick me up, then taking me to Neil’s and from there to the airport. I think she rather had fun.

We left Neil’s house in time to make my 3:30 flight, which would have worked out if my flight were scheduled to leave at 3:30. I had misread my ticket and the flight actually left at 3:05. Lucky for me it was delayed and they got me through security quickly and said to take one of those golf carts to the terminal. After security (I wasn’t able to check my bag so I would be boarding with it riding plane side) I was told the golf carts only came every 5 to 10 minutes and I was better off just walking as quickly as I could to the terminal. But with a huge backpack, a laptop case and a huge heavy bag that only went on wheels on the rare occasion that it felt like it, my bursitis kicked in big time. It didn’t help that I got my laptop bag stuck on the edge of one of those moving sidewalks. I’m used all my leg strength to walk back to get it un-caught but it was no good. Some guy came to my rescue and I could tell he was trying not to laugh at what was obviously a hilarious scene. I was not in mood to laugh. At the end of what I was sure would be my death march I came to my terminal. The bird had flown.

A nice lady switched my flight for me, got me a golf cart to take me to get food and wished me luck with my transplant business (I’m yellow enough now that people either avoid me like the plague or ask if I’m okay).

After I had eaten a bit of expensive, low-quality chinese food Jess came to pick me up. I basically lay in a bed at her house and tried to recover my legs as much as possible. Then Jess generously took my back to the airport for my 10 PM flight. It wasn’t long before I was home and sacked out. Because really, who cares that I had to go through all that crap at the airport when I’m gotten to meet Neil Gaiman!?

P.S. To see pictures from my Mayo trip go here and look at the last 8 photos.

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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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