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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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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Colonoscopy Craziness

After two days of fasting and bowel prep (leaving me nauseous, constantly sleeping and 5 lbs smaller) I went in for my colonoscopy on Friday. I had asked multiple times during the previous week if anesthesia had been scheduled since I'd had to cancel the year before because someone didn't schedule them. On Friday none of the nurses could access my port (which has been moody lately) and I had to have an IV put in. I was ready to go when the doc noticed anesthesia hadn't been scheduled!!! A nurse tried to get someone to come but anesthesia was booked for the rest of the day. So home I went. We were NOT happy.

Saturday I ate very little since I was still nauseous from the prep. Sunday I started prepping all over with 5 different laxatives (since I can't take the one they would normally use). It didn't clean me out as well as I would have liked but I was guessing that doing a prep so soon after the other one was part of the reason. Also, I only fasted for one day this time. I wasn't going to starve myself and I was low enough of vitamins already. I did my best and went in today. Again my port couldn't be accessed and I had to have an IV. I went under full anesthesia even though I have possible bronchitis.

When I woke up the doctor told me they hadn't been able to do anything because I was FOS (Full Of Stool). So now we have to reschedule AGAIN. That is, if I consent. I'm kinda feeling like I'm done.

In other news my MELD is 15, and apparently I'm having some sort of problems because I had to have extra blood tests done over the weekend. Guess we'll find out about that.

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Shake Shake Shake

I'm feeling pretty good today. I'm still really shaky, though. I've been practicing my singing. My voice not all that great after everything, but I think I can turn things around. I just really, really don't want to lose my singing. Not for vanity or anything but for myself. I love to sing to myself. And to the rats. Especially to the rats.

This morning I got a call from UNMC and....my MELD is a 13! One point higher! We're getting somewhere, slowly but surely.

Don't forget to be checking YouTube for my baby rat videos. Here's one of my favorites.

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