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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Painful Thoughts

I’ve learned that there’s a difference between being in pain at home when you’re a comfortable temperature, in your bed, surrounded by those you care about and by familiarity and being in pain in building which is big with high ceilings, kept at a temperature appropriate for storing your perishable goods and filled with architecturally modern, but very uncomfortable, furniture (namely, the hospital plaza with all the doctor’s offices). It makes no difference that warm blankets, beds, small, dark rooms and pain meds are a room away.

Unfortunately, I have two things: pride and chronic pain. I’m too proud to always go around in a wheelchair (and will tell myself I need the exercise until I absolutely collapse). I’m especially too proud to be pushed in a wheelchair by a stranger (and most likely a retired old man stranger) who will ask me all sorts of questions all of which the answer to will be, "I’m too sick to do that." And, frankly, the whole point of the wheelchair is to keep me from experiencing more pain and exhaustion. But do you have any idea how much effort it takes to carry on these conversations retired old man wheelchair-pushing strangers insist on having with a young gal like myself?

Second thing: chronic pain. Doctors don’t like to deal with people who have chronic pain. And when you’re already on a high dose of the world’s most potent opiod, what more is there for them to do anyway? Besides give you the IV version (God forbid!). Doctor’s are always trying to find something else to blame the pain on, too. And I’ve learned that the pain scale is crap. I could say my pain is a 12 on the pain scale and I doubt my doctor would bat an eyelash. Now don’t get me wrong, my doc is doing the best he can and I know it. The poor soul has no idea what it’s like to be me and he doesn’t want to know. And I don’t blame him. He, along with most of my other doctors, is scared of a case like mine. He can’t cure me and one little wrong step on his part could mean severe consequences. I mean, autoimmune disease, plus, on-the-transplant-list, plus chronic pain equals hot potato. No one wants to touch it. Except those really super brainy doctors who come from India. God bless ‘em.

Also, don’t get me wrong and think I love my pain meds or something. I hate having to take narcotics. I mean, I’m a mostly raw vegan. I don’t even put most dairy products into my body. I wish microwaves would die. I get super excited about movies like No Impact Man, Fuel, and Food Inc. Why would I put something as toxic as hydromorphone (Dilauded) or Oxycontin into my body on a daily basis? Because otherwise there wouldn’t be me. I would be dead. Or like Neville Longbottom’s parents (from Harry Potter). Each day would be another level of hell. With these drugs I can cuddle my rats, read books, make origami and spend time with my family. I choose that, even at the expense of putting something horrible into my body.

Even with as much medication as I take daily for pain, I’m usually trying every other avenue first. I’ll try a hot bath, meditation, deep breathing, prayer, etc. If I can get by without the pain med, by golly I will. I don’t want to get into the withdrawal cycle. Many times a good nap and some deep breathing have kept me from having to resort to super narcotics. And even if I do have to take the pain pills I continue my natural methods.

If you were to walk into my room while I was visiting the ER for pain reasons you would hear soft music or Gamma waves playing through some small speakers hooked up to my iPod. The TV would be turned on to the hospitals relaxation channel which shows calm scenes from nature (my favorite are the dolphins). I will usually be keeping as warm as possible and taking deep breaths if I can. After my pain is controlled I may look at pictures of angels, read a soothing book, meditate or just plain conk out.

Anyway, what I’m trying to say is I’m not some sort of narcotics purist and I’m not an addict. However, I will admit that I’m afraid of pain despite its constant presence in my life. So I do choose to use narcotics both for quality of life and because I’m a wuss.

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