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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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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Continued Health Updates

September 17th:

Just want to let you all know I'm home from the hospital. More info later

September 19th:

Hi everyone,

Well, I'm back in the hospital. This time I'm in room 508 instead of 504. I had some crazy pain last night that couldn't be controlled, went to the ER and they admitted me. One X-Ray session and an ultrasound later all we have is an old, deflated ovarian cyst on my left ovary. It may have been there from the beginning or it may have been a new one that burst. My gyno is coming to visit me and talk about it tomorrow.

In the meantime, my dad is in town and I plan to drink as much fresh veggie juice as I can get my hands on. Gonna see if I can't get my juicer brought in.

September 23rd:

Hi everyone,
I've been so busy recovering I haven't gotten around to updating you all.

I was admitted back into the hospital Friday night/Saturday morning. I was still having fevers and was having so much pain that it took multiple doses of hydromorphone throughout the night to control it. Sunday morning the pain was doing better and my dad was in town so I wanted OUT! And out I got. I've still been having a lot of pain and tiredness but I can pretty much control it at home, although I'm having to take far more narcotics than I'd like to. Hopefully it's only temporary.

During this second hospital stay I had an ultrasound done that found a deflated, small cyst on my left ovary. The pain may have been it bursting. We don't really know.

The diagnosis from my first hospital stay: a had E. Coli, a UTI and, of course, that obstruction (which is now gone to the best of our knowledge).

Anyway, I'm home!

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Health Updates

Later on September 12th:

Let's see...I've been put on Cipro (an antibiotic) and I had a very painful ultrasound of my liver done. UNMC said that if my bile ducts looked dilated that I was to be transferred to the hospital there. I hear the ultrasound looked normal, but tomorrow we'll find out for sure. My fever went down but then this evening went up to 100.2 . I just want to keep my blankets!!!

Been having a lot of aches and pains today that aren't controlled very well. I've also felt very weak and cranky. Not feeling very happy right now. Still, not a bad day. I made lots of origami and gave a string of stuff to my nurse. I have a barf basin on my table filled with origami things with a sign that says, "Take One! -Becca) except instead of a dash there's a heart by "Becca".

Natalie/Ginny came to see me and got me a balloon and real food from Open Harvest. She also tought me to play the card game, Golf. Thanks, Gin!
Well, I'm off to fall into a drug coma.

September 15th:

Hi all.
I'm still in the hospital (Bryan West, room 504). I've still been running fevers and have E. Coli and a UTI. I've been having a lot of pain and nausea so I've been pretty doped up most of the time. I have a thriving origami business going on. I make things for my nurses and docs and other people started wanting them to so I kept making stuff. Now the whole front of my table is filled with origami. There are papers to take, too. One I wrote out about what Origami Wishes is about and what the different things (like turtles or stars) symbolize to me. The other paper is a copy of the newspaper article I was in. I've been given $1 in tip money and now have a little box sitting out that says TIPS.

Kathy brought me veggie juice yesterday. I cannot even tell you how good that tasted.

Today I got an abdominal CT and I'm still running a bit of a fever. We were thinking I might be able to come home today but it doesn't look like that's going to happen. Anyway, there's probably a lot of stuff I'm leaving out but the drugs have made everything kind of a blur.

Later:

Okay, so I may be getting an ultrasound to look at my ovaries to make sure they're not the source of the fever. The fever should be gone by now with this much time on the antibiotic. Also, since bowel stuff is still an issue I'm going to be getting a colonoscopy on Thursday. So I'll be here at least until then.

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Hospital Time

Okay, so I have a fever of 102.8 and have narcotics in me. So, if this update is a disgrace to the English language, I apologize. Happy reading!

September 8th: The past few days I've been feeling feverish, weak, etc. I'm having big time nausea. I go to the hospital to get a shot of Zofran through my port so I can take my meds. The nurse is kind enough to leave my port accessed. This means that the needle that goes into my port is left in like an IV. There's a tube sticking out to administer medication. Accessing my port can be a pain, so having it pre-accessed is nice. Saves me a poke if I have to get more med put in.

Nightime: I'm having bad stomach cramping and lots of gas. I take my breakthrough pain narcotic (hydromorphone) but don't have any luck. I'm up all night with pain.

September 9th:

7:30 AM: We go to the ER to get my pain under control. I get an X-ray that shows I'm somewhat constipated but have a lot of gas. I'm given an enema and I go home.

The rest of the day is spent at Gramma's so I could be in a supervised drug coma. Mom had to work. I continued to have pain and took lots of narcotics.

That night I started to have body aches and a fever of 99.5.

September 10th, 2009

Midnight: Mom and I go back to the ER. An X-ray is done and it turns out I have a partial bowel obstruction. Time to suction! One of those nasty tubes is put down my nose and into my stomach and is them hooked up to suction. I started to get some relief from that, although the tube was a pain in the rear. Or rather, the throat. I'm admitted to the hospital for the night so they can continue to suction and give fluids and pain med.

During the day I have X-rays, blood tests, etc. The main thing is the pain in my throat from the tube. I even had to have major doses of pain med to make it somewhat bearable. I learned from my local GI and some of the on-call docs that the obstruction had happened because scar tissue in my abdomen (from all the surgeries) had tangled itself in with my colon. By late afternoon my tube was pulled. Hallilujah!

I'm on clear liquids, which to me means coconut water, clear veggie juices, water, herbal tea and vegan veggie broth with no MSG. To the hospital clear liquids means enough high fructose corn syrup to give me fatty liver disease. Jello, "fruit" juices from concentrate that have all sorts of weird acids in them and caffinated tea. The veggie broth was tolerable. I had coconut water (high in electolytes, potassium and mighty tasty) and herbal tea brought from home. Otherwise I ate a little jello, veggie broth and water.

At night I had serious itching so they tried Benadryl through my port. Omg, I was so out of it and asleep in minutes. I have very little recollection of the rest of the night other than continuing to itch and getting a pill of some sort that cleared it up.

September 11th, 2009

I'm put on a "soft foods" diet which includes milk, pudding, more high fructose corn syrup drinks and more milk. Thank God for Cream of Wheat. I mean, what's a semi-vegan, lactose intolerant girl to do? I got to have foods of my choice for dinner. The salad was sad, but hey, it was salad! I asked for whole wheat bread and got white bread with brown coloring in it. Mom brought me brown rice cakes. Thanks, mom!

This day I slept a lot. I read. I organized my room. I waited for doctors. Mom was at work so I was alone most of the day. I had a student nurse taking care of me. She accompamied me on an X-ray check-up. A nice guy always pushed me there in a wheelchair. The student nurse and the wheelchair dude were talking about school and careers and whatnot and I realized they were both younger than me. It's werid to be getting older and have people younger than you taking care of you in the hospital....

At some point I spiked a fever around 101.7 . Of course, there was no leaving the hospital with that going on. I had blood cultures, stool cultures, urine tests, one of those nasty nasal swabs and an exam by the doctor. In the evening my temp started going down to about 99.2 . They tell me I can go home in the morning provided my temp doesn't go any higher.

I'm still having body aches and needing pain med for it.

September 12th, 2009

5:00 AM: The tech comes in and takes my temp. It's 101.8. Later it's 102. 8 . My blankets are taken away, a cold cloth is put on my head and my room temp is brought down to 60. It's awful. I'm always cold.

Blood cultures are done, I'm given Tylenol. Now we're waiting for further instructions from the doctor. UNMC will be contacted.

My temp was just taken again and it's down to 101.2

Phew! It's a crazy world.

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Tantrums

I'm very, very drugged right now which means that I can actually sit up (sort of) and write a health update. I just haven't had the energy or been free from discomfort long enough to let you all know what's going on.

It's been a very, very trying time lately. There have been so many ER visits and so many problems that plague me that have no answers. It hasn't been easy for me to be hopefull and positive. I have to admit that I sometimes wish for death since my life (at least these past few weeks) has consisted of staring at my bedroom ceiling and crying or moaning or being stressed out.

I still keep up my routine of meditiaion, yoga and Tai Chi (when my neck will allow it), raw food vegan eating (especially lots of veggie juices) and rat therapy. I would love to get a wheatgrass juicer so I can start juicing and growing my own wheatgrass. Tastes like chocolate to me...go figure.

Anyway, I'm having a really hard time not throwing tantrums at the moment.

I've been itching so much my entire body is covered in scabs and rashes. All I can do for that is put on a special cream. Otherwise the only cure is a new liver (MELD is still 15 by the way). I'm either sweating for freezing. Or both. So far no actual fever has showed up on the thermometer but a breif 99.0. Transplant patients don't run fevers since they're immuno-suppressed but apparently no body cares about a 99.0. Only a 100.5 or above.

I've also had encephalopathy(that's ammonia on the brain) really, really bad. Running into walls, forgetting my birthday, hallucinating. It's absolutely horrid. There is no sense of self. You can't distract yourself because nothing holds your interest and you can't understand it anyway. It's been better tha last couple of days when I stopped taking Benedryl for my itching (it didn't help anyway). But I'm still rather crazy.

Somehow I managed to clean my room today, organize my closet and part of the attic. Excellet day; completely unheard of. Then I slept for almost 4 hours and woke up and immediatly took narcotics because my head was killing me. A nausea pill, two Xansex, a super-morphine, a veggie juice and a ginger/lemon/cayanne/honey tea later I'm very drugged, very itching, but able to at least keep something down and not want to blow up my head everytime I move. Thank goodness for deep breathing, home remedies, raw foods and pharmacutical narcotics, huh? I like to keep my health approaches balanced....

If ya'll didn't check out my blog from awhile ago called "Yellow Girl" you should. ( http://beccaspeace32.blogspot.com/2009/08/yellow-girl.html )
I got the sweetest letter from a fellow PSCer and how I had "changed her life" with that blog.

Anyway, I seriously need prayers, good thoughts, good energy and all that stuff right now. I totally believe in it and I appreciate it so much. Please ask for some extra stenghth, courage and grace for me right now. I sure need it! And pray for my mom, too. She has a sinus infection, a job and then ME, her full-time job.

My liver tests haven't been looking too horrible.
My MRA and MRI looked normal, so no anyurism or anything. Which is good but then....what is it?

My doc wrote us a presciption to go to the newest, fanciest health club that has a really warm wave pool thingy and all that good stuff....Hello hydrotherapy, massage, sauna and yoga class! Oh, and health food bar! Maybe I'll never leave....

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Health Update

Whoa. I am so totally overdue for a health update. Sorry, people.

I'm afraid that this time the lack of news is not because I've been doing great but rather because I've been so busy being sick/being in the hospital.

My main problem has been headaches and migraines. Yes, there is a difference. And I'll get them at the same time. We think the headaches (which start in the neck and have occurred since my aneurysm-worthy stress test) may be because of some pinched nerve from the stress test. Yesterday even had an episode where it felt like the whole right side of my brain went numb. Probably not a good sign. The other thing has been heart palpitations that can get really severe. And, of course, constipation because of the tremendous amount of narcotics I'm having to take.

I've been to the ER three times in the past week. First time for a headache. Second time for abdominal pain and vomiting and then I got a headache while I was there. Third time, last night (or rather, this morning) for a headache/migraine.

So we're thinking: NEUROLOGIST. I'm also thinking I should just be admitted to the hospital while they do investigative work so that I can have pain control. This back-and-forth from home and the ER is very tiring on all of us, especially my mom who is at her first day of school today accompanying for the Wesleyan students. It's also Natalie's first day of college at UNL! She's moved into the dorm and seems to be enjoying herself.

Anyway, in other news, the insurance stuff is stable for now.

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Fever

Yesterday I woke up with swollen tonsils and glands. I could hardly swallow of cough. I don't really remember much of what I did yesterday. I think I slept. Oh, yeah, I remember. I sort of went into a coma. As in, I slept really, really hard.

In the evening I had all this horrible pain and just lay in bed crying. At one point I took my temp and it was 101.5 . That meant blood cultures so off we went to the ER. I got the blood cultures plus a few other tests and some pain med. Everything came back normal. However, I've been on antibiotics for a week or two and just started a new one yesterday, so that probably made some of the tests look better. I'm going to see the doctor tomorrow morning to get checked out. There's a possibilty that this is viral and that's why antibiotics aren't working.

Today I'm about the same, though not is quite as much pain and my temp is down to 99

I have to admit I'm a bit scared as things like this can be very dangerous for someone waiting for a transplant.

On a legal note, I've just had to deal with getting out of jury duty. Also, my insurance ran out so we're racing to get something figured out until I can get disability. It's a rather stressful time.

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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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ER visit

I had a horrible headache and nausea today. No amount of narcotics or Imitrex was helping. I think the headache was mostly leftovers from the stress test but I'm sure some sinus pressure was added in.

I went to the ER and they gave me Zofran for the nausea and morphene for the headache. The headache didn't go completely away but I'm not complaining. The pain was just terrible. I could hardly think.

Now I'm at home and Gramma has made me cold cucumber soup and I'm reading and making lucky stars. Tomorrow I go to Omaha for my regular appointment with my liver doctor. I get to go visit my friend Rayne while I'm there which I'm looking forward to.

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Stress Test

I've gotten a little better when it comes to the stuff that was going on last week. But I've certainly made up for it in other places.

One day I all of a sudden felt really, really horrible and shortly after had an "ammonia episode". Apparently the ammonia has been building up in my brain and I haven't been keeping on top of it as well as I should. I went a little crazy. I don't care to go into details.

Also started having a raw-feeling throat and before long a cough. Saw the doctor today and I've got swollen glands and red spots in my throat and all that lovely stuff so I got put on antibiotics.

Yesterday I got an echocardiogram and a stress test done. I'd never had a stress test done, bt UNMC wanted the info so they could make sure I was still ship-shape (relatively) for transplant.

First the nurses screwed up accessing my port so they had to call in an expert.

For the test I was given a medicine that sped up my heart rate. It didn't really work so they gave me some stronger stuff. A minute in to having this put in me I started screaming. I thought I was having a stroke or an aneurysm. The muscles and blood vessels in the back of my neck and head felt like someone was stretching them on a taffy puller. My heart was beating in my head as if I'd been standing on my head for hours. My jaws shut and my tongue swelled up. It was all I could do to tell the doctor what was happening. They stopped the medicine immediately. I had to squeeze the doctor's fingers and it felt like a Herculean effort. The only thing to do was wait while the medicine wore off. I probably lay there for five minutes (it felt like 10 years and I was sure I was going to die at any moment due to Exploding Head Decapitation or something similar) until the pain was low enough that I could start crying like a baby. Even then the pain was at about the level of a banging-my head-on-hard-objects-and-going-to-the ER migraine. After about 10 more minutes, an oxycontin and many cold compresses I was able to slowly roll over so that an full echo could be done since the doctors were obviously not going to be getting a stress test.

I was then wheeled out to where my mom was waiting to pick me up. She must have wondered why a nurse was wheeling me out of the hospital after an everyday medical test.

The fact that I had sinus congestion, had taken my blood-pressure lowering medication the night before, have asthma and two minor heart problems are probably some of the reasons the test went the way it did.

I came home, took an Imatrex and went to sleep. My head still hurts horribly today. I've had to take hydromorphone to make it bearable. Hopefully the horrible heartbeat-speeding drugs get out of my body soon and all is back to normal. Well, semi-normal.

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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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Symptom Paper

If fly paper had a cousin called "Symptom Paper" I'd be it. Really. In order to make my disorganized body look more organized, I've made a list of symptoms to rattle off at my many upcoming doctor appointments and over the phone to overworked nurses.

1. Itching, particularly when lying down and on back of neck and sides. Could be the liver expanding and stretching the skin. Still have to try "liver cream" a concoction made up by the doctors at UNMC.

2. Enlarged liver and liver pain.

3. Shortness of breath even with all my breathing treatments. I saw my Pulmonologist today and we're doing a sleep apnea test, a heart ultrasound and trying a new drug.

4. Low appetite

5. Dizzy

6. Confusion

7. Sleeping a lot, though still suffering from some insomnia because of discomfort, pain and lack of breath.

8. Body temp is cold and having occasional chills.

9. Stomach cramps and nausea. Blood....

10. Increased physical anxiety and RLS probably linked to the depolupron shot I had yesterday.

11. Heart palpitations (even when I haven't had albuterol)


There's a possibility of a fluid collection near my liver so I'll get a CAT scan to see if one exists and if it needs to be drained.

Anyway, yeah, that's where things are. More tests and whatnot will give us more info. Mirarculously (I say with sarcasm) my MELD score has gone down.

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An Overdue Health Update

Hi all,

I've been lazy about updating (as usual).

Let's see...I've been doing acupuncture and adjustments with my chirpractor. That's been awesome. I always feel better when I leave.

I went to get my port flushed and get my blood drawn from it today. I had my two week aniversary with the port on Wednesday. I needed a blood test and I figured getting it flushed at 2 weeks was better than the recommended 4. No such luck. I've already developed a clot. So I'll be going in to get that taken care of soon (they just put a blood thinner in the port and let it sit for awhile).

I've been sleeping a lot lately and not eating a whole lot. Still, I've gained 4 lbs. At least, we think so. It could just be stuff sitting in my system.

Breathing has continued to be a big problem and I'm on a new inhaler. So far...well, it's better. But there's still room for improvement.

Been suffering hot flashes while my insurance gives the gyno the permission to continue giving me my injections with coverage. Obviously my insurance is run by a man...

Insomina has been really bad lately. Normally I don't mind because it means I can just stay up and read. This time around it's been like trying to fall asleep on caffine. You're SO sleepy but nothing happens. And I don't drink caffine except the occasional cup of green tea upon waking. Restless leg isn't helping, either. Unfortunately this means I've been having to take Ambien every night. I really don't like taking that stuff, but if it's what I have to do to stop the torturous nights, I'll do it.

I survived my sister's graduation weekend.

In other news:
*My car has a new battery so I can DRIVE!
*I got a new iPod. It's purple.
*I'm attempting to learn Japanese.
*I'm eating an almost completely asian diet. This does not mean I eat asians, contrary to popular belief. In truth it has a lot to do with rice, noodles, seaweed and coconut milk. My stomach has been rejecting European/American food.
*I've been getting my butt kicked by 6 personal rats, 15 baby rats and 2 mother rats.
*I've been taking bellydancing and doing restorative yoga. Nothing cures constipation like bellydancing
*I'm threatening to stay in bed and not eat if my loyal friends make good on their plans to move east. Wait, don't I do that anyway?

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Recovery and Peace

I'm burning clove incense (clove is good aromatherapy for pain) and listening to soothing music tonight. It's a peaceful end to another odd day. Gina came and (bless her) finished cleaning the rat cages for me. She also helped me with some room stuff like sweeping under the bed, putting up a little hammock for doo dads and securing my bedside caddy to my recliner. What with the room projects and the nice dose of hydromorphone I was ready to do some more work so I did. Mostly I worked on tidying my meditation space which consists of a footlocker full of my writings and some very special memoribilia, two cushions for sitting on and some pretty focal points placed on top of the footlocker. Right now there is a beautiful peony my mom picked for me and put in my favorite blue bottle. I love having living things as part of my altars but I tend to kill most plants so I've ended up with a medium-sized collection of bamboo. I believe everyone, especially the ill, should have living plants around the house. They are so very healing.




I've been feeling very odd lately. I had my couple days of recovery and pain but there have been other things, too. Since the surgery I've had increased physical anxiety and restless leg. My breathing has been worse and I've been very dizzy. I seem to have more of an ammonia brain, too. So I apologize for any strangeness of lack of communication or forgetfulness. I've also had some weird nausea patterns. I plan on calling UNMC and updating them. There's probably nothing to be done, but I should be letting them know.

Me with my port bandages.

In the meantime, I've been trying to help myself along with extra rest, meditation, healthy food and the like. Last night I was up to going to my bellydancing class (something I actually have a talent for). It was a blast and didn't wear me out. It did me good to get out of the house and get my circulation going. It cleared my head quite a bit, too. However, today it was back to being spacy and weird. Even so, I spent the morning outside reading, meditating and doing a bit of yoga.

I've made appointments to see my first chiropractor/acupuncturist. He also does some other therapies that may help me too. Then tomorrow I'm going to see my yoga teacher to do some restorative yoga. I know these things will help me to feel better. I really don't believe in drugs for the most part (although they have their place). Don't get me wrong, I take my medication. I'm just not happy about it. In my experience, holistic methods have always delivered deeper, more profound results.

The meditation altar:

The foster rats are getting bigger and crazier. I'm uploading some new videos to YouTube and some pictures of Pearl's new litter, who are almost 2 weeks, are up on Photobucket (links go to my accounts).

Just an FYI: My sister's graduation party is next Saturday from 6-10 PM at my Gramma's house. Everyone is welcome!

Sweet dreams, everyone!

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