Great news! We have an appointment with our transplant surgeon this Friday at UCSF! Well, actually it’s Kelly’s appointment, I am just excited to go. Hopefully, we will then get a surgery date. =)
Monthly Archives: June 2011
Not much new has happened in the transplant process. The surgeon, Dr. Roberts, is out of the country until July 4 and they won’t give us an appointment date with him (which, at that appointment we will receive a transplant date…) until he gets back. It’s kind of dumb if you ask me.
In other news, Coleman gave me a recap last night of my hospital stay. I don’t remember barely any of it (especially talking to people, my brother said I was talking about rainbow unicorns haha). Apparently, people called me while I was there. I don’t remember that… I just found a card for a doctor that I swear I’ve never met but Coleman said he treated me while I was there. The drugs they give you are crazy and I think because of the state of my liver, I don’t detox them as well.
So, if I talked to you in the hospital and I said something crazy, I’m sorry! It was the drugs talking.
(2 years ago when I had the same drug, fentanyl, I had hallucinations of big foot).
Well, I was released from the hospital yesterday. Yay for that good news. The bad news is that I was diagnosed with colitis. They took biopsies and will get back to me to let me know if it is bacterial or autoimmune. Two years ago, when I had general anesthesia I had horrible side-effects to fentanyl, well the same thing happened this time in the hospital. I have hallucinations and extreme dry mouth for days. I’m sorry if this post is a bit here and there, I am feeling a bit out of it.
I have been doing ok, just extremely exhausted. I was able to get up and do some stuff today, but let me tell you it was with regret. After 4 days of dilaudid I am still feeling the after effects. Tonight my sister Kristin went into false labor, so I somehow drove myself down to see the birth of my new niece, bella grace. That’s not going to happen now… But hopefully in the next 24 hour hours!
In other news, a year ago my mom had a hip replacement. Recently, my mom had a few really bad falls. It looks like she broke the socket and will most likely need another hip replacement. So with a ready to pop sister (measuring at 42-43 weeks), a hurt mom and a girl quite disconcerted by being in the hospital for a few days .. things are a bit crazy here!
The good news? God is good. ALL the time!
I am thankful for doctors that have the knowledge to do liver transplant.
I am thankful for the miracle of birth and the soon to be addition of another niece!
I am thankful that my mom is somehow able to still get around, even with a broken hip socket.
I am thankful that my sister qualified as my living donor.
I am thankful for my wonderful fiance who spent every minute by my side in the hospital, squeezed in the tiny bed with me just to watch some tv.
I am thankful for my sweet nephews.
Cute nephew story:
As my pregnant sister, Kristin, was leaving for the hospital to have bella (or so she thought), Micah yells “wait! you forgot something” and he ran to grab a little purple dress for his new little sister to wear home from the hospital. (He is only 4).
I want to go home, I want to go home! I am alone in the hopsital today. My mom is babysitting, coleman had to leave early this morning for work (he slept here again on the couch) and yeah so I’m really bored and my pain is having a few fits again. Hopefully the doctors will come by soon and let me know what they saw on my bioposy they took yesterday and then they can discharge me. My head needs a few days of fresh air to clear from all the wacky meds! haha
After being admitted last night I talked to the G.I Doctor that is going to do my surgery in the morning (scope procedure). Coleman and I had a fun night last night even though it was in the hospital. They woke me up at 7am, of course like all hospitals.
The scope procedure happened a little after 9am. Thankfully I do not remember anything even though it was conscious sedation. In the procedure they took a biopsy because they’re not sure what is causing the inflammation of the colon. They didn’t find any ulcers or cancer in the colon but they are doing the biopsy to see if the inflammation is from a virus or bacteria. For some silly reason even though they have done crazy amounts of test and jumped through all of the hoops, they still won’t let me eat (only a liquid diet).
So hopefully one more night in the hospital and I will be able to go home!!
Yuck. Hospitals are no fun, especially when you are all alone and nobody comes to see you (yeah sorry for the pity party). Thankfully coleman has been here all day and last night. He has been so wonderful and is such a thoughtful, great caretaker. After an inconclusive ultrasound this morning, I had a CT scan with IV contrast this afternoon. Those are always fun… ok not really, it feels like hot lava spiders are racing around inside your veins. It’s creepy. The CT scan showed some thickening of my GI tract. In order to know what this is, the are going to do some kind of scope procedure tomorrow. Until then… I just got admitted to the 4th floor at Kaiser. Coleman went to grab me some miso soup because I’m on clear liquids. Miso = probiotics = my friends. This is not quite how I had planned on spending colemans day off, we were going to go to pinecrest and have a picnic. Guess I betterr put my God googles on to see what I can learn from this difficult journey!
I’m sitting here at Kaiser hospital emergency room, I’ve been under observation for the last 24 hours. Yesterday I had the most severe pain I’ve ever experienced. A bunch of the doctors can’t figure out what the problem is. I just want to eat! I’ve been NPO since last night. I really want to to know why I’m getting so sick. I guess we will just have to wait a bit … update later =)
Yesterday my mom, Kelly, Coleman (my fiance) and I went to UCSF. This was day 3 of tests for Kelly. It was actually my first time there since deciding to move forward with transplant. I thought (or they made it sound like) we were going to watch a video. Instead it was an hour and a half long powerpoint presentation on what to expect, pre, during and post surgery. Most of the stuff we already knew. However, there was one interesting, shocking statistic we learned: 100% of patients who have transplant develop skin cancer 15 years down the road!
Well, I hate to have to screw up their statistics but I won’t be getting skin cancer at any time in my life because God has given me the promise of health. Whether that health comes in the form of supernatural healing, a transplant, or using natural health (I’ve known quite a few people to reverse their cirrhosis with natural health) or slow recovery, God is the author and finisher of all things! Actually, it was kind of a difficult decision for me to lay down reversing my cirrhosis and accepting where God has me at this point in my life. God doesn’t conform to how we think life should go, we just need to have faith and follow where He leads us, even if it’s the complete opposite of what we had thought before.
Kelly had an ultra sound yesterday. It took forever. We were in San Francisco all day. I don’t quite understand how 2 simple appointments can take all day, but they did. I may have mentioned this in my previous post but I will be repetitive. The doctor that did Kelly’s physical and looked over her tests from Tuesday and Wednesday said that he will be recommending her for the transplant! However, that’s not a surprise because she qualified two years ago, but it’s a step forward toward getting us a surgery date. Oh, I’ve also had more energy lately, not much, but I’m really pushing myself to get my endurance up so I can be as healthy as possible for when surgery rolls around. The plus side of this is that by the time I lay my head on the pillow, I’m out like a light! Until I have something else interesting to say… have a great night!
“Life is 10% what happens to you and 90% what you make of it”
This morning, after talking to some other cirrhosis patients, I figured out that yesterday’s symptoms had nothing to do with a kidney flare up. It was because I hadn’t eaten! When my blood sugar gets low, I get so sick. I get shaky, nauseous, sweaty and loose my appetite. I don’t understand why, I don’t have diabetes. However, maybe they should check that again… anyways, the good news is that I really don’t think it was my kidney acting up, this girl just needing to eat some grub! Mmm and let me tell you, Kelly (I’m staying at her house for the week) makes some ridiculously good food! Last night we had tacos (with my brother-in-law’s awesome salsa).
Today Kelly and my mom went to San Francisco again. I would love to be able to go with them but unless it’s necessary, it is just too much for me right now. I’m a certified couch potato! Haha However, I can’t wait to be a certified energy-addict post-transplant. I can’t wait to get back on the wakeboard! (Speaking of, you should see my adorable 8 year old niece, she was practicing in the living room standing on her wakeboard having her daddy and uncle pull her with a rope, she is a wakeboarding pro for being 8!) Ok back to San Francisco, sorry for my rabbit trails, today Kelly is having a chest x-ray, EKG and a physical. I hope and pray it goes quick and easy for them!
Now, I wanted to write a little about my paracentesis. This is mostly for the benefit of other cirrhosis patients who don’t know what to expect. It was my first time (and I’m sure everyone has a different story of how theirs went) but thought I would tell a little about it. For those reading who have no idea what a paracentesis is, here is a quick blurb I copied from webmd. Also, if you don’t like hearing the details of medical procedures, stop here. =)
“Paracentesis is a procedure to take out fluid that has collected in the abdominal cavity (peritoneal fluid). This fluid buildup is called ascites. The fluid is taken out using a long, thin needle put through the belly. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis.
I went in and unfortunately had Dr. Evil (you know, the one from austin powers), ok not really, but he could have been. He numbed my stomach with a lidocaine shot, it felt kind of like a small bee sting. This wasn’t as bad as the lidocaine shot they gave me for my liver biopsy though. The doctor was working with an ultrasound tech. The tech used the ultrasound to locate the best spot to insert needle to remove the excess fluid. It was kind of neat to see where all the fluid was. I’m not gonna lie, it did hurt when he stuck the draining needle in but it wasn’t too bad. I layed there for about 45 minutes while they drained off 3 liters of excess fluid from my stomach. The doctor left as soon as the needle was inserted. At the end, when the fluid was gone, that is when the pain began. Now I don’t know if that is normal or if it is because my body metabolizes pain killers at a very fast rate and the lidocaine had worn off by that point. It was severe stomach cramping type of pain, so the tech called the doctor. After he didn’t show up, she just pulled the needle out. That hurt even worse. I don’t want to scare anyone and of all the stories I have read about having these procedures done, I haven’t heard any like mine. Most of them are easy and pretty painless. When the doctor finally decided to show up again, I told him how much pain I was in, his response, “well I would give you more lidocaine but that would mean that I have to watch you because I would be giving you a drug” (he also said something about being too busy!) Well, how rude of me to even think of being an inconvenience to him!
Anyways, I was super excited to have the procedure because I wanted to be skinny minny again. However, that was not the case. I was really disappointed that it didn’t take off all the weight. This was probably because not all of the fluid/edema/ascites was not in my abdomen but the remaining bit was in my tissue. You can’t exactly stick a needle into tissue. So I was happy to get off 8 pounds via paracentesis (the remaining I lost with diuretics and homeopathics) but at the same time I was sad that it wasn’t more. In the end, I just have to make up my mind to be thankful in everything and remind myself that it could be so much worse!
Today I woke up feeling ok but as the day progressed I got extremely shaky, started sweating, got really dizzy and nauseous (same symptoms I had at diagnosis of kidney infection 4 days ago). I just keep wondering if I need to go to ER or not… when you are this sick it is so confusing as to when you need to go to ER because something so little could be something huge.
Kelly had her first full day at UCSF today. She had a consent for evaluation with the donor coordinator, meeting with the study coordinator, met with financial counselor, blood typing and lab work, abdominal cat scan and CT with contrast and had to watch a donor video. She spends all day tomorrow and Thursday there as well doing more tests to qualify as my liver donor. Thursday I will be going to UCSF too with my family (mom, sister, Coleman and I). We will be watching another informative video regarding the transplant.