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Fever, Drain & Emergency Clinic Visit to UCSF

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I mentioned 2 days ago that my JP tube was clogged and leaking. Well, yesterday was quite the exciting day. UCSF has provided us with a 24 hour number we can call to get a hold of a surgeon at any time. It’s amazing! We talked to one of the surgeons while he was in surgery (through a nurse). He called us back yesterday morning and said that we should come in to have my drain pulled, the leaking would continue until the hole closed up but at least I wouldn’t have to carry around a plastic drain that didn’t work. It was very nice of him because, really, I could have lasted until Tuesday with the drain, it would have been a huge inconvenience though!

I also woke up yesterday with a fever. My fever had climbed the last 3 days. 3 days ago it was 97.8, the day before it was 98.6 and then yesterday it was 99.6 and 100 a few hours later. This is a pretty good fever for me because my temperature is always around 97 degrees. I knew instantly, from the back pain, that it was a kidney infection. I am prone to kidney infections. I also just heard that prograf, one of my anti-rejection medications is hard on the kidneys.

We stopped at Kaiser on our way to UCSF to get a urine test for kidney infection and for my normal Thursday blood draw. She said we would have the results from the UA (urine analysis) as soon as we got to UCSF (2 hours). It took them 3 pokes to get my blood drawn, they were pretty intimidated by how bruised my arms are. I will have to post a picture, it is quite horrifying. However, the ladies that did the poking were incredibly sweet so it made up for it a little.

We get to UCSF and I meet Caroline. She is my post-transplant nurse practitioner. I will be seeing her a lot. She was so sweet and we talked weddings! (She just had a destination wedding in Hawaii, which Coleman and I have tossed the idea around). She was getting ready to cut the stitch (they stitched the tube inside me) and pull the tube/drain out and I asked if it would hurt. She said that it was different for everyone, I hadn’t had mine in very long and that some people developed scar tissue around their tubes. I wasn’t expecting much pain… boy was I wrong! It felt like she was trying to pull my liver through that tiny hole. And I expected maybe an inch or two of tube to come out… not 15 inches of tube with tiny holes throughout the whole thing! My mom said it just kept coming and coming… (I couldn’t bring myself to watch her pull it). She did it fast but my right shoulder felt like it was going to fall to pieces from the pain. That wonderful referred shoulder pain. Then she put a bag over it that had sticky all around, that was supposed to catch the never ending river that was flowing out of that small hole. The pain stopped about 5 minutes after she pulled the drain thankfully, then it was back to kidney pain.

She also got my UA results, of course, I did have a kidney infection. So she just wrote me a prescription for cipro and told us to pick it up on our way home. Awesome! I was terrified that they were going to admit me and give me IV antibiotics. I was very thankful for a prescription. We were in and out of UCSF in 20 minutes! It was better than going to the ER!

This is where my day took a turn for the worse. I can look back now and laugh but at the time… I was so distraught! So because I am on diuretics and have a kidney infection, I had to pee and I needed to pee right then and there. We were in Oakland (for those of you out of state, Oakland is the most dangerous and scary city in California). And we stopped in the ghetto! I had to… we found a Rite Aid. When I was walking into Rite Aid, I realized that my bag, catching my fluid, had failed. I was soaked, my shirt, my pants, everything. I was so disgusted. Then the women’s bathroom was taken and I couldn’t wait. I went into the men’s bathroom. As soon as I went in a black man was waiting at the door, very impatiently might I add. The men’s bathroom had no toilet seat covers (of course not) and no toilet paper. Here I am, soaked and needing to pee. So I did what I could, thankfully there were paper towels. I walked out, in tears, apologized to the man, who rolled his eyes at me and waited for my mom to get out of the women’s bathroom. I was a crying mess. And there was a woman also waiting for the women’s bathroom so she was staring at me. My mom had to buy me pads to soak up the leaking from the hole. It was the most awful experience!

My back was killing me too and I knew that my sister had been needing a heating pad for her pain and I wanted one because we were planning on spending the afternoon with her and my kidneys needed a heating pad for the afternoon. So I bought her one and called it a selfish gift because I used it first haha! But she loves it and it has really helped her shoulder pain, so that is good news. She was like a zombie yesterday when we went to see her, she was in so much pain but she didn’t let us know, I thought she was just acting crazy from her drugs, turns out she was in excruciating pain that the pain killers won’t touch but thankfully, she has learned advil does. Advil and a heating pad so she is doing much better today. We both took morning naps this morning. I told her she needs to rest (she keeps overdoing it) that she is incubating a liver. =P

I had never been so thankful to get to my sisters, thankfully I had extra clothes in case we were admitted to the hospital for the kidney infection. I was able to clean up and then just hang out with my liver giver, my best friend, my sissy. Then last night I asked other transplant patients how long their holes took to close. I got anywhere from 4 days to 3 weeks. Ok, that was doable. I could handle having to use a pad on my stomach for a few days. Now I can also laugh at my Rite Aid experience too! It was so dramatic at the time but if anything else had gone wrong, I don’t think it was possible…

Well, the great news is that this morning I realized that I had stopped leaking and a scab had started to form! That is 12 hours my friends, not 4 days! That speaks of my body’s ability to heal fast! I am so excited! We put a tegaderm band-aid on it and hopefully, it will work. It may still ooze some but that is better than the river that was happening yesterday! Praie God for quick healing time!

Also, I have been on His favorite list. Two days ago I realized I didn’t have an i-pod charger and that I needed one. Coleman told me to get one from Wal-Mart. Yeah, ok, whenever I have time to do that… Well, before I had my transplant I would always sign up for freebies. Yesterday, a freebie came in the mail… an i-pod charger! I couldn’t believe it. I was like wow, thank you God for saving me a trip to Wal-Mart and some money!

Then yesterday I ordered my sister a shirt that says “What Am I, Chopped Liver? Yep, I Am! Proud to be a liver giver for my sister!” from zazzle. Today I get an email that zazzle is having a 50% off sale. We call them up and ask for a refund of the difference, in less than a minute they say sure, no problem, we will do that for you! So I got the sale price! I was pretty excited about that too. All these little things that God keeps doing for me, He continually blows my mind! He is good all the time. And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. Romans 8:28

I got all my labs back yesterday. They are better than ever. My liver function labs are normal, my platelets are normal for the first time EVER, everything is normal! It boggles my mind to have normal labs haha. The only thing that wasn’t normal was my white blood cells… but that is because I have a kidney infection that they were so high. And I am finally starting to feel a little bit better, the horrible back pain is starting to subside (after 4 days of back pain…).

All in all, yesterday, although rough at times, was a great day. I got my drain out, my hole has closed up, I didn’t get admitted for the kidney infection and it is started to clear up on its own (my temp was 97.4 today). My blood pressure is normal (it was crazy high in the hospital, like 190/87 for days). My heartburn has disappeared (thank you Jesus! that was miserable). So, right now, besides the difficulty and pain of surgery itself, I have no other side-effects. I am taking vitamin D and magnesium in the middle of the day (with permission from my transplant team) and I really feel like it has helped my healing along. Along with everyone’s prayers and God’s love.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. James 1:2-5

Coleman shared this with me yesterday when I called him crying after my Rite Aid experience. I love my man of God. And I do count it pure joy to endure trials because they do make me stronger… and they give me funny stories to tell!

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About Kortni

I received a living donor liver transplant from my amazing and selfless sister, when it failed, I got a 2nd transplant 4 days later from my other hero! I have an amazing family and wonderful, supportive boyfriend. I love hiking, photography, natural health care, being outdoors and crafts. Did I mention that Jesus is my best friend and He has blessed me immeasurably!

3 responses »

  1. Hearing about your tube removal brought back memories….mine was not painful, but just weird. It felt like my insides were spilling out and it was so warm!
    Mine healed very quickly. It was crusted over and stopped leaking after about 3 days, and completely healed in about 10 days. I think exposure to air without a bandage helped. Maybe yours will heal faster without the bag than with.
    I am happy for your normal lab results. What a triumph.
    Can I ask, why did your sister’s shoulder hurt? Mine hurt so bad I could barely breathe, but I never figured out why.

    Reply
    • I’m so glad your tube removal didn’t hurt! I actually have a band-aid over mine, I usually heal better from the inside out. I am ecstatic about my labs too, thank you! They say my sisters shoulder hurts because her liver was sliced and diced so all those nerve ending, they are connected to the right shoulder. I often get right shoulder pain too but hers is worse as the donor because her liver was actually cut, I just received a liver (still trauma and still referred pain) but not near as bad as the nerves being cut!

      My fiance is a massage therapist and every time I have shoulder pain I ask him to massage it because he sends the pain right back to my liver, where it is more bearable for me to handle (probably because the nerves there aren’t as big). So he knows exactly where I get the shoulder pain and how to send it back to the liver, it’s pretty awesome.

      Reply
  2. I would really like to talk with you on the phone. My 23 year old daughter is in the process of seeing if she is a match to be a donor for her Dad. We are on Kaiser and going to UCSF also.
    My husband was listed in Jan of this year. My daughter is very afraid of the pain that will be involved…but of course wants to help her Dad. please email me.
    Gail Terry
    Sacramento CA

    Reply

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