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Monthly Archives: July 2011

Pre-Op Appointment with transplant surgeon! Questions answered.

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Good news… our surgery date has been confirmed…

August 12th, 2011 I will get a beautiful new liver!

On Thursday Kelly and I (and my mom) had our pre-op appointments with our transplant surgeons. It went very well and I got so many of my questions answered. Kelly and I were able to combine our appointments with my surgeon. Because he is head of the transplant team he also sees the donor. Normally his pre-op appointment with the donor is separate from the recipient. His wife, another world-class liver transplant surgeon, will be performing Kelly’s surgery. So Kelly also had an appointment with her.

New info-left lobe
He spent about 45 minutes with us. I learned that UCSF has now started to use the donor’s left lobe of the liver. This is the smaller lobe/piece of liver, about 40%. They have found this decreases the risk for the donor. Although, it increases the risk a little for me, I will gladly take risk if it takes it off of Kelly! In taking the left lobe, I will be in ICU a little longer and recovery might take longer than with a right lobe. They have done about 20 left lobe transplants so far. The risk with the left lobe is that because it is such a small piece of liver, if there is too much blood pressure going through the portal vein (main liver vein) then the liver will not regenerate to full, working size (it won’t grow).

What they do to fix this is once they have “installed” my new liver (well, a portion of Kelly’s liver), they measure the blood pressure in the portal vein. If it is too high, then they need to re-route some of the blood to the vena cava vein. In doing this, it decreases the blood pressure going in to my liver so that my new liver piece can regenerate and in most cases the re-routing of the blood works itself out in time. The good news is that he said Kelly has a pretty good sized liver so hopefully everything will work out without having to re-route the blood flow.

Left & Right Liver Lobes

Kelly will keep the larger right lobe and I will receive the smaller left lobe

Other questions we had answered:
Pain Killers:

Donor- Kelly will be getting an epidural that she will be able to control, for up to 3 days. They will then start giving her oral pain killers. The reason for this is because the donor usually has quite a bit more pain than the recipient. Part of the reason for her increased pain is because it is her liver that is being “cut” and the other factor is that my anti-rejection drugs/steroids apparently will help reduce my pain.
Recipient- I will most likely be getting an IV of morphine or dilaudid for a few days and then I too will be put on oral pain killers.

Length of stay:
Donor- Kelly will be in the hospital anywhere from 4-7 days.
Recipient- With the left lobe making my recovery a little slower, I will be in the hospital 7-10 days.

Wound Closure:
Donor- Kelly will probably be getting glue and her incision will be smaller than mine and a different shape.
Recipient- I will be getting dissolvable sutures on my muscles and then staples to close my skin up. Also, if possible, they won’t be doing the typical upside down Y incision you see on most liver transplant recipients, they have found that if they do an upside down U that the wound heals faster. Kelly will have a straight line, I will have a rainbow! :p

Pictures!!
I asked if I could somehow get pictures of the surgery. My doctor said “sure, just to buy a disposable camera and give it to one of the surgery nurses that will be in the room”! Haha He also said that once I am coherent (so that I would actually remember it) that they could bring me my cirrhosed liver to see. He said he had one patient take her liver home and keep it in her freezer!! Nasty!! That is where I draw the line. THEY can keep it….I just want to see it.

I-pod/Music during surgery:
I frequently have bad reactions to narcotics. I get every side-effect in the book and I have a tendency to be easily stressed too. In doing some research I found that people that listen to classical music during their surgery require less anesthesia to keep them under, have faster recovery times and less side-effects! So I asked if I could listen to my i-pod during surgery, he said yeah, he has had patients do that before…. whatever makes them happy. (So hopefully I won’t have hallucinations, severe intense itching, mood swings, nausea/vomiting, crazy cottonmouth and confusion. Like I said, I get lots of side-effects; so does my grandma… strange, but Kelly doesn’t, lucky girl!)

Medications post-transplant:
Donor- Kelly will have pain pills to take home. They say that the average need is to be on them for 3 weeks and then hopefully just at night for another week or so.
Recipient- I too will have pain pills after leaving the hospital. I will also be on Cellcept and Prograf as my immunosuppressants/anti-rejection meds as well as Prednisone (steroid). My surgeon said that hopefully I can get off prednisone within 6 months-2 years. I will quickly get down to only 5mg of Prednisone, which isn’t enough to give me the typical steroid moonface! Yay!

Visitors:
As long as we have private rooms (please pray that we do), we can have one person stay with us at night. When I am in ICU for the first few days visitors are very limited. Kids have to be screened by a nurse before they can go in (to make sure they aren’t sick because I will be on immunosuppressants). Also, they don’t allow flowers/plants (boo). Something about the possibility of bacteria being in the dirt/plant.

Mail/Get Well Cards (for those who have asked):
Physical Mail Delivery
During our hospital stay, mail will be delivered to our room each day. For prompt delivery, please address letters and cards with our room number and the words “Patient Mail” on the lower left corner of the envelope. Mail will be forwarded to our home address after we have been discharged. (Hopefully we will know when we are admitted the day before surgery what our room numbers will be.)

The addresses for the hospital is:
UCSF Medical Center
505 Parnassus Ave., Box 0208
San Francisco, CA 94143-0208

Other:
Both Kelly and I received packets regarding our surgery that may have pertinent information for anyone who is going to be having a transplant. I will try to look through it and add a post of anything I think may help other cirrhosis/transplant patients. I know it has helped me so much to talk to other transplant patients and to read their stories/blogs. A special thanks to Kelly (not my sister), Melissa and Nancy for sharing your transplant stories with me/us and answering all of our questions with kind and loving hearts. It means a lot!

“Wisdom is nothing more than healed pain.”

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Kelly’s Biopsy & Surgeon Appointment

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I forgot to write about Kelly’s biopsy! It seems like hers and mine were quite different. She got three numbing shots (lidocaine), including one in her liver. For every shot, they had her exhale completely and hold her breath. She said she didn’t feel the biopsy. She was a little sore and had some shoulder pain.

My biopsy I only got one numbing shot and it felt like they were trying to pull my liver out throw a straw when they did the biopsy (followed by getting kicked in the ribs by a steel toe boot). I also was in quite a bit of pain afterwards. Kelly did much better than I did. Either she is way tougher than me or UCSF does better biopsies than Kaiser. I’m sure UCSF is better at most things… Just interesting to me to see the differences.

I am really excited and nervous about our appointment with the transplant surgeon tomorrow. I have so many questions for him. Literally, I’ve had to make a list. I will let you know how it goes! =)

This verse has really helped me to get through this last week.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

New Appointment

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We have a new appointment with our surgeons. This coming Thursday! We will meet with both of our surgeons. I have so many questions!! And that should finalize our August 12 surgery date too. It’s all happened so fast. Which is good because I keep going in and out of the hospital and well if I am in I would rather be in getting a new liver! Less than a month! Yay!! Everyday I have to wrap my head around the gift that my sister is giving me…. I mean it’s so huge!

“The dying, the cripple, the mental, the unwanted, the unloved– they are Jesus in disguise.” -Mother Teresa

Slipping ribs???

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For those of you who know me, you know that in the last year I have had serious problems with injuring my ribs. I would do something so small (leaning on my dresser against my rib, reaching over the backseat of the truck and my rib pressed against the seat too hard) and it would dislocate or bruise or something! I didn’t know what was going on!!! This pain would often keep me complete bed-ridden for weeks (like a bruised or broken rib). It seemed like I hurt it every few months and lately with increasing frequency.

Well, I am fairly certain I know what is wrong. I have what they call slipping rib syndrome aka Tietze’s Syndrome. Basically my tendons and ligaments are inflamed and very weak which with any type of small trauma allows my ribs to “slip”. This can be caused by both the Lyme which causes a ton of inflammation and the cirrhosis not allowing me to absorb the nutrients I need. A double whammy I suppose. It is extremely, extremely painful. But I am so thankful to know what is going on now I can try to work on making them stronger! There isn’t too much I can do, take a few supplements and pray for the best… conventional medicine basically treats it with painkillers.

Here is a link regarding slipping rib syndrome: http://www.caringmedical.com/conditions/Slipping_Rib_Syndrome.htm
Maybe this will help someone else who has the same thing and can’t figure out what is going on.

Anyways, our date is getting closer and I’m so excited!!! Kelly has her liver biopsy this Thursday so please keep her in your prayers. They can be pretty painful and on top of that you can’t move a muscle when they do it (my natural reaction to pain is to move). So prayer is appreciated, I love my sister!

“Fear is having faith in the devil” –Bill Johnson

Happy Day!

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Last night I decided I really didn’t want to go on antibiotics unless it was absolutely necessary (for my kidney infection). I took a bunch of colloidal silver, which is what they used back in the day as an antibiotic, but without any negative side effects. Then I went to see a wonderful woman/friend/health practitioner, Deanna, she has a biofeedback machine and worked on my kidneys, which were functioning at 0%!! She said that they did have an infection. By the time I left she had them functioning at 95%!! I’ve continued the silver as well and today I have no signs of kidney infection! I will still go get checked in a few days and go to the lab to see if I still have one but I’m pretty sure it will be negative.

PRAISE GOD! I hate being in horrible pain. She also treated my endocrine/thyroid (which were functioning extremely extremely low, which is kind of normal in liver disease) and I have so much more energy today! I just have to be sure not to overdo it.

Bless the LORD, O my soul, and forget not all His benefits:
Who forgives all your iniquities, who heals all your diseases,
Who redeems your life from destruction, Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things, so that your youth is renewed like the eagle’s.
Psalm 103:2-5

Another kidney infection

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I have another kidney infection. I have a fever and my back hurts so bad! My doctor said that if I get any worse, it’s off to ER, again… I could use your prayers that it would just disappear and that the pain would dissipate.

The good news is that I was able to spend 3 wonderful, exhausting days with Coleman. We went to the lake and spent the day on the boat and spent a day making a really fun, fancy dinner for my parents 30th anniversary. It’s so nice to be able to feel somewhat good and to do normal things and it’s also really good for our relationship as it is hard to loose sight of what normal looks like! I can’t wait til normal is the norm! haha

Circumstances don’t make you, they reveal you!

Surgery Date!

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We have a tentative surgery date! Yesterday we were supposed to have an appointment with the surgeon, but he got stuck in surgery. We drove all the way to San Francisco essentially for nothing. It wasn’t his fault by any means but regardless it was frustrating. The good news of the day is that our transplant coordinator gave us a few dates to pick from for the transplant. We picked August 12 for our surgery date. That is only 6 weeks away! As long as our last few tests pan out, which they all should, we should be set for August 12. Kelly needs a liver biopsy and I need a cat scan. Then they will reschedule us for appointments with both our surgeons.