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Immunity, Immunity, Where Art Thou?!

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I walked into the lab again, as I scanned all the familar faces, I saw him! My favorite guy. The one that gets that sneaky, rolly polly vein of mine. Except, this time, I was in for disappointment. It took two tries and a little wiggling to find it. Oh the heartbreak… and the pain. Oh well, I told him I wouldn’t break up with him, he is still my favorite vampire.

This would be the second time in a week that I was in the lab. Last Thursday my labs came back with a very low white blood cell count. An unfortunate side effect of the anti-rejection medications.  It should get better with some time. My WBC was 1.4, at the VERY least it should be 3, some hospitals want you hospitalized at 1.5-2. However, UCSF isn’t one of those hospitals. I had to go get retested this week, it came back low again. It was still only 1.5…  The doctor told me NOT to leave the house. Can you believe that? I’m on house arrest and I didn’t even get to steal an awesome car! Doctors, I think as little kids wanted to grow up and be cops. House arrest…

Now having a WBC of 1.5 means I get Neupogen injections. They are injections that stimulate your bone marrow to produce more WBC’s. Another trip to the pharmacy. Where I get to pick up needles, my favorite things! Then, per my coordinators directions, I have to find a “roll” (her words not mine!) I told her, “Rolls! I don’t have ANY rolls”. She’s never seen me so she didn’t know if she should take me serious or not. It was one of those funny awkward moments. Of course, I was joking, doesn’t every american have some jelly rolls somewhere or another! God bless the USA…

All joking aside, I am not looking forward to this. I have to take claritin and tylenol to help with the side effects. Likely side effects include a fever of up to 102-103, headache and bone pain and more. Some of the more “serious” side effects include paralysis and spleen rupture but hey… it gets my white count up! I don’t understand medicine, it seems crazy to me to take this. I guess it is quite dangerous though for me to have such a low immunity. Transplant patients can and have died from catching a common cold because they have no immunity to fight it. So, I’m praying my white count comes up fast! I’d like to get on with my life.

I also have a bit of good news, for a few days it was a question if I had CMV, a dangerous virus for transplant patients that can take months to get over. If my results came back positive I could have been hospitalized. I am so thankful God answered our prayers as it came back negative.

Not this past week but the two prior to that I’d been feeling awesome. I was out running around like a chicken with its head cut off. I had so much energy! Then, wam bam thank you mam, I lost it. The last week I’ve been laying around the house looking for that energy. I think it ran away with my white blood cells. If you see either, please tell them to come back, I quite enjoyed being a headless chicken.


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

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!

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

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.”