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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.


A Little Rest

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Finally, with the pain killers, the pain has been controlled! I have been feeling much better. Also, the pain of the broken ribs has been decreasing. I have been needing less pain killers, I even went 16 hours without one and was ok. So I am very thankful for that.

However, I don’t know if it is the new pain killers, my body healing or the increase in prograf (my anti-rejection med, I am on a pretty high dosage)… but I have been sleeping all day and all night! I never sleep during the day and never at the drop of a hat. I’ve been falling asleep mid-sentence. Extreme fatigue. However, the sleep has been wonderful. Very relaxing and probably much needed since I really haven’t slept much since the transplant. I have also been having numb/tingling feeling all over my body and I am almost certain that is from the prograf.

The other MAJOR side effect I am dealing with, whether it be just post-surgery complication, pain killer or prograf I do not know. I can’t eat. I mean my appetite is totally gone! Absolutely nothing sounds good to me. I am lucky if I get in a few hundred calories. My parents and I are working on this but it is hard. And then I take pills on empty stomach and get nauseous and well, it is a vicious cycle. Oh well… this too shall pass.

I looked in the mirror again yesterday… bright blue eyes. This still amazes me and makes me happy. I do not miss having yellow eyes!! They are bright white and oh so healthy. It is like seeing into the future almost or a prediction of the future… bright and healthy. =)

I can’t believe it has been 6 weeks almost since the transplant! Kelly is doing great, she just still needs her daily cat naps in the afternoon. I miss being able to go outside without having to worry about the sun. They say 80-100% of people (I’ve heard both statistics) get skin cancer 15-20 years post transplant, I HAVE to wear sunscreen every day. If you know me, that is a foreign concept and putting it on everyday is just weird for me. The things we have to get used to…

My sister and her kiddos are staying this coming week with us. That means I get lots of time holding my new little niece (3 months old) and playing with my cute nephews. Well, when I am not snoozing!

Other good news: This is the first week since I have been home that I have gone an entire week without calling the UCSF emergency line. I didn’t have any need to. =)

Superwoman? Perhaps.

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I haven’t posted in a few days because I felt like I was only posting about having a great day and then the next about how much pain I am had been in. I guess it was really bothering me more than anything and I didn’t want to face these ups and downs. And then my bad days turned into worse and worse… until I ended up at ER last night.

I posted on Tuesday how my hematoma was bothering me. Well, I guess I didn’t really let on how much it was bothering me because I wanted to focus on the fact that my stomach pain had improved… well it was replaced with horrible hematoma pain all day Wednesday and through Thursday morning. That pain started to dissipate Thursday and I developed a new pain, at the very bottom of my liver, in my back (which we thought was kidney pain because of its location). This pain was awful. I cried all day Thursday and on Friday at 1pm, it had got to the point where I was at a pain level equal to when I woke up from my 2nd transplant. Time for ER.

Now, during this time… did I allow myself to increase my pain meds? No. Why? Because certain people, especially the doctors, are so anti pain meds that I was terrified. They put so much fear into you that you will become addicted and you practically have to beg them to give you something. For someone who hates being on pain meds, this is difficult for me. I would love nothing more than to be off the pain killers and to be improving, slow recovery is not fun, but recover I will, whether it be slow or fast, I will get there! Anyways, so the pain was awful, and we went to ER….

It was quite the eventful trip down, we came upon a head-on collision, that was scary. We called 911 and had to continue on because I was in such horrible pain. Walking, breathing, driving, stopping, going, bumps…everything hurt! (By the way, everyone seemed to be somewhat ok and we called 911).

My ER doctor was great. I will make a long story short… they gave me IV dilaudid for the pain. That was the first time I had any real pain relief since my transplant. I cried because I was so relieved to have the edge off of the pain (though it did still hurt) for the first time. The doctor ran labs and did a CT with contrast (looking for kidney stones or something wrong with the liver). CT scan came back showing that I have pleural effusion, which is fluid between my lungs and liver. My ER doctor called a UCSF liver transplant surgeon to see what they wanted to do with me… he said to send me home (even though the pleural effusion doesn’t explain why I was in such severe pain). I was sent home, with no explanation (possibly the pleural effusion but nobody knows for sure). Granted, my ER doctor was awesome and very caring. He told me that it was absolutely necessary to increase my pain pills. Without pain control, I can’t breathe deep which may have caused the fluid between my lungs/liver and I can’t walk because it sends shooting pain to, well to where ever my pain decides to camp out for the day… so I have been taking my pain pills every 4 hours today.

And now guess what… oh yes, the pain has decided to move again. I apparently have migrating pain every single day! But severe, level 8-9 pain. It is now in my shoulder. Every time I get up from a chair, sit down, lean back, reach with my right arm… I have shooting pain that makes me yelp. I kind of sound like a sad puppy.

The doctor also reinforced that I need to breathe deep, and walk, walk, walk! Did I know these things? Yes. Is the pain too severe to do them? Yes! Do I have to do them anyways? Yep…

Even though I had severe pain today, I decided to go with my mom downtown. We went grocery shopping. I held my shoulders back (ouch!), took deep breaths (ouch!), and with every step I took tried not to cringe at the pain shooting through my body… But you know what, I did it. I also used my inspirometer for 30 minutes straight (breathing machine). I had always wondered how to increase your pain threshold. Well, now I know, increase your pain!

I looked up the side-effects today of prograf, they included: pleural effusion, severe back pain, excessive dry skin and multiple other symptoms that I have been having. This is probably because I am on a fairly high dose of prograf… I hope I can decrease it soon or change to a different kind of anti-rejection med.

So although this isn’t the happiest post, trust me, both you and I want it to be, I thought I would let everyone know what is going on…. Prayers greatly appreciated!!

Moral of the story: Sometimes the only way to get through the pain is to face it head on with God by your side. It is then that you learn, grow and can finally heal.

PS. In case you are wondering, my sister is doing great. She still gets tired but she is off her pain killers (lucky duck!) and I couldn’t be happier for my hero sissy! She has driven and gone grocery shopping by herself, made a trip to Reno and saw my oldest sister who recently moved there with my 2 nephews and sweet niece…. She still gets tired and will take long naps on some days, but that is expected as she grows that awesome liver of hers! I love you Kell!

Oh and….

Happy One month (and one day) liverversary my awesome liver! It is doing great, labs are always perfect in the liver arena….

47… long gone!

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Two days ago on Tuesday, I had my 2nd clinic appointment. Traffic was horrible, we woke up at 5 and didn’t get there until 9:30am! 4 1/2 hours of traffic… I got my 47 staples, slowly but surely, removed!

The doctor was a little worried about one of my labs. My alkaline phosphate has jumped 40 points since I have been home from the hospital. Alkaline phosphate is a liver function lab. He said it could either mean rejection or regeneration. I say it is the latter and not the former! But he said they are going to keep a watch on it. My TAC level was a bit low again at 5.7. They increased my anti-rejection medication, prograf, again! They have increased it every week since I have been home. Prograf is so hard on the kidneys, they want me to drink 64 ounces of water a day! Do I look like nemo? I don’t think so! The doctor was very impressed with my progress. Instead of going back next week like I thought, they told me I don’t have another appointment for a month! I am free from San Francisco for a whole month!!

I am finally feeling better, I have my energy back, it may not be a ton of energy but I am able to get up and do things again like I was last week. I think it may have been a bug going around. My brother was totally exhausted too for no apparent reason and with no other symptoms. Oh, I have some more good news!

Two nights ago I slept on my back (not propped up on 50 pillows) for the first time! My back pain has been horrible lately (my body/muscles were totally relaxed for 20 hours on a hard table… I am sorry back!). Other transplant recipients told me to try sleeping on my side. So last night I slept on my side! I think I need to make a post with pictures on how to do this, it took me 10-15 minutes to figure it out haha! It did hurt my incision a little though, but my pain pills cover incision pain where as they don’t touch my back pain, so it was worth it, and it did help take some of the pressure off of my back. Though, doctors and transplant patients say the pain can last up to 6 months. Others have suggested acupuncture, stretching and standing up straight regardless of incision pain. But, the good news is that I made progress.. sleeping on back, side… 3 weeks ago seemed impossible!

I almost forgot… so my staples are gone! It was slightly painful/uncomfortable. A few, 5-6 of them, hurt though because my skin had healed around them and my Nurse Practitioner had to yank them out. She is so sweet though, I really like her. I was so thankful Coleman was there to hold my hand. My staples were so red and angry, especially on my right side, that is the only place I have a “real” scab, the rest are very superficial scabs. They said I have healed up really well.

I want to take another picture soon of my awesome rainbow scar. It looks so good without the staples. It seems like it has been more than 3 weeks since I have had my transplant. The hardest part has been the expectations from myself and others. There are good days and bad and I pray that the good would soon greatly outnumber the bad. But even my bad days are good because I am so blessed.

If you could please keep my niece Bella in your prayers. We recently got some very difficult news… that is all I will say for now until we know more. She is so sweet, beautiful and she is only 2 months old. She needs a miracle though. And I know first hand that miracles are God’s specialty. Also, if you could pray for my back pain and that Kelly’s incision would heal up faster, she is having some issues with it. We are only looking like slight hunchbacks these days though, so that is good news.

For those who are reading and are post-transplant… I will try to explain how lay on your side to alleviate back pain. First lay onto your side on a big giant pillow (laying straight back hurts those stomach muscles that were shredded). Then roll onto your back. Pick a side (no, the liver side shouldn’t hurt more than your left), whatever side is more comfortable for you. Then put a long/big pillow pushed up against your back. Hold onto bed and pull yourself onto your side. Put a firm pillow between your knees and have a pillow or two to cuddle with. That is the art of sleeping on your side post-transplant. I am sure I confused you, honestly it will probably be different for everyone but I still would have liked for someone to try to explain to me how to do it.

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.”