Happy Love

Today is my sisters birthday, Kelly. She was almost born on Valentines. She has a heart shaped birthmark on her foot, it’s awesome. Guess we know part of the reason she has such a big heart, she was almost born on love day (2 hours late). Life is good!

Dentist!?!

I had my first dental appointment since my transplants. UCSF asks that you not have any dental work done for at least 6 months after your transplant but I begged because I didn’t want to miss out on this years benefits/coverage. I know, who begs to have dental work done! I have a lot that needs to be done though because I also have Lyme disease which destroys your teeth regardlessly of how well you take care of them.

In the past I haven’t been able to get numb at the dentist or best case scenario the numbness would last 30 seconds and then I would need another shot. I was of course terrified to go again this time because of the insanely barbaric memories I have of sobbing shaking while my teeth would get drilled on with no numbness (this includes not being numb for root canal). Nobody could go with me this time, it was me myself and I…. Well, Coleman was able to stop by for 5 minutes before he had to go to work and give me a hug and kiss. He is so sweet.

I told the dentist that I was confident that all it took was a new liver in order for me to get numb. And with that, the numbing shots began. He started with his best stuff, no playing around with little old lidocaine.

You know what? It was a lot better this time! It only took 4 shots and one during the middle to fill 2 cavities! I also had a bunch of people praying for me. It is my New Years miracle.

I understand why they don’t want you to have dental work though until 6 months out. It kicked my butt! I’m so tired! They also put you on antibiotics for a week before so you don’t get an infection. My mouth is still very sore for some reason.

I’m glad to have that done and over with! Now on to a New Year!!

Long Week and high WBC count

Christmas is right around the corner. Wrapping presents, enjoying family, visions of sugar plums… well… make that birds dancing around your head. Because my head is pounding! Yep, I’m still sick. It started last week with a fever and sore throat and has morphed into a gnarly head/sinus cold. I had my labs drawn yesterday, they were all phenomenally great! With the exception of my White Blood Cell count which was 8.8. A high count like that can only mean one thing, infection. I am guessing it is a sinus infection. I’ve put calls and emails in to my doctors, asking for an antibiotic (if they deem necessary of course)… So we will see. I don’t want to feel like this for Christmas. I wanted to bake and wrap and play with my nephews today. It does make me feel a little better because I was getting frustrated with how tired I’ve been. I have an explanation now! An explanation other than almost dying 4 months ago and Jesus stepping in and providing two awesome donors. TWO! There is so much to be thankful for this Christmas, #1 will always be God’s love and #2 is health because without it you can’t enjoy anything else! And of course so much more, especially family, Coleman, Bella-Grace being home from the hospital for Christmas! I pray that you would see the meaning behind Christmas and focus on what is important, making beautiful memories, telling people how you feel about them, treasuring every moment that God gives you.

A Little Rest

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. =)

Pictures of my NEW LIVER!

I got a copy of my CT scan that I had taken at ER last Friday night. I took it with me to UCSF and the transplant surgeon said it looks perfect. I will make this a short post and let the awe-inspiring picture speak for itself. This organ used to give life to a young man. He loved to ride his bike and that is all I know about him. It is such a miracle to look at and see what once gave him life and filtered his blood, etc etc, is now the same beautiful liver that does the same thing for me! Thank you God! And thank you Kell-bell for making this all possible, I love you sister!

Look at that big beautiful liver (top left for those who don’t know…)

Can you find the elephant? Ok it’s the only reason I put this picture up, it makes me laugh haha

Picture of Pain

I had my UCSF clinic appointment today. My doctor was finally someone that I knew…. Dr. Kang! He was the surgeon who let me know they had found a liver donor for me. He was one of the main surgeons on my transplant team. So thank you to those who prayed that I would get a nice doctor today.

I brought the CT scan (on disk) with me that was taken at Kaiser ER on Friday. He showed it to me in 3D, it was amazing!! My liver goes almost touches my heart it is so big! I had an air bubble in my chest, he told me someone needed to burp me hahah….

He said there was a little fluid near my lungs but that was normal and that I do not have pleural effusion, as Kaiser had led me to believe. He also said that this amount of pain couldn’t be caused by a pleural effusion anyway. Other than that he said it looked like a perfect scan and he showed me where everything was. It was pretty amazing. Technology these days… to be looking at a screen that has a picture of the organs that beat, filter and keep you alive, every single second of every day. What a miracle. God sure outdid Himself when he made us huh!

He did an exam and said that it looks like my ribs are fractured from the transplants. During surgery they pull apart your ribs with a rib spreader. I had two surgeries and was on the table, ribs spread for a combined total of 20 hours. You may or may not recall but I have had major issues with my ribs in the last year or so, they are very brittle and easily wounded. So this doesn’t come as a surprise to me. And it explains why I have pain in so many different areas.

You can read my previous post regarding my rib problems here: Slipping Ribs Post

I am thankful that it is not some chronic issue, or problems with rejection, or any other thing that could go wrong (there is a lot…) So, granted fractured ribs does suck, but they will heal without causing problems to anything else.

Also, because Dr. Kang really understood how much pain I was in (thankfully a doctor that got it!), he gave me serious pain killers. Haha, as if dilaudid isn’t serious enough. He told me to increase it to as often as I need and upped the dosage AND gave me Norco to take with it. Granted I feel weird taking so many drugs… but it does help the pain! Praise God! However, these knock me OUT! Like night night sleep tight Kortni! They knock me out like I was in the hospital, falling asleep mid-sentence (or mid-type). Forgive me if my post doesn’t make sense or I have errors.

So that was the “good” news. The bad news is that my TAC level (anti-rejection med) was, yet AGAIN, a little too low for their liking. He increased it from 6mg twice a day to 8mg twice a day!!! I was released at 3mg. An 8mg dosage is on the high scale when it comes to prograf (the anti-rejection medicine, the lab for it is just called TAC level). It is already causing me some serious side-effects (or seriously embarrassing haha), none of which I plan to discuss here, in a somewhat public eye… The doctor said it is much better to increase it now then to go into rejection and then be on insanely high doses of anti-rejection meds. I guess he has a point!

Another side-effect that has been getting worse is my lack of appetite. Nothing has a taste. I walk down the candy isle and nothing looks good. The smell of meat repulses me. They say this will get better after a few months (they say that about almost everything… 6 months… 1 year.. just keep holding on…). It better improve because my honey and I are foodies! Nice restaurants, cheese plates, good chocolate… yumm! I just have to pull him away from his 4, yes 4, jobs! Crazy, busy guy! I am proud of him though!

Oh! The secret book giver has been revealed. It turns out my Auntie Sue gave me the Julie Klassen book. AND she said she has a bunch of them! Oh happy day! She said she has crates of them and a bunch of Julie Klassen books too that I can borrow anytime (she is my next-door neighbor too!). That totally made my day to find out who gave it to me and that she has more! So… Thank you Auntie Sue!!! I love you!

Yet again, have I mentioned how awesome my family is!

Superwoman? Perhaps.

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….

Improvement

Today was a big improvement from yesterday! Up and down, hey, at least it is more interesting this way and it gives me a better story to tell. Granted, I can’t wait until the day where all I have to talk about is God’s goodness (ok well that is EVERYDAY… God is good, ALL the time!!!), wedding bells and and shopping sales!

My pain has greatly diminished today, replaced by pure exhaustion. However, yesterday was a very long day. I’ve been snoozing a lot today. I also took my steri-strips off today, my scar looks great! I will have to take another picture soon, you won’t believe the difference of 3 weeks!

I also had my first bath today post-transplant. I got to soak in the tub, candles lit and music playing… I was finally able to relax, no staples, no steri-strips… heaven I tell you!

The only problem today is the hematoma on my liver has been causing me more pain, a lot of constant pain. It’s hard to keep track of the different pains (back pain, stomach pain, incision pain, hematoma/liver pain, referred shoulder pain, take your pick!)…

I just thought I would put up a quick post and give the good news that my stomach pain is a lot better (though the pain is still there for sure, it is an improvement from yesterday where I thought I was going to die from pain). Praise God!

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Long day @ UCSF

Yesterday my transplant coordinator called and said that she was concerned about how much pain I have been having. She said that she wanted me to go to the clinic tomorrow (Tuesday mornings the liver transplant clinic is specifically for post-transplant liver patients and every week it varies which doctors work the clinic, and which doctor you will see). I called my coordinator back yesterday evening and told her I was doing a bit better and we agreed that if I was indeed better this morning, I wouldn’t go and if I was worse, then I would go ahead and come to my clinic appointment.

Well last night, after About 10 minutes of laying in bed, I was in tears. It takes a lot to make me cry these days because I now know what real pain is. I had to pull a roly poly move to get out of bed. Coleman tells me that I am a roly poly because when I am in pain, I curl up in a ball and when I need to get out of bed I have to rock back and forth and roll side to side. It’s awesome.

So, after 10 minutes I had to leave my beloved bed and move to the chair to sleep (which is where I have ended up the last 3 nights from pain preventing me from sleeping). I still didn’t sleep well in the chair and when I woke up with the sun this morning, I knew I needed to keep my appointment… or go to ER! The pain was intense. Think of lemmings starting a massive inferno in your stomach because that is exactly what my stomach felt like, constantly. At least if I kept the appointment, they would know what to do with me properly as UCSF is familiar with transplants, where as Kaiser, well not so much.

After my appointment with the doctor, he asked that I go get an ultrasound. At this point the pain was so bad that Coleman had to get me a wheelchair because I could barely walk. The ultrasound showed that I have a small hematoma on the edge of my liver. They weren’t too concerned about it and said that it’s common and should reabsorb on it’s own. Thankfully the other hematoma (blood clot) that was on my incision 2 days ago had disappeared by today. So no worries there. My arteries in my liver are flowing perfectly. I also got to see my new liver for the first time. Boy, oh boy! Literally… it is a big boy sized liver. =) That must be why it is working so well, mr gigantor blood filter. Then, we had to wait again and have a 2nd ultrasound done by the radiologist (not the tech). Then we had to wait for my doctor to call us to tell us we could go home or if we were going to be admitted… Talk about hurry up and wait… which is not any fun when you have a pain level of 8! We were there for 4-5 hours!

They did give us the OK to go home though. They gave me some suggestions for the pain and also decreased my cellcept (one of my antirejection meds) that can have side-effects of stomach issues. I hope these suggestions will help and the pain will subside sooner than later! Sorry for such a boring post…. it was kind of a blah day, even the weather was overcast. On the bright side, the doctor said I can take baths now, that my incision has healed up nicely! There is only one spot that still has a scab on it!

Dear Summer,
Please come back! I miss you and the smiling sunshine.
Thanks,
Your biggest fan

I hope had a terrific Tuesday!

47… long gone!

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.

PRAYERS:
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.

POST TRANSPLANT PATIENTS:
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.