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!

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.

Cold, Prayer and Oakland Children’s Hospital

I have my first cold since my transplant. This is something that I’ve been dreading because I hear they suck because my immune system is depressed and they can tend to stick around longer. However, I am believing for a quick recovery. Last night, I couldn’t even swallow without crying because my throat hurt so bad. I went and woke Coleman up and he prayed for my throat and sinuses. My throat pain improved about 50% as did my breathing. I am still quite sick but at least I can swallow without wincing! Thank you Jesus! I love that He hears our prayers and cares. The other good thing is that my white blood cells (which are indicative of my immune system) are what they were before my transplant, so I’m hoping I will be able to fight it off just as fast. Why am I so anxious to get rid of this cold? Well, for one thing it’s a cold and they suck… but also, my birthday is on Monday! Thanksgiving is Thursday and I fly to Florida next Friday! I can’t wait! (boo I miss black friday as I will be flying all day).

Also, since I slipped my rib last week, it is still hurting. It has been hurting so bad the last few nights I’ve slept in the chair. As do the wounds from where 4 moles were removed. My body is kind of an overhaul right now. I also have stress on top of it.

I had a comment on my last blog asking I post some about how I was diagnosed, my decision process in going forward with a living donor transplant, etc, etc. I thought that it was a great idea and I plan on doing so in the future. Possibly in December once, birthday, Thanksgiving and Florida/Georgia vacation is over!

I have a prayer request too. This time it’s not for me or my sister, it is for my sweet, beautiful 5 month old niece, Bella Grace. She was admitted to Oakland Children’s hospital yesterday for a week of treatment. She started the ketogenic diet in hopes of controlling her seizures, which have increased in frequency since yesterday. Please pray for complete healing for lil bella girl and for the family. The diet lowers her blood sugar so low she has to be monitored at all times as she goes into ketosis. Bella was born was severe vision problems and her brain didn’t fully develop which causes seizures and other problems. Your prayers are appreciated!

Update on Bella Grace from my mom: Pray for our precious Bella Grace. She’s in Oakland Children’s Hospital, needs monitoring for a very difficult, specialized diet, hoping it will reduce or cure her seizures. Her glucose dropped too low tonight, had to give apple juice, then it went way high, meaning we now have to almost start over, trying to get it down “again”. Nerve wracking to say the least…..Having seizures almost every hour is not fun!

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. =)

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….

Surgery Date!

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.