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!

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….

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.