I have been feeling awful. I don’t feel well enough to explain why and what’s going on… but my transplant coordinator wants to have me tested for a few nasty viruses and bacterial infections. Please keep me in your prayers. As soon as one thing ends, another begins. The good part is that my rib pain is mostly gone and I can sleep in my bed again (though still elevated as I must have fluid in my chest still). It doesn’t help that I am only able to get down about 300-500 calories a day…
Monthly Archives: September 2011
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. =)
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!
Can you find the elephant? Ok it’s the only reason I put this picture up, it makes me laugh haha
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!
I am having an off day. My brain still feels like mush from all the anesthesia, medications and pain killers. My pain is still about the same as when I was sent home from ER, maybe a very small improvement. However, I am also taking a lot more pain meds too, so that is probably why I say “small improvement” because it’s really thanks to the pain killers. The pain has remained in the same spots, mostly in my shoulder blade and when I take deep breaths it is still in that kidney area (bottom of my liver).
I researched pleural effusions online and found out that they can be excruciatingly painful. Sometimes people develop so much fluid they have to be tapped! (That is what they did to my abdomen when I had ascites fluid in it pre-transplant, they stick a needle into your lungs and take off the fluid so that you can breathe!). Breathing is painful! So is moving.
Also, if the fluid from the pleural effusion, pushes on one’s diaphragm then it can cause extreme referred pain to the abdomen, neck and…. shoulder blade! So at least I know why I am having shoulder blade pain. The pain is the worst at night and especially in the mornings. I need help getting up from the chairs again (Yes, I have been sleeping in the chairs again all week.) I am more than ready for the fluid to be absorbed and the pain to leave…
This morning we woke up and went to get my blood drawn. My favorite guy was there again, Kimon, he knows how to draw blood! He did it in one poke, if you can call it that, because I didn’t even feel it. I think he might be an angel! haha We also got my CAT Scan results put on a CD to take with us tomorrow for my UCSF clinic appointment.
I am hopeful for tomorrow. I hope they do some testing or some kind of work up to try to fix me up, refer me to a pain specialist or at least give me some advice for dealing with this pleural effusion. Please pray I get a very caring doctor tomorrow at clinic that will want to help me with getting the pain under control and that he/she will really hear me.
On the bright side, I have another book coming soon. I get bored with tv, facebook and in this much pain I haven’t been able to do much. I have been reading my bible more which is always good. I always struggle with that which makes no sense because once I open it and get into it, I absolutely love it.
When I was in the hospital someone gave me a book by Julie Klassen (Sadly with my meds, I don’t even remember who, if you are reading this and gave me that book, please let me know! It’s been driving me crazy… possibly my aunt or weegi…). It was one of the best books that I have read. Similar in style to Jane Austen! I love books however I finish them in 1-2 days (400 page books, thanks for the quick reading genes daddy-o)! Since then I have ordered two more of her books and each time it is better and better… my newest Julie Klassen book will be here in a few days! =D Focus on the happy little things in life and not the big negative things! (Books that make you smile vs. pain that makes you cry). Life is 10% what happens to you and 90% what you make of it.
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!
Happy One month (and one day) liverversary my awesome liver! It is doing great, labs are always perfect in the liver arena….
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
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!
Please come back! I miss you and the smiling sunshine.
Your biggest fan
I hope had a terrific Tuesday!
My dearest body,
I realize you have been through hell and back. I just wanted to tell you that I love you and that everything is going to be alright. It will get better. In the meantime, I must say you have me quite confused. Why do I now have a blood clot, back pain, referred shoulder pain and a gurgling liver?! It feels like all the pain receptors in my body are having a frat party and I am the guest of honor! (Really, it’s not as exciting as it sounds). Please, relax or I will have to call the doctor. I don’t think I can handle this level of pain, especially when it is extremely confusing. I don’t understand any of it and although I realize that it’s normal, (or is it??) I have to say I am not a huge fan. If you wanted to write me a letter explaining the purpose of this pain party and why there is so much pain in different areas, that would be grand. In the meantime, chill out with the pain! I would love to get some uninterrupted sleep. This waking up and moving to the chair every night due to pain is not my idea of fun.
Now that you understand that this pain needs to stop, I would like to offer you some hope. I know the pain isn’t your fault and soon enough we will be running, swimming, camping, getting married, going to work and back to school! I know mr. brain has missed school a lot, it has always been fun. Hang on to the hope of tomorrow and focus on it, not this crazy pain.
As for me, it is off to go get blood drawn, pray for an easy poke and good veins! Thanks!
Over the last few days I have developed a bulge on the left half of my incision. It is extremely painful when I stand up, lean back (to recline or try to lay down) or sometimes just when I am sitting. I was worried that I had either torn my internal stitches that are holding my abdomen muscles together or that it was an incisional hernia. I figured we should probably call UCSF and see what they wanted to do. My mom called and talked to one of my favorite doctors! Doctor Mark, he was one of the transplant fellows, he was cool!
He said that because we are almost 4 weeks post op that my muscles should be healing up really well so tearing the stitches is unlikely. Also he said that hernia’s usually only happen with liver transplant patients who have mercedes incisions (where as I have a rainbow incision) and it is even more rare to get a hernia on the left side (they are more common on the right side of the incisions).
Because the bulge is a little above my incision, he said be believes it is an incisional hematoma (blood clot). We recently found out that there was a blood clot that contributed to my first transplant’s failure! These incisional hematoms can be common and the blood clot, in good time, should be reabsorbed by my body. However, they can be very painful. I can no longer stand up straight (where as I finally was able to stand up straight, it was so nice).
He didn’t give me any suggestions on what to do for it… I have a friend who also had a transplant at UCSF last year. She also developed a hematoma on her incision. Her hematoma caused her incision to open… 4″ wide, 2″ deep and took 2 months to finally heal (she had to pack it and change her dressing twice a day). Please pray that doesn’t happen and that God would give my body the capability to totally absorb this hematoma overnight!
To add insult to injury, as I have been doing more physically, my back is majorly protesting. My back pain is horrible! I guess being in surgery, totally relaxed on a hard table with my spine having no support for 20 hours will do that. I had to get out of bed last night and come sleep in the chair as I was in too much pain. My pain killers don’t touch either the hematoma pain or the back pain. You would think with how many surgeries they do and the technology we have today that they would create a surgery table that supports your back! It is crazy to me.
Oh well, God is good… all the time! I am alive, have a new liver and don’t have to go back to UCSF (I was afraid they would want to see me). I hope and pray that this dissipates and doesn’t turn into anything else.