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Monthly Archives: October 2011

Moving On

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Life goes on… whether we like it or not! I can’t believe My transplant was almost 10 weeks ago. Where has time gone? I know I have come so far but I still have so far to go in recovery. I am grateful though because I know things could be so much worse, I could have had so many complications and I praise God for His protection and blessing on my life. I had blood drawn this morning. It is the first time since transplant that I’ve gone 2 weeks between blood draws. I can’t wait to see my results.

I also had a chiropractic appointment. Can you believe that I wasn’t even out of place! After two transplant and walking hunchback for weeks and weeks (and still struggling with standing up totally straight). However, he did say I had huge, rock hard knots all over my shoulders and neck. Also, I had some really bad ones in my necks that could be contributing to my headaches.

This morning I woke up with really bad stomach muscle pain (on my incision where they went through my muscles). That was kind of a bummer because I was planning on driving to Modesto to build up my endurance but I had to take a pain pill so my dad took me.

My coordinator gave me the OK to have dental work done in December (so I don’t miss out on my yearly coverage allowance) and told me that I can fly. I have two appointments next week. Monday I meet with my Kaiser GI doctor and Tuesday I meet with UCSF surgeon for follow up appointments.

Kelly is still having pain. Boo! Please continue to pray for her healing. Also, if you could be praying for my insurance… when the time comes that I need to get it, I am believing God will open all the right doors! Also for my niece, Bella Grace…

This week my oldest sister, Kristin, is possibly coming to stay with us. Right now she and one of my nephews are sick though, so we will see. It has sucked because right after my transplant they moved to Nevada. Reno of all places (my least favorite city in the world, sorry Kristin). For those who have been following my 4 month old adorable princess nieces progress… Her seizures are getting worse. Her brain isn’t fully developed and it will be a miracle if she has eyesight. Right now she is functioning at the level of a 1-2 month old (she can’t hold her head up yet). Please be praying for Bella’s healing, Kelly’s pain and my insurance. I will post as soon as I get my test results!

In the meantime, I have to go work on some Christmas gifts…

What is normal?

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In talking to my friend today I realize how many people, including myself before I was sick, take life for granted. Living and doing normal things is such a blessing because it means you are healthy. I have started driving myself into town (I find excuses just because I want to get out), I also cleaned my car out yesterday, vacuumed, played with my dog… you know, normal things! Normal things that are complete blessings because of a miracle that was given to me! Having the energy, the mobility, the ability to take a full deep breath… things that get taken for granted. Even things that didn’t affect me before I am grateful for. I never had problems with walking/legs but I find myself being thankful for the ability to walk.

Quite honestly, normal is addicting. It is exciting to do the silly things most people find mundane. I can’t stop myself… that is until I do so much “normal” that my body stops me from doing more. The last few days I was enjoying pushing myself, doing typical things and today I wake up exhausted barely able to move. I am still in my PJs, sitting here with a pillow staring outside wondering when my body will let me out of this “break time jail”. Rest is so overrated! haha I can just hear all the people in my life rolling their eyes telling me it will take time. I spent enough time sick… but I do realize it will take time. Fine, at least I am going to enjoy every second of it, even if that means I have to enjoy my “break time jail” my body seems to have imposed on me today.

On a different note, Kelly went to UCSF yesterday to have a CT scan of her kidney. We both have slightly reverted to being a little hunchback at times because our stomach muscles just hurt. She is also having additional pain and her kidneys are being funky. Hopefully we will know the results of the CT scan soon and they will be able to tell her what she can do. I hate, hate, hate seeing her not at 100%. She was supposed to go back to work Nov. 1 but they extended that to Dec. 1.

If anyone has any ideas on boredom busters, I am all ears.

It is health that is real wealth and not pieces of gold and silver. -Gandhi

Always do what you are afraid to do. -Ralph Waldo Emerson

Thankfulness is the key to happiness.

Lake Tahoe/Prayer Request 4 Kelly

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I went to Lake Tahoe with Coleman for our 3 year anniversary this week. It was so much fun, a much needed get-away! Especially because he has been working a lot. I can’t even begin to tell you how awesome it is to be feeling more normal! I did a lot of walking, we even took a hike down a little trail to the lake (yeah, that kicked my butt and I needed a nap after it). We also went shopping in heavenly village and walked around, went to the casino’s (where we only spent about 10 minutes playing penny slot machines haha). We also ate at a wonderful Italian restaurant. It was a great trip.

At the end of the day though, I was extremely exhausted and my stomach muscles/incision hurt… all things I can totally handle for such a great trip! I will admit it was hard coming home, back to reality where I now have the hard part… working really hard to build back my strength and figure out what to do next. It’s all in God’s hands though and I really can only take it one day at a time. After throwing a pity party for myself this morning I realized how blessed I am. I could have been born in Africa with no money, home or food or in the ghetto subjected to a life of crime and hopelessness or have a very serious illness with no cure… I am so richly blessed! I have a wonderful family, opportunities and most importantly I am so blessed to have found Jesus and to have Him in my life… the source of “every good and perfect gift”.

I still appreciate your prayers. It is such a crazy journey… even still.

Please keep Kelly in your prayers. She is having a problem with her kidneys that they can’t figure out. They did blood, UA and ultrasound… now they are referring her to urologist and giving her a CT scan. Also, her dog jumped on her incision and cut it open a little… she is in quite a bit of pain from it. She just isn’t feeling good. It so upsets me because I want her to be better more than anything in the world. I love my sister! She is a fighter and a hero!

Beautiful Rain

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There is no smell more refreshing than that of a crisp, cool, fall rain! I am in heaven today. I am also feeling a little better. This past week my doctors have lowered my prograf (anti-rejection medication) level from 8 to 7 to 6 and finally yesterday at my UCSF appointment to 5mg 2x/day! Hopefully soon I will be able to get down even lower! The level of prograf in my blood (TAC level) is high and that can cause toxicity and sometimes rejection. That could explain why I have been feeling so bad the past two weeks. I hope the TAC level goes down quickly with the decrease in prograf.

I am hopeful that with the change of my one anti-rejection medication (changed from cell-cept to myfortic) and the decrease in my other anti-rejection med, prograf that I will soon be feeling better!

However, this week both Kelly and I have been experiencing extreme stomach muscle pain. I was doing fine with standing up straight but with this new pain, it is a little hard again.

My appointment yesterday went great. I absolutely love my doctors and my coordinator. Dr. Freise told me yesterday that it will take at least 3 months before I start to feel somewhat normal and others say it will be 6 months-1 year before I am really fully recovered. But, I have God, youth and will power on my side!

I also asked him why my scar changed colors, it looks a little worse (it is now more red than white). He says that it will go through changes and sometimes get better and worse. I think it might be because I stopped putting my aloe on… oops, I need to start that up again! Whew, you should see the difference in my two scars, one I used aloe vera on and the other I have not (the one on my leg where they removed a vein to try to fix my liver artery during the transplant). The leg scar is nasty looking (it’s not as easy to get to to put aloe vera on!). For those who are preparing for transplant surgery, I highly suggest getting Mannatech’s emprizone (aloe vera). It works miracles on scars and you can use from day 1 post op.

My labs have now been decreased to every other week and after Nov. 1st they will go down to once a month lab draws! Woohoo, less poking, praise GOD! My doctors also don’t want to see me for another month! More good news. They have also taken me off of one of my medications (an antibiotic). Slowly but surely… I am getting there.

Because I have lost so much weight (30 pounds), none of my clothes fit me. Yesterday, on our way home, my mom and I stopped in good old Pleasanton to go shopping. My sister, Kelly, met us. They went shopping without me because I have just been so fatigued and my stomach muscles hurt so bad. However, after an hour and a half nap and some pain killers… I was ready to shop! =D I got some MUCH needed clothes/shoes (ok only a few things because transplants are expensive but still). I don’t have any jeans that fit me… I still gotta work on that. I cant wait to get a job!! For now, I will enjoy my free time and the smell of this rain. I made myself a spiced latte and snuggled up in a blanket this morning enjoying the crisp cold, fresh rain smell and watching the birds fight over the worms!

Let the heavens be glad, and let the earth rejoice; let the sea roar, and all that fills it; let the field exult, and everything in it. Then shall all the trees of the forest sing for joy before the LORD! Psalm 96:11-12

God’s Goodness

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I am sitting here thinking… because, well I have a lot of time on my hands. I am thinking of my favorite thing in the world: God’s goodness, grace and love! Without Him, I have no reason to be. He loves me when I am weak and when I am strong. He holds my tears close to His heart and helps me when I have trouble getting up. When I lay down my worries, troubles and cares at His feet, it is then when healing becomes easiest. Why? Because He is Jehova Rapha, God MY Healer! He loves me (and you) even when you deny Him, hurt Him or forget about Him.

If Jesus died for me, there is no doubt the very least I can do is live for Him. That includes praising Him through my pain. When you complain, who do you think that brings glory to? Not God! Choosing to praise Him is just that, a choice, and even when I don’t feel like it, I want my choice to always be praise (no, I’m not perfect and it’s not always praise but that is the goal!) Being a light in dark places and letting Him, His love, shine through me. I will be the first to admit I am not perfect at this but Lord, work through me! Live in me. I don’t want to be religious or about rules. I just want to have a relationship with my Father. He waits on me all day, hoping that I will spend time with Him. You have no idea how I don’t want to let Him down.

God is love. If you think about that statement, it is powerful. Who wouldn’t want to serve love? If you are struggling, I urge you to lay down your worries and just go talk to God. Ask Him to reveal Himself to you. Wait on Him to show up. Open your bible. I have to go now… He is waiting!! =D What a great God I serve!

Put one foot in front of the other…

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Sorry I haven’t posted much this week… I have just not been feeling very good. I am still waiting on my results for the CMV and C-diff testing. I had labs drawn yesterday and my prograf/tac level (measure of how much anti-rejection medication is in my body) was too high. That means I could be toxic and have a lot of side-effects. It could explain why I am feeling so bad lately. They lowered my prograf level for the 2nd time this week! Which is good, the less I am on, the better for my immune system.

In addition to lowering my prograf level, they changed my other anti-rejection medication. I am no longer taking cell-cept and they put me on myfortic, in hopes that it will help my stomach problems and to help me feel better. This is the game I get to play for a while… ups and downs and trying to figure out the perfect mix of medicines for me.

My white blood cell count (which is basically a measure of my immune system) was low. I am just feeling “sickly”. However, my mind is racing and wants to go! I am so bored and ready to live life. I will tell you what, transplant patients have to be the most patient people in the world! I keep hearing everyone say it can take 6 months-1 year before I start to feel better! Hey, I guess I will just consider this vacation time then and enjoy it.

The good news about my labs is that they are improved! After 3 weeks of a downhill spiral in all of my labs (except for the liver function labs, those have always been great), they took a turn for the better. My platelets are up, clotting time is down, iron is up… Oh! And I am starting to get my appetite back a little. I am finally off of dilaudid and now only have to take norco every once in a while for pain.

I was also able to take a walk down to my mailbox yesterday (it is down a long dirt driveway). My calves are sore now from walking up it. That is the kind of pain I like though! I have always loved the “burn” of working out my muscles. It seems weird to me that the mailbox is far (I think it was more of the hill that did me in) and I am excited for the day when that will be nothing.

To those who have continued to pray for me, I really appreciate it. It is a rough recovery… but I know once I do recover I am going to be the healthiest girl around. Besides, I will finally be married to the love of my life! I think it is time to start planning a wedding!