My niece Bella has been home at my house for a week. She is continuing to improve. She was having seizures every hour. Today she went 5 1/2 hors without having one! Yesterday she even cried for 30 minutes! She has never cried for more than a few minutes and most of the time she never cries. Not even for blood draws. She has been the most alert that I’ve seen her too! Praise God! So excited for her!
Monthly Archives: November 2011
I am finally starting to conquer my cold! Well, I’ve been feeling better for a few days. I’ve been on antibiotics for it. I turned 26 on Monday (Nov. 21). I had a really great birthday! It was kind of weird turning 26 because I’ve lost so many years to being sick and this is the first year of many new and healthy ones. Well, I didn’t lose any years, I invested my time into creating a testimony of Gods goodness! Really my whole life has been a testimony of His goodness. I’ve almost died 8 times! He saved me every time. I love Him!
I had my monthly labs drawn yesterday. My tac came back at 8.9 and my white blood cell count came back at 2.2 (low). UCSF decreased one of my anti rejection meds (myfortic) to try and bring up my white blood cell count. White blood cell count is a measure of ones immune function. I am happy to say they are still fine with me flying this week to go see family!
I really want to go into how thankful I am for EVERYTHING in my life but I need to rest up today. I have a VERY busy week coming up! Have a wonderful and blessed Thanksgiving! And remember that thankfulness is the key to happiness!
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!
I had my first dermatology appointment (since my transplants). It was with a new doctor, he was really nice! He looked me over head to toe and unfortunately found 4 moles that looked suspicious. He removed them all. Thankfully, one of them was on my stomach where I lost ALL feeling from surgery (the majority of my stomach has no feeling because they cut the nerves) so I didn’t feel that one! The others are hurting… Hey, at least I have the ability to get them removed now instead of worrying about them later right!
Also, if you will rewind about 5 months, you may recall (ok probably not, but go with it) that I slipped my rib out of place. Well, I did it again. I’m not actually positive that is what is going on but every 4-7 months I injure my rib and it hurts really bad (it can put me in bed for up to a week!). Maybe it is a pulled ligament, muscle, connective tissue… I have NO idea and neither do my doctors. I am hoping that one day they will be able to tell me why I have this but they don’t seem to care because it always heals and goes away, but it’s getting kind of old. All I have to do is put a tiny bit of pressure, say leaning on a counter and that is all it takes to make it “move/snap/hurt” whatever you want to call it. Also, for some reason, my pain killers (even really, really strong ones) don’t touch the pain. The blessing in it is that it is not a permanent pain, it heals! I am so thankful that I am not in long-term pain (like so many are, especially those with chronic lyme disease, I love my lyme friends and readers!).
On a more personal note, we got a dachshund puppy, Lucy! We are getting a little boy when he turns 8 weeks (Nov. 22), Lucas.
Here is a random picture from 2 weeks ago when my dad, Coleman and I carved pumpkins for the sole purpose of making them target practice haha… We had fun with the shotgun!
This past Tuesday I had my 3 month (well, 11 week) UCSF appointment. They are pleased with my progress. They have moved my labs to once a month! (yay!!) And my next appointment isn’t for another 3 months. Wow! Also, apparently they have a UCSF clinic in Modesto where I will be seen from here on out, no more trips to the city. I am excited to finally be moving on but at the same time I am like, geez kick me to the curb why don’t ya. I mean they did cut me open twice. But the good news is that I am doing better!
After my appointment Kelly, my mom and I went to the Ferry Market and got my beloved chocolate. You know, the kind I had in the hospital! Delicious! We also went shopping. Finally… some real fun in San Francisco! Thank you Jesus for giving me a sister that was willing to risk her life to save mine and a young man willing to give his own organs to save me so that I can go shopping, but more importantly that I can live, love and laugh.
I have been waking up every morning still with wheezing from my pleural effusion (fluid on my lungs). They say it can take months and months for that to go away. I have also been very tired, after only 2 hours of shopping I am fried. They say it can take a long time to get your energy back, especially with having had 2 transplants. So I keep pushing on, fighting the fatigue.
The good thing about this is I am feeling better. I am so thankful I have the ABILITY to push and to grow stronger. What a blessing. Don’t take anything for granted. Whether it is your job and waking up and being able to stand up straight (it takes me about an hour after waking to stand up straight). Everything in life, every breath we take without hindrance is a blessing!