Looking Good

I'm talking about my labs... haha... they're finally looking good. I went to Kaiser earlier to get my blood drawn. Just got the results not too long ago and so happy to finally see my liver enzymes close to normal. If you have been following my blog, then you already know that I've been having issues with my liver. At first, the doctors thought it was Graft-vs-Host, but later on found out that my high levels of Iron (due to multiple transfusions) may be causing it. So I've been having a unit of blood removed every month since August. And now it's confirmed that my elevated liver enzymes are due to elevated Iron in my blood. Glad that problem is finally getting fixed.

Here are some pictures I took of Danica at Kaiser, after I got my blood drawn.

When we got home, we ate lunch and walked Mr. Miyagi. And now it's official... every time we walk the dog, we have to stop and pick some flowers. 

She loves to smell the flowers.

She loves to kiss them.

She loves to play peek-a-boo with me, but only with one hand because she's holding the flowers with the other hand.

Happy Birthday To Me

Well, it's not really my actual birthday, it's my bone marrow's 1st birthday. LOL. If you're new to my blog, I had a bone marrow transplant (I had Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria) on May 24, 2011 at City of Hope in Duarte, CA. I can't believe it has been a year. My blood counts have been normal and I haven't had a transfusion since June 4, 2011. I'm glad those days are over with. I can't imagine getting transfusions every week, like I used to. That is why I'm so grateful to my donor, he really did save my life. Because of God and because of my donor, I'm alive and enjoying life with family and friends. I love my life. I appreciate everything and I don't take anything for granted, because I know how it feels to not be able to walk, I know how it feels to not be able to breathe, I know how it feels to be poked with a needle at least six times a week, I know how it feels to be disabled. I've learned so much from my experience and I'm glad that I'm here and able to share my story with family and friends. God is good, all the time. He always has a reason for everything that happens in our lives. God is much bigger than we are, if we just give everything to the Lord, He will take care of everything for us. When we surrender to God, joy and peace can be ours. 

Jeremiah 29:11-14 says, "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the LORD, "and will bring you back from captivity. 

Here I am, one year after chemo and transplant. My hair is getting longer. It's super curly, so I flat iron my bangs. My mom treated me out to dinner at Cheesecake Factory for my first birthday. Now, I have two birthdays. I feel so special =)

Happy 1st birthday to my bone marrow. May you live long and thrive!

Peter Pan, Help!

Peter, please take us to Neverland... I don't want Danica to grow up. At least not too fast. And I don't want to grow old... LOL. Every time I take Danica's photos, she looks a bit older and bigger than the last time. What is going on? My baby is turning into a little girl. Oh no! I love going through her old photos and videos to see how much she has changed in the past year. And let me tell you... she's definitely turning into a little lady.

Just a quick update on my health - My doctor started me on this immunosuppressant called Cellcept and I was on it for about a week. That drug made me very sick! I started getting migraines, mouth sores, eye infection, sore throat... so I asked him if I could stop taking it. And as soon as I did, the migraines went away. I am very sick lately and to be honest, I don't know how I manage to take care of Danica and do all the house chores. I still praise God, because He's always by my side. I pray for strength each day and He gives it to me. My liver enzymes are still elevated and the only drug that helps keep the numbers down is Prednisone. So it looks like I'm going to be on steroids for a while. I pray that I don't have to be on it forever. I know some people are on it for the rest of their lives, as a maintenance drug. Please, please, please... continue to pray for me. I really need to get better so that I can enjoy my life. Not that I'm not, because I love my life but I just want to be normal again. 

And Another One...

My liver enzymes have been fluctuating since September of last year, so my BMT doctors started me on Prednisone. They tried to wean me off the steroid, but my ALT and AST labs went up again. Three weeks ago, one of the doctors decided to put me back on high dosage of Prednisone to control the GVHD in my liver, it worked... for a while... until he tried to wean me off the drug again. So, I've noticed that if I take less than 20mg of Prednisone a day, my labs come back out of whack. The thing is, I can't be on Prednisone for this long. It is killing me... well, not really. I only say that because it makes me super hungry. I'm eating like there's no tomorrow. I've gained 6 lbs in the last couple of weeks. My face looks so swollen. My stomach is distended. Plus, there's a chance I could have diabetes with this drug. So, I'm on this new medication called Mycophenolate. Basically, it's an immunosuppressant used to prevent rejection following a transplant. One of the side effects is it may lower my blood count (but not to the point where I will need transfusion again, at least I hope not... well, my doctor will keep an eye on me). I get my blood drawn every week, just to make sure I'm okay. Also, to determine whether there will be changes with my medications. I pray that this drug will work for me. Please, Lord, continue to heal me. I just want to be normal again.

I'm a Mess

My husband always catch me eating...and I'm quite embarrassed about it. Last night, he caught me taking food out of the refrigerator just before bedtime. As if I didn't have enough for dinner. I even had a Belgian waffle with banana for dessert. Anyway, I can't control my eating habits lately and it is driving me nuts!!! I feel so bad for eating so much, but I really can't control it. Being on high dosage of steroid makes me super hungry. I bought a lot of vegetables and fruits so at least I'm munching on healthy food. I just want to be back to normal again. I've developed that "moon face" look due to Prednisone. I hate it! I look so fat, even though I only weigh 105 lbs. It's so funny how people tell me that I've "gained so much weight." Hello??? Seriously, I weigh 105!!! Steroids cause fluid accumulation, which makes me look fat. Don't ever tell a girl that she's fat. Even if it is true, do not ever tell a girl that she is fat! Just trust me on this... Lol.

That's all for now.

Update

My ALT and AST labs are too high since last Saturday. Here's the info I got online, from http://medicinenet.com

What do elevated liver tests (AST and ALT) mean?

"AST (SGOT) and ALT (SGPT) are sensitive indicators of liver damage or injury from different types of diseases. But it must be emphasized that higher-than-normal levels of these liver enzymes should not be automatically equated with liver disease. They may mean liver problems or they may not. For example, elevations of these enzymes can occur with muscle damage. The interpretation of elevated AST and ALT levels depends upon the entire clinical evaluation of an individual, and so it is best done by physicians experienced in evaluating liver disease and muscle disease."

I have done three blood labs since last Saturday and they all show an elevated AST and ALT. See, this is what happened... I went to the LA County Fair with my family. I didn't drink a lot of fluids because I hate using the public restroom. Then on Sunday, I didn't drink enough either because I don't like using the restroom at church. My urine, of course, was darker since I was dehydrated. Because of all the medications I'm currently on, I'm supposed to drink plenty of fluids to flush them out of my system. I'm guessing, the reason why these labs came back elevated is because I didn't drink enough water?? Well, I'm not so sure. The doctor placed me back on steroid, Prednisone 25 mg twice a day. Yesterday's blood work is still elevated but looks better than last Saturday's. Anyway, I have an appointment for an ultrasound of the liver tomorrow. Let's see what it shows. I'm crossing my fingers.

On a positive note, here's a picture of Danica. She's 7 months and 3 weeks old. Enjoy your Friday =)

Last Day

Today is my last day at City of Hope, I'll be seeing my BMT doctor at Kaiser Sunset from now on. I had another biopsy done earlier, I'll keep you guys updated when I get the result in. It truly is a good day today. My nurse today, Ate Lisa, prayed for me. She is such a blessing, not only to me but her other patients as well because she prays for us. Ate Lisa, if you are reading this: Thank you for listening to my stories and allowing me to vent out my feelings. You are the best nurse!!!

I also saw my eye doctor today. The first thing he asked me was if there's any changes in my health since the last time he saw me. So I told him everything. He was speechless. But I was able to tell him how God has been good to me.

The door bell just rang. It was RonRon, his Dad used to be our Pastor. I didn't have my wig on and I didn't want to be seen without hair, so Raul told him to come back tomorrow. As soon as I heard that he's only here for tonight, I put my wig on and walked down the street to their house. His whole family was there. I figured since we were catching up, I'd tell them my story. I told them how I got married, got pregnant and got sick all in one year. I also shared the good news: God healed me and gave me a healthy baby. God still performs miracles. Believe it!

That's a lot of activities in one day. Hehe!

Here's a bible verse that Nurse Lisa shared with me today:
And we know that in all things God works for the good of those who love him, who have been
called according to his purpose.
Romans 8:28

Day 80

I must have miscounted my days. So I'm now 80 days post Bone Marrow Transplant and I'm feeling better than ever. My labs look great. Because I go for check-ups every week, I got to know my nurses really well and they got to know me too. The nurses at City of Hope are awesome, they are very professional unlike Kaiser nurses (at least the ones I've had in the past). It's unfair for me to say that all Kaiser nurses are horrible, but from my personal experience, most of them are terrible and don't care about their patients.

Today, I heard from a good friend, Louie. I haven't heard from him nor seen him in such a long time. I was surprised to get a call from him. He is getting married this October. I love weddings!!! Now, what to wear?

* This was actually yesterday's blog, I forgot to hit "Publish Post"

Day 72 Post Transplant

Hello! I haven't forgotten about my blog, just been very busy with Danica, family, doctor appointments and also got admitted for a couple of days at City of Hope. It's now Day 72, I'm feeling much better. God continues to heal me each day. A friend from church, Auntie Franny, is going through Chemotherapy at Kaiser. Just like me, she also lost her hair. But even though she's going through so much right now, she remembered me and sent me a prayer book. How thoughtful and very sweet of her. Please include her in your prayers.

Good night for now....

Day 50

I made it halfway! I can't believe how fast the days are going. I'm now Day 50 post transplant and I'm feeling much better. Danica is now 5 months old. She tries to sit on her own, but still needs a little support. She's growing so fast... it looks like I need to buy her new clothes again. That's always fun!

Day 35

The result is in! I saw my doctor today and he told me the great news... I don't have the PNH clone in my blood anymore. How awesome God is. My blood tests came back normal too. WBC 10, Hgb 13.6 and platelets 168,000. The only thing that came back a little elevated was my cholesterol, so I'm adding fish oil to my list of medication. I'm feeling great. Thank you, Lord!

Day 31

Today, my sister Viv took me to City of Hope for a Bone Marrow Biopsy. The nurse was really amazed on how I handled everything. It wasn't that bad at all. The worst part is the injection of Lidocaine because it has this burning sensation. Actually, this was the third time I've had a biopsy done. And I believe, the doctor gets to do it again on my 100th day Post Transplant. Oh the joy of being a patient... really teaches you a lot about being patient. Right now I'm seeing my doctor twice a week, on Tuesdays and Fridays.

I want to give a shout out to my nurse, Lisa. She is such a kind person and she has a good heart. It is always my prayer to get a good nurse and today my prayer is answered. I did get a good nurse and the most amazing part is I was able to share with her my story. And she listened. That's what make a good nurse. To all the great nurses I've had and to all my nurse friends, CHEERS! You guys have a hard job, work long hours and I know it is tiring, but please take time to listen. Love you guys =)

Day 30

Ive made it to my 1st month Post Bone Marrow Transplant. In about ten more weeks, I can finally eat whatever I want to. Let's just say by my birthday, September 16, yup I thinks that's a good deadline. My taste buds are slowly recovering. Sweets are still on the very sweet side and that metallic taste is slowly fading away.

Today is my Mom's 60th birthday. I feel bad that we can't go out for dinner due to my condition and special diet that I'm on. I know she wants to celebrate big time, I feel awful. I promise to make it up to her when I'm feeling better. Happy birthday to my Mom and also a shout out to the other Vivien, my sister, that is. It was her 33rd birthday yesterday. How time flies... And I'll be 30 this September... Wow!