Friday, February 6, 2009

IVIG Infusion

Hi Guys,

well I had IVIG infusion yesterday. I felt quite nervous as I didn't have my port in due to the low neuts and I was afraid that the nurses would be cross with me as they have been in the past. I know, I know.....that shouldn't happen. I know they think that I am just stubborn at times and won't accept a port but this time I said "yes" and it was cancelled just before I was being taken in for the operation. I couldn't try harder than that. After that experience, I have had more chats and I don't think I should have this port and I believe God doesn't want it for me right now. The risk of infection for me it just too great right now and I believe God has been protecting me from that. I am SO well and hardly ever have serious infections. I agree with my haem about the risk of infections with a port for me when I have lower neuts and white blood cells. They have always been low......but my body is well adapted to it and I am well, pretty much, all the time.

A port really worries me and even when I was about to go into surgery, I didn't feel 100% comfortable. Lots of FA patients with ports have injections to get their neuts to normal levels or close to so infection isn't as bad a problem and with my pre-leukaemia, this is not advisable. If I am having no problems with a neut count between 500 and 1500, then why treat with something that is dangerous. However, the port can be a problem when I sit at 500 or 400 and have freak drops to 200.

I am so glad that Alicia is doing better now. I know she is vulerable after a transplant and has a different line in but it frightened me to hear that her very high temperature and difficulties and stay in ICU was caused by an infection to her line. I think her white blood cell and neuts are higher than mine and she got this infection! I can't imagine how my body would deal with things when I have lower neuts and white blood cells. I do know that recovering from a transplant makes you vulnerable though. Michelle, we are praying for Alicia.

Anyway, the nurses seemed to handle the "no port" well yesterday and didn't yell or be pushy when they heard how a port can be more complicated for me. I do know that they wish I had a port though. I believe if God doesn't want me to have it for now, He will provide a solution. Miracles can happen and some supernatural stuff has been happening between God and my life which is way exciting. Why couldn't He heal my veins or cause me to not need IVIG for the rest of my life. Mircales do happen. You may not believe me if I told you the supernatural things happening in my life right now. What a joy to be a born-again Christian! When you ask for God to move in your life and tell Him you are serious, there is no end to what He can do and I know this is still only the beginning!

So to break out of my fear of using one vein I got them to experiment yesterday. I know my left arm is not good but there is a vein. It never gets used. Unfortunately, the nurse who was having a go yesterday was very tentative and I think the vein didn't pop up for her how it could have. Being a nurse myself, there are some things I would have changed about her technique for a difficult vein but I didn't want to tell her more than I was suggesting otherwise it is like I am taking over....hehe

So we ended up going for my right arm after she missed. It didn't even go in a vein. The usual nurse came then, who is a little more agressive but this is perfect for my veins. I showed her a place that I wanted which was close to the usual spot but a little further away to give the usual spot a rest and she did it! Yay! A tiny bit of bruising but at least that is all done for another month. I wait to see what God has in store. I don't feel too bad today. It is about 104 degrees F the last two days. For us Australians, that is 41 to 42 degrees Celsius. Today is a BIG fire warning day because of the intense wind and the hot weather. Tomorrow we are supposed to have a HUGE cool change! Yay!

So I told my head and neck oncologist about the problems with the surgeon and my head cancer site. He was "ozzed" as Alan and I would say. That means " thinks the surgeon is silly" but he said it in a real professional way. He doesn't want to waste time with a guy who is not going to take us seriously. So we are giving him one more go. I will make appointments with this surgeon every 3 weeks for my head. If my head is not acting up, I can cancel and if it is....I go and show him and he can't complain that I am trying to make him available to me 24 hours a day because I am making regular appoints so he can see. If this fails to work.....we are finding someone else. We don't have time to waste with someone who won't help and see the seriousness of keeping this under control.

We have been praying for my scar to be restored here at prayer meeting and if it doesn't act up again! That would be a miracle which wouldn't surprise me with the supernatural stuff going on.....good God stuff...... encourage you. If you want things to change in your life, call on Jesus....because He will do amazing supernatural things in your life. So many people are happy with life just going on as it is, the ocassional blessing.....but you can have so much more and I am just starting to learn that! My health is also being affected amazingly by God!!

Anyway, sorry....I am just excited! I still get down but have to remind myself about what God is doing.

ok, so that is all for today. Thanks for visiting and I will update you soon again!
Love Charisse

7 comments:

Judy said...

Charisse, I loved you post, it is so positive and upbeat and I am so happy that God is working in your life. I will be praying for your scar to heal up and not flare up again ever, also for healing you all together. I love you my friend, you are such and inspiration to me. Take care my friend!
Judy

Anonymous said...

I think things are going to work ut well with your 'no port' issue, just keep believing!

Alan

Anonymous said...

Hi Rissy

Go for it girl!

I think you have G n' D, as my dad used to say Guts and Determination.......do not be intimidated but firm and strong in God....He is with you he will protect you..

Did you know we are going for 3 months to manila with Mark and Chris.......yes on the slums, next to a "golden Pond" hmmmmmm more like a slag hole with cane toads and bats and unmentionables.

We are excited and nervous.....why take kids there??? Well you need to check out this video clip on You Tube by World Vision it is called Teenage Affluenza......(google it) then you will understand me.

I will send you a link to our new home too...you will like it!!!???!!@@!!

So we leave in August back in Nov, wow!! Chris and Mark are excited too....well Chris more than Mark (a girly thing I am sure) We will have full internet there so we can hear all news still and pray.

Love ya girl,
Just thought you'ld like to hear our news too Cath

Anonymous said...

I am not feeling well myself, but am praying for you as always. I hope you are having a wonderful weekend. i miss our chats and love you heaps. Hugs, and have a wonderful weekend. Jennifer

Anonymous said...

Continuing to lift up prayers!
Psalms 46:10-11 Be still, and know that I am God: I will be exalted among the heathen, I will be exalted in the earth. The LORD of hosts is with us; the God of Jacob is our refuge. Selah.
Prayer Bears
My email address

Anonymous said...

Know that you're in my thoughts and prayers!
Isaiah 53:4-5 Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.
Prayer Bears
My email address

Katie W said...

You just keep hanging in there! I still think your attitude and faith are just amazing!! I know (as ALL humans do), you probably get scared and have down/bad days, but you're just such an amazing woman!
Love ya,
Katie