Tuesday, February 28, 2012

Day 11

Hi everyone ...... this is Tammy.  I just wanted  to send a message to say hi and let you know that things are going fine, I guess!!  My doctor keeps telling me I look great.    I've never been more exhausted in my entire life! Everything difficult thing you've ever heard about a transplant ......it's true!!  I have NO energy .... not even enough to talk!  That says a lots!

I have a great support team and want to thank all of you.  I love hearing from all of you whether it is an email, text or a card, I look forward to getting them all!!  I read the cards and then we hang them in my room to brighten it.

Last night I was up all night "self diuresing" (urinating)??  The doctor was shocked this morning, my output last night was over 7 liters. He said he's seen that only one time before since being at this hospital.   Supposedly that's a good sign, my body does not feel the need to hold on to the extra fluid.   Needless to say we didn't get much sleep last night and it has put a damper on making any progress today.  Jeff has been great about doing everything!!  He had plans to go do laundry but chose to stay here with me since I feel poopy today.

I can't explain how important the role of a caregiver is.  I know I have many and am thankful for each of you.  My main caregiver right now is Jeff who has spent many of his nights standing in the the bathroom with me.  However Alecia & Ashley know exactly what that's like too.  My platelets are so low that an alarm has to be set on my bed so I don't get up alone and take the chance of falling. Tony got out of "bathroom duty" but has been very helpful with my with phys therapy, everyone is so wonderful!!
I've never been a huge fan for the Bet Midler song  "Wind Beneath my Wings" but it keeps coming to my mind everytime I REALIZE what a caregiver has to do do!! EVERYTHING!! Some of those things aren't that pleasant!!

Did you ever know that you're my hero?
You're everything I wish I could be
I could fly higher than an eagle
For you are the wind beneath my wings

A caregiver is literally my legs, arms, everything to me right now. 

Just wanted to say hi ..... love you all!!  Please remember me in your prayers that engraftment will start soon and my numbers will start coming back!!  With an umbilical cord transplant, it takes longer for my numbers to start recovery so WE (me AND my caregivers) need prayer that God will give us strength to get through this.

God bless you all!!

Wednesday, February 22, 2012

Update from 2/21/12, from Ash

Hey guys, it's Ashley. We just wanted to give you all a quick update. It's four days post transplant and overall she is doing pretty good--although, she's been in a fair amount of pain (in her legs and arms) and the doctors are still trying to figure out the right pain med combo to help minimize this. Hopefully they will find the right concoction soon!!

Right now, it's a bit difficult for her to eat because her saliva production is down making it hard for her to break down solid foods and she's also fairly nauseous at times. Also, absolutely nothing sounds good to her...especially not hospital food! However, we've figured out some "go-to" items that she is able to tolerate, but the nutritionist would still like her to be consuming a bit more. She also has a rash on the trunk of her body (most likely a drug reaction) that's being treated with steroid creams. Overall though, her doctors seem pleased with her progress!

Thanks for all your prayers, please keep them up and pray the cells engraft as she continues down the road to recovery!!

Wednesday, February 1, 2012

What's happening so far ....

Hi everyone .... this has been a very busy second week!!  We have appointments most all day everyday.  I have had or will have every test you could possibly think of!  They check EVERYTHING!!

I had a scare yesterday.  Jeff and I attended a 90 minute class so we turned our phones off.  When the class was over, I had three missed calls and a voicemail from my doctor and Jeff had one.  I was SOOOO nervous to call her back.  It reminded me of when the transplant was cancelled back in August ... I received a call from the doctor that he had important information he needed to talk to me about.  Yesterday's news was quite a bit different!!

Yesterday my doctor told me something that stopped me in my tracks!  She said after reviewing my CT Scan, they saw a wire in my heart.  What???  I couldn't even process what she said at first.   Their best guess is that it is the guide wire from the central line or port I've had inserted in my chest.  The wire is approximately 10 cms long.  I had to go to the University of Washington hospital this morning to the Radiology Dept.  Again I feel God was definitely with me! Their advice .... leave it alone.  The wire has been in since May 2011, maybe even March 2011.  It actually goes into the vein and then curves out and appears to be resting in the fatty layer around my heart.  The radiologist felt that it would be difficult to remove now because it has been there so long.  Fortunately I am having no problems and my EKGs are normal.  Tomorrow I have an echocardiogram scheduled.

Besides the wire incident, the results I've gotten back on other tests have been good.  The great news is that my bone marrow biopsy and lumbar puncture came back clean!!  We have a meeting tomorrow to discuss the protocol for the transplant.  Please pray that the Seattle doctors are given the knowledge to know what to do and how to proceed.  It seems we are really working towards a transplant date but I want to know that the medical team is completely sure everything has been checked and corrected if need be.

Seattle is definitely the place to be for a transplant, I just want to make sure we a following God's plan.