CBOTB

Wednesday, December 03, 2008

Update on Mom

For those of you who would like to know the latest on what's going on with Mom's Pulmonary Hypertension battle...

After getting dismissed from the Duke transplant program due to an antibody issue, they were able to get in touch with the Cleveland Clinic (CC), which is a bigger program. The CC was able to determine that the antibodies were not an insurmountable issue afterall, and have putting Mom through the process to get her on their transplant list.

She and Dad spent a couple of weeks up there going through tests and endless interviews with everyone from the main surgeons to the custodians who would clean her recovery room, I guess. This was very exhausting for everyone, especially Mom who understandably gets tired quicker than most.

They passed that test, and then were told to start anti-rejection medicine. From what I understand (and that's not much) it's necessary to figure out which anti-rejection medicine will work BEFORE the transplant. Yeah, that makes sense. They don't want to get new lungs in her and then figure out, "oh, this anti-rejection medicine doesn't work..." oops.

The meds have done a job on her, and have had some pretty lousy side effects. She had to go off of them for about a week and spent some time at MUSC (I think she just missed Charleston) trying to get her feet under her again. Since then, she has had to get back on the meds and take them until her tests came back showing that it was, indeed working the way they wanted it to. This sounds pretty straight-forward, but in reality, we have been told we're working against an ever-quickening clock here. (For the record, we believe that God is bigger than a prognosis by even the best, most well-meaning doctor. She has outlived most of the previous timelines that she's been given already and we're believing that she still has a significant purpose which is why she's beat the odds again and again so far).

She has definitely become more easily worn out in the last few months, and is trying her best to take it easy so that she can stick around long enough for those new lungs.

We finally got word on Friday after Thanksgiving that the drugs are working the way we want it to. They were supposed to meet with the board of doctors that make transplant list decisions yesterday, but for some reason her case didn't come up. When it finally does (they only meet on Mondays, so hopefully next Monday), then after they all sign off on it, it goes to someone in the State and could take another 1-2 weeks before she finally gets on the list, officially.

Honestly, we are all exhausted (physically and emotionally), and are in need of some real light at the end of this long tunnel. Mom's other meds have made her especially emotional, which is never easy for anyone, including her. We are all feeling the weight of what we're facing on a daily basis, and though we know God is in control, sometimes we just wish things would work out easily. But that hasn't happened yet. Everything seems to have to go the long way around to get us to the next step...taking precious time.

Please pray for God's peace during this process...it passes understanding and guards our hearts and minds. We thank God for His continued presence with us.

Please pray for Him to open up doors quickly, that her files or her case would not get lost in the shuffle, and that all the other administrative hoops would be jumped through seamlessly.

Please pray for a special breath of fresh air for my dad who has tirelessly taken care of Mom for over three years now. Pray for his strength to keep going, to keep his head on in the midst of frustration, and for his ability to advocate for Mom with the doctors, hospitals, and insurance companies if necessary. Pray that God would give him a special grace to endure what is ahead.

Please pray for the family of the person whose lungs we hope to get (soon). It's an extremely hard concept to grasp that someone else will be grieving the loss of a loved one while we're nervously but excitedly expecting new life to be given to Mom.

4 comments:

Huckaby Fam said...

We will be praying about all of this, guys!

uncle carl said...

nicole very well putting all this info together,yes it has been very difficult but we all beleive things will come to a very happy return to see my sister and your mother be herself again.amen and may god with us all uncle carl

Lauren Blake said...

nicole thanks for the update and specifics at how to pray for you and your family. I know this has to be hard for you so may you continue to be a prisoner of hope. love you.

andyjillroberts said...

Nicole, I'm just now catching up on this but please know as I read this my heart hurts for you. It's a hard journey to walk with your Mom. At the same time, God will blow you away with His peace, presence, and healing. I will be praying for you guys. Thanks for sharing...