Tuesday, March 23, 2010
Mike was disappointed.
He was angry for a bit.
Then he came around.
There is always an up side.
It is hard.
I will never pretend to comprehend what it is like to live with this disease. A progressive, fatal disease. He is so strong.
I admire his courage.
I admire how he picks himself up and keeps going.
I admire how he makes the best of things.
When I left he was talking about the dances he is putting together for his cousin's wedding this summer. He is doing the choreography. He is busy planning for tomorrow. And he is tired. They bumped up his oxygen to 1.5 liters while he is sleeping. We hope that will help.
I am thankful for God's perfect plan and especially thankful when he lets us know what it is in a very precise way.
"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." Jeremiah 29:11
P.S. Thanks Terri for watching David so I could be with Mike today.
P.S.S. Gage lost a tooth a few days ago :) - very big stuff!!
Monday, March 22, 2010
This is Mike with his IPV machine. I'm not even sure what it is (I'll be researching soon). His chest and stomach are just too tender from the surgery to be able to handle the vest or chest PT (pounding). This pushes pressure into his lungs to open up airways. What a huge blessing. If he had to skip treatments right now his health would take an even bigger hit. Research has come so far. His improvement in PFTs shows this is working (so is divine intervention!)
Thanks for all your support.
Sunday, March 21, 2010
Each day 19 people die waiting for a transplant. Sobering statistic if you are on a list waiting. If you haven't ever considered donating please consider it - thank you!
"But Gina someone else has to die. . ." I know this may sound strange but that doesn't cause me any anxiety. Someone already had to die to give us life . . . eternal life. Because we have a Savior who gave up his life so that we can live eternally with him, we already understand how someone could give life for someone else. Jesus did so much more for us. He lived the perfect life we couldn't live and died an innocent death in our place. We are so thankful. We have so much peace knowing that this same Jesus is totally in control of all things. It is God who numbers our days. Psalm 31:15 "My times are in your hands." There isn't a disease or a surgeon who will change God's perfect timing and plan.
But we can be a part of that timing by giving an organ to live on after God decides our time has come. I am an organ donor. I have been for years. I hope you will consider it too.
Mike is still in the hospital. He rested yesterday - no appointments or tests. We couldn't go visit him because Paul had a virus (3 days - yuck). Get lots of rest Mike! HUGS!!
Cystic Fibrosis is progressive and is still always fatal. We also know that God is in control and Mike's health could improve for a time. We take it to the Lord in prayer and await His answer and His will. We know his plan is always the best plan as we pray, Thy will be done. God willing, Mike will feel much better after this course of IV antibiotics.
With infection and sickness adding risks to Mike's condition, I am contemplating whether or not to continue to be a Sunday School teacher. These kids are the best. They bless me!
Friday, March 19, 2010
Thursday, March 18, 2010
So much information - I took notes
In order to be considered for a double lung transplant, patients have to go through a 4 day evaluation. This is normally done out patient. Patients are required to get a hotel as the tests will take all day. An inpatient stay could be considered. Tests are as follows:
Heart cath (measures pressures etc.)
CT of chest
PFT's and ABG (levels and blood gases)
bone density (a concern with CF)
labs (blood typing)
I think that is most of them.
Some people come in for the transplant and never leave.
At 5 years post transplant 50% of patients have passed away.
19 people die each day waiting for a transplant
The average wait for a transplant is 23 months
No raw meats or eggs after
No salad bars or buffets etc.
Precaution around kids etc., prone to infections and viruses
You need to be strong coming in for the transplant. Rehab is important. Even though lungs will continue to deteriorate rehab is a must.
Mike went home on two oral antibiotics and the thought was that if he decided to move forward he would do the tests during his next hospital stay. He continued on the oral medication for almost two weeks but didn't get much better so he was admitted to the hospital on March 10th.
What seemed to be a much needed routine "tune-up" with the start of the evaluation turned more serious right away. Mike's port was not able to be accessed. That was a blow. We were very fortunate to have had that port for 3 1/2 years. What a blessing.
The nutritionist was the first to visit and said Mike's BMI was at 17% and needs to be at 18.5% to be "listed." Mike weighed 123 lbs (he is 6 feet tall). We talked about a feeding tube. Having the tube would allow for night feedings to boost caloric intake. Mike's body is having to work very hard to fight the lung infections now and the sickness takes his once ferocious appetite away. He agreed to the tube.
On Friday he was sedated for the Heart Cath in the morning and then he waited to see if they had room for him in the OR. Thankfully he was taken down at 6 p.m. There were a few complications. It appears he has some stenosis of the veins and arteries. Once again they were unable to place the port on his right side. Thankfully they were able to place it above the other site on the left and it was working well. While trying to place it on the right the surgeon pulled back on the line and lost some of the teflon coating inside Mike. He told me Mike was stable and they would be writing a report and taking x-rays to see if it went to his lungs. All seems fine so far.
Because Mike is kind of tall and has a long rib cage the feeding tube placement wasn't quite where Mike and the surgeon wanted. It seems to be working fine so far and Mike is dealing with the disappointment.
As of today Mike is 90% through the evaluation and half way through this hospital stay :). He continues to heal.
We are so thankful for God's continued blessings. He is in control and we put our trust in Him. More info on test results to follow.
Mike playing with his new PSP given to him as a gift from Frank! Thank you Frank!! HUGS!
Tuesday, March 16, 2010
Here is an update:
Date - Fev1
4/1/04 - 5.6 - 99%
6/22/05 - 3.16 - 68%
12/18/06 - 2.44 - 53%
5/16/07 - 3.38 - 74%
9/28/07 - 1.62 - 36%
12/26/07 - 3.56 - 77%
5/7/08 - 3.77 - 82%
5/29/08 - 1.78 -39%
11/5/08 -2.37 -53%
5/4/09 -3.13 -70%
11/04/09 -2.36 - 52%
12/2/09 - 1.91 - 42%
1/19/10 -1.72 - 38%
1/25/10 -1.78 -39%
And at our center under 40% gets you started in transplant land. Mike is undergoing his transplant evaluation. He's a trooper. 90% of the testing is done. More to follow.