NOT LISTED!!!

but no red flags!!! Praise God. Mike was not put on the transplant list because it is "too soon." Mike's pfts have come up which is a huge blessing! Fev1 at 49%. The testing won't have to be repeated for 2 years so that is another blessing and everything was within their limits (except he needs to gain weight but the tube will help with that - he has already gained 6 pounds).

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

Blessings,
Gina

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!!
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So thankful!

Mike blew 45% today! Praise God, Praise God, Praise God. I'll be back tomorrow with news from the transplant team. So confident in God's perfect plan!!

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.

Blessings,

Gina

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Please consider giving . . .

the gift of life - sign up to be an organ donor!



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.



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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!

There is nothing better than teaching children about Jesus!

I have lots of helpers! This may enable me to continue :)! They are such a blessing!

We have so much fun - who could resist these sweet faces!! Precious!!

My little David - he loves mom being his teacher!

I'll continue to pray about this! God willing I will be able to at least finish out this year! Thanks for stopping by - always great to hear from you. Thanks for saying hi Dana (one of Mike's godmothers) - long time no see!

Off to a birthday party with the boys!

Blessings,

Gina
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Hoping to be "listed"

This is Mike playing with the computer Attorney Fry gave him! He loves being able to access the internet in his room. CF patients have to be kept in isolation while inpatient so this helps beat the loneliness! THANKS Kristi!! Hugs

Tomorrow is the first day of Spring! It is getting so nice around here. On Tuesday the transplant team will meet to discuss whether or not they will put Mike on the transplant list. Each patient is given a number between 0-100. The sicker you are the higher you go up the list. Most patients come in around the low 30's. So far the tests have been par. Mike is still able to get around so we anticipate a low score - and he may not get listed just yet. He still hasn't had the PH probe so they will probably have to wait until all tests are complete. It is good to know he is part of the process :).

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At Mike's initial consult they did a 6-min walk and sent us home with a small machine that measures his oxygen saturation. We were thankful Mike didn't need oxygen to walk and do normal activities. The night test did show he would benefit from oxygen while sleeping. Mike is hoping he will feel more rested.

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Mike will repeat pft's, blood gases and the 6-minute walk every clinic and hospital visit from now on. His score will be updated once listed. We were given the info to start a caringpages website and told to start fund raising as this will be expensive. For now this blog will serve to update family and friends.

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For our CF friends also learning through this process, here is a list of meds Mike is currently on when he isn't in the hospital. The only change is the IV antibiotics while he is inpatient.

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Colistimethate Sodium 150 mg 2 x daily - inhalation

Advair Diskus 2 x daily - inhalation

Sodium Chloride Nasal Solution 1,000 ml 3 x daily

cholecalciferol (vit D) 1 tablet 3 x daily

albuterol 2 puffs 2 x daily (as needed)

azithromycin 500 mg 3 x per week

Dornase 1 vile - 2 x per day

Flonase 2 sprays each nostril daily

insulin aspart 1-4 units 3 x daily per sliding scale

Adeks 2 tabs daily

prilosec 1 tab daily

pancrelipase 6-8 capsules with meals 4-6 with snacks (everytime he eats)

phytonadione 1 tab PO every tues and FRI

Miralax 17 mg in beverage once to twice weekly as needed

Vit 2 1 tab daily

zolpidem 10mg 1-2 at bedtime as needed (Ambien)

Oxygen at night

Nightly tube feedings and he takes 4 enzymes before he goes to sleep for that

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Spring means Easter is getting close. Easter is such a wonderful time of year. It is filled with hope. We remember we have a Savior who loves us. We have a Savior who has endured every trial - every heartache that we feel. He suffered for us and because he lives we too will live eternally. No matter what our circumstance we can lean on him and he will wrap his loving arms around us. He is our hope!

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I am so proud of my son for the choices he is making. Not because I think they are right or wrong or because he is doing what I do or don't want. I believe he is making God pleasing choices. I believe he is living out God's will in his life. He is living each day as a blessing from God to the best of his ability. THAT is so comforting.

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School is out early today - off to see what these three boys are up to ;). Maybe it is time to go outside!

Blessings,

Gina

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the good, the bad and the ugly

As Mike's pfts continued to decline because of his Cystic Fibrosis, his doctor advised a transplant evaluation. At his last clinic appt she said she would like to see him get his initial consult - what she termed the good, the bad and the ugly - within 2-4 weeks. We walked to the reception desk to make the appt but to our surprise the nurse that was to do the consult was free right then, we walked back to our room.

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.)
X-ray (measurements)
CT of chest
X-ray sinuses
X-ray teeth
PFT's and ABG (levels and blood gases)
bone density (a concern with CF)
echo cardiogram
EKG
Lung profussion
labs (blood typing)
HIV
Sputum
Social worker
Shrink
Financial
Nutritionist
Dentist
Infectious disease
PH Probe

6 minute walk

I think that is most of them.

RISKS:
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.

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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.
Blessings,
Gina

Mike playing with his new PSP given to him as a gift from Frank! Thank you Frank!! HUGS!

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Breathing with CF . . .

That is the name of the blog Mike would have if he were to do one. I think that would be nice. But he isn't up for it right now. But I will continue to blog about Cystic Fibrosis. I so appreciate all the information I receive by reading the blogs of others and while no two CF patients will be the same, it just seems to help to compare notes.

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.

More from David

"Mike, if you blow your nose real hard the coughs will go away!"


They are so good for each other
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There are no words . . .

except. . .

God's grace is sufficient for me.

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