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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