No Alaska cruise for us--Update

PennyPA wrote:
Would Kitt consider going to NC, Duke University, for the transplant? I was there in 2008 for Lung Volume Reduction Surgery (emphysema) and they have a most excellent TX program. They also have a very good pre-surgery rehab program and there were people in that while I was there that couldn't walk more than 100 feet on their indoor track. Then they'd disappear for a week or two (to get the TX) and when they came back, they were walking that track better than many. Duke, too, performs miracles! As far as those statistics go, don't even consider them. Several people I know have gotten TXs and they are going on their 9th year. And they are living life to the fullest! Also, that up-to-10-months time period for staying in Cleveland isn't too realistic. I don't know of any TX recipient having to stay in the area for that length of time. Heck, the one guy took a motorcycle trip from Cleveland back to his home state of California within 6 months of getting his new lungs!

Duke is only 2 states away from you and you can be Kitt's caregiver for the time you'll be there. There's a nice RV park within 15 minutes (Spring Hill RV Park) if you want to take your RV or there's patient apartments on campus. It's worth a try. At least contact their thoracic surgery department and see what they have to say. I had Dr. Thomas D'Amico.

Thanks for the suggestion. I'll ask DH what he thinks. Duke is about 8 hours from us. My dad was at Duke when he had mesothelioma.

Would Kitt consider going to NC, Duke University, for the transplant? I was there in 2008 for Lung Volume Reduction Surgery (emphysema) and they have a most excellent TX program. They also have a very good pre-surgery rehab program and there were people in that while I was there that couldn't walk more than 100 feet on their indoor track. Then they'd disappear for a week or two (to get the TX) and when they came back, they were walking that track better than many. Duke, too, performs miracles! As far as those statistics go, don't even consider them. Several people I know have gotten TXs and they are going on their 9th year. And they are living life to the fullest! Also, that up-to-10-months time period for staying in Cleveland isn't too realistic. I don't know of any TX recipient having to stay in the area for that length of time. Heck, the one guy took a motorcycle trip from Cleveland back to his home state of California within 6 months of getting his new lungs!

Duke is only 2 states away from you and you can be Kitt's caregiver for the time you'll be there. There's a nice RV park within 15 minutes (Spring Hill RV Park) if you want to take your RV or there's patient apartments on campus. It's worth a try. At least contact their thoracic surgery department and see what they have to say. I had Dr. Thomas D'Amico.

Lots of options to think about. Praying for comfort and healing.

Chock, just saw your note about not going to Cleveland. I am sure that was a tough decision. There are some amazing doctors in your area, so I will just pray that you find the doctor you need there. I will keep you all in my prayers and touch base when I am that way in two weeks.

OMG Chock what a worrisome bunch of decisions. I can understand your hesitation in leaving your support group, you really need all you can rally around at this point. I think your choice to seek out help where you are is a good one. I will keep you all in my prayers. God Bless!!!

Update--and it's not good news...

We got a call from the Cleveland Clinic yesterday. They say DH is not a candidate for the valve replacement surgery due to the severity of his lung damage and concurrent long-term infections.

However, the doctor thinks DH may be a candidate for a lung transplant. If so, they will replace the faulty valve while they're in his chest. Holy cow! We didn't expect that!

At this point, DH doesn't have a lot of good options.
1. If he does nothing his heart will fail and he will die. Just in the last month his condition has worsened.

2. If he goes ahead with just the valve replacement locally, he will be at very high risk in recovery and he could die. If he lives he may be on a ventilator long-term and he may die from that. Doing valve replacement will not improve his lungs.

3.If he goes to CC and gets a transplant he may get a real chance at life, but he will be continually at risk or he may die. Lung transplant stats are worrisome--only 50-60% survival at 3 years. But that's 3 years that he probably doesn't have now.

4. DH may not get a lung in time and may die waiting.

We just can't our heads around all this.

I called this morning and talked to the transplant nurse. We need to meet with the surgeon and find out more. She going to call me with an appointment either tomorrow or Monday. Potentially, we could be in Cleveland by May 12.

ETA: DH has decided not to go to Cleveland. It would require us to relocate there for 5-10 months, depending on how it goes. We would have to leave our children, my job and our entire support system for that length of time and he is not willing to do that. DH plans to talk to his local pulmonologist about it and see if he's a candidate for Emory's program here in Atlanta. If not, then he plans to go forward with the valve replacement here and roll the dice.

My wife had problems breathing at altitudes higher than 7500 feet. Out solution was to talk to our family doctor and get a prescription for medical oxygen. WE DID NOT TRY TO GET MEDICARE INVOLVED!! Once you get the basics (Tank, Regulator, and Mask) then it's just a matter of stopping at a medical oxygen place to refill a tank. So now we simply carry a bottle in the car and a spare or two in the trailer when we use the trailer. Altitude, NO problem.

My wife had problems breathing at altitudes higher than 7500 feet. Out solution was to talk to our family doctor and get a prescription for medical oxygen. WE DID NOT TRY TO GET MEDICARE INVOLVED!! Once you get the basics (Tank, Regulator, and Mask) then it's just a matter of stopping at a medical oxygen place to refill a tank. So now we simply carry a bottle in the car and a spare or two in the trailer when we use the trailer. Altitude, NO problem.

Sorry to hear about the Alaskan cruise. Sounds like you saw a lot already and made some awesome memories. People always ask us, why don't you ever stay home? Life is to short and we like to enjoy life. Hang in there and prayers are being said.

Chock, I am so sorry you won't be able to make your Alaska cruise. I know you really wanted to do it. I will keep Kitt and all your family in my prayers.