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Sokcap48
Senior Member

USA
751 Posts

Posted - May 21 2016 :  4:48:33 PM  Show Profile  Reply with Quote
Hi all-Thought I would start a new thread instead of using Connie's old one. They passed me on the first round of tests: ABG, full PFT and 6MWT. Said I did a strong 6MWT. I am worried about my acid reflux. I told them I have some with certain foods
So don't know how it will all work out. Don't know if I am more worried or excited. Wished I could clear my mind of it all for awhile.
Thx Paul

Paul-Ut
The Journey Continues.

PennyPA
Contributing Member

USA
5755 Posts

Posted - May 21 2016 :  5:43:55 PM  Show Profile  Reply with Quote
Just remember, Paul....if God brought you to it, he will take you through it. Congratulations.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Sam-Tx
Senior Member

591 Posts

Posted - May 21 2016 :  10:59:14 PM  Show Profile  Reply with Quote
Paul, I'm so happy for you! To paraphrase one of Penny's sayings, Worrying about tomorrow could take the wonderful excitement out of right now.
Just the small chance of a better long time life is more than most of us will ever experience. Cherish every moment of the experience and opportunity every day.
If it all works out, it's the next thing to a lifetime miracle. If it doesn't, you're no worse off than you were anyway.
While we are all thrilled for you, many of us are envious of your opportunity, so thrive in that rare opportunity every day from now on and watch the calendar keep going by.
Good luck!
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Sokcap48
Senior Member

USA
751 Posts

Posted - May 22 2016 :  6:59:32 PM  Show Profile  Reply with Quote
Penny- Great ! Saying ! It made me smile!
Sam- you are great and yes you are so right it is an adventure for sure.
THANKYOU guys for your help and support.
We will keep you in the loop.

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Jun 24 2016 :  9:17:14 PM  Show Profile  Reply with Quote
Hi all- got the call! My tests are really spread out. Have some the end of June then a week break and start again after the 4th. So we wil be down in Phoenix till
July 15. So have tests and a little sight seeing as well. So should have an answer if I get listed by the end of July. Think good thoughts for me!
The journey continues!

Paul-Ut
The Journey Continues.
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Dave-OH
Administrator

USA
3876 Posts

Posted - Jun 24 2016 :  11:55:00 PM  Show Profile  Reply with Quote
It is hotter then hell there now. Just came back from the Mid South and daytime max ranged from 95 to 99. Need a few to recover. Phoenix is worse.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

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Sokcap48
Senior Member

USA
751 Posts

Posted - Jun 26 2016 :  9:55:05 PM  Show Profile  Reply with Quote
Yep-111 just awhile ago. And the breathing sucks. We went and bought a portable cooler to put in the front of our fifthwheel cause the regular one was not cool enough. Going to be a hot busy three weeks.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jun 27 2016 3:22:26 PM
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Sokcap48
Senior Member

USA
751 Posts

Posted - Jul 13 2016 :  7:31:25 PM  Show Profile  Reply with Quote
Yea! Only two more days of tests and consults, then back down here for two more consults Aug. 8-9 then they will make their decision within 10 days.
Boy a lot of Tests but everyone is very nice and helpful. Been a good experience regardless of how it turns out. Hoping for the best possible.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Jul 14 2016 :  10:15:50 AM  Show Profile  Reply with Quote
Sounds good, Paul!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Sokcap48
Senior Member

USA
751 Posts

Posted - Jul 14 2016 :  6:24:29 PM  Show Profile  Reply with Quote
Thanks Penny! Got one more tomorrow, a Gastric Emptying Study ( about 4 hours) then we will head back north for 3 weeks. Always a worry how everything will
Work out and if the "committee" will recomend me to get listed. Hope so but not holding my breath so to speak. I will be disappointed, but if that happens the journey continues.

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Jul 18 2016 :  2:13:59 PM  Show Profile  Reply with Quote
Hi everyone we made it back home and they have added a neurological evaluation to be done in Aug. I believe it is because I was honest about some of the ups and downs it past. A trip to a counselor 5-6 years ago. A drinking problem over A few years period. Been sober now 10+ years. To be honest it was a lot easier for me to quit the beer than the cigs! And my history of two failed marriages. So now we need to do that plus the consults that were already scheduled. So we will go back down and give it my best shot. At least I would like to be the one that has the final say as to go ahead and get listed OR not. I am finding there is a lot to consider it is not as black and white as I thought it would be for me.
Sure would appreciate your thoughts one way or the other! you folks have been a great resource and I thank you for that. Would I be crazy NOT to get a transplant??
Paul

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Jul 18 2016 :  2:44:15 PM  Show Profile  Reply with Quote
It all depends, Paul. When you get LVRS, you still have emphysema. When you get a transplant, you don't have emphysema at all! That's a huge plus. When you have LVRS, you usually don't have to add any new meds to your regime. When you get a transplant, you have lots of new meds you have to take (some just for a short while, though). I knew I wanted to travel so I knew a transplant wasn't in my future because of the follow-up visits and the meds. I'm lousy when it comes to taking meds!

Personally, if I qualified for LVRS, I'd go that route because of the aforementioned. And I knew I would still have a transplant in my future if necessary...and if I didn't get too old! However, if I hadn't qualified for the LVRS, I probably would have gone the transplant route.

It's a decision only you can make, Paul, after taking everything into consideration. I met many people going for a TX while at Duke and they're all out there living life to it's fullest. That could be you!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Jul 19 2016 :  1:26:14 PM  Show Profile  Reply with Quote
Thanks Penny! It is always good ti hear your veiw on these matters. An outside- insider so to speak. It would to nice to walk without a tank on my back? :-))

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 05 2016 :  11:53:03 AM  Show Profile  Reply with Quote
Well folks we are packing the fifth-wheel to head back to Phoenix for what we hope is a final week of tests. We do have a bump in the road,they want me to take a neurological evaluation! Not required there for all applicants but for some--oh lucky me! Little worried --ok a lot worried sometimes. We will make it--got to! But I guess, from what I have been told it is stanard at most other TX hospitals. Hope I do ok--wish me luck and a lot of calmness!!

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 05 2016 :  12:36:47 PM  Show Profile  Reply with Quote
Not a problem, Paul. They just want to make sure you're sane enough to stay on your post-tx med schedule and stuff like that...especially since they've given you nice new lungs! You'll pass with flying colors; not to worry.

Isn't it nice to have the fiver to live in and not have to spend money on a hotel or something?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 05 2016 :  3:26:04 PM  Show Profile  Reply with Quote
Hey Penny you are an angel! Thanks so much for the support and encouragement!!! AND yes the fiver has been and is great. When we move down for the TX (if approved) we are going to get a furished apartment so there will be alittle more room and Patty can have some space to work part of the time from " home" . The last time we were there the people let us stay for $20 per day and we where there 3+ weeks and didn't even charge us for the electricity. What a deal!! 2 air conditioners running 24/7 the whole time. BTW I was going to ask you where you are right now, and what size and kind of fiver you folks have.
Thanks again

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Aug 05 2016 3:26:30 PM
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 12 2016 :  2:56:04 PM  Show Profile  Reply with Quote
Hey folks-the neurological evaluation got cancelled by one of the doctors (way funny) she seen that I had put ALL the papers and info they have dispensed to me over the last 3 months into a divided and labeled binder and said " anyone that does that does not need a neurological evaluation ! And I had lists to show her and good questions and she was impressed as heck with my exercise routine so she said go get a CT with contrast instead! That is not to say one of the other docs won't reorder one but for now I am done with my part. They are very concerned about a couple of nodules! They did NOT light up on the PET scan but they are still worried about them as they " look funny" are they are small and the PET might not affect them so another CT with contrast and they ordered all my old ones out of Utah. So should hear something by no later than next Friday maybe even today! So it is the waiting game for now. One way or the other I have done my best and we will head back to Utah in the AM. ---think good thoughts for me----

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 12 2016 :  8:08:30 PM  Show Profile  Reply with Quote
Heh, heh, heh,<snicker, snicker>. And you were a bit concerned about the neurological evaluation.

BTW, you KNOW all of us are sending good thoughts your way!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 17 2016 :  11:29:51 AM  Show Profile  Reply with Quote
Thanks for the good thoughts--I need them--might get my call this Friday--little nervous--but what ever the decision--The Journey Continues.

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 19 2016 :  4:27:59 PM  Show Profile  Reply with Quote
WELL--I got a call from my coordinator this am. And she said everyone on the transplant committee agreed I would be a good candidate. So they accepted me me. Just waiting for the insurance final ok. And we will be listed as soon as we get moved to Phoenix!!!! We will be there Sept 3. Already have a furnished apartment secured that is just 10 minutes from St. Joes. Thanks for the support past and present. More when I know more.
Thanks so much Paul

Paul-Ut
The Journey Continues.
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RichardFL
Rookie

11 Posts

Posted - Aug 19 2016 :  6:00:56 PM  Show Profile  Reply with Quote
WTG Paul. My pulmo raised the subject of transplant for the first time today, as something to think about/talk about later. Good luck. I'll be following with great interest.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 19 2016 :  6:28:25 PM  Show Profile  Reply with Quote
Richard, how serious are you? Have you considered LVRS as an "in between step" prior to a full TX?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sam-Tx
Senior Member

591 Posts

Posted - Aug 19 2016 :  9:53:42 PM  Show Profile  Reply with Quote
Paul, That's wonderful! Please keep us all posted on ever step in your progress. You're a bright possible light now for a lot of us.
Sam
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 20 2016 :  5:22:13 PM  Show Profile  Reply with Quote
Sam- I will most certainly do that. It has been a roller coaster of emotions all summer long. I will say it was me that pushed it thru to get St. Joes to take a look at me. My first referral by the office here in Utah was not complete and was ignored at first. So it was my follow up that got the ball rolling. You have to be your own best advocate. Besides having the right numbers I believe my go for it attitude played a big roll in getting the committee to approve me. I went in with a good attitude and maintained it thru out all the exams and interviews.
Transplant hospitals are paying less attention to age and more attention to condition and mental attitude than they used to. They just transplanted a 72 year old gentleman and he is doing great. I would advise anyone on the lower end of the spectrum talk to their Pulmo and also contact their closest GOOD transplant center and talk to one of their pretransplant coordinators.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 20 2016 :  6:21:24 PM  Show Profile  Reply with Quote
Good words, Paul!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Dave-OH
Administrator

USA
3876 Posts

Posted - Aug 20 2016 :  11:52:36 PM  Show Profile  Reply with Quote
I went through a transplant evaluation 10 years ago and was listed for 18 months. Two changes took me off the list.

1. They changed the rules from time on the list to need only
2. My doctor was wrong, and instead of continuing to spiral down, I improved. I credit the process for part of the improvement.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 21 2016 :  1:11:26 PM  Show Profile  Reply with Quote
And you learned a lot about your body during that evaluation. What do you think helped you?

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 28 2016 :  9:56:18 PM  Show Profile  Reply with Quote
Well folks--I just realized this is the last Sunday we will be spending in our home for awhile. Little scary. We will be leaving for Phoenix early this comming Saturday.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 28 2016 :  10:14:28 PM  Show Profile  Reply with Quote
Just remember to stop the mail and newspapers and have someone mow the lawn!! :-) Hopefully, you'll be called soon and not be on that list too long.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 29 2016 :  08:53:43 AM  Show Profile  Reply with Quote
Way funny Penny! Our front "lawn" is rocks and deseret plants and on an auto drip system. So that is taken care of. Yes hopefully I will be on the list the day after Labor Day . The average wait time at St. Joes is under 30 days so far this year so we have our fingers crossed. Only bump is I have a darn stubborn sinus infection that we are trying to kill.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Aug 29 2016 :  12:06:32 PM  Show Profile  Reply with Quote
I was sort of wondering about the "lawn" bit when I wrote it but then I remembered lots of people do have lawns out there. Wait time of 30 days is fantastic!! What is your FEV1 anyway? And yes, get rid of that sinus infection!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 29 2016 :  2:26:31 PM  Show Profile  Reply with Quote
FEV1--17 I blow 19 on a good day :-). and yes I am on Augmentin. And yes lawns are very common. Where we moved is a new subdivision and they are trying to use less water since we DO live in a desert. Thanks Penny for all your support, it is much appreciated. Soon as I get there I do another PFT,ABG,6MWT. I am thinking my wait might be longer because I am in a lot better shape than a lot of the other people that were testing when I was down there.
The Journey Continues.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Aug 29 2016 2:28:11 PM
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Sokcap48
Senior Member

USA
751 Posts

Posted - Aug 30 2016 :  7:26:15 PM  Show Profile  Reply with Quote
This is a trial that is in 5 different transplant hospitals at present. I think this will be the future of transplant transportation in the near future. It is called "lung in a box " and enables lungs to be transported as far as 3,000 miles and still be viable.
https://youtu.be/MJpitXgy0z4

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Sep 06 2016 :  9:00:01 PM  Show Profile  Reply with Quote
Today I was listed on the national transplant list. :-)

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Sep 06 2016 :  11:07:48 PM  Show Profile  Reply with Quote
That makes all the driving back and forth and all the worry worthwhile, doesn't it?? Congrats!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sam-Tx
Senior Member

591 Posts

Posted - Sep 07 2016 :  03:13:31 AM  Show Profile  Reply with Quote
Wonderful!
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Sokcap48
Senior Member

USA
751 Posts

Posted - Sep 07 2016 :  4:14:43 PM  Show Profile  Reply with Quote
Yes it does----now the waiting game. :-)

Paul-Ut
The Journey Continues.
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Sokcap48
Senior Member

USA
751 Posts

Posted - Sep 12 2016 :  09:22:34 AM  Show Profile  Reply with Quote
Got "THE CALL" last night--going in at 7:30 (am) MST today. Please pray for me, my donor and my donors family.
Thanks for your support? I will try and have Patty update you.
Paul

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Sep 12 2016 :  3:44:50 PM  Show Profile  Reply with Quote
Well, it's 3:43 p.m. today and you should be on your way to better breathing!! Please ask Patty to keep us updated until you're able to do it. I'm a little late for prayers during the procedure but prayers that the recovery period goes smoothly.

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
751 Posts

Posted - Sep 12 2016 :  5:11:28 PM  Show Profile  Reply with Quote
Not to late....been in a thoracic ICU bed all day. They are saying it looks like 6:00 pm before they take me to the O R. Boy could sure use a good steak and eggs right now...... :-) :-)). Yes will try and have Patty up date you.
Thanks for your support penny and all.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5755 Posts

Posted - Sep 12 2016 :  6:08:01 PM  Show Profile  Reply with Quote
Not to discourage you but oftentimes the first call turns out to be a dud. :) Do they actually have lungs for you or are they waiting for them to come in or are they waiting for the OR?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You canít change the past but you can ruin the present worrying about the future.

The Bad News: Time flies as you get older.
The Good News: Youíre still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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