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Sokcap48
Senior Member

USA
904 Posts

Posted - Jul 16 2018 :  08:43:30 AM  Show Profile  Reply with Quote
Penny—MMMMMM! I don’t recall you passing me on any of those trails down there, “ Miss Fitness “. :) :) And at 70 I deserved an extra rest!
Yes thanks ! I am proud. It did take a lot of extra work and old bodies take a while to recuperate but so worth every sore muscle. With out my transplant it would have been impossible and you are correct, I never margined I would be hiking like that let alone the Grand Canyon. I hope people see what is possible and look into a Transplant or like you an LVRS. I my opinion it is worth the battle. I am so blessed.

Paul-Ut
The Journey Continues.
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PennyPA
Contributing Member

USA
5905 Posts

Posted - Jul 16 2018 :  09:12:11 AM  Show Profile  Reply with Quote
Paul, after your "completion" post, I went back and read all the postings in this thread. You've come a long way, Paul, since you first started out on this journey. And you're right that you didn't see me pass you. There's no way I would have passed you or kept up with you...or even BEEN on those trails. That one trail looked awfully narrow and very scary. So what your next objective...The Iron Man competition in Hawaii?

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

You can’t 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: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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PennyPA
Contributing Member

USA
5905 Posts

Posted - Jul 16 2018 :  10:11:13 AM  Show Profile  Reply with Quote
Paul, how much of a load were you guys carrying? And how'd you learn to pack it so it would be balanced? The scenery must have been outstanding! Some of the videos didn't come through (we have "iffy" internet here) but what we saw was just fantastic!

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

You can’t 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: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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Sokcap48
Senior Member

USA
904 Posts

Posted - Jul 17 2018 :  2:55:49 PM  Show Profile  Reply with Quote
Penny the packing is kind of trial and error till you get your pack to feel centered. I bought “OP”bags heavy duty odor proof ( for some more adventures ) filled these and put down the middle of each pack. Then stuffed the sides with odds and ends like camp sandals etc. I carried right at 30 lbs my max weight would be about 38. The 30 is WAY to much if I ever do that many miles again I will become a minimalist and carry between 15-20 max. We had way to much “stuff” it is kind of a shot in the dark because you only have to go by what other people write about. Even had to much food. They say you eat a ton but we didn’t eat much more than normal except for inbetween meal snacks and candy bars. No not Hawaii. Maybe the Tetons—but in a lounge chair starring at the lake :-).

Paul-Ut
The Journey Continues.
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Lora-WV
Member

USA
68 Posts

Posted - Aug 15 2018 :  9:01:55 PM  Show Profile  Reply with Quote
Placed on transplant list July 26, transplanted July 31 and discharged today. Harder than I ever imagined .....weepy, sore, overwhelmed,
humbled and feeling so blest.
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PennyPA
Contributing Member

USA
5905 Posts

Posted - Aug 15 2018 :  9:24:08 PM  Show Profile  Reply with Quote
Congratulations, Lora!! Stay strong; it will get better!

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

You can’t 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: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




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micah35
Member

60 Posts

Posted - Aug 15 2018 :  11:56:32 PM  Show Profile  Reply with Quote
Wow, that was fast. Wishing you a quick recovery, Lora, and I can't wait to hear about your new lease on life.
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Sokcap48
Senior Member

USA
904 Posts

Posted - Aug 23 2018 :  8:41:03 PM  Show Profile  Reply with Quote
Yea!!! Hard at first but oh so worth every struggle! Write me if I can help! Rehab! Rehab!! Rehab!! Oh so important. You are correct Oh so Blessd!

You go girl !

It gets better day by day !

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Aug 23 2018 8:42:02 PM
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Sokcap48
Senior Member

USA
904 Posts

Posted - Oct 20 2018 :  7:43:11 PM  Show Profile  Reply with Quote
Hi everyone just back from a 6 week road trip. Thought I would let everyone know I celebrated my 2 year Lungiversary hiking and camping in the Bitteroot Mountains in Idaho. If I may help anyone with questions or mentor you thru evaluation and lung Transplnt please reach out. Yes it is a real option for a lot of people. Think about it.
TX’d 9-30-16

Paul-Ut
The Journey Continues.
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Lora-WV
Member

USA
68 Posts

Posted - Oct 22 2018 :  6:39:23 PM  Show Profile  Reply with Quote
Congrats Paul! I will soon be having my 3 month. I M doing rehab no though it is exhausting I can tell a difference. Everytime I
walk, even just a short distance I am still amazed that I'm not short of breath. Great feeling. I agree with Paul, if you
are thinking of a transplant, it's not a rosy path but it's sure worth it!
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Sokcap48
Senior Member

USA
904 Posts

Posted - Oct 25 2018 :  2:43:27 PM  Show Profile  Reply with Quote
Lora-congrats back to you! Hey if I can help, answer questions or give you a pat on the back just reach out. I think you have my email? You are right, hey I wanted to die for the first 3 months-no appitite,weak,tired,grumpy you name it, I had it. But slowly month 4 it turned around and I haven’t looked back. Keep doing your rehab and do it at home on your own everyday!!!!!! It will pay off. Let me know the details. I am here for you anytime you want. I have mentored a lady for about a year + now and we have become good friends, my wife Patty and I went up to Oregon and met her this past month on one of our road trips. It is fun to compare notes. Take care and keep up the good work. I am so happy for you!!!! Brings a tear to my eye when I think about how blessed we both are.
Regards
Paul

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Oct 25 2018 3:04:13 PM
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andy55
Rookie

USA
9 Posts

Posted - Dec 13 2018 :  4:53:42 PM  Show Profile  Reply with Quote
Hey, folks. I am mostly a lurker on this forum but I wish to chime in because I think I will soon be a candidate for transplantation.
I am almost 70 years old. Was diagnosed with severe COPD in 2000 and am now very severe with FEV1 0f 26% (on a good day). I have started using O2 during the day, started sleeping with it 2 years ago.
I live in Tucson, Az. I have been seen by two clinics: St. Joe's in Phoenix (also called Dignity health) and Banner Medical center, affiliated with the University of Arizona in Tucson. I was evaluated at St. Joe's about 1 1/2 years ago and they felt that I wan't ready yet for a transplant. I will be evaluated next week by Banner.
I have read much of this thread and have followed Paul's comments about St. Joe's. I assume that I would have to stay in Phoenix for 3 months or so if treated there. The convenience of being treated in my home town (by Banner Med. Center) is attractive, but I don't know how 'good' they are. In other words, their success rate as compared to St. Joe's Clinic. My pulmo told me they do 40 transplants per year.
So I am in a quandary right now as to which clinic I should pursue.
Any thoughts you can provide would be appreciated.
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andy55
Rookie

USA
9 Posts

Posted - Jan 22 2019 :  6:51:14 PM  Show Profile  Reply with Quote
Hey, Folks. I am currently being evaluated for double lung transplant at Banner University Hospital in Tucson. Once they agreed to do the evaluation, things really started moving along. Tomorrow my wife and I will spend 4 hours there, talking with the insurance counselor, social worker, and me getting some blood tests. I was treated for prostate cancer in 2017; but the Banner transplant team has reviewed my cancer treatment and status, and have decided to proceed. I am both excited and a bit intimidated.
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Lora-WV
Member

USA
68 Posts

Posted - Jan 23 2019 :  05:56:28 AM  Show Profile  Reply with Quote
Good luck Andy! I'm in Pittsburgh and had my LFT yesterday, before transplant the lowest my FEV1 was 19, yesterday it was 136! I feel so
blessed! It'll soon be 6 months for me. I'm getting my broncoscopy today. I just keep getting better and better. I'm so very thankful.
Keep us posted Andy.
Paul do you have my email, would love to chat. Had a lot going on earlier and now have more time.
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andy55
Rookie

USA
9 Posts

Posted - Feb 17 2019 :  2:07:31 PM  Show Profile  Reply with Quote
Thanks, Lora-WV. I am mostly through the evaluation stage. I had a heart catheterization last Monday. They found blockages in two of the three arteries. Decision now will be to fix soon, or do it during lung transplant. I am a bit disappointed that if I get the transplant, I will still need to take prednosone. Even more than I am taking now. My recent FEV1 was 21%. I'm not sure how it is possible to get 136 for an FEV1 score, but I'm glad that you are doing much better. I am unable to email anyone here yet due to forum rules. Not enough posts. So if anyone wants to email me, I would welcome that.
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Dave-OH
Administrator

USA
4217 Posts

Posted - Feb 17 2019 :  8:36:47 PM  Show Profile  Reply with Quote
Blowing more than 100% predicted will get you a score over 100%.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
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Lora-WV
Member

USA
68 Posts

Posted - Feb 18 2019 :  06:16:45 AM  Show Profile  Reply with Quote
Andy you will be taking a lot more drugs than just the prednisone, I started out taking around 15 am and almost that many pm but now it's
downto 6 or 7 am and 5 pm. Not a bad trade off to be able to function again. The thing that I am most grateful for was being able to take
care of my terminally ill husband after transplant, he passed Dec. 7. There was no way I could have before transplant. Please keep me
posted Andy and don't lose faith, if it's meant to be it'll be!
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andy55
Rookie

USA
9 Posts

Posted - Feb 18 2019 :  8:28:45 PM  Show Profile  Reply with Quote
quote:
Originally posted by Dave-OH

Blowing more than 100% predicted will get you a score over 100%.



Wow! That is encouraging!
Thanks, Dave.
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andy55
Rookie

USA
9 Posts

Posted - Feb 18 2019 :  8:31:10 PM  Show Profile  Reply with Quote
quote:
Originally posted by Lora-WV

Andy you will be taking a lot more drugs than just the prednisone, I started out taking around 15 am and almost that many pm but now it's
downto 6 or 7 am and 5 pm. Not a bad trade off to be able to function again. The thing that I am most grateful for was being able to take
care of my terminally ill husband after transplant, he passed Dec. 7. There was no way I could have before transplant. Please keep me
posted Andy and don't lose faith, if it's meant to be it'll be!


Thanks, Lora. Sorry for the loss of your husband, though.
It must have been very difficult, with both of you ill at the same time.
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Lora-WV
Member

USA
68 Posts

Posted - Feb 19 2019 :  06:36:11 AM  Show Profile  Reply with Quote
He took care of me and after transplant I was able to take care of him, and what an honor it was.
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micah35
Member

60 Posts

Posted - Feb 19 2019 :  10:29:18 PM  Show Profile  Reply with Quote
Lora, I am so sorry to hear about your tremendous loss, but glad that you were able to be there for your husband when he needed you. Your strength and positive attitude are truly inspiring. Thank you for sharing it and I wish you the very best.
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Lora-WV
Member

USA
68 Posts

Posted - Feb 20 2019 :  06:34:11 AM  Show Profile  Reply with Quote
Thank you Micah35, I appreciate your good wishes and if there is something I can do to help, give me a shout!
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Sokcap48
Senior Member

USA
904 Posts

Posted - Mar 07 2019 :  1:12:20 PM  Show Profile  Reply with Quote
Hi everyone! I have been off the grid for the last 3 months. Lora glad you are doing well sorry to hear of your loss. I lost my son last Aug so I know your pain.
Really glad you are doing well—see I told you so :-) :-).

Andy55- I am so happy that you are going thru the evaluation. Hope your heart problems don’t disqualify you. Hang in there and keep working out! The better shape you are going in the better shape you will be coming out. Do sit to stands/squats, they will help you to be able to get out of bed, because you can’t use Your arms to push, pull or lift for a long while. St. Joes is an awesome transplant center but being close to your center is important! You are hooked to them for the rest of your life ( hope that is a long while ) and yes Lora is right on . Pred is the least of your worries. I am 2 1/2 years out and including vitamins and supplements I still take 30 some pills a day. SMALL PRICE TO PAY FOR WHAT I I GAINED!!!!!! If I can help please reach out. We are all family .
I should be online for the next several months.
Regards Paul

Paul-Ut
The Journey Continues.
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