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paulmjo
Member

USA
110 Posts

Posted - May 27 2019 :  4:43:04 PM  Show Profile  Reply with Quote
I have tried Miami, closest to me to see if a transferplant was feasible. evaluating doctor said too old too high risk. Not sure why high risk, except age. Heart good, liver and kidney function good, no diabetes, colesterol 156 with meds, blood pressure 111/68 with meds. Guess just didn't get sick enough soon enoughh.
Anyone know people over 74 had a transplant?

Sokcap48
Senior Member

USA
921 Posts

Posted - May 27 2019 :  4:56:01 PM  Show Profile  Reply with Quote
Paulóis yourFEV1 still at 30%? As when we talked or has it gone down?
I believe St. Joes in Phoenix did a 74 year old last year but that would be a long commute for follow ups. But I do know a guy that Txíd in Phoenix and lives in NewYork state and is still commuting after 2 1/2 years.

Paul-Ut
Double lung transplant 9-30-16
The Journey Continues.
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Lora-WV
Member

USA
74 Posts

Posted - May 28 2019 :  06:23:19 AM  Show Profile  Reply with Quote
Umpc does transplants that other facilities have turned down and as Far as Iím concerned, they are the best.
Might want to check them out.
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Sokcap48
Senior Member

USA
921 Posts

Posted - May 28 2019 :  2:20:02 PM  Show Profile  Reply with Quote
Loraófunny how we are ALL prejudice. :-) all the people I email say the same about their clinic.
How are you doing? How is the breathing? Do you want to eat everything in sight yet?so glad you took that step. Wish we could talk more people onto it.

Paul-Ut
Double lung transplant 9-30-16
The Journey Continues.
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Lora-WV
Member

USA
74 Posts

Posted - May 28 2019 :  5:50:21 PM  Show Profile  Reply with Quote
I had no issues until a couple of months ago, my fev1dropped from 137 to 98 to 75 to 52 to 40. They are not sure
whatís causing it, rejection,infection or something else. A few weeks ago I was hospitalized for 8 days to get high
doses of steroids ( starting with 750) and something called rATG which is to kill my immune system. I went
home and had another dr apt this past Wednesday and now am back in the hospital. Am I glad I had the
transplant? Absolutely! Even if they canít fix me and the worst case scenario happens, Iím so thankful!
The last 9 months have been amazing, nice to have had my life back and I will again.

Edited by - Lora-WV on May 28 2019 5:54:07 PM
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Sokcap48
Senior Member

USA
921 Posts

Posted - May 28 2019 :  6:53:23 PM  Show Profile  Reply with Quote
Lora- so sorry to hear of your troubles. You are right it is worth it and you will get back! This is just a bump in the road.
I can't find your email sorry PM me with it please and I will stay in touch.
Prayers
Paul

Paul-Ut
Double lung transplant 9-30-16
The Journey Continues.
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paulmjo
Member

USA
110 Posts

Posted - May 29 2019 :  11:49:19 AM  Show Profile  Reply with Quote
Lora, who and where is UMPC? Thanks
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paulmjo
Member

USA
110 Posts

Posted - May 29 2019 :  11:56:16 AM  Show Profile  Reply with Quote
Lora, I found the information, thanks
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Dave-OH
Administrator

USA
4262 Posts

Posted - May 29 2019 :  12:12:55 PM  Show Profile  Reply with Quote
https://www.upmc.com/

University of Pittsburgh Medical Center

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


My Site: http://lungresources.com
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Lora-WV
Member

USA
74 Posts

Posted - May 29 2019 :  5:50:27 PM  Show Profile  Reply with Quote
Paul they really are the best! The whole team from the surgeons to the transporters, to nutrition to housekeeping
they are all terrific! Good luck and please keep us posted!
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Lora-WV
Member

USA
74 Posts

Posted - May 29 2019 :  5:55:03 PM  Show Profile  Reply with Quote
They have Family House here in Pittsburgh that has free transportation to the hospital, the charge for Family House
is $68 a night. They had cooking and laundry facilities available and itís just a nice place to stay and affordable.
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andy55
Rookie

USA
19 Posts

Posted - May 30 2019 :  7:12:16 PM  Show Profile  Reply with Quote
Good luck Lora. I am hoping that you will get back on track. I have been going to a TX support group lately, and they discussed rejection and how they deal with it. I assumed that the first sign of rejection meant that the show was over, but they informed me that this is not the case. It often means that adjustment to the medications is needed.
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Lora-WV
Member

USA
74 Posts

Posted - May 30 2019 :  8:08:06 PM  Show Profile  Reply with Quote
Having surgery tomorrow morning, they will make a few incisions and try and take some growths in my lungs to find out
whatís going on. Would appreciate your thoughts and prayers.
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andy55
Rookie

USA
19 Posts

Posted - May 31 2019 :  4:08:24 PM  Show Profile  Reply with Quote
quote:
Originally posted by paulmjo

I have tried Miami, closest to me to see if a transferplant was feasible. evaluating doctor said too old too high risk. Not sure why high risk, except age. Heart good, liver and kidney function good, no diabetes, colesterol 156 with meds, blood pressure 111/68 with meds. Guess just didn't get sick enough soon enoughh.
Anyone know people over 74 had a transplant?



Paul, whrn I interviewed at St. Joe, they told me they would do TX up to the age of 75.
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paulmjo
Member

USA
110 Posts

Posted - Aug 08 2019 :  09:35:47 AM  Show Profile  Reply with Quote
Not sure how will turn out, I keep trying. I am going to Mayo Clinic in Jacksonville, Fl on 8/12 for two weeks evaluation for transplant. I sure will know everything about myself at the end, quite a schedule of tests.
If nothing else, maybe have some other suggestions for me.
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Lora-WV
Member

USA
74 Posts

Posted - Aug 09 2019 :  06:42:18 AM  Show Profile  Reply with Quote
Good luck Paul, please keep,us posted. Here's an update on me I have PTLD which is lymphoma related to the transplant.
They said of all the things to get this is the best as its more easily treatable. I'm starting my second infusion of the second
go round today and feel fairly good. I've been back on oxygen but still so much better since before transplant. I've been
getting some work done around the house the I've been unable to do for years, painting, cleaning etc.... So I can't
complain. Ill go to the Hillman Cancer Center in Pittsburgh the 23 to get a PET and CT scan and will know more then.
Paul sokcap48 I emailed you a few weeks ago but apparently it didn't go through.
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Sokcap48
Senior Member

USA
921 Posts

Posted - Aug 09 2019 :  6:48:43 PM  Show Profile  Reply with Quote
Best wishís on the evaluation, it can be stressful but not bad if you just let them walk you thru it.

Lora- catch us up on all your finds and how you are doing

Paul-Ut
Double lung transplant 9-30-16
The Journey Continues.
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Dave-OH
Administrator

USA
4262 Posts

Posted - Aug 09 2019 :  8:55:39 PM  Show Profile  Reply with Quote
Best wishes. I have done it and was listed, but then the rules changed and am not sick enough yet. In those it was time on list. Now it is lung allocation score.

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


My Site: http://lungresources.com
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paulmjo
Member

USA
110 Posts

Posted - Aug 17 2019 :  4:24:15 PM  Show Profile  Reply with Quote
Yes as Dave said, now an allocation score and feel I will not qualify as not on oxygen 24/7.
Mayo been great, this coming week will have consultation will all doctors on transplant team, if not transplant, maybe LVR, if not maybe clinical trial for stem cell that Mayo just starting. We will see.
,
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paulmjo
Member

USA
110 Posts

Posted - Aug 17 2019 :  4:28:38 PM  Show Profile  Reply with Quote
Thanks Laura, and best wishes to you. Testing a long process, never thought two weeks, had ten on Tuesday, 6 Wednesday, 4 Thursday and one Friday.
Total 30 vials of blood, two many tests to bore everyone with, but sure think they and I will know everything there is to know.
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Jocopd
Member

USA
192 Posts

Posted - Aug 18 2019 :  10:10:36 AM  Show Profile  Reply with Quote
quote:
Originally posted by paulmjo

Yes as Dave said, now an allocation score and feel I will not qualify as not on oxygen 24/7.
Mayo been great, this coming week will have consultation will all doctors on transplant team, if not transplant, maybe LVR, if not maybe clinical trial for stem cell that Mayo just starting. We will see.
,



Mayo is starting stem cell stuff for lungs? Wow so maybe it wasn't all snake oil after all.
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jmrommes
Contributing Member

2015 Posts

Posted - Aug 18 2019 :  8:51:34 PM  Show Profile  Reply with Quote
They're starting trials. But it is legitimate research, not the snake oil crap the Lung Institutes have been selling, literally. This is just the beginning. I think we'll see more in the next couple of years.

Exercise not only lets me live, it enables me to have a life.
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