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paulmjo
Member

USA
118 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
939 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
Lung in a Box recipient
The Journey Continues.
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Lora-WV
Member

USA
76 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
939 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
Lung in a Box recipient
The Journey Continues.
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Lora-WV
Member

USA
76 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
939 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
Lung in a Box recipient
The Journey Continues.
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paulmjo
Member

USA
118 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
118 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
4275 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
76 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
76 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
23 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
76 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
23 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
118 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
76 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
939 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
Lung in a Box recipient
The Journey Continues.
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Dave-OH
Administrator

USA
4275 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
118 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
118 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
204 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

2032 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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andy55
Rookie

USA
23 Posts

Posted - Aug 24 2019 :  1:31:44 PM  Show Profile  Reply with Quote
Lora, Great to hear from you. I was worried because I knew that you were having trouble and I didn't see a post from you for awhile.
Please keep us updated.
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Jan-KS
Member

USA
108 Posts

Posted - Aug 28 2019 :  05:57:07 AM  Show Profile  Reply with Quote
I'm so frustrated (jealous) because I can't find any way to meet all the criteria necessary. For example, a few years ago I approved as a possible candidate at Barnes Jewish hospital in St Louis - they basically told me I had to move to St Louis (it's 7 hours away) - at the time, my husband wasn't really ready to move because of his poor health and wanted to see as much of his kids and grandkids as possible plus financially we would have lost money on the sale of our house - it would have been a financial nightmare.

Well now my husband has died, I sold the house for exactly what the bank showed I owed, so all of his reasons have no bearing on my decision but I guess I have to have a caregiver to go with me. I only have a daughter and son-in-law expecting a baby soon. They both have professional careers too. So there is no way my daughter could come with me. So just because I have a small family and I'm not rich enough to hire somebody 24/7 I don't have an option to even get a lung transplant? Have any of the options changed? I also know I could not reliably drive due to all the pain medication I'm on. I need a wheelchair to navigate a large hospital because I cannot walk far. I'm only 58 and it seems I could have a much longer life live and a better quality of life if I could get a transplant. I'm so depressed and alone and unable to do much of anything physical.

I know life isn't fair but I feel so cheated

Jan C
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Sokcap48
Senior Member

USA
939 Posts

Posted - Aug 28 2019 :  3:11:44 PM  Show Profile  Reply with Quote
Jan-KS Sorry you are feeling dumpy. Sent you a PM . Hope it answers some of your questions. Write me with any questions and I will do my best to answer them.

Paul-Ut
Double lung transplant 9-30-16
Lung in a Box recipient
The Journey Continues.

Edited by - Sokcap48 on Aug 28 2019 3:12:09 PM
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Dave-OH
Administrator

USA
4275 Posts

Posted - Aug 28 2019 :  5:45:28 PM  Show Profile  Reply with Quote
I had to choose a transplant center. There are 4 within 2 hours and 2 more within 5. But I did
Choose one 8 hours away. I also have a small family,but the family lives in Maryland and we live in Ohio. The consideration is my wife has her son and his girlfriend is a nurse at the hospital with the transplant center. You and your family have to figure out if they can make it work. A transplant comes with it's own issues. I am again pre after a previous listing under the old system years ago.

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
76 Posts

Posted - Aug 30 2019 :  5:02:12 PM  Show Profile  Reply with Quote
I feel so blessed to have a great support system, my step daughter drove me for the transplant, my
daughter, who is an atty flew in for the transplant and for everything that she deems important, which
is quite often. My younger sister, whose granddaughters I am raising, drove all the way from Arizona
to stay with me for 6 weeks. I feel so lucky and I am so thankful that I was able to be there for my
husband.

The Hillman Cencer Center called and the tumors have not grown or moved but they are still
there so we will be starting something that is called RCHOP which I guess is a harsher chemo.
Not sure when , all I know is I will beat this. I continue to be thankful for having the transplant,
Iím still so much better off than I was. I do think my breathing is better so things are looking up!

Jan, Iím sorry that youíve been having problems, do you have any cousins or good friends?
Desperate times call for desperate measures. Hang in there and keep the faith.sometimes if we
ask for something, itíll just happen.

Andy keep up the good fight, I know I was told that one of the criteria to transplant was you had
to be on oxygen 24/7 not sure whether that has changed or not. But then by the same point my
allocation score was pretty low and I was working full time when I got the call so who knows?
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paulmjo
Member

USA
118 Posts

Posted - Sep 02 2019 :  2:05:03 PM  Show Profile  Reply with Quote
Update, I canít believe the extent of testing at Mayo Clinic in Jacksonville to evaluate me, started 8/12-8/16, again 8/19-8/23, again 8/20-8/23, WOW!
Got a call 8/30 approved by team for double lung transplant. Not sure of protocol of other hospitals but must have primary caregiver during surgery and for 3 months following and stay a few minutes from hospital. You canít hire anyone as a caregiver and each caregiver must have a backup. I lost my spouse 1 1/2 years ago so this part is difficult to ask friend(s) to give up 3 plus months 300 miles from where they live. Two gal friends have offered to be primary caregivers with another as backup, but can take turns every 2 weeks, Mayo said minimum is 3 weeks each, and then I need two backups if I have two caregivers.
Hope for surgery but this part is hard to fill. Seem to have gone downhill and donít want to be removed from approval.
Any suggestions from other transplant patients?
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Dave-OH
Administrator

USA
4275 Posts

Posted - Sep 02 2019 :  8:56:16 PM  Show Profile  Reply with Quote
I am pre-listed at Hopkins. I was listed before and had tests both in my home hospital and a week at the center.

I am fortunate, mu son and his nurse girlfriend live 40 minutes from the center, and she is a cardiac care nurse there as my backup. That vie me 3 caregivers plus if it is 5 years off my granddaughter with be a teenager.

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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Jan-KS
Member

USA
108 Posts

Posted - Sep 03 2019 :  03:29:48 AM  Show Profile  Reply with Quote
See - that's the problem they don't facilitate making anything happen they just expect you to navigate the scene yourself. I realize the big barrier is to live 2 hours from the transplant center then I could move wherever but I need a caregiver to go with me. Until I have surgery I could survive without any help - driving in a strange city would be a little scary but I'd do it - now after the surgery - that's when I would have to hire somebody once I was released from the hospital. I don't understand why the hospital makes life so difficult (having to have two backups - screw them - Its obvious to me they don't actually want any customers when they start making ridiculous demands.)

I live NO WHERE near a transplant place. Barnes actually kept me on their list after we had long given up - they called me and said "do you still intend to have the surgery, you look like a good candidate" and I had to have them take me off the list. The two places I know of are Barnes in St Louis (7 hours) and Oklahoma City (5 hours). The medical center for Kansas University talks about doing them but then they gave up doing heart transplants and gave the authority to another hospital. I'm in Palliative care right now and they MAKE things happen rather than put barriers in front of you - but they've never worked with a transplant - just cancer and other critical illnesses. I'm just finally to getting to the point where I can care for myself but I can't take out the trash or really cook. I have no interest or reason to live. I never see my daughter - she's too busy to call even if I call or text her. The very last think she's going to do is risk her and her husband's career - plus her husband is required to stay here until his daughter is out of school and he no longer has custody. My cousins all work full-time jobs except the one that has cancer. I do have one that cares for his father full time (who has alzheimers) because he himself is mentally disturbed - I don't think I would be completely safe around him, he has trouble with women rejecting him. I have one in Arizona recently widowed that would probably do it as long as I supported her and she'd want time off to see her children/grandchildren - so does Phoenix have a transplant center?

Jan C
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jmrommes
Contributing Member

2032 Posts

Posted - Sep 03 2019 :  10:09:20 AM  Show Profile  Reply with Quote
Yes, one of the best, and one with very short wait times. I have a good friend who had his TX there. Phoenix is a good choice.

Exercise not only lets me live, it enables me to have a life.
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andy55
Rookie

USA
23 Posts

Posted - Sep 05 2019 :  12:09:31 AM  Show Profile  Reply with Quote
St. Joe's Clinic (also called Dignity Health) in Phoenix is one of the best in the country. I live 2 hours from there.
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paulmjo
Member

USA
118 Posts

Posted - Sep 15 2019 :  10:57:19 AM  Show Profile  Reply with Quote
I have been approved for double lung transplant at Mayo Clinic in Jacksonville.#128512; Told be listed this week. Yes!
Am trying for dual listing at Mass General since family all within an hour while on wait list and post care.#128591;
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andy55
Rookie

USA
23 Posts

Posted - Sep 18 2019 :  9:25:24 PM  Show Profile  Reply with Quote
quote:
Originally posted by paulmjo

I have been approved for double lung transplant at Mayo Clinic in Jacksonville.#128512; Told be listed this week. Yes!
Am trying for dual listing at Mass General since family all within an hour while on wait list and post care.#128591;



Good luck, Paul. I am expecting to be listed soon myself.
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paulmjo
Member

USA
118 Posts

Posted - Sep 20 2019 :  08:16:25 AM  Show Profile  Reply with Quote
Oops, now they tell me not listed, but still approved for listing. Released me from Clinic, return one month for evaluation. On O2, but not 24/7 so score is low.
I have real swings in mobility, sometimes walk some distance no real problem, then canít do short walk. Saturation all over the place, walk its 93, but completely out of breath. Getting a bit despondent. I donít expect miracles just want to stay self sufficient even at low level.
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Sokcap48
Senior Member

USA
939 Posts

Posted - Oct 17 2019 :  3:59:42 PM  Show Profile  Reply with Quote
Jan I TXíd at St. Joes 9-30-16. They have an awesome staff. You will need to have a caregiver and at least one backup care giver. This is totally necessary! You can not take care of yourself for a long while, physically or mentally. ( you can NOT drive for at least 6 weeks ) As Jean said they have a short turn around time. We temporarily moved from southern Utah to Phoenix. Was listed Sept. 6 got my first call on the 11th. Turned out to be a ďdry runĒ got my next call the 29th and was Txíd on the 30th.

If I can help or answer any ?ís just ask! You can also PM me.
Regards

Paul-Ut
Double lung transplant 9-30-16
Lung in a Box recipient
The Journey Continues.
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paulmjo
Member

USA
118 Posts

Posted - Nov 28 2019 :  1:34:54 PM  Show Profile  Reply with Quote
#128512; just got the call this week that Mass General accepted me for a double lung transplant and will put me on active status as soon as I get in the area.
Living in Florida now, but will move in with my brother and his wife until the magic time, and they and nieces will be my caregivers post surgery. Canít wait to get started as I am 75 on 12/9 and will be one of the oldest if they find a donor and I get the call.
I am sure even with lots of research I am going to be surprised at most difficulties and recovery duration. Good news, I am aggressive with recovery and follow everything thatís required. I know a bigger risk at my age, but willing if they are willing. Scared and excited and happy to be accepted.
Happy Thanksgiving to you all.
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Dave-OH
Administrator

USA
4275 Posts

Posted - Nov 28 2019 :  5:56:46 PM  Show Profile  Reply with Quote
Congrats and Happy Thanksgiving

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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Sokcap48
Senior Member

USA
939 Posts

Posted - Nov 29 2019 :  3:37:23 PM  Show Profile  Reply with Quote
Paul ó So Happy for you!! That is awesome, a life changer! Get as strong as you can, walk and exercise, and do your ďSit to StandsĒ. The better shape you are going in the better shape coming out. If I can answer any questions let me know. Once again Congrats!

Paul-Ut
Double lung transplant 9-30-16
Lung in a Box recipient
The Journey Continues.

Edited by - Sokcap48 on Nov 29 2019 3:38:12 PM
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paulmjo
Member

USA
118 Posts

Posted - Nov 29 2019 :  8:42:56 PM  Show Profile  Reply with Quote
Thanks all, will leave Florida 12/12 for brothers house not too far from Mass General, hope for a call soon after, at my age the sooner the better, turning 75, 12/09
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paulmjo
Member

USA
118 Posts

Posted - Nov 30 2019 :  11:41:32 AM  Show Profile  Reply with Quote
Paul, Utah. Boy they scare you with possible results, complications etc. guess they have to disclose it all, two scariest are they say meds damage kidneys and possible have to be on dialysis rest of life plus I do have some small amount of plaque in artery near heart and in Carotid arteries and they say could have a stroke. Not scaring me off, just makes me anxious.
I know if you believed all warnings on medications, you wouldnít take any.
Thanks for the support hope I get surgery soon.
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