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Sokcap48
Senior Member

USA
954 Posts

Posted - Dec 01 2019 :  6:59:37 PM  Show Profile  Reply with Quote
Yes indeed they rip your kidneys and liver all to heck BUT. You will be alive :-). And they monitor all your stats very closely. After your 3 month stint. You will go back Monthly the first year and quarterly after that and will have labs done each time. You will do fine I am right here if you need anything from me.

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

USA
126 Posts

Posted - Jan 10 2020 :  09:43:26 AM  Show Profile  Reply with Quote
Well continued bumps in the road, I moved in with my brothers family to be near Mass General who activated me upon my arrival. That lasted one week, they say a sputum showed mycobacterium and are waiting further results as to what it is, been one month now. Other samples showed nothing. Am off Mayo since I moved here, now one female doctor said I didn’t look as good as in November, funny I feel stronger, so she is hesitant to recommend surgery, but will wait. Darn frustrating.
Seems LAS score is lower than most, but as you get older and score goes up they seem to not want to do surgery, boy its a find line to be sick enough and healthy enough.
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Dave-OH
Administrator

USA
4301 Posts

Posted - Jan 10 2020 :  11:59:27 AM  Show Profile  Reply with Quote
Yes. it is hard enough to be healthy enough for a lung transplant while still needing one. So many factors are against a transplant. Heart disease, failure to do pulmonary rehab, certain infections, liver and kidney issues. It is a balancing act for both old, and the young CF patients who also get transplants.

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
126 Posts

Posted - Jan 15 2020 :  3:26:56 PM  Show Profile  Reply with Quote
Thanks for all the input, requested my third pulmonary rehab but need special exceptions from Medicare since used up my allotment trying to get healthy.
Still no word from Mass General, tough having patience when type A big time.
Been 35 days since last sputum culture, they say takes time to grow to see what it may be, even could be nothing, I just wait doing as much exercise at home as possible in this cold weather.
I start to feel like it’s not going to happen, hope I am wrong.
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Dave-OH
Administrator

USA
4301 Posts

Posted - Jan 16 2020 :  12:57:38 PM  Show Profile  Reply with Quote
I have gotten cultures back in a few days, but sensitivities take a bit. So does mycobacteria and fungus and other stuff.

It depends on the organism that's being cultured. If it's a bacterial culture you could have the results in a week or two. If it's a fungal culture it could take as much as 8 weeks.


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
126 Posts

Posted - Jan 16 2020 :  7:50:46 PM  Show Profile  Reply with Quote
They are looking for TB, since one test showed latent TB and one did not. Meanwhile am on medication for TB for past month and say I need to take it for 9 months. I assume results soon as was cultured 11/10/2019
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Sokcap48
Senior Member

USA
954 Posts

Posted - Jan 19 2020 :  09:55:45 AM  Show Profile  Reply with Quote
Hang in there Paul. It is worth the fight. Best wishes! Stay in as good f shape as you can.

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

USA
126 Posts

Posted - Jan 25 2020 :  9:05:49 PM  Show Profile  Reply with Quote
thanks, am doing all i can, exercise almost every day, little peddle machine 30 legs, 20 or thirty arms, try to walk stairs, squats 10-15 no weights, walk around house.
.
Paul, how was recovery? trying to do all i can at 75 to make it a quick and steady one.Can ot wait to get started, get y life planned and take care of a precious gift.
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Sokcap48
Senior Member

USA
954 Posts

Posted - Jan 26 2020 :  8:47:11 PM  Show Profile  Reply with Quote
Paul—that is very much individualized. It is no walk in the park but manageable, they basically cut you in half, your team will help you every step of the way. Listen to them and especially your physical therapist, mine was an angel not only helped me physically but also mentally. She was my cheerleader! I had NO problems with lungs or incision. My problems were all stomach, part me ( my large intestine looped over my liver and had to be put back in place) part meds—I had no appetite lost weight and thus energy. But the team got me going. I was out of Hospital in 10 days ( about average ) after about 8-9 weeks everything turned around and I was good to go. Went on my first little hike 1 1/2 miles in the foothills out of Phoenix 75 days after transplant. From then on it was great. It takes a while for your body to catch up with your lungs :-). Keep doing what you are doing the stronger you are going in the stronger you with be coming out. Keep doing those squats or sit to stands! They will help to get your self out of bed after surgery because you can NOT use your arms to push pull or lift fit a long time. Your team will show you how to hook your leg over the side of the bed a lift yourself up out of bed.

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

USA
126 Posts

Posted - Jan 30 2020 :  11:52:02 AM  Show Profile  Reply with Quote
Thanks been doing all that as much as possible, 10-15 squats every day or other day, arms with bands, peddle machine 30 minutes 5 days a week, arm machine as well, old man but want as much strength as possible. Paul, your input has been very encouraging and helpful, I know everyone is different in recovery. This will be my first surgery of any kind so not sure what to expect. Seems I go for a big one to start.

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paulmjo
Member

USA
126 Posts

Posted - Feb 03 2020 :  8:18:05 PM  Show Profile  Reply with Quote
Got the call last Thursday 1/30 to go to Mass General for transplant, there for hours, IV etc, on gurney, signed consent, Doctor came in and said, lung not producing enough oxygen, I could be discharged. Big disappointment, discouraged, but have to feel better to not have replaced bad lungs with bad lungs.
Back home waiting for call, but now said would not use Hep C lungs, because my treatment for latent TB showed it was increasing bad levels and had to stop, and Hep C cure would do the same. Catch 22, hope for another call soon.even though I am afraid less lungs available without accepting Hep C.
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paulmjo
Member

USA
126 Posts

Posted - Feb 17 2020 :  06:31:53 AM  Show Profile  Reply with Quote
Got the great call Tuesday 2/12 for transplant at Mass General, this time was a go. So elated but painful. Transplant early morning 2/13, all doctors say doin real well so far, moved to step down last night and feeling pretty good. On solid food, PT 2 times a day. What a gift
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Jocopd
Member

USA
213 Posts

Posted - Feb 17 2020 :  09:54:49 AM  Show Profile  Reply with Quote
nm

Edited by - Jocopd on Feb 17 2020 11:30:05 AM
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micah35
Member

67 Posts

Posted - Feb 17 2020 :  9:58:56 PM  Show Profile  Reply with Quote
How incredibly exciting, Paul! So happy for you and sending my best wishes, and please keep the good news coming.
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paulmjo
Member

USA
126 Posts

Posted - Mar 10 2020 :  5:47:57 PM  Show Profile  Reply with Quote
2 days short of a month and heading to brothers for several months. Feel really good, not a lot of stamina but completely independent except heavy things.
Bless the donor for my double lung transplant and skilled surgeons staff and nurses at Massachusetts General.
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rjh-spokane
Member

USA
62 Posts

Posted - Mar 11 2020 :  02:59:13 AM  Show Profile  Reply with Quote
That is so wonderful. I'm so glad you got what you needed and it is successful. Enjoy every thing in life you can!
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Sokcap48
Senior Member

USA
954 Posts

Posted - Mar 11 2020 :  9:53:36 PM  Show Profile  Reply with Quote
Paul soooo Happy for you— told you it was worth fighting for. Stay on that PT it will make all the difference in the long run. Yes you will be tired for a long time. It will take work for your body to catch up with your lungs! I have felt like I was reborn and so will also. Have any questions along the way let me know.

Paul-Ut
Double lung transplant 9-30-16
Lung in a Box recipient
The Journey Continues.
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andy55
Rookie

USA
24 Posts

Posted - Mar 15 2020 :  2:22:57 PM  Show Profile  Reply with Quote
Congratulations, Paulmjo. I'm surprised they are allowing you to travel after only one month!
Hopefully my turn will be coming soon.
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