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PennyPA
Contributing Member

USA
5808 Posts

Posted - Apr 05 2017 :  4:48:58 PM  Show Profile  Reply with Quote
Well, I'm not sure whether I should be congratulating you or sympathizing with you, Lora! Maybe a little of both, huh? At least you've gone through the testing and know that you have this option for when you need it, right? I think you've made the right decision, too. Just keep on keeping on, Lora, and you will know when it's truly your .time

****************************************************************
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
804 Posts

Posted - Apr 07 2017 :  10:22:26 PM  Show Profile  Reply with Quote
Lora get on the list and get fixed--you will NOT reget it!! ! I was at 19 when TX'd in good shape and still pretty active BUT!!!! I am 6 months out, just had my 6 month clinic and everything is fine, lungs clean no problem. You can't believe the difference new lungs make! I just hiked 5+ miles at Organ Pipe Catus national monument a couple of weeks ago and NO breathing problems at all just built shelving units and rearranged our garage and today put together two bikes for my Sweetie and me. I have more energy and desire to get r done than I have had in years!! Don't wait get fixed! The longer you wait the worse you will be. The better shape you are in going into surgery the better shape you will be coming out. GET ON THE LIST and get a new life. It is better than I can ever express!
I would go thru it all over again.
Paul
PS- going to hike Grand Canyon in Sept.
The Journey Continues--------for me---it can for you too!

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Apr 07 2017 10:25:19 PM
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Lora-WV
Member

USA
53 Posts

Posted - Jul 26 2017 :  4:17:24 PM  Show Profile  Reply with Quote
Thought I would let you know Paul what's been going on. I went back to Pittsburg yesterday for another check up, I've had a few since
we've "spoken", because Iam not on oxygen 24/7 and I work full time my numbers are too low to be transplanted in the near future in
Pittsburgh. I was very disappointed and shed my share oftears but after looking at the other people waiting in the waiting area, I
wouldn't take lungs from any of them. My number is 32 which isn't very high, they did say if Iwanted they could put me on the list but
it would be very frustrating for me with having to check in all the time and they are right. They will continue to monitor me and when
circumstances change, who knows what might happen.
Paul I continue to be so happy for your success.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 26 2017 :  7:51:03 PM  Show Profile  Reply with Quote
Lora- so glad you checked in. Don't give up you can just put it on hold for a bit. At 32 you can still do a lot! Eat healthy and exercise every day. You stay In touch and I will follow your story as you have mine. Stay in touch with your clinic. Best wishes to you. Again thanks for checking in with us. Yes I am coming up on the month 11. And going strong. Keep that card in your pocket. Best of luck in the future.
Took a couple short hikes at the North Rim of the Grand Canyon. Going back next week and do two 5+ mile hikes at about 8,000 feet elevation.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jul 26 2017 7:56:09 PM
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Lora-WV
Member

USA
53 Posts

Posted - Jul 26 2017 :  8:12:19 PM  Show Profile  Reply with Quote
Oh one other thing, my fev1 was 19 and now it is 23, started taking Msm sulfur, have more energy and feel better!
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 26 2017 :  9:57:49 PM  Show Profile  Reply with Quote
Oh I Missunderstood you! I thought you meant your FEV1 was 32. 19 to 23 is only 4 points and you can vary that much depending on how you feel and even by who is giving the test. Some people get more out of you. Quit stalling and get on the list. I don't know what the wait time is where you are BUT if the right match comes along they are yours if not a match for someone else. Get on that list and take charge of your life it will be the best decision you willl ever make.

Paul-Ut
The Journey Continues.
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Lora-WV
Member

USA
53 Posts

Posted - Jul 27 2017 :  05:11:38 AM  Show Profile  Reply with Quote
UPMC told me that I would be almost last on the list because they take the cases that other hospitals
turn down. My transplant coordinator emailed me and said that perhaps Phoenix would be a much
faster turn around as they have a smaller list. I do have a problem with my antibodies which makes
it more difficult to find a match. Right now my biggest concern is my two great nieces who I am
raising. From start to finish your "journey" was about 1 year right? I am unable to just pick up and
leave at this time. We shall see how things go.
Paul I do appreciate your encouragement. It's always good to hear from you!
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Lora-WV
Member

USA
53 Posts

Posted - Jul 27 2017 :  06:11:06 AM  Show Profile  Reply with Quote
Right now for people who have type A blood, there are 25 on the list, I would be #24.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 27 2017 :  3:33:36 PM  Show Profile  Reply with Quote
A 1 in 24 chance to be reborn again! What have you got to loose it is a no brainer. Get on the list. Some of that 24 will pass before they get the call-some won't match for other reasons. It is not done by blood type only, size, antibodies and a lot of other factors are considered. Last year there were I believe 26 ahead of me when I listed on 9-6-16, I got my first call 9-11-16 it turned out to be a dry run. Then THE CALL 9-30-16. Sure there were people that had been on the list longer than me but they were not a match for the lungs- I was. You have went thru the first BIG and I mean BIG step. Evaluation is no walk in the park. Now take the easy step get on the list!! if you change your mind when you get THE CALL fine, you have that option. You can back out right up to the time they put you under. So step one is done do step two and you will be on your way. I wish I could talk with you about what is really holding you up. Oh I know I will send you a message! Get listed do it for you-do it for your friends and family.

Paul-Ut
The Journey Continues.
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faybees
Member

USA
62 Posts

Posted - Jul 28 2017 :  11:51:56 AM  Show Profile  Reply with Quote
Paul, do you have any restrictions? Can you travel abroad? How do the anti-rejection meds make you feel?
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 28 2017 :  3:44:23 PM  Show Profile  Reply with Quote
No red meat. As in rare, all meat must be well cooked. No raw fish. (That should be used for bait only anywayno pomagranites and no Grapefruit. ( didn't like either anyway.) Can't go over seas for at least one year and after that with approval only-with as many great places to see in these great United States I could care less. I travel more within the U S than most people do going over seas. The trade offs were minimal it was the best thing I ever did for me and my family.
Drug side affects: well at first I felt rundown and no energy, but I had just went thru what most people call major surgery And I was adjusting to the drugs and Clinic were changing the drugs for the first few months. Yes tracolimus depletes magnesium and calcium so I take drugs to off set that. Here's a kicker for you--a 69 year old male and I am on Prenatal Vitamins. After the first 3-4 months everything pretty much settled down. Anyone who thinks what ever thay have to give up any thing, only needs to think back before transplant to when they couldn't breath and were hooked to a hose or tank. The antirjectio drugs along with a new set of lungs make me feel great! Like bring it on! There were some rough times, the fist 3 months were a bear but mostly stomach issues I was grumpy and in pain but coming thru to the other side yes I would do it again in a heart beat.
Forgot one side effect-prednisone= 30 pounds Thought of a couple more restrictions, no buffets and no salad bars-to big of a chance of other people's germs.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jul 30 2017 6:54:48 PM
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faybees
Member

USA
62 Posts

Posted - Jul 29 2017 :  10:01:52 AM  Show Profile  Reply with Quote
Wow, thanks for that Paul, good insight. So at your age you were not considered too old? I think I read somewhere that you are too old at 65 for a transplant. I thought that was a bit off, lots of life left to live. As for the prenatal vitamins, well I have some in my cupboard. I read somewhere that they have everything in them that is good for you lol. Can I ask what pre-requisites you had to have, colonoscopy, shingles shot etc. Not sure where I am going with this. I did ask my pulmo if I was eligible for LVRS but he said my emphysema was too diffuse. He asked me about a lung transplant and I got a bit miffed, did not think I was that bad off but I guess I am getting there. Last time I was around 23% but that was a while ago. I see him again next week and shall ask more questions. I am just so fed up with feeling like an invalid with this freaking nose hose, it is doing my head in.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 29 2017 :  11:02:45 AM  Show Profile  Reply with Quote
If your doc will refer you GO FOR IT! If not do it anyway! 65 at one time was pretty much the cut off date. I have heard of people as old as 74 being approved and two or three last year were 72. They go a lot by your physical Conditioning and attitude. Go in humble but enthusiastic. I truly beleive my attitude and my gung ho physical work out helped a lot in getting me approvered. They had me get a dental exam. Colonoscopy, and a set of Hepititas shots. I had already had my shingles.prevnar13, and my flu shotbefore I went to Phoenix. Yep I was also to diffused. Even at 23 I think you could get listed pretty much stage 4. I was at 17-19 when listed.
Anything I missed let me know and I will be more than happy to answer. It is my way of paying back for the wonderful gift I have been given. If I my ask what is your age?

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jul 29 2017 1:55:21 PM
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faybees
Member

USA
62 Posts

Posted - Jul 29 2017 :  4:02:06 PM  Show Profile  Reply with Quote
65 this year. That is why I asked because like I said I thought that was the cut off age.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 29 2017 :  5:36:05 PM  Show Profile  Reply with Quote
Spring Chicken! Go for it!--if you have questions, concerns what ever let me know.
Keep on a good aggressive exercise program and start doing sit to stands (squats). The better shape you are going in the better shape you will be coming out. The squats are important getting in and out of bed as you can NOT use your arms for the first 8 weeks to push or pull so getting out of bed can be a challenge if you are not prepared.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jul 29 2017 5:39:30 PM
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faybees
Member

USA
62 Posts

Posted - Jul 31 2017 :  1:34:18 PM  Show Profile  Reply with Quote
Probably a really dumb question but why can't you use your arms for 8 weeks?
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Sokcap48
Senior Member

USA
804 Posts

Posted - Jul 31 2017 :  3:16:37 PM  Show Profile  Reply with Quote
Not a dumb question at all. You can some what use your arms: like to eat with wash etc. but can't push or pull. Your incision is horizontal across your chest. You are cut from one arm pit to the other, and your sternum is sawed in half it takes about that long for you to heal up. Your rehab takes that into consideration basically nothing over 10 pounds, so you you are not allowed to push with your arms to help yourself out of bed or pull on anything either. Hope that makes sense. If not shoot back with another ? And I will try to better explain. From one side to the other I had 48 staples plus they put a plate vertically over my stream and screwed it in. Looks pretty awesome in an X-ray.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Jul 31 2017 3:19:01 PM
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faybees
Member

USA
62 Posts

Posted - Aug 03 2017 :  12:06:27 AM  Show Profile  Reply with Quote
Good grief, 48 staples. Wonder if I could get a boob job at the same time, they would be in the general area hmmmm..................lol.
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faybees
Member

USA
62 Posts

Posted - Aug 03 2017 :  3:53:41 PM  Show Profile  Reply with Quote
So, just got back from my pulmo. He is going to refer me to Penn to talk about transplant. He said it would not hurt to go and do the testing and have some other eyes on me. He currently has 12 patients who have had it done and all seem to be doing well. He said that Temple stopped their program around 5 years ago and have just started it up again so recommended Penn, it is only 30 mins from where I live so no long distance travelling. I asked about LRVS and he said he did not think I was a candidate for it but to ask them about it and see what they say. Not sure what to think now, bit scared to start the ball rolling. Might have to procrastinate for a few days and think it over. Later
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 03 2017 :  7:04:28 PM  Show Profile  Reply with Quote
Faybees, go ahead and get the ball rolling. Just going to the testing is just that: going for the testing. If you do it, you'll learn a whole lot more than you know now about the whole process for LVRS and for a TX. Unless you go you won't know whether you qualify or not. Once you know that, then you can decide whether you want to be listed or not. Just going for the testing doesn't commit you to anything. Unless you go, you'll never know if it's something you want or not.

Exercise not only lets me live, it enables me to have a life.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Aug 03 2017 :  7:43:33 PM  Show Profile  Reply with Quote
Fay---Jean as always has wise words for you. Yes it is a bit scary but so is not being able to breath. I would suggest you go in for the evaluation, go in humble but enthusiastic. Your atttitude means a lot. Evaluation is done different at different Hospitals, some cram it into just a few days while others spread it out over a period of time. Which ever it is a stressful time but all worth it and your clinic will hold your hand and help you at every turn. I am so excited for you!! !! Any questions or concerns just let me know. Go for it.

Paul-Ut
The Journey Continues.
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faybees
Member

USA
62 Posts

Posted - Aug 04 2017 :  09:51:29 AM  Show Profile  Reply with Quote
I am going to wait until Monday before I make the call. So much to talk about with family. Pros and cons, I can only see the pro side but it is still a scary thing to do. Right now I am chugging along on these old nasty worn out lungs, but they are mine and they are working after a fashion until they do not want to anymore. Then there are new lungs. What happens if they do not take and fail, there are no options then, I cannot get the old ones back. Anyone know the life expectancy after transplant? I keep hearing 5 years but I was on the Penn site and there was a guy on there who is a major fund raiser for the hospital who has had a transplant and he is 7 years out and doing half marathons, wow. I would just like to get back to playing golf a couple of times a week, not much to ask. I shall let you know after I make the call on Monday and get things rolling. Thanks for the support and any advice you have to offer.
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faybees
Member

USA
62 Posts

Posted - Aug 07 2017 :  12:13:31 PM  Show Profile  Reply with Quote
So I made the call today to Penn. They want 6 months of records from my pulmo faxed to them and they will look at them and take it from there. Easy peasy that part. Scared, hoping I will be accepted for something to make breathing easier but scared incase they say you are accepted, how screwed up is that lol.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 08 2017 :  10:34:16 AM  Show Profile  Reply with Quote
Not screwy at all, faybees. That's how I felt before my LVRS. I think everyone goes through that stage when they're considering major surgery. And Penn is a great school/med center for TX's. That's where I had my LVRS testing done. Where do you live in PA? I was bred and born in PA and have lived there all my life except for 2 years at college.

****************************************************************
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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faybees
Member

USA
62 Posts

Posted - Aug 08 2017 :  10:56:55 AM  Show Profile  Reply with Quote
Hi Penny, yeah it is a strange feeling. I feel elated that I might be able to lead a better quality of life and terrified at the same time. I currently live in Upper Chichester, just outside the Delaware border. Been here 6 years. Was in Springfield for 12 years, then 12 years in AZ then back here. The ball is rolling albeit slowly for now. Records are being sent to Penn today and got to go get my records from imaging to send.

I have a question about rehab. Not sure if you would be able to help with it or maybe someone else. Right now I cannot afford rehab. My insurance company in their wisdom say it is a specialist appointment. They want me to pay $40 per visit, 10 weeks at 3 times per week is a LOT of money. It is kinda shameful that something that is there to make us feel better is out of reach for some because of the cost even with insurance. I wanted to know if the rehab that is part of the testing/treatment at Penn is under the umbrella of treatment for transplant etc. or if I would have to pay for it separately. Obviously I would not let the cost of that sway me from not getting treatment if I was chosen to have it. I would suck it up and pay it.

I just bought a new treadmill and it is being delivered tomorrow and I have a professional exercise bike, both bought at goodwill I might add. My old treadmill crapped out the other month so I will finally be able to get back to exercising again at home.
So many questions.
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jmrommes
Contributing Member

1685 Posts

Posted - Aug 08 2017 :  8:20:04 PM  Show Profile  Reply with Quote
FAybees, I'd venture a guess that your question about rehab might be better asked at the TX site. I think it could be part of Medicare/insurance rules around things like TX, or it could be site rules. I'd also think that if you're a good candidate otherwise, they could make arrangements that would help you out. Now reading your post, you may not be on Medicare, but I would think that the TX site would try to work with your insurance company. At least ask and don't take no for an answer until there aren't any alternatives!

Exercise not only lets me live, it enables me to have a life.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Aug 08 2017 :  8:31:37 PM  Show Profile  Reply with Quote
Faybees-- very very very normal feelings this is a life changing experience. This is how my insurance went. Before no rehab paid for with out co-pay. What I did was send my paper work in along with the Pulmonary referral. St.Joes called and wanted a "mini evaluation" went down for one day-Full PFT, blood work up. Several history work up interviews- surgery,any cancer ever, general health questions. And ask if we had any questions. That afternoon had a meeting and they said they would accept me for evaluation. They took all my insurance info and they contacted the insurance co and got approval for complete coverage for the evalution. Insurance even called me and said they would pay for travel and lodging up to X amount. Once I went thru evaluation and St. Joes accepted me they Reconntacted the insurance and got approval for my transplant. Once I got approved for the transplant all I did was ask clinic for a referral for Pre transplant rehab and it was approved-like in a day! All of my Post was covered and I even got them to extend it with no problem. Once they approve your transplant they wany to make sure it is a success! As far as working out at home that all I had before evaluation and I think along with my attitude my physical fit ess helpped get me approved. Work on your TM and Nike both will help you work on arm strength and leg strength eveyother day. Squats and more squats. Yes you can be scared and excited at the same time. When I got my acceptance call a cried like a baby and get tears now just thinking about it. I am excited you are on your way, I am so happy for you. What to look forward to: last Sat. My wife and I hiked 5 miles at 8,000 foot elavation and my 02 held as good as hers. And no more SOB than my wife. You go girl!




Paul-Ut
The Journey Continues.
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faybees
Member

USA
62 Posts

Posted - Aug 09 2017 :  10:24:58 AM  Show Profile  Reply with Quote
Thanks for that Paul, good to know you are there to bounce questions off. I am eligible for Medicare but my husband is still working so I use his insurance. The whole rehab thing is I think a crock, what with them saying it is a specialized appointment. The first time I did rehab (with the same insurance company) it was free, second time I went I was 2 classes in when they said they wanted payment, needless to say I did not go back. Obamacare changed things drastically with our insurance company, they started hiking the fees and prescription costs went up, co-pays went way up etc. My pulmo keeps urging me to go to rehab and I told him only if he will pick up the tab lol.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 09 2017 :  1:02:13 PM  Show Profile  Reply with Quote
faybees, you must get yourself into rehab any way you can! I honestly think that's the main reason I did so well with my LVRS and Paul did so well with his TX. At Duke, I don't think they'll perform either surgery unless you've gone to rehab (preferably theirs) and will continue to go for a period of time after surgery.

****************************************************************
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
804 Posts

Posted - Aug 09 2017 :  8:00:24 PM  Show Profile  Reply with Quote
Faybees- I was NOT in a " formal rehab" until after I was approved for transplant BUT I ran my own rehab her at home: I TM for 1/2 to 1 hour a day ending at 1 hour a day at 4% incline and I think I got up to 2.3 mph. At 6lpm 02. Do your squats (sit to stands) work your way up as far as you can 20-30 if possible. I was working bands, small weights and semi push-ups. What I am trying to say is you can do it on our own till you get approved. You need to push but in the same breath don't over do so you can't move the next day just continue to improve on yesterday and you will be fine. I also beleive in walking over the treadmill I think it works you more. You can do it. So happy you are taking these first steps.

Paul-Ut
The Journey Continues.
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faybees
Member

USA
62 Posts

Posted - Aug 10 2017 :  11:42:10 AM  Show Profile  Reply with Quote
Wow, I just wrote half a book lol and it got wiped out, sheesh.
I do silver sneakers twice a week as well as exercise here at home with online classes. I shall be back up and running on the treadmill again by the weekend (not really running you understand). I do know the value of rehab, I love to exercise, it makes me feel good.

Paul, I wanted to ask if you have any side effects from the anti rejection drugs you have to take. I have heard some horror stories about them doing funky stuff to your body.
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PennyPA
Contributing Member

USA
5808 Posts

Posted - Aug 10 2017 :  1:32:59 PM  Show Profile  Reply with Quote
faybees, are you on Medicare? Medicare paid for all my pre-op rehab and part of post-op rehab. I DID end up having to pay for the last couple of months. I know you say you're on your husband's insurance but between that and Medicare, you should be well covered for rehab. Perhaps this would be a good time to switch from your husband's insurance to Medicare.

****************************************************************
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

jmrommes
Contributing Member

1685 Posts

Posted - Aug 10 2017 :  2:27:53 PM  Show Profile  Reply with Quote
If she's on Medicare, I think Medicare is primary, always, and anything else is secondary....could be wrong, but I think that's the case. If you do have a choice, you need to talk with both the insurance people and Medicare to see how it would work and how it would change things. I think the advantages of having Medicare primary and your husband's insurance secondary would outweigh any alternatives.

Exercise not only lets me live, it enables me to have a life.
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Sokcap48
Senior Member

USA
804 Posts

Posted - Aug 10 2017 :  6:55:52 PM  Show Profile  Reply with Quote
Side affects- yes there are side affects to your COPD drugs. Right now the only adverse side affect I am having is my Creatine level is elavated but the Docs are Monitoring it and right now all I am doing is drinking more water and no contracting drugs. The other one is from prednisone actually two 1-it smoothed out all my facial wrinkles (my wife is jealous) and it has given me one good appetite, between that and lifting weights I have gained about 30 pounds since surgery but the docs are all happy about it.
OH forgot-some of the drugs they gave me for surgery were pretty wild. I heard music for a couple of weeks and the first 24-36 hours right after I hallucinated seen little nats coming out of the walls and graffiti in orange lettering that looked like Chinese writing.
Thanks for asking that question it bought back alot of memories and made me smile!

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Aug 10 2017 7:50:08 PM
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faybees
Member

USA
62 Posts

Posted - Sep 10 2017 :  10:31:25 AM  Show Profile  Reply with Quote
Sorry I have not been on for a bit. Well I am under way. My doc's nurse either did not send my records last month or they lost them at Penn. Not sure which. I called Penn and they said they never received anything so I had them sent again. I spoke to the nurse practitioner in charge of transplant, he was very helpful and put my info into their system. He answered a lot of questions, so now I am just waiting to hear from them.

With regard to my insurance.
My husband is still working. I get Aetna thru his job.
Medicare is my secondary insurance and I only have part A.
I did not see any point in paying for part B because we have Aetna.
I will stay on his insurance for as long as he is working, no point in going the Medicare route and having to find a supplement to go along with it and paying money for it.
I would not stay solely on Medicare on one of their own plans. The ones I have looked at would not suite me. On plan F for instance I would have to use their network doctors. I have not checked them out and maybe my doctors are on their list of providers but I do not want to take that chance right now. I love the docs I have, it took me a long time to find them all and I am not giving them up.
I understand the importance of rehab and am making every effort to do it at home. I have the equipment I need and am using it.
As soon as something happens I will let you know.
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faybees
Member

USA
62 Posts

Posted - Sep 10 2017 :  11:35:40 AM  Show Profile  Reply with Quote
I meant to say that my pulmo has had 12 transplant patients.
One died from a heart attack, one to a stroke, one because he just stopped taking his anti rejection meds. He said the longest lived patient he had was 15 years out from surgery.
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