COPD Support Discussion Boards Active Users: 472 / Visits Today: 5231
Highest Active Users: 472
COPD Support Discussion Boards
Home | Profile | Register | Active Topics | Members | Search | FAQ
Username:
Password:
Save Password
Forgot your Password?

 All Forums
 COPD Forums
 Transplant & LVRS Topics
 LVRS
 New Topic  Reply to Topic
 Printer Friendly
Author  Topic Next Topic  

paulmjo
Member

USA
46 Posts

Posted - Aug 28 2017 :  07:23:08 AM  Show Profile  Reply with Quote
I am thinking of LVRS, my breathing has gone way down since pneumonia, I am ok at rest and slow walk, but was playing golf and walking 2 miles before pneumonia, anyone have thoughts? Am a bit scared.

Sokcap48
Senior Member

USA
812 Posts

Posted - Aug 28 2017 :  1:25:36 PM  Show Profile  Reply with Quote
PennyPA is the LVRS pro around here, I'm sure she will be around shorty to give you her veiw point. It would help if you could tell us a little bit about yourself,age how long you have had Copd,what your FEV1 is do you have a Pulmonary Doctor, have you talked
To them them about it etc. also don't turn a blind eye to lung transplantation. Mine was on 9-30-16 and it has been like being reborn. Had about 3 rough months but not with my lungs, had some stomach/intestinal issues but have them under control and I am living a great 02 free life--walk, hike, do just about anything I want. Feel free to email me if you have question about transplantation, I will answer as best I can. I'm sure Penny will be along shorty. Best of luck on your new journey.

Paul-Ut
The Journey Continues.
Go to Top of Page

PennyPA
Contributing Member

USA
5819 Posts

Posted - Aug 28 2017 :  9:18:23 PM  Show Profile  Reply with Quote
Paulmjo, how long ago was your pneumonia? Sometimes it takes a bit to come back to "normal" after we've had pneumonia. As Paul asked, tell us a bit about yourself. It shows you have 32 posts but it's easier if you just sort of bring us up-to-date, it'd help.

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

paulmjo
Member

USA
46 Posts

Posted - Sep 02 2017 :  09:18:47 AM  Show Profile  Reply with Quote
I am 72, diagnosed 9 yrs ago, pneumonia may 2017 ,, last fev1, 27. Pulmonary doctor referred me to Presbyterian Columbia in NY, they said I needed a place close by to stay for some time, could I afford it? I live in boynton beach Florida. I contacted Duke in Durham they said could not see me for over a month for consultation with pulmonary doctor. I did send records to Duke thoracic surgery, they said would forward to their team and get back to me. Not sure how to proceed.
Go to Top of Page

jmrommes
Contributing Member

1703 Posts

Posted - Sep 02 2017 :  09:25:32 AM  Show Profile  Reply with Quote
You had pneumonia in May. How have you been working to get back to where you were before the pneumonia? Have you been exercising regularly and pushing yourself little by little? Many of us find it takes four to six months of hard work to get back to where we were before a major illness. If you haven't done that, then maybe your interest in LVRS is a little premature. As Penny can tell you, a good program will have you exercising regularly before the surgery and after. If you work at it, you may find that exercise can get you right back to where you were before you became ill.

Exercise not only lets me live, it enables me to have a life.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Sep 02 2017 :  10:06:23 AM  Show Profile  Reply with Quote
Thanks, try to walk dog, breathless in few steps, i always try to push myself, was at gym three days a week, walk 2 miles several times a week, will try harder, want to play golf again and go for walks without doubling over trying to ketch my wind.
Great support site here, thanks for all the input.
Go to Top of Page

PennyPA
Contributing Member

USA
5819 Posts

Posted - Sep 02 2017 :  10:30:15 AM  Show Profile  Reply with Quote
Try harder but also give your body time to heal. It seems to take us with copd twice as long to come back from a serious illness than the average person. Do you have a pulse oximeter? If so, what are your sats when you get sob? If they are above 90, walk for a little longer each day. If you don't have one, make the purchase at your local drug store.

I wholeheartedly recommend Duke for LVRS surgery when you're ready for it although I'm not sure if you're ready for it yet. If you have not already done so, read my LVRS blog below. It might answer any questions you might have..or maybe create some questions that I'll be glad to answer if I can.

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

1703 Posts

Posted - Sep 02 2017 :  5:32:06 PM  Show Profile  Reply with Quote
Paul, you need to push, but you need to go about it in a different way. You need to slow way down, and maybe don't take the dog on your walk, because you're going to be going too slow. Walk as slowly as you can for as long as you can without stopping to catch your breath. Then rest and do it again until you've walked for 30 minutes total. Your goal is to slowly add time to your original walk until you can do 30 minutes without stopping. Then you can add speed, time or distance. The big mistake we make after an illness is to try to do right now what we could do before we got sick and we just make ourselves miserable. So go back to square one and start over, just like you did when you first started to exercise. That's how you build endurance. You don't start off to do 2 miles! Play one or two holes of golf if you can get away with it rather than a whole nine. Work your way back to where you were.

I've done it probably three times over the last 15 years. It works.

Exercise not only lets me live, it enables me to have a life.
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Sep 03 2017 :  09:31:49 AM  Show Profile  Reply with Quote
I was put into a rehab center for 2 weeks after my pneumonia escapade. I spent 3 days in intensive care, then 7 days on a regular ward then the rehab center. It was really good. They had me working every day, it was amazing how out of condition I had become. It was not perfect but it did get me back on my feet, albeit with a rollator to help me. I soon got rid of that with exercise at home but like Jean said, you have to go slow. Do you have a treadmill? Start off at 1mph, I know it is slow but it works, then build up from there. Good luck.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Sep 03 2017 :  10:44:36 AM  Show Profile  Reply with Quote
Thanks everyone for all the help. Will do my best, no one wants surgery, but if it helps I am willing, my pneumonia was not real bad, only in hospital two days, then cleared, but while in Maine now went back to clinic, they thought I still had a little, so on antibiotics again. Not sure they are correct as it seems heart is blocking X-ray where they think there is a little fluid.
Penny will read the blog for sure.
Go to Top of Page

Sokcap48
Senior Member

USA
812 Posts

Posted - Sep 04 2017 :  5:37:46 PM  Show Profile  Reply with Quote
Paul --I found this link for you to look at it is in Florida. Might be a good place for you to at least get some good info on Transplants. Best of wishes, it really changed my life for the BETTER,https://www.tgh.org/services/transplant/lung-transplant here is another
https://ufhealth.org/transplant-center/lung

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Sep 04 2017 6:25:07 PM
Go to Top of Page

RichardFL
Rookie

12 Posts

Posted - Sep 04 2017 :  11:08:14 PM  Show Profile  Reply with Quote
I'm 71 and just got a single lung transplant (May 31) at Tampa General (TGH). Best decision I ever made. I was on oxygen 24/7, could hardly walk across the room without a break. I'm back in Pulmonary Rehab and walking anywhere I can (mostly indoors, till it cools off a bit). Still have a bit to go to be back physically fit, but no regrets and I feel better than I have in years. Went from FEV1 of 13% before the transplant to 55% this morning. It's been improving steadily. The trade-offs are pretty minor considering what I get. I do love clams on the half-shell, sushi, rare beef. Can't have those things anymore. Pretty minor compared to being able to breath again. Of course that's not all there is to it, but look at the link Paul gave you.
Go to Top of Page

Sokcap48
Senior Member

USA
812 Posts

Posted - Sep 05 2017 :  1:32:37 PM  Show Profile  Reply with Quote
RichardFL- Congratulations on your transplant! That is great news. Sounds like you are doing great. Keep it up, that rehab will pay off. I had a double 9-30- 16, it gets better as you go along. You will get stronger and your lung will get stronger, work it and exercise. I am so happy for you! We are both so blessed! My weakness used to be the RARE beef and over easy eggs, but like you said no big deal. The benefits do really out weigh anything you had to give up. Take care and stay in touch! We are in a very special club

Paul-Ut
The Journey Continues.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Sep 06 2017 :  4:24:12 PM  Show Profile  Reply with Quote
Penny, hope you are doing better. I am feeling a bit of runaround with Duke . I contacted and they had Nancy with doctor Hartwig call and tell me I needed to be currently inrolled in pulmonary rehabilitation before i can get an appointment,I have completed rehabilitation and continue to exercise at the gym. Medicare will not pay for more, another hospital told me that should be fine as long as you excercise weekly. Did you have a coordinator at Duke?
Any help how to get to proper person, they send me to thoracic surgery and want to know if i want an appointment, Nancy said call back after you are in rehab 4-6 weeks.
I could go to NY but that is expensive if i have to stay, and Tampa General only does transplants not LVRS, Most i have spoken to think my case is more suitable for LVRS.
HELP
Go to Top of Page

PennyPA
Contributing Member

USA
5819 Posts

Posted - Sep 08 2017 :  1:24:15 PM  Show Profile  Reply with Quote
Paul, did you read the first part of my blog where I mentioned my contacts at Duke? I guess it really doesn't matter now because the surgeon who did my surgery is either no longer there or is head of the Department.

My suggestion would be to get all your records together (catscans, x- rays, pft results, abg, etc.), make copies to keep, and send your records, including record of your rehab, and send it to the thoracic surgery department at Duke. Write a nice background letter advising you would like to be tested and evaluated for LVRS and would be available to complete any further required testing at their facility. Then it's going to be a case of "wait and see". Please, read the first few chapters of my LVRS blog and you'll see what I did to get my foot in the door. It takes a while and there is a lot of waiting. GOOD LUCK!

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

paulmjo
Member

USA
46 Posts

Posted - Sep 09 2017 :  2:05:37 PM  Show Profile  Reply with Quote
Penny, yes been reading your very comprehensive blog, I have an appointment with. Dr Hartwig 10/13, for evaluation and some test, my records were sent, but the lady sceduleing said I needed to be in rehab, turns out I had to complete rehab and still be excersing. My emphysema is pretty homogeneous so not sure. If LVRS would work, will find out. Thanks
Go to Top of Page

PennyPA
Contributing Member

USA
5819 Posts

Posted - Sep 09 2017 :  9:06:09 PM  Show Profile  Reply with Quote
Wait until you see Dr Hardwood before you get too upset about the rehab thing. I was still working and had completed a course of cardiac rehab (only thing that fit my work schedule) a couple of months or so prior to going down to NC. As you can see from reading my blog, Duke has an excellent rehab program at their Center for Living. You can complete any necessary rehab there plus, since you'd be preparing for surgery, Medicare might even cover it.

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

paulmjo
Member

USA
46 Posts

Posted - Sep 21 2017 :  08:50:13 AM  Show Profile  Reply with Quote
Update, going to Duke for lvrs evaluation on 10/13/2017, was told if did not qualify for lvrs am to old for transplant, the max age they accept is 70. Also in touch with Tampa General, they accept transplant patients up to 75 years old, am going to be 73 soon, they do not due lvrs usually. Just have to see what happens.
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Sep 21 2017 :  10:13:25 AM  Show Profile  Reply with Quote
I just had a call from Penn this morning. Next step will be with scheduler to go in for a chat with a pulmo doctor. I am really excited. Hoping they say I might be a candidate and terrified they will say I might be a candidate. I will let you know what happens.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Sep 28 2017 :  07:48:00 AM  Show Profile  Reply with Quote
Good luck at Penn, i am hoping to be a candidate at Duke, afraid with cronic bronchitis and homogeneous copd i may not be. Concerned about transplant with all meds and very susceptible to infections etc,
Sure hope things go well for you and can read an upbeat update from you.
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Sep 28 2017 :  10:15:27 AM  Show Profile  Reply with Quote
I go to Penn on 23rd Oct at 2pm. Looking forward to it. I am ramping up my exercise and so far it is working great. I have lost a couple of pounds this week in the process woo hoo. I hope you manage to get what you need. Keep us all updated as will I.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 11 2017 :  08:13:44 AM  Show Profile  Reply with Quote
Off to Duke 10/12 for testing and evaluation for potential LVRS, hope my bronchitis does not exclude me right away. I am paying to fly from Fort Lauderdale , renting car and two nights hotel, so hope they donít send me away. I sent them CT and Pet scans so they should know something about my condition.
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Oct 11 2017 :  11:56:34 AM  Show Profile  Reply with Quote
Good luck Paul. I hope they can help you. Let us know what happens.
Go to Top of Page

PennyPA
Contributing Member

USA
5819 Posts

Posted - Oct 11 2017 :  3:59:28 PM  Show Profile  Reply with Quote
Paul, there are certain hotels that accept Duke patients and families at reduced rates. Check them out if you haven't already done so. GOOD LUCK!!

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

faybees
Member

USA
83 Posts

Posted - Oct 12 2017 :  3:20:19 PM  Show Profile  Reply with Quote
I believe Penn here in PA has there own set of suites, I am sure I read that somewhere. I am only about 20 mins away from Penn so would not need any accommodation.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 13 2017 :  4:07:20 PM  Show Profile  Reply with Quote
Well all tests completed, not a candidate for surgery emphysema too homogeneous and not bad enough for transplant
Just keep working out and hope get better. Thanks to all for support.
Go to Top of Page

Sokcap48
Senior Member

USA
812 Posts

Posted - Oct 13 2017 :  9:42:27 PM  Show Profile  Reply with Quote
I find it hard to beleive you would qualify for LVRS and not qualify for transplant. What was your latest FEV1? Any way keep fighting it is worth the battle. Say close to the transplant team and check back with them every couple months, don't give up. You still got a few years to qualify for surgery. Good luck my freind.
Best to you.

Paul-Ut
The Journey Continues.

Edited by - Sokcap48 on Oct 13 2017 10:01:04 PM
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Oct 14 2017 :  10:44:53 AM  Show Profile  Reply with Quote
Oh I am so sorry to hear that Paul. Any little thing that might have helped would have been good. I saw my pulmo on Thursday just gone and he said that even having another pair of eyes on me would be good. I am not expecting much, like he said, even a new trial program would be something to try. I am really hoping they will be able to do something to help me. I am exercising like a fiend and feeling great right now (touch wood lol). I cannot afford to go to rehab it would be around $1200 out of pocket, so I have all the equipment here at home and use it daily, makes me feel good when I have done it for the day so I hope that might count for something instead of having to pay for rehab. He told me I was the poster child for COPD, said I do more than people with 70% lung function. I just cannot give in to being sick with a progressive illness.

Do not give up. Keep bugging them, I know I will if they tell me no. Good luck
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 15 2017 :  08:42:39 AM  Show Profile  Reply with Quote
Thanks, my FEV 1 was 23, thoracic surgeon said LVRS was not a good option and transplant was not indicated yet. I will see what Tampa General has to say about transplant. I just want to get where I was 7-8 months ago, where I could walk a couple miles and play golf with friends.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 15 2017 :  09:46:43 AM  Show Profile  Reply with Quote
Coughing seems to bring on SOB, sometimes i feel pretty good then work hard to cough up thick mucus, sometimes takes 45 minuets to clear all, then feels like stuck in throat and more work to clear that, all this works makes my nose run as well, ugh
Go to Top of Page

Sokcap48
Senior Member

USA
812 Posts

Posted - Oct 15 2017 :  9:02:33 PM  Show Profile  Reply with Quote
Paul-I would pursue a transplant I think 23 will get you in the the ball park. I was at 19 when I was approved. It has been like being reborn for me. Best of luck. Prayers your way. If I can be of any help please let me know.

Paul-Ut
The Journey Continues.
Go to Top of Page

faybees
Member

USA
83 Posts

Posted - Oct 16 2017 :  11:24:11 AM  Show Profile  Reply with Quote
I have been sitting at 23% for quite a while now. Even after the catastrophic pneumonia episode in 2015 my numbers did not lower. I thought I was too high of a Fev1 to qualify but my pulmo said no, that I was in the ballpark.

When I first went to see the pulmo I have right now I was in a bad way. I arrived at his office in a wheelchair and felt like I was on my last legs. That was when he first broached the subject of lung transplant. I was offended, I thought I was nowhere ready for that yet but I guess back then I really was. He has not told me what my numbers were back then but he said they were disgustingly low. He worked with me and brought me back and my numbers went up to where they are now and I am maintaining (touch wood).

I am managing just fine right now but could not even fathom what it would be like to be any lower. You have me worried now. Oh well, I shall find out soon I guess. I guess I just do not understand the whole transplant thing. I know exercising helps me but it is not enough to get me back out on the golf course. I am still very restricted in what I want to do. Soon people, it makes my stomach drop just thinking about going in to see them, I am so nervous.
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 17 2017 :  2:18:03 PM  Show Profile  Reply with Quote
Well shot down again, interesting Duke said no to LVRS because too spread out in lungs and not bad enough for transplant, Tampa General just told me no for transplant, i am too old.
Oh well back to weeks of work to see what next.
Thanks all for your help and input, guess just have to live with the fact that nothing will help.
Go to Top of Page

Dave-OH
Administrator

USA
3961 Posts

Posted - Oct 18 2017 :  12:06:06 AM  Show Profile  Reply with Quote
Only a few hospitals will do transplants on older patients.

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

Chat room http://chat.copd-support.com
Mobile chat room for pads and phone Chat room http://chat.copd-support.com/m

My Site: http://lungresources.com
Go to Top of Page

paulmjo
Member

USA
46 Posts

Posted - Oct 18 2017 :  07:16:39 AM  Show Profile  Reply with Quote
thanks Dave, i was given the impression tht Tampa General was one that did transplants up to age 75, they did not specify reason, just too old. i will start investigating where they might accept me in other locations.
Go to Top of Page
   Topic Next Topic  
 New Topic  Reply to Topic
 Printer Friendly
Jump To:
COPD Support Discussion Boards © Copyright COPD-Support, Inc. Go To Top Of Page
Snitz Forums 2000