COPD Support Discussion Boards Active Users: 81 / Visits Today: 759
Highest Active Users: 463
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
 Transplant
 New Topic  Reply to Topic
 Printer Friendly
Previous Page
Author  Topic Next Topic
Page: of 5

PennyPA
Contributing Member

USA
5841 Posts

Posted - Oct 02 2017 :  7:20:14 PM  Show Profile  Reply with Quote
faybees, I don't want to contradict you but Plan F is the same with all insurances and you do NOT have to go with "in-network" doctors. Ditto with Plan G that I have. All Plans F (and C through whatever it is up to now) are the same no matter what insurance company you go with. None of those require you to see "in network" doctors. Are you sure you weren't looking at an Advantage Plan?

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You can’t 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: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

faybees
Member

USA
138 Posts

Posted - Oct 03 2017 :  3:52:44 PM  Show Profile  Reply with Quote
I may have been Penny. I will not be using it yet so have just put the booklet aside. It is all so confusing but I will get the hang of what to get.

I think Chris is going to go to a Retirement seminar at work to get the gist of it all.

Many companies now do not offer pensions anymore or health benefits. Chris works for a very large Aircraft company and he is one of the last ones coming out the door with a pension, we have been very lucky. I would hate to be a youngster nowadays. They do not stand a chance.
Go to Top of Page

PennyPA
Contributing Member

USA
5841 Posts

Posted - Oct 03 2017 :  8:53:43 PM  Show Profile  Reply with Quote
I wholeheartedly agree with that!!

****************************************************************
Do Not Regret Growing Older. It is a Privilege Denied to Many

You can’t 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: You’re still the pilot.

Penny's Lung Volume Reduction Surgery

And Our Travel Blog After LVRS




Go to Top of Page

Sokcap48
Senior Member

USA
866 Posts

Posted - Oct 28 2017 :  4:43:55 PM  Show Profile  Reply with Quote
Hey folks here is a list of some of the many fine transplant centers and their rankings. Enjoy
https://www.beckershospitalreview.com/rankings-and-ratings/these-53-hospitals-have-the-best-organ-transplant-outcomes.html

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

Dave-OH
Administrator

USA
4038 Posts

Posted - Oct 28 2017 :  7:44:54 PM  Show Profile  Reply with Quote
That list is missing some of the top lung transplant hospitals.

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

Sokcap48
Senior Member

USA
866 Posts

Posted - Oct 29 2017 :  5:03:56 PM  Show Profile  Reply with Quote
That Is what I said" this is a list of "some" of the many fine transplant centers" however it is 100% accurate according to SRTR.

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

Sokcap48
Senior Member

USA
866 Posts

Posted - Nov 05 2017 :  9:07:18 PM  Show Profile  Reply with Quote
Here is an interesting video. A couple different studies are going on here in the States. It is about 26 minutes so catch it when you can spend the time. This is the future of all different organ transplantation.
https://youtu.be/FhLX_g3BY9Q

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

faybees
Member

USA
138 Posts

Posted - Nov 07 2017 :  1:39:55 PM  Show Profile  Reply with Quote
I watched that video yesterday, it is amazing what they are trying to do. It will revolutionize transplants. I saw it on the support group fb page for Penn Hospital. A link here.

https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/transplant-institute/lung-transplant/treatments-and-procedures/ex-vivo-lung-perfusion

A number of people have had this done successfully. Seems like I am in the right place.
Go to Top of Page

Sokcap48
Senior Member

USA
866 Posts

Posted - Nov 07 2017 :  4:24:38 PM  Show Profile  Reply with Quote
Faybees-how are you doing? Did that PM I sent ever get to you? If not I will try again. At the present time only a very few lung transplants are being handled this way. I volunteered to be a candidate for " lung in a box " but my match came the old fashioned way. It is still in trial mode at this time as far as I know. But will be the norm someday.

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

faybees
Member

USA
138 Posts

Posted - Nov 08 2017 :  07:44:54 AM  Show Profile  Reply with Quote
I am doing good. Working the treadmill and the bike and weights trying to stay as fit as I can. I am still waiting for my packet from Penn, they have been a bit tardy on getting it out to me. I shall call them today. I have been talking to a guy who was part of Dr Cantu's program. He got ex vivo lungs back in 2012 through a trial. He is doing really good. I never did get the pm. I have been trying to figure out where it would have gone, would it have gone to my email, if so then no I did not get it.

I have joined a Penn fb support page for patients and caregivers and have gleaned a lot of info from them, all very interesting. The thing that is worrying me the most is the after effects of the anti rejection meds. Lots of diabetes from what I can see. Quite scary.
Go to Top of Page

Sokcap48
Senior Member

USA
866 Posts

Posted - Nov 08 2017 :  5:26:59 PM  Show Profile  Reply with Quote
There are risks for sure, but most all can be controlled. My blood sugar went high for awhile. Was checking it 4 times a day and took insulin shots if needed. Then it settled down after about 3 months. You have to weigh the advantages and disadvantages, but most of the time the good out weighs the bad. I shall try and send you my email again. Might check both in box and spam. There is also a national FB lung site, my wife is on it. Proud of you! Stay with the exercises and don't forget those squats.

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

faybees
Member

USA
138 Posts

Posted - Nov 08 2017 :  10:52:08 PM  Show Profile  Reply with Quote
I know there will be side effects from the meds but some of them sound so serious. I am rolling along nicely right now (touch wood), feeling quite fit (boy I am really testing the waters here lol) and would hate to get something done to make me better but will also bring a lot of side effects. One guy who had a transplant done that I know of had it done 5 years ago and has only had 7 months of good health since. Now that is bad, I do not know how I would cope with that. I get pissed if I get a headache lol. I guess we are all different. Doing the squats too and if I felt any healthier I would be running marathons.
Go to Top of Page

faybees
Member

USA
138 Posts

Posted - Nov 30 2017 :  3:00:35 PM  Show Profile  Reply with Quote
I go for my transplant evaluations on Monday thru Thursday of next week. Lots to fit in and it is going to be exhausting but hey ho.

fay beech
Go to Top of Page

Sokcap48
Senior Member

USA
866 Posts

Posted - Nov 30 2017 :  5:12:35 PM  Show Profile  Reply with Quote
Faybees —- the gentleman you mentioned is an exception to the rule, however there are risks to any major surgery and this is major for sure :)! Am sooo glad to hear you are getting to go through evaluation! Yes it can be a trying time, but just go with the flow, your clinic people are good at what they do and are oh so helpful and kind. If you need to bend an ear or yell or have a question I am more than willing to try and help you. GOD Bless you and Best Wishes.
You are taking one great step forward to help yourself! So happy for you! !!

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

faybees
Member

USA
138 Posts

Posted - Dec 01 2017 :  09:49:19 AM  Show Profile  Reply with Quote
Thanks Paul, I have many questions and my first appointment on Monday morning is with the surgeon so he is going to be busy splaining things to me lol.

fay beech
Go to Top of Page

faybees
Member

USA
138 Posts

Posted - Dec 04 2017 :  10:10:24 PM  Show Profile  Reply with Quote
First day of my week long evaluation for transplant. Long day, lots of information. Some of it quite brutal and hard to hear. Tomorrow I have barium/xray/ct scan and lots more information.

fay beech
Go to Top of Page

Sokcap48
Senior Member

USA
866 Posts

Posted - Dec 06 2017 :  7:21:55 PM  Show Profile  Reply with Quote
Fay—yes every day will be long and trying. Lean on your caregiver and the people at the clinic. Lots of info, but I found none that I would call brutal, what was hard for you to hear? If I can help shoot me an email. Take it ONE day at a time and you will be fine! I am so happy for you you are taking the first steps of a long and beautiful journey. Once again lean on me if I can help, I am more than happy to.
Paul

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

faybees
Member

USA
138 Posts

Posted - Dec 08 2017 :  11:57:32 AM  Show Profile  Reply with Quote
It was brutal because he held nothing back, gave me all the worst scenarios. The hardest thing to hear was the side effects of the anti rejection drugs. My goodness, diabetes (from the pred I guess), tremors, kidney stress to the point of maybe transplant. High bp, low white or red blood cells, low platelets, nausea, vomiting, osteoporosis, then you have to take meds to counteract all of that and they have side effects too. I said to the transplant pharmacist "these are the worst case scenarios right"?. She said no, you will probably get all of those. I know some of them wear off in time but some of them hang around seemingly for ever. Yes I know that I will be doing this transplant for a better quality of life, I have heard all of that all week long from every department I have gone through, of which there were many. However, I cannot still help thinking 'should I or shouldn't I'. The answer will come to me, I just hope I make the right decision. Paul, tell me again how great your life is, but I also want to know the down side too.

Edited by - faybees on Dec 11 2017 12:38:32 PM
Go to Top of Page

Dave-OH
Administrator

USA
4038 Posts

Posted - Dec 08 2017 :  12:44:01 PM  Show Profile  Reply with Quote
I went through the evaluation many years ago, and the counseling and warnings are a big part of it. It is all about consent. My local doctor said it is about trading one set of problems for another before I started the problem.

Fortunately, instead of declining at the rate I had, after a long year of IV antibiotics and hospitalizations, I returned to baseline, and have held steady in a range.

From the time I started, until the time I was removed from the list, the rules changed. At the time, my doctor was concerned as it was time on the list, and it took at least 5 years to get a transplant. Now it is need and ability to survive that are the primary considerations.

This was about 15 years ago, and given the median survival at the time, I am happy that I was able to put it off.

Surviving a transplant is a family affair. There is an ongoing requirement for support, not just for the first year, but for years to come. Sick grandkids and other relatives could be catastrophic for a transplant recipient on anti-rejection drugs. It is bad enough before transplant, but after can be critical.

The decision is not easy to make.

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

Sokcap48
Senior Member

USA
866 Posts

Posted - Dec 10 2017 :  7:05:42 PM  Show Profile  Reply with Quote
Yes there is good and bad and only you can make that decision for yourself. For me the benefits put weighted the risks! Yes there are stresses on other parts and systems of your body but all are controlable. The quality of life I what has made the difference for me. Just got back home from a four day hiking trip something only could have dreamed of a year and half ago. As far as affecting your family Dave is correct, you and they must be careful about flu and colds etc. but so does people with copd, granted TX’d people have to be even more diligent. My family supports me 110%—if any of the grandkids or Great :) grandkids have a cold or are not feeling well they know to stay away. But that is a small trade off for us but I and they want me to be active happy and that is better for all of us than me being on 02 and going down hill. Keep me in the loop, again so happy for you.

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

faybees
Member

USA
138 Posts

Posted - Dec 11 2017 :  09:13:32 AM  Show Profile  Reply with Quote
The surgeon I spoke to, Edward Cantu told me in great detail what it would be like, but of course it is different for each person. The time waiting for a transplant up here on the east coast seems to be between 6 months to 1 year. A girl I am in contact with had her evaluation a week before me and she moved up here from Florida yesterday and is staying in the transplant house. He told us that there is a wealth of donors here on the east coast. Many of them are just young people aged between 13 and 18. Trying drugs for the first time. Taking their grandmoms oxy and dying the first time they use it. How sad. One guy got listed on 30th Nov and had his transplant 2 days later and is leaving hospital tomorrow. It does not seem to be like the old days when you waited years for a transplant. Then this doctor too is doing 'lung in a box' where he takes lungs that would ordinarily be thrown away. he puts them in an incubator type box and keeps them alive. They are flushed with antibiotics and fluids and are being used for transplant with great success. One of his first patients from 12 years ago is still going strong. He is only one surgery away from the trial being finished. Lots of new innovations out there which is way cool.

fay beech
Go to Top of Page

Dave-OH
Administrator

USA
4038 Posts

Posted - Dec 11 2017 :  1:25:43 PM  Show Profile  Reply with Quote
Under the old system there was a 5 year wait.

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

Sokcap48
Senior Member

USA
866 Posts

Posted - Dec 11 2017 :  7:24:48 PM  Show Profile  Reply with Quote
That would put a whole new meaning to “waiting for THE call”. I got my first dry run 5 days after listing and TX’d 24 days after listing. I sure feel blessed.

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

faybees
Member

USA
138 Posts

Posted - Dec 12 2017 :  12:52:58 PM  Show Profile  Reply with Quote
I read the other day where they are transplanting kidneys from people who have HepC. Now that there is a cure, they are using the diseased kidneys and treating the patient post transplant. How cool is that?

fay beech
Go to Top of Page
Page: of 5  Topic Next Topic  
Previous Page
 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