WDW with end stage COPD - long

mtomlin66

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Dec 28, 2007
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172
I grew up going to WDW, taking numerous trips since my first as a child in 1974. In 2001 my entire family- parents, siblings, spouses and children (all 22 of us!) traveled there together as a group. We all agreed to return enmasse at some time in the future but have not done so yet.

My father has emphsyema and until this year had fought a valiant battle against it progressing. Unfortunately, this along with type 2 diabetes are taking their toll and there has been a rapid decline in his overall health and especially his mobility. At this point, the doctors have told us that he has exhausted all treatment options and is in the end stage. His one regret is that he did not get to return to WDW with all of us.

We are looking into if there is any possibility of being able to make this last visit. Air travel is out - he needs too high of an oxygen LPM level, but we can get him there by van or auto train if necessary. We are trying to determine if there is a way to supply a high enough level of oxygen while in the parks, since the portable oxygen concentrators do not seem to have settings that go high enough for if /when he has to move. Obviously he would in a wheelchair at all times and we would avoid any rides or attractions that required him to transfer, since any type of physical movement causes shortness of breath.

Right now we are absolutely devastated that there has been such a drastic decline so quickly and that the doctors have basically told us that any plans that we are making should be for the near future. Obviously, too, we are beating ourselves up for not having made our family follow up trip a priority before now.

My parents gave my brothers, sisters and I such wonderful childhood memories and so many are tied to our road trips to WDW. If we can make this trip happen for my dad, it will be one small way that we can continue to build these beautiful memories to last through all of our lifetimes.

If you made it this far, thank you for reading my story. I'm truly at a loss of how to go about looking into and planning this trip, but am determined to do whatever I can to make it happen if it is possible. I would appreciate any information, tips, advice that you can share.
 
I would suggest you first try talking to his supplier of O2 at home. They may well be able to point you towards another supplier in the Orlando area, who could deliver the tanks to your hotel. Hopefully his insuarance would cover the cost of the o2 out there, but you'd have to check this with them before you go. I'm guessing he already has a wheelchair that is capable of carrying oxygen canisters?

There are a fair number of attractions that he will be able to do from his chair. All of the shows are accessible without transfer, and most of the more gentle rides have wheelchair-accessible cars. You can find pictures of all the ride vehicles in the All Ears photo gallery, and more in Sue's photo collection, which is linked to in the FAQ thread.

I have to get back to work now, but hopefully someone with personal experience of travelling with O2 will come along soon! Good luck and have a truly magical trip :tinker: :hug:
 
Ironically, I just got an email about travel with COPD.
Here's a link to the article from Everyday Health.com

It really is good and covers all the points I would have suggested (plus some other things that I would not have thought about).

In most cases, you will be able to work with his oxygen supplier to get supplies and also help with billing.
 
Thank you for all of the information and support. Unfortunately, it looks like we waited too long. My father is beginning hospice care. We'll still treasure the time together, but hope that others will learn from our mistake and not delay following through on any important plans.
 
Thank you for all of the information and support. Unfortunately, it looks like we waited too long. My father is beginning hospice care. We'll still treasure the time together, but hope that others will learn from our mistake and not delay following through on any important plans.
Sorry to hear about your dad.:hug:
I know how hard it was when my dad went on hospice care. Hoping you can make some happy memories to help you thru the difficult times ahead.:hug:
 
I understand your desire to take your father. I'm sorry to hear that he is starting hospic care. My grandmother is dealing with end of term COPD as well as heart issues and numerous other issues. We started hosspis about 1.5 months ago and we are just praying that she makes it thru Christmas and through when her grandson, my cousin, graduates from Basic Training to come see her.
 
I'm so sorry for your dad and family.:hug:
 
I am so sorry you are not able to make the trip. I know how hard this time is for you. We had to walk this road with my Dad too. Enjoy the time you have left with each other. My prayers are with you and your family. :hug:
 
Thank you to all who offered kind words and support.

My father lost his battle last week. Tonight we would have attended my parents 50th wedding anniversary party, instead we spent the evening as a family at my parents house. We are at peace knowing that he is no longer struggling to breath, but are hurting for all of us who he left behind.
 
:hug:
thank for sharing the rest of the story.
It is hard to lose someone you love, but when my dad died, it was a comfort to know that his suffering was over.

Sending thoughts and prayers of peace to you and yor whole family.
 
I was just about to respond to your question when I read further down and discovered that you Dad had past. I am so sorry for your lost, may you find comfort in knowing that the is in peace. COPD is hard to live with. I am a living testament to it, I am 30 yo and diagnosed with COPD as well as pulmonary hypertension. I hope that you are doing well, :hug:
 
I am so sorry to read about your dad.

I do want to say to the ppl that provided infomation thank you very much. My mom was just diagnosed with end stage COPD and this gave me a lot of infomation about traveling with my mom and being able to make her have the most of the time she has left.
 
I just read your original post and hoped that you found a way to get him back there. I didnt realize the date of it. I am sorry for you loss. I hope that someday you will get back to WDW with the rest of your family and celebrate your father's life.
 
I am so sorry to read about your dad.

I do want to say to the ppl that provided infomation thank you very much. My mom was just diagnosed with end stage COPD and this gave me a lot of infomation about traveling with my mom and being able to make her have the most of the time she has left.

I was just about to respond to your question when I read further down and discovered that you Dad had past. I am so sorry for your lost, may you find comfort in knowing that the is in peace. COPD is hard to live with. I am a living testament to it, I am 30 yo and diagnosed with COPD as well as pulmonary hypertension. I hope that you are doing well, :hug:

I just read your original post and hoped that you found a way to get him back there. I didnt realize the date of it. I am sorry for you loss. I hope that someday you will get back to WDW with the rest of your family and celebrate your father's life.


To all of you, thank you so much for your kind words. It has been an emotional roller coaster to come to terms with our loss. Although we knew dad was terminal, it happened much sooner than anyone expected. Even his primary care doctor and pulmunologist were shocked when they learned of his death. However, we are at peace knowing we honored his wishes. That night Dad went to sleep in his own bed and stopped breathing.:angel: My mom loved him enough to let him go, though it was the hardest thing she will ever have to do. We miss him so much, but cherish all of the wonderful years we had together.

I know that our entire family will return to Disney one day soon, and it will be bitter sweet for all of us. But, I know dad will be with us in spirit and we will celebrate all of the wonderful memories we have.

Thank you, again for taking the time to respond. It has been the support and kindness that people have shown that has helped us through this difficult time.

CM8: Please continue to take good care of yourself. I am so sorry that you are dealing with this disease at such a young age. My father was not diagnosed until much older. He responded quite well to the medications that control the symptoms for a very long time. It was really only the last 6 months of his life that he had a significant deterioration in his condition. I know that he thought that Pulmonary Rehab helped him to learn to manage his symptoms and maximize his lung capacity (or function?). I will keep you in my prayers.

all4nyy: I hope that you are able to build beautiful memories with your mom! As I stated above, my father did quite well managing his symptoms for many years and we lulled ourselves into a false sense of security that it would continue indefinitely. I will check back periodically and hope to hear updates about your travels!!!!
 
Thank you for all of the information and support. Unfortunately, it looks like we waited too long. My father is beginning hospice care. We'll still treasure the time together, but hope that others will learn from our mistake and not delay following through on any important plans.

I'm so sorry. We always hoped to do the same thing, and it will never happen. My dad died in 93. My only brother passed away 2 years ago, and my mother has Emphysema and has just been diagnosed with Alzheimer's. My children don't know what having extended family means because we really have none. I wish we'd gotten to take another trip altogether. Now, I'm (in essence) the only one of my birth family left who can go.

Prayers to you all.
 
To all of you, thank you so much for your kind words. It has been an emotional roller coaster to come to terms with our loss. Although we knew dad was terminal, it happened much sooner than anyone expected. Even his primary care doctor and pulmunologist were shocked when they learned of his death. However, we are at peace knowing we honored his wishes. That night Dad went to sleep in his own bed and stopped breathing.:angel: My mom loved him enough to let him go, though it was the hardest thing she will ever have to do. We miss him so much, but cherish all of the wonderful years we had together.

I know that our entire family will return to Disney one day soon, and it will be bitter sweet for all of us. But, I know dad will be with us in spirit and we will celebrate all of the wonderful memories we have.

Thank you, again for taking the time to respond. It has been the support and kindness that people have shown that has helped us through this difficult time.

CM8: Please continue to take good care of yourself. I am so sorry that you are dealing with this disease at such a young age. My father was not diagnosed until much older. He responded quite well to the medications that control the symptoms for a very long time. It was really only the last 6 months of his life that he had a significant deterioration in his condition. I know that he thought that Pulmonary Rehab helped him to learn to manage his symptoms and maximize his lung capacity (or function?). I will keep you in my prayers.

all4nyy: I hope that you are able to build beautiful memories with your mom! As I stated above, my father did quite well managing his symptoms for many years and we lulled ourselves into a false sense of security that it would continue indefinitely. I will check back periodically and hope to hear updates about your travels!!!!


:hug:, thank you very much........ :flower3:
 
all4nyy: I hope that you are able to build beautiful memories with your mom! As I stated above, my father did quite well managing his symptoms for many years and we lulled ourselves into a false sense of security that it would continue indefinitely. I will check back periodically and hope to hear updates about your travels!!!!

thank you for your support. I hope all the best for you and your family. I will update you on travels. We live in Las Vegas, NV and will proberly start with short road trips I hope to take mom to Disneyland and Seaworld soon, to see the dolphins, which she loves. Anything you can share about traveling/living would be great.
 



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