Janette Posted July 25, 2008 Share Posted July 25, 2008 ok today is one of those days where I think I am just going to fall apart. We have planned a trip for end of next week to fly to Vancouver and do the train thru the Rockies, will be gone for 8 days. Now I'm scared to go. He seems to be getting worse each day, shortness of breath, the cough, can't sleep on his right side, appetite is dwindling. I asked him this morning should we just cancel and stay home, but he wants this holiday more than anything and says no we're going. I have asked him to please call his doc, but hasn't I know. Good friend of mine says just go and enjoy our time and have our trip of a lifetime. and of course I'm sure I upset him because of course I was upset, soo hard to watch this happen. He says I have to be strong thru this. It's so hard but I am trying. Quote Link to comment Share on other sites More sharing options...
coni Posted July 25, 2008 Share Posted July 25, 2008 I'm sorry your husband isn't feeling well, but if he says "go" then enjoy your time. My hubsand gets bad but still will jump on his Harley and ride..I get SO worried about him but I can't hold him down, it's his fun in life. and I really think he "lives to ride"... Hang in there and if ya need a buddy I'm here. Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted July 25, 2008 Share Posted July 25, 2008 I would get the ok from his doctor first, before leaving on a trip. You can ask for copies of his latest xrays and progress notes to take with you. You can travel with oxygen, too. They make small tanks that last for a shorter time, but are portable with a backpack. You have to check with the airline about their regulations, though. If you can't take it on board, you can make arrangements to have it at your destination. It is hard to accept needing oxygen, but if he does need it, it may alleviate the strain of breathing and help him enjoyythe trip better. Best wishes! Karen Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 25, 2008 Share Posted July 25, 2008 Hi Janette. Hang in there. If he wants to go then I am sure it will all work out. It is so hard not to worry though. I hope you go and have a wonderful trip of a lifetime with lots of good memories. Enjoy every minute. Sandra Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 25, 2008 Share Posted July 25, 2008 Karen makes a good point. Taking some precautions may be the perfect compromise. Getting the records shouldn't be any problem and you can tell your husband that arranging for the oxygen is just to make you feel better. Good luck and hope you can relax and have fun. Judy in Key West Quote Link to comment Share on other sites More sharing options...
dchurchi Posted July 26, 2008 Share Posted July 26, 2008 If he wants to go that much then I say go. Alan and I took trips together for as long as we could. I just made sure to travel with as much information as I could. Usually the written reports of Alan's most recent scans, list of all medications, all his dr's phone numbers, and a copy of Alan's advanced directive. Go have fun and enjoy yourselves. Alan and I took an amazing trip to New York City right after treatments for brain mets. Seeing the joy in Alan's face made all the worry go away. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 28, 2008 Share Posted July 28, 2008 Janette: I've been on the Canadian Rockies train ride, and if your husband is experiencing SOB, he could easily end up having to leave train at high altitude due to need for supplemental oxygen. This doesn't mean I think you shouldn't make the trip... just the opposite, in fact, but if he wants to make the whole trip instead of just part of it, then taking precautions is the only thing that makes sense. I'm about to take off myself on a trip that will include air, land and sea travel, and am going with a portable oxygen concentrator (POC) that is approved by the TSA and most U.S. airlines (Respironics Evergo), which I will be able to take and use through airports, on airplane and on cruise ship. My doctor helped complete and sign all forms for both airline and cruise ship (and these cover the TSA), as well as preparing a general summary of my diagnoses and current meds (both prescription and non-prescription) so that I would be able to take meds as carry-ons with no limitations as to size (such as are normal with the TSA). My doctor even prescribed some extra "emergency" meds so that if I get infections, fevers, have pain, etc., I'll already have the meds on me so that I don't have to race off to an emergency room! If you think it would help if you or your husband talked to me personally about this, just PM me and we'll exchange phone numbers. Again, I'm all for him going (I dare anyone to try to stop ME! ), but strongly recommend he travel smart! Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin Quote Link to comment Share on other sites More sharing options...
Dave Posted July 28, 2008 Share Posted July 28, 2008 There are certian critera that may have to be met in order to get the type of concentrator Carole is talking about.Traveling with o2 can be a challenge....most airlines do not have o2 available for patient use...you can get it for a fee usually..but its not cheap....also trying to arrange o2 at multiple destinations is nearly impossible primarly because of ins. regulations. The portable concertrator is a great item.....but will not work for everyone...again there are criteria a patient may have to meet in order to get the use of one...they work on a pulse system...meaning you have to be able to inhale deep enough to activate it or it wont work..also most suppliers require a patient to mantain a certian o2 level in blood before they will allow it...also most of them only work up to 4 liters.Its do able...but may not be easy. This is what I used to do for a living so unless a lot has changed most should still be true.The key is as Carole has done: getting the doc to work for you not against you. Paperwork ..paperwork...o2 suppliers love paperwork..I know that to be true. good luck..let us know how it goes. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 28, 2008 Share Posted July 28, 2008 Dave: ...The key is as Carole has done: getting the doc to work for you not against you... Everything you wrote is right on, Dave, especially getting the doc to work for you (She "maxed" me on the paperwork at pulse 4, for example, even though I'm currently down to 1-2 liters--just in case). When I wrote, I was under impression that Janette's husband wasn't on O2, since they were flying to catch train, and was mainly responding because of her comment that he was experiencing SOB (which I interpreted to mean that he could have a real O2 deficiency problem in the Canadian Rockies!). If he's not on O2 already, his doc should be able to get him approval easily. If he is on O2 already, it could get tricky depending on how many liters (pulse 4 being the max). It's also true that the portable oxygen concentrator (POC) rentals aren't cheap, but I figured if they were doing the "plane/train thing" (like me doing the "plane/ship thing"), that they were already in the mode of pouring money into an endless hole. Anyway, as you pointed out, Dave, there's lots to think about, followed by (if feasible), lots to do. Hope it works out well for you both, Janette, and thanks for filling in the blanks, Dave! Night all! Affectionately, Carole Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 28, 2008 Share Posted July 28, 2008 Janette- If he wants to go - then go. I agree with the others to be prepared. I have always kept a bible with all my doc visits, blood work, scans, etc in it and when we went to Arizona last summer I brought it just in case I got sick and had to go to the ER. Now, on the oxygen thing - I am not on oxygen but my friends mom is. When they went to Florida last year, they had to make all kinds of arrangements with the airline in advance. Since 9/11, the airlines (or at least the one they flew on) would not allow them to bring their tank on board (had to be stowed) and they had to use airline-supplied oxygen. Guess thats for safety purposes in case it really isn't oxygen!! So you might want to contact the airlines in advance. Hope, if you decide to go, that you have a wonderful trip and make memories!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 28, 2008 Share Posted July 28, 2008 Hi again, everyone. Patti: If he qualifies for it, the neat thing about the portable oxygen concentrator (POC) is that you can take it with you everywhere, including at airport, on plane, etc. without having to use the airline's facilities or make ground arrangements. (airlines wanted $200 per leg last year if I flew for providing oxygen--in this case, we're providing our own, my cost is $20 a day and I'll have it whole trip, not just on plane). This is relatively new device and the TSA (Transportation Security Agency) has approved it, and now so have most airlines (see Dave's email for more info). Carole Some situations are so bad that to remain sane is insane.--Frederich Nietzsche Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted July 29, 2008 Share Posted July 29, 2008 Hi Janette, Just before Hank was diagnosed this passed February we had scheduled a cruise. He had been sick with a cold that would'nt go away for weeks. I suggested that we cancel the trip. He said no, we're going. I'm thankful that we did. It was to be our last trip together, and I'm glad we did'nt miss it. I do agree with the precautions others are suggesting, but by all means, GO! ENJOY! All the best, Gail Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 29, 2008 Share Posted July 29, 2008 Hi, everyone. I would like to take this opportunity to publicly acknowledge my great appreciation to Gail for having advised me about the existence of the Portable Oxygen Concentrators (POC). I had not flown since my dx because of the hassle of trying to arrange for oxygen at airports (including layovers) and on airplanes, not to mention upon arrival at my destination. Instead, the two "memory trips" I took last year were road trips to California, each taking three days each way. Following each of those trips I suffered sacral fractures due to severe Prednisone-induced osteoporosis, which basicially meant that I not only couldn't fly, but I also couldn't drive/ride. Then, after reading one of my postings about my travel woes, despite the fact that she and Hank were going through pure hell, Gail stopped and took the time to write me in detail (includiing links) about the POCs. If not for Gail, I would not be taking my wonderful ultimate air/land/sea memory trip to San Diego and Mexico next week with my mother and daughter. Thanks, Gail, from the bottom of my heart. Affectionately, Carole It matters not how a man dies but how he lives. The act of dying is not of importance, it lasts so short a time. --Samuel Johnson Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted July 29, 2008 Share Posted July 29, 2008 you're welcome Carole. Love ya, Gail Quote Link to comment Share on other sites More sharing options...
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