dieselmama

10 hours ago, MamaFej said:

 

I imagine it has imporved in ten years, but Internet coverage was spotty or non-existant in many RV parks, so your hubby will want to confirm that he'd have reliable internet with good speed before trying to work.

We figured when we are ready for the trip (if not sooner!) we we would get ourselves some kind of satellite internet to keep us going. When we travel now we often end up using our phones as hot spots as needed, but that has the potential to be a bit pricey if we do that too often! He uses a satellite GPS for his ultra runs so I can keep track of him and he can send brief messages now, seems to work nicely when he is out in “no internet or cell phone available” country so hopefully he can find some kind of satellite system that would work to keep him in touch for work too.  
 

ideally we will rent a car up there rather than tow, but we have a couple of years to figure it all out. Who knows, by then maybe we will have a vehicle that can be towed and be up to towing! For now if we need a second vehicle we drive separately. We live in Idaho, so it’s a little closer for us to drive to Alaska than for some! LOL! We will have to have our son and I fly home once a month for a couple of days to “check in” in order to maintain his insurance coverage (medicaid). He can’t remain out of state more than 30 days at a time without losing it.  Frustrating, but there is now way just 2 weeks is enough times to fully explore with a week drive each way! 
 

Well hi there! Great topic! We just bought our first RV a year ago as the isolation was getting to be too much… (like a lot of us!) Our young adult son is extremely vulnerable, but we are used to doing a lot of travel when it’s not cold/flu season, so we needed something we could use to play, and still keep him safe.  Even before we picked up our Redhawk (class c, 2020) we had traveled to 45 states. Now to hit them again with The Armadillo (that’s what he named it 😉).  Hubby is out with it this weekend as he was attempting an ultra run in the mountains, much nicer than his usual tent to sleep in afterwards!   We have talked about spending the summer in Alaska with it in a couple of years, hubby works from home and can work anywhere, so he could work there, and with a car the boy and I can do some exploring… (he loves wildlife , critters of all kinds, and we fell in love with the interior on the one week land tour on our cruise/land tour a few years ago… need more time!!).  
 

Do you know what liter flow she needs with the continuous flow concentrator? My son uses the Simply Go Concentrator that does both continuous AND pulse dose, it can go up to 2 liters on continuous and can go to a higher level of 6 for the pulse dose. (which of course makes the battery last less time the higher the # on the pulse, as well as the higher level of continuous).

What WE have found for my son is that at our home elevation of 2800 with a dry air, less humidity, is that he does better with less oxygen. He seems to need more in higher humidity type climates, gets tired easier when it is warmer rather than cooler. Not everyone is like that, some are in fact that opposite and do better in warmer more humid climates. (he is missing most of one lung and the other is like someone with emphysema and has pulmonary hypertension). At sea level he typically doesnt need oxygen unless he is ill or it is very humid thankfully. At our elevation he needs 1 liter at night, and 0.5 when exerting himself (walking a lot... gentle walking with lots of breaks like at the zoo he is fine... during the day we think he can do pulse, just now testing it out, at night he needs continuous as he is on AVAPS/Bipap).

I would highly recommend talking with the pulmonologist in charge or the respiratory therapy company to find a good concentrator that fulfills her needs. There are lots of options available with different flows , different weights and portabilities. The Simply Go is nice because it is the size of an igloo lunch box and fits in my son's basket for his scooter when we need it (like for Disney!), it also has a good wheeled cart that is easy to use too. But if it doesnt have the flow she needs, especially if she might be flying, then you may need something different. A doctor can order a flight simulation test to see what liter flow she would need if she were going to fly, and that would be very beneficial to know ahead of time so you know how many batteries and what kind to get.

hope that helps just a little!!!

Since no one has posted here for a while, I thought I would post my question. Some of my questions have been answered. But I want to verify some info.

 

Is the Inogen G3 still available? This provides continuous flow? And we just need to bring batteries?

 

Here is my original post:

 

I would love to take my mom on a cruise, and since she doesn’t want to fly, we would probably depart from Charleston, SC port.

 

She has COPD and is on oxygen 24/7. At home, she uses a constant flow machine. When we run errands, she takes a portable tank and keeps it on 2. She uses a wheelchair, but if she gets out of breath, she changes the setting to constant flow for a short time before moving it back to the 2 setting. On the 2 setting, her tank will last for hours.

 

She has tried an oxygen concentrator, but it only gives a puff of air when she breathes, and she can’t handle that. She needs constant flow.

 

My questions for those of you who may have COPD or who have traveled with others using oxygen are 1) if she travels to a much warmer climate, will she find it harder to breathe? And 2) how hard is it to travel with oxygen tanks (assuming that’s allowed) and finding a rental source while on the trip?

 

Any other COPD tips for travelers is much appreciated!

Glad to help. The biggest problem right now is that TPN is only stable for 7 days at a time (at least in the US per FDA regulations) whereas in the past it was stable for 2 weeks. We never had issues with it before (my son was on it for 19 years and is now strictly tube fed) so you will need to keep your cruising to shorter term ventures until that changes, or else arrange somehow for shipments to be delivered to the ship at various ports, not something I personally would be comfortable with. We are shipping his tube feeds ahead to our Alaska hotels before we leave so we know it is there and don’t have to haul it with us, but that is the most I would do. Welcome to the TPN world.. I am sorry you need to be here, but our saying is... fed is best, whether tube, IV, or by mouth. I have friends who go hang gliding and horseback riding while hooked up... enjoy the ride!!!

It has been several years, but when we traveled with TPN on DCL they stored it for us and we just had to pick it up at the main desk each day as needed so it was in their temperature controlled fridge. The very first time we cruised was actually with our home pharmacy in 2007, they had arranged a conference on DCL and there were at least 50-60 home TPNers cruising. Disney kept all of our TPN in individual boxes with our name and staterooms on the box, delivered our boxes to us each day by 4 pm so we could remove the supplies we needed, and picked them back up after dinner. So well organized, it was awesome!! That trip is what convinced us we could cruise with our special needs son, and travel wherever and whenever we wanted... ended up doing a 4 month cross country trip a few years later.

Good point....unfortunately' date=' my favs feature a mouse. I'll have to look thru the stash. I mean, it wasn't like I was going to wear shirts from DCL cruises, but the less themed ones do tend to be my "all the time comfy" shirts. On the other hand, shirts that feature one of my hobbies tend to draw favorable comments.[/quote']

 

I think as long as you don’t wear your “ears” you should be ok 😊 unless people don’t have a sense of humor that is! Surely we can have hobbies apart from a Princess cruising!

Guess I shouldn't take my Disney themed t-shirts on my Princess cruise....:rolleyes: They might offend someone.

Maybe if you make sure they are also “princesses”? ;p (Cinderella, sleeping beauty, etc...)

While we havnt traveled with them yet, we have been researching African safari's as well. My son is medically complex and electrically dependent (bipap dependent, tube fed, O2 at night, etc) and the best company I have found is African Dream Safari. They even have said that for a wheelchair dependent client they literally carried the client up the stairs and took the chair up separately so it would be there when they got upstairs (when staying at a lodge that happened to have stairs). It is more pricey than many of the companies, but it is a private safari company (Tanzania/Serengeti) so you would go exactly where you want to go. From reading the MANY trip reports they had on their blog I was impressed with the safety and care they take with their clients. I dont know if that one would work for you or not, but it is the one we are planning on going with once I save up my $$. Just thought I would pass it on in case you are interested.

No, we're not. I've been in the operating room for nearly 30 years. If we had to change masks every 20 minutes, we'd never get anything done. And floor/unit/ER nurses don't change theirs in the middle of a procedure either. Can you imagine? "sorry we're in the middle of this crashing trauma patient, but it's been 20 minutes and I am required to change my mask."

 

I have a chronic noncontagious/noninfectious lung condition. I cough all the time. So does my FIL with severe COPD. Just because you cough doesn't mean you're contagious.

Doesnt mean they do... but the mask "should" be changed when it gets wet because it loses it protective properties. Look it up. And I understand all to well (having a child who has had 54 surgeries) not stopping in the middle of a surgery to change your gear, but if your mask or hands are contaminated, you betcha I don't want you contaminating him with your coughing germs! Even if you aren contagious, you still have germs coming out of your mouth when you cough. The last thing his crappy lungs need is something else to have to battle. Maybe we are a little over the top, but my son is still alive thanks to our care, and I wouldnt have it any other way. He already uses AVAPS/Bipap and O2 at night and days when he is under the weather, and has for most of his life, trying to avoid a tracheostomy and ventilator.

I am honestly not trying to pick on you, or anyone else. I am simply trying to help those out there to try to understand why there are "some" of us out here who do freak a bit when we hear the coughing and hacking of people who are not contagious. For us, it is a huge big deal for our loved family members, and could potentially put them in the hospital or ICU or worse if they get sick. And our families should be able to take vacations too... we are all about quality of life for our family, he was never supposed to live this long (21 in January), and we want him to have as many experiences as he can WHILE he can. We have no way of knowing that your coughing and hacking aren't going to make our family member sick... not when there are so many out there who DO come on cruises or go on vacation who are thoughtless about others and show up sick because their needs come first. I would never take my son (or myself) out if he were going to make someone else sick... wouldnt happen. Because that is the kind of people we are. I know we can't expect the same from others, so we have to be vigilant for his safety and well being.

Blessings to you all on your cruising adventures, I am bowing out from this discussion.

tobyt #35 and dieselmama #34 - The level of self-protection is whatever makes you feel comfortable without impinging upon your fellow cruisers. Stress or general worry isn't going to help you feel well and feeling '1 degree under' during times of contagion will not help anybody. And, to the casual observer, it is probably not apparent that the passenger has special needs or vulnerabilities so perhaps a little more tolerance might help - one or two comments in a related thread about shared tables were incredibly crass and insensitive!

We typically don't don masks on trips unless we HAVE to be out during a bad cold and flu season or if we appear to be inundated by unhealthy individuals, despite my son's issues. We believe in living life to the fullest, while being safe and cautious when possible and appropriate. (flu shots are imminent for the whole family!). He is here, at nearly 21 years of age when he was given a less than 10% chance to be born and our upcoming cruise is part of our bucket list. As is an African Safari in a few years... all going well! Just thought I would share the info about masks for those who wear them, because some people aren't aware how quickly they lose the protective quality.

I'm an admitted germaphobe and love the OP for wanting to wear a germ filtering mask. I wish they would hand them out on the planes. When I fly, I wear a scarf. If anyone starts coughing, I warp the scarf to cover my mouth and nose whenever anyone sneezes. I direct the air vent to create an air current in front of my face. Vacations are few and far between. I don't want to spend them holed up in my cabin with a hacking cough and fever.

 

I carry individually wrapped disinfectant wipes in my purse. When I fly, I wipe down our trays and the arms of our seats, and never touch the magazines that are tucked into the seat pocket.

Wiping down the seat tray is a great idea, but be careful of those air vents... yuck! http://www.cnn.com/travel/article/airplane-airport-germs/index.html

We have to be careful because my son has immune issues, and really crappy lungs (he is missing most of his left lung and his right lung is similar to someone with emphysema because of his birth defect and he has a partially paralyzed diaphragm). We typically don't travel in winter, wash hands and use sanitizer frequently, and change clothes as soon as we return from outings in public when we have been around sneezer/coughers. And typical masks are only good for 20 minutes, because the moisture in your breath starts to inhibit the filtration benefits of them... hospital staff are supposed to change them every 20 minutes!

Thank you for the update! Hopefully the doctor will have an attitude that quality of life is essential... (and perhaps she and her mother can help get that across to him/her!). If you are looking for a handicapped accessible stateroom it will likely be difficult to get for this year... I would suggest booking for next year asap as they book pretty quickly.

I so hope you can all find a way to make this work. It is so important to live life to the fullest when and where you can! Such good friends are a blessing. Don't forget when you book to get travel insurance right away, as the pre-existing clause on most policies will cover cancellations only if you take out the insurance at the same time as you book (or within 14-21 days). SO important when dealing with health issues!

Looking forward to hearing how things go...

I know there are people with children on vents who have gone on Disney cruise line... part of Make A Wish. I would "assume" that there must be some way that Princess would be able to help make this work when you contact the special needs dept. You might see if you can find a TA that specializes in special needs as well as they often know the ins and outs of making these kinds of arrangements better than doing it on your own. When we booked our Alaska trip for this summer we had to book our HA room 1 1/2 years in advance. My son uses a scooter, is on Bipap/Avaps at night (which is essentiallly a non-invasive ventilator) and is often oxygen dependent. He is also strictly tube fed, and for most of his life was also dependent on IV nutrition. We cruised on DCL twice out of Florida when he was still a child, he is now a young adult but we are his guardians as he is developmentally disabled. I absolutely believe it can be done, you just have to figure out the right way to make it happen. I don't believe in saying never... and no. My son is here 20 years later when they gave us a 10% chance for him to live to be born, and we have traveled around the country, and are planning an African Safari in a few years. It can take work, creativity, and determination, but all kinds of things can happen. My best wishes to you!!!!

For our last 11 cruises I have attached my 11 inch porthole, which is mounted on a rubber covered magnet to prevent damage to the door, to the cabin door. The porthole shows three seagulls flying over water.

 

Then when walking down the hall way I just look for the port hole. :D

 

Each trip the Wife always asks if I have packed my porthole because she also just walks along until she see's it on the door.

 

So, far no one has taken it off the door.

 

BobR

Your porthole idea has me thinking.... actually my son and I thinking. Since we are going to Alaska.. we could do a different porthole for each day. On Glacier Bay day we could a porthole with a glacier in the window. On another day (maybe the day we go Salmon fishing in Juneau?) we could have a salmon swimming in the porthole. The day we go on the Deadliest Catch tour we could have a photo of their ship in the porthole, etc (along with maybe a few days of polar bears, grizzlies, and killer whales of course!). We are doing a northbound followed by a land tour then going south bound after that... so we could get repeat use of our magnets too! I know it may seem silly to some, but it is our vacation, and we like to have FUN!

Good thread! We loved decorating our door when we were on Disney, but that was many years ago and our trip to Alaska this summer will be our first cruise on Princess. We also had fun with "fish extenders" (Disney cruisers will know what those are!)... Starting to think about what we might put on our door.. keeping it simple, and Alaska oriented. My son is on the spectrum and it really helps having a picture on the door, more than just the stateroom #. It will be good for him to help plan out our design too!

A question for the spouses of c pap users: Is the machine loud? Does it keep you awake? My husband snores incredibly loud and also stops breathing. He's finally going to talk to the doctor about it and I'm sure a c pap is in our future. It can't possibly be as loud as he is, but I'm wondering what it will be like. I'm hoping it will mean better sleep for both of us.

The older machines used to be quite noisy (my son went on bipap 15 years ago and it was a beast of a machine!). These days the machines are much nicer, very quiet... biggest problem I think for a spouse or bed partner is that if they are facing you there is a steady stream of air, often quite cold that comes from the mask. It depends on the pressure that the user needs as to how much air is coming out, and if you are sensitive to it that can be a bit annoying! It will take him some time to get used to his new bedtime buddy, but it is SO worth it for both of you. I started on cpap over the summer myself, and while it has taken some time to get used to, my sleep is much improved. There are a great variety of different masks, so hopefully he can work with a good company that will work with him to trade out masks until he finds one that is just exactly what he needs for his comfort sleeping that works for his needs (mouth vs nose breathing, chin strap, etc). Ours was awesome... I had a month to try out whatever masks I needed until I found the right "fit". Here's to better sleeping for you both!

I havnt heard of one either. I do know of people (including my son) who have cruised with significant health issues but they typically have a caregiver who knows how to deal with their issues that travels with them. We have cruised with TPN (IV nutrition) as well as tube feeds, oxygen, bipap/avaps (non-invasive ventilator), IV antibiotics and oxygen. I know of others who have traveled with a tracheostomy as well. Our only cruises so far have been on Disney and they did a marvelous job working with our needs, our cruise this summer will be on Princess.

Nope. Standard CPAPs do not literally breathe for you. There are machines that do that, but they are not commonly used.

Standard CPAP/BiPAP is used for people with OSA. When you obstruct the machine prevents or reverses the obstruction depending on which brand/model you have.

The CPAP/BiPAP that literally breathes for you is used for people who have central sleep apnea (with or without OSA). These "adaptive servo" machines are mini ventilators and very expensive.

That would be similar to the kind my son has. His machine has volume ventilation in addition to the traditional pressures that CPAP/BIPAP have and is accompanied by a back up rate in case he does not breath (he has mixed apnea, both central and obstructive). SO thankful for this machine, as without it he would have been trached and ventilated years ago. (he started using bipap at age 5, he is now 20 and transitioned to this machine 4 years ago when his bipap pressure needs exceeded the machine's abilities).

What I would suggest, to save room, is to bring a power strip without surge protection, for use both on shore and onboard. When in a hotel, use a device like the very popular Belkin Mini surge protector, and plug this into the wall outlet, and then plug your non-surge protected power strip into the Belkin. The Belkin will provide surge protection to all devices "downstream" of itself.

Awesome idea! Thank you! We do have a lot of equipment we are taking already, so space saving is important! (we have to bring all his food with us, 3 weeks supply though we hope to ship some of it on ahead to hotels... )

I would not necessarily rely on an answer to a technical question from even the special needs department of any cruise line. I would ask that any proof that a surge protected device is permitted be from the line's legal department (for insurance reasons), and the technical department.

 

The problem is not with the wiring in the cabins, whether HC or not, it is a basic design problem with consumer surge protection devices. Your surge protector can be operating 100% correctly, but when a lighting fixture on the pool deck gets water inside and goes to ground, this ground current can reverse voltage your surge protector, which it is not designed to handle, since this cannot happen on shore, and the semi-conductors can fail and melt the power strip. So, having done everything as correctly as you can (except for using a surge protector), a condition totally out of your control can cause the surge protector to catch fire.

 

The reports I believe you have seen about hair dryers catching on fire, are caused by two things, neither of which are the result of the ship's wiring. They either have hair caught in the heating element, or someone has plugged a 220v hair dryer into a 110v outlet, which allows double the current to flow, causing the dryer to overheat.

 

All other appliances that have been reported as catching fire when plugged into the ship's power will be from voltage mismatching (110v into 220v, or vice versa).

 

And appliances overheating and catching fire are caused by excessive current, which a surge protector does not protect against. The usual damage caused by excessive voltage, which is what a surge protector guards against are blown transformers and circuit boards in your appliances, which stops them from working, but generally happen in such a short time frame for the component to burn "open" and no longer allow current to flow, that there is very little heat generated.

 

Surge protection protects your son's appliances from large voltage spikes you get onshore from failed power line transformers and lightning strikes. Ships don't use the same type of oil filled transformers that you see on power poles (which reduce the utility voltage from 12,000 volts directly to the 240/120v supply to your house), and also tend to step the voltage down in series of transformers, so the most your cabin would see from a failed transformer (never seen one in 40 years, but the power pole transformers blow near our house all the time) would be 480 volts, typically below the "clamping voltage", or level where the surge protector starts to dump voltage, of the surge protector. As for lightning, the different grounding system used on ships, that makes surge protectors dangerous, also protects the electrical system from lightning strikes. A ship hit by lightning (and I've been on several), will simply pass the lightning's power through the hull to the sea. Since the electrical system is isolated from the hull, no power from the lightning (several hundred thousand volts) will enter the electrical system. I have never had any electrical system, either power or electronic, fail onboard a ship struck by lightning. The only casualties are the radio equipment, which are damaged by the lightning entering the antennas and damaging the radio.

 

Note that none of the ship's own equipment is surge protected, even such critical systems as the engine room automation that keeps the lights on and the propellers turning, nor the navigational equipment on the bridge, nor any safety or lifesaving equipment required onboard.

THIS is what I was looking for! Thank you so much! Sounds like we should definitely plan on bringing both kinds of electrical strips with us, one for on ship and one for the hotels off the ship. I appreciate your kind and thorough explanation...

having a letter from someone at Princess who doesn't know ship engineering will not help you when/if they confiscate it. We have highly qualified/experienced professionals here on CC who have posted numerous times why surge suppression is not necessary, indeed dangerous on a ship. Certainly bring it if you feel you will need it for a hotel before of after the cruise...EM

And that is my concern. I have read the posts from the professionals on CC and also felt it appropriate to contact the access office at Princess. I would assume the access office would know what is and is not permissible/appropriate/safe in the HA state rooms... perhaps those are set up differently than the typical state rooms? And yes, we are doing a cruise tour so we will need access before and after as well. I am not trying to argue with you, but it did seem to me that the access office should have the appropriate information for the HA staterooms.

Especially having seen recent postings here and in other locations where hair dryers and other electric appliances have caught fire when plugged in to the ship's electrical system, my concern seems valid when my son's lungs are dependent on his bipap and oxygen.

Just trying to cover our bases.... maybe I should bring both a surge and a non surge and then talk to the engineer on board the ship when we board.

I keep reading elsewhere that surge protectors are not allowed, however when I wrote to Princess regarding our need for electricity and my concern for my son's expensive medical equipment I have an email that specifically states we may bring a power strip with a surge protector on board with us (we are staying in a HA stateroom). They even sent a photo of what was acceptable. Found the exact item on amazon...

I plan on bringing the email with me as proof that I was told it was acceptable. Any thoughts on this or suggestions? We have several items we need to plug in (his bipap, oxygen concentrator, feeding pumps, and scooter, not to mention recharging camera batteries, etc!)

https://www.amazon.com/dp/B00PBWV6AU/ref=wl_it_dp_o_pC_nS_ttl?_encoding=UTF8&colid=I3Y48LU3S9FR&coliid=I3DE3G073133O1&psc=1

One other thing I forgot to mention... some oxygen supply companies will loan you the portable concentrator along with the batteries, some wont and you will have to rent it. It is something to ask about ahead of time, and make sure to give them plenty of notice that you want to reserve one for your trip (including picking it up a few days before you head out on the road!). We usually drive rather than fly when we travel because my son has a LOT of medical equipment (he is tube fed so we have to bring or ship all of his food ... for our Alaska trip in August he will need 9 cases of formula!) plus his scooter and other supplies.

I know it can feel overwhelming at first to learn how to manage with this new hurdle, but it can be done, and in time you will learn how to manage it so that it becomes second nature. Kind of like learning to drive... scary at first, but after a year or two it was easier to remember to check your mirrors, watch the road for kids coming out between cars, and make sure that your tank never reached empty. Same with O2. Plan ahead when traveling so you don't run out of batteries and have a back up plan (at home for example having a few extra tanks in case of a power outage...). You can do this!

The need may also depend on your home elevation. We live in Idaho, and my son requires 1 liter of oxygen at night at our elevation of 2800 feet. When we go to sea level we are fortunate in that unless he is sick he does not need it. We still take the portable concentrator because we can't always count on his staying well for an entire trip (or getting overly tired... he also uses bipap at night). When he goes to higher elevations he requires 1.5-2 liters of oxygen, as well as sometimes needs it during the day depending on his level of exertion. In the Denver area recently he needed 2 liters at 7,000 ft during the day.

Do you have access to a fingertip pulse oximeter so you can keep track of oxygen saturations so you can increase/decrease the amount of liter flow as needed? They are quite inexpensive from Amazon... $30 or so and we have found them to be invaluable in terms of managing my son's oxygen needs.

The batteries for the portable oxygen concentrator recharge nicely (you have to keep changing them out every few hours as they charge up overnight if you used them all up during the day for excursions, but definitely worth having if you are using a higher liter flow or needing the O2 24/7). We have become quite adept at traveling with oxygen over the 20 years of my son's life, and it is definitely worth learning how to do. Quality of life is everything!

I can give as an example what we hope to do someday. My son is developmentally disabled, and in our state he is on the disabled waiver (he is a young adult). He has someone come in to our home on a regular basis to work with him on various skills, interpersonal, social, training him in various things. As part of his budget we have chosen a route that allows us to hire independently rather than go through an agency. We can hire this person (if she is willing) to come with us on a cruise. She would get paid the hours that she works with him on the cruise, say, 8 hours per day. She (or we) would cover her expenses of going on the cruise itself, given that she would have the rest of the day free, we might consider splitting the cost. That is up for discussion. If we required her to go on excursions with him we would of course cover her expenses on the excursions as well. Any of her personal expenses, excursions on her own, spa fees, etc would of course remain her personal costs. Our hope as parents would be that we might have some free time which we have not had over the last 20 years, and our son would enjoy having his friend/therapist to hang out with and enjoy doing some fun things with on the cruise. His budget would cover those 8 hours per day, and she would bill for it, thus receiving the check during her normal pay period.

Does that make sense (as to how a caregiver might get paid from an external source?). I realize it is not available to some, but we are MOST thankful that it is a possibility for us!