any experience with at-home dialysis on board?

[daisyx3]

Please bear with me as I am new to this and may sound like an idiot.
My husband has been fighting kidney failure for a few years. He has no symptoms but his bloodwork is horrible. It has gotten worse in the last couple of months and now his nephrologist wants to admit him after Christmas to have a dialysis port put in, and start the dialysis shortly after.
The goal has always been that when this time came, he would have set up the procedure to have the at-home dialysis port put in since he runs a small business and can't sit in a center for a few hours every other day. But he put off that appointment since he doesn't feel sick at all, and now his nephrologist says he can't wait the 4 weeks. The plan is to start the regular dialysis and hopefully be switched to at-home by the end of January.
We have a 7 night Fantasy scheduled at the end of May, PIF date is end of January. I asked the doctor about whether I should cancel, and he said it's too soon to know that. It was a stressful appointment --I don't normally even go, but the doctor had called before about the bloodwork so I tagged along and found out just how serious things have gotten-- and the last thing I wanted to do was explain PIF date, etc.
I have read online that it is possible to do the at-home system on vacation; you just have to bring the little machine with you. I was just wondering if anyone with experience with doing this on a DCL cruise could chime in. DH doesn't want me to cancel. I do have insurance if I cancel after PIF and I got "cancel for any reason".
Thanks for any feedback you may have.

 

[gotomu212]

Not specific to dialysis, but we’ve traveled with someone who needed a few nightly at home medical treatments. We contacted DCL special services before the cruise and they had someone who was familiar with what we needed and talked through what they could accommodate (It is a very different experience than calling normal guest services). Everything was set up for us when we arrived. I’d suggest reaching out to them to discuss dialysis needs specifically (and they will definetely know what that involves).

 

[lanejudy]

No experience. But I suggest you contact DCL Special Services department; they can help you with any arrangements you need.
Phone: (407) 566-3602 or Email: SpecialServices@disneycruise.com
And here is a link to the Special Services form: https://disneycruise.disney.go.com/special-services-information-form/

People go to WDW while doing home dialysis, so I'm sure it's possible to take a cruise. It may depend on your/his comfort level at that point - both physically and with managing the process.

Good luck and enjoy your cruise!

 

[Marc D]

Quite honestly, the home machine involves supplies that need to be used, and disposed of, at each treatment. You therefore need to contact the place you are staying to make sure they can accommodate you. This is particularly true of a ship, where waste disposal is a major concern.

At this point, there are many uncertainties including if your husband is really a candidate for peritoneal dialysis. It is a treatment that involves training and getting used to. Everything falling into place before you have to make a monetary decision concerning the cruise is doubtful.

If I was in your situation, I would concentrate on adapting to dialysis and the necessary changes to diet and lifestyle and cancel the cruise. You could also look if dialysis at sea is offered by DCL. it is a service that exists on certain lines and some specific cruises.

Good luck to you and your husband.

 

[Tikibear]

35 year not-for-profit dialysis tech here. The disposable equipment may be more than you can handle on the cruise. I have staffed for Dialysis At Sea. They specialize in hemodialysis cruises where we dialyze patients on at sea days so port days are available for adventures.

 

[daisyx3]

DH is pretty adamant at this point I not cancel. He is pretty strong (this is the theory his doctor has as to why he isn't symptomatic) and I think he will adapt well. The nephrologist discussed the fact we would both need training. I am looking at diet changes, which will be the big problem--we don't cook much, and the diet is so, so limited. The doctor seems sure he can do the at-home stuff, since the in-clinic dialysis wouldn't work with his business. Unfortunately he had prostate cancer and had his prostate removed in summer of 2018, and his PSA is still there (minimal) so his urologist has not signed off to put him back on the donation list yet.
I saw some dialysis at sea cruises but not Disney. Honestly we cruise because it is Disney. In fact (unfortunately, I guess) most of his Christmas gifts are related to our cruise, as we had no idea this was coming--a Fantasy t shirt, a snorkel mask, a magic band for our stay the night before. We also got season passes for Cedar Point since we aren't going back to WDW parks until 2021.
I guess I'm rambling....sorry. So much to think about. Just glad I bought that insurance.

 

[Briana Venturo]

Please bear with me as I am new to this and may sound like an idiot.
My husband has been fighting kidney failure for a few years. He has no symptoms but his bloodwork is horrible. It has gotten worse in the last couple of months and now his nephrologist wants to admit him after Christmas to have a dialysis port put in, and start the dialysis shortly after.
The goal has always been that when this time came, he would have set up the procedure to have the at-home dialysis port put in since he runs a small business and can't sit in a center for a few hours every other day. But he put off that appointment since he doesn't feel sick at all, and now his nephrologist says he can't wait the 4 weeks. The plan is to start the regular dialysis and hopefully be switched to at-home by the end of January.
We have a 7 night Fantasy scheduled at the end of May, PIF date is end of January. I asked the doctor about whether I should cancel, and he said it's too soon to know that. It was a stressful appointment --I don't normally even go, but the doctor had called before about the bloodwork so I tagged along and found out just how serious things have gotten-- and the last thing I wanted to do was explain PIF date, etc.
I have read online that it is possible to do the at-home system on vacation; you just have to bring the little machine with you. I was just wondering if anyone with experience with doing this on a DCL cruise could chime in. DH doesn't want me to cancel. I do have insurance if I cancel after PIF and I got "cancel for any reason".
Thanks for any feedback you may have.

Hi my dad just started at home dialysis he was on hemo at a center three days a week prior anyway we are going on a Disney cruise in October it would be the first time cruising with it but he took his machine with him in November when we went to Disney we had a pretty bad experience in the airport with TSA- just some things but you can contact me with any questions- he has a catheter through the stomach and it was recommended not to swim in any pools or oceans because of risk of infection. I think you should be okay for your May cruise he and my mom went to training for two weeks straight I think it was four weeks before he started it so if it’s put in in January you should be starting it February you can have all supplies delivered to the port I am learning as well now for our upcoming cruise I am going to call the special service line but I would recommend for airline travel to have a letter from your nephrologist saying. What the machine is our airport Philadelphia treated my dad like a criminal when going through TSA because they are unaware of what the dialyzer is - Orlando airport was even worse we put the machine through TSA and gate checked it I would call your airport and find out how TSA handles these things I wish I had prior to they made him feel so bad he said he would never travel again but that’s no way of life. Please contact me so we can chat more brianamventuro@gmail.com
I plan to write a letter to Orlando airport and Philadelphia to tell them how horrible they treated my dad.

 

[Tikibear]

I guess it’s going to depend if you’re on hemo or peritoneal. It’s going to be a lot of disposables either way. CAPD will probably be easier except for that little thing of keeping out of the water to avoid infection. TSA should be well versed by now on traveling with medical devices or equipment. I’d definitely write your letter to the appropriate port authorities and the TSA about your experience.

 

[daisyx3]

I guess it’s going to depend if you’re on hemo or peritoneal. It’s going to be a lot of disposables either way. CAPD will probably be easier except for that little thing of keeping out of the water to avoid infection. TSA should be well versed by now on traveling with medical devices or equipment. I’d definitely write your letter to the appropriate port authorities and the TSA about your experience.

He starts at the clinic today; he had his port put in yesterday. We were told about the no-water thing and I think that may have changed his mind about even trying to go; we spend a lot of cruise time in the pool and our ideal excursions were a sail and a snorkel. Without water I think he'd be bored.
I certainly hope the training isn't during the day for two weeks straight; I have two classes that are almost impossible to teach with a substitute. Plus I wonder what happens when I leave town for 3 nights in April to visit the grandkids? Yikes. Some of the literature I was reading mentioned having the patient be as self-capable (is that a word?) as possible just in case of that type of scenario.
I will look at informing TSA and for sure if we don't cancel I'll talk to DCL way ahead of time. We have TSA pre-check so maybe that will help in the airport. But at this point I feel pretty depressed and if it was up to me I'd cancel now, and just not travel as a couple until he gets a new kidney in the future.

 

[Marc D]

Dialysis involves a lot of care and changes to the way you eat and live your life. If he gets comfortable enough with PD, you’ll be able to travel in controlled environments (like WDW) but you‘ll need to accept that things will not be the same as before.

However (and I fully understand that is is difficult to accept when you just start treatments), you should not stop working towards figuring out a new normal way to live with the situation and just wait for a transplant. Getting a transplant is like winning the lottery. You shouldn’t base your life around that hope. You might spend years not doing things you love. In my view, those would be wasted years.

 

[Briana Venturo]

He starts at the clinic today; he had his port put in yesterday. We were told about the no-water thing and I think that may have changed his mind about even trying to go; we spend a lot of cruise time in the pool and our ideal excursions were a sail and a snorkel. Without water I think he'd be bored.
I certainly hope the training isn't during the day for two weeks straight; I have two classes that are almost impossible to teach with a substitute. Plus I wonder what happens when I leave town for 3 nights in April to visit the grandkids? Yikes. Some of the literature I was reading mentioned having the patient be as self-capable (is that a word?) as possible just in case of that type of scenario.
I will look at informing TSA and for sure if we don't cancel I'll talk to DCL way ahead of time. We have TSA pre-check so maybe that will help in the airport. But at this point I feel pretty depressed and if it was up to me I'd cancel now, and just not travel as a couple until he gets a new kidney in the future.

Hi so my parents did 9am to 12 pmfor about 8 days of training please don’t feel discouraged I know easier said then done but you guys have to enjoy life still it’s just a new way of life- yes he will need to know what to do in case of problems with the machine he will get it plus I know my dads on call nurses are great at troubleshooting the machine in case of issues anyway keep me posted on how he’s doing and if you have any questions you have my email. I was going to tell my parents to do the precheck I have it and it’s wonderful

 

[Tikibear]

It sounds like your husband is on peritoneal? Be sure to mention your trip to your training staff. They will have a lot of info for you. Also, check if your Clinic has a travel coordinator. That was part of my job. I arranged travel for patients going everywhere from Japan to Europe to cruises. If nothing else they should be able to contact the right people at DCL to see what they’re capable of handling. Once again, Dialysis-At-Sea is a really good option.

 

[OfChorus]

Please bear with me as I am new to this and may sound like an idiot.
My husband has been fighting kidney failure for a few years. He has no symptoms but his bloodwork is horrible. It has gotten worse in the last couple of months and now his nephrologist wants to admit him after Christmas to have a dialysis port put in, and start the dialysis shortly after.
The goal has always been that when this time came, he would have set up the procedure to have the at-home dialysis port put in since he runs a small business and can't sit in a center for a few hours every other day. But he put off that appointment since he doesn't feel sick at all, and now his nephrologist says he can't wait the 4 weeks. The plan is to start the regular dialysis and hopefully be switched to at-home by the end of January.
We have a 7 night Fantasy scheduled at the end of May, PIF date is end of January. I asked the doctor about whether I should cancel, and he said it's too soon to know that. It was a stressful appointment --I don't normally even go, but the doctor had called before about the bloodwork so I tagged along and found out just how serious things have gotten-- and the last thing I wanted to do was explain PIF date, etc.
I have read online that it is possible to do the at-home system on vacation; you just have to bring the little machine with you. I was just wondering if anyone with experience with doing this on a DCL cruise could chime in. DH doesn't want me to cancel. I do have insurance if I cancel after PIF and I got "cancel for any reason".
Thanks for any feedback you may have.

 

[OfChorus]

Hi Daisyx3...
My husband has been on peritoneal dialysis (PD) for almost 4 years and we cruised w/ DCL 2 years ago with no problems. The main thing is to let them know asap that you'll be bringing equipment and supplies. (Unless you're already familiar with dialysis, you don't know what that will be yet.) We heard through some of our training with DaVita and Fresenius (2 dialysis centers) that supplies can be delivered to the ship but when speaking directly to the supply provider (Baxter is ours), that there was a huge fee ($$$) to deliver to the port directly. So - we just loaded the boxes of solution (true for both hemo and PD) and took them with us. We were instructed by DCL to make contact directly with the DCL porters (not the same as the Port stewards who meet us to unload luggage) and they would take charge of our luggage AND supply boxes which went through beautifully. The most important aspect is to make sure you have ALL of the needed supplies with you as there will be no place to obtain anything you forget once you set sail. It's also important to make sure you have those supplies on hand the morning of disembarking when he needs to disconnect. (I made the big booboo of forgetting to keep out the 'mini-caps' needed when he disconnected and he had to remain connected until that piece of luggage (amongst thousands) could be located and returned to our room - totally my fault.) DCL folks were so accommodating. We hope to be sailing again sometime this year but yet to book. I'd be glad to share our experience with you further - just message me through here. Don't put off going on dialysis as with training it can take time to adjust to and you don't want to be too much of a 'newbie' and then going away from support systems on a cruise. As to the swimming - if he's on PD - definitely don't want to break those rules as peritonitis is nothing to mess with. DCL is great about helping with dietary restrictions but we are pretty good at choosing wisely from what's offered and he keeps his phosphorus binders in good use. He's dealing with unrelated memory issues now, but he was quite capable of doing his own set-up and administering pd in the earlier days - now I oversee and we work as a team to make sure all protocols are in place.

 

[vegs1]

I’m sorry you’re going through all of this. It must be tough deciding what is the right thing to do

I just wanted to mention to please check with your travel medical insurance to be sure he will be covered while travelling. If they have just put in the port and started dialysis, this would be considered a change in his pre existing condition so he may not be covered.

I hope everything works out for you.

 

[sharksfinatic17]

My dad did peritoneal dialysis on a DCL Alaskan cruise. Our challenge was getting the solution delivered to Canada. Ultimately, it arrived at our hotel no problem. He had been on his dialysis for about 5 months before our cruise and had no issues. We made sure he and my mom had travel insurance in case of any problems. Good luck to you.

 

[Pea-n-Me]

Hi Daisyx3...
My husband has been on peritoneal dialysis (PD) for almost 4 years and we cruised w/ DCL 2 years ago with no problems. The main thing is to let them know asap that you'll be bringing equipment and supplies. (Unless you're already familiar with dialysis, you don't know what that will be yet.) We heard through some of our training with DaVita and Fresenius (2 dialysis centers) that supplies can be delivered to the ship but when speaking directly to the supply provider (Baxter is ours), that there was a huge fee ($$$) to deliver to the port directly. So - we just loaded the boxes of solution (true for both hemo and PD) and took them with us. We were instructed by DCL to make contact directly with the DCL porters (not the same as the Port stewards who meet us to unload luggage) and they would take charge of our luggage AND supply boxes which went through beautifully. The most important aspect is to make sure you have ALL of the needed supplies with you as there will be no place to obtain anything you forget once you set sail. It's also important to make sure you have those supplies on hand the morning of disembarking when he needs to disconnect. (I made the big booboo of forgetting to keep out the 'mini-caps' needed when he disconnected and he had to remain connected until that piece of luggage (amongst thousands) could be located and returned to our room - totally my fault.) DCL folks were so accommodating. We hope to be sailing again sometime this year but yet to book. I'd be glad to share our experience with you further - just message me through here. Don't put off going on dialysis as with training it can take time to adjust to and you don't want to be too much of a 'newbie' and then going away from support systems on a cruise. As to the swimming - if he's on PD - definitely don't want to break those rules as peritonitis is nothing to mess with. DCL is great about helping with dietary restrictions but we are pretty good at choosing wisely from what's offered and he keeps his phosphorus binders in good use. He's dealing with unrelated memory issues now, but he was quite capable of doing his own set-up and administering pd in the earlier days - now I oversee and we work as a team to make sure all protocols are in place.

This is along the lines of what I was thinking. I think if you go you will have to be completely responsible for all supplies, and I doubt that you'll be able to rely very much on DCL staff for medical assistance related to PD since it is such a specific skill. You may be lucky to find someone who has experience with it onboard, but there's no guarantee. Depending on the number of exchanges done per day, this can be a lot of bags of fluid and other supplies to take with you. I think when people have experience with it, they usually get very good at it. It could be iffy if still new to you, though, with lots of variables. As the poster I quoted said, she forgot some supplies and they had to rethink what they did that day. The question is, would you know what to do in that situation? And would you have any support? Sometimes there can be 24/7 online support from suppliers of equipment if you have an equipment issue, as in how to work something. But if you run out of a supply of some sort, or forgot it, I'm not sure you'd be able to get it either on the ship or at a port. (As opposed to being in Orlando, there probably wouldn't be an issue.) I would also be somewhat concerned with a medical evacuation if something goes very wrong and your husband gets sick. Make sure you have coverage for that if it happens, but think, too, about where he might wind up. I think if it were us I might consider moving the cruise up to a future date when things are more stable and you are really comfortable and secure in your knowledge of all that needs to be done to do PD and to keep your DH safe on a trip, especially one at sea. But I do wish you luck in whatever you decide. I'd also be very curious to know what DCL has to say if you contact Special Services. Hang in there, it's a trying time right now but many people live fulfilling lives with dialysis, and hopefully he will be a transplant candidate soon.

 

[bumbershoot]

I just wanted to mention to please check with your travel medical insurance to be sure he will be covered while travelling. If they have just put in the port and started dialysis, this would be considered a change in his pre existing condition so he may not be covered.

He already has travel insurance. The look back period is about if there had been a change before getting the insurance. Since this is a change after, it’ll be ok.

 

[EveDallas]

He starts at the clinic today; he had his port put in yesterday. We were told about the no-water thing and I think that may have changed his mind about even trying to go; we spend a lot of cruise time in the pool and our ideal excursions were a sail and a snorkel. Without water I think he'd be bored.
I certainly hope the training isn't during the day for two weeks straight; I have two classes that are almost impossible to teach with a substitute. Plus I wonder what happens when I leave town for 3 nights in April to visit the grandkids? Yikes. Some of the literature I was reading mentioned having the patient be as self-capable (is that a word?) as possible just in case of that type of scenario.
I will look at informing TSA and for sure if we don't cancel I'll talk to DCL way ahead of time. We have TSA pre-check so maybe that will help in the airport. But at this point I feel pretty depressed and if it was up to me I'd cancel now, and just not travel as a couple until he gets a new kidney in the future.

Hi - just wanted to say I know how overwhelming everything can be when a loved one starts dialysis. That said, please don't stop living life because you're waiting for a transplant that may or may not happen. Even if your doctors put your DH on the list, it could be years/never before a donor is found.

 

[daisyx3]

Thanks for all of the replies so far. I am actually thinking of keeping the trip but changing it to a WDW trip and shortening it by a couple of days. I would use the money I had already put toward the cruise toward the resort reservation--and hopefully cruise again in the future. DH has had two days of dialysis now, and says he doesn't feel any differently, but again, he didn't feel sick anyhow. At least on land if something went wrong, we could go to a davita center nearby (the center we are using now is a davita as well).