Complicated Medical Question for you experts

[FirstTimer from Ohio]

All:

 

I have a medical question for all the knowledable people on this board. My mother is on peritoneal Dialysis waiting for a kidney tranplant. I think that I have finally talked them into taking a cruise and enjoying the time that they have left.

 

1. She would require about 8 boxes of supplies (~12X18x12").

2. Medication that requires refrigeration.

3. An extremely clean environment to do dialysis. Room should do, but has to be very clean.

4. A place to dispose of insulin needles.

 

Any help this board can provide would be appreciated.

 

My wife and I will be joining them on this cruise to assist.

 

Thanks,

FirstTimer from Ohio

[BallFour4]

Your situation needs a reputable, and perhaps written answer from the cruise line.

 

Call your travel agent and explain with the same detail what your needs are. I can share that being in the healthcare business you might get a answer with more opinion than fact here, and your need firm answers.

 

Also, a cruise line cannot confirm absolute sterility beyond the cleaning they do routinely after the previous guest leaves the cabin. The liability risk is too much.

 

Bacteria that survive aboard ships can sometimes be a tough one, and that is one of the reasons agressive treatment is necessary once a outbreak happens.

 

Here's my suggestion for what it is worth. Talk to her nephrologist and explain what you wish to do, and get his/her permission to take her on the cruise.

 

Fax or e-mail your needs to the customer service department well in advance. Be prepared to have them tell you some answers you might not like as to the lack of ability to clean beyond the routine procedures.

 

Then you and your family must weigh the risk versus benefit and make that decision to cruise or not.

 

Bottom line? Get off the cruise boards and talk to the professionals at the cruise line, or get your travel agent to do it for you.

 

Take Care.

[sandy toes]

My Aunt sailed 4 times as a PD patient. All on Celebrity. So I think Royal Caribbean would also work as they are sister lines. Many people sail with PD some even with a cycler. You have to provide ALL your own supplies, letting the line know WELL in advance of your medical condition, don't forget to purchase insurance when you make your deposit so the pre-existing condition is covered, talk it all over with your doctor and have the office provide you with a list of needs for the entire cruise. Remember, YOU are 100% responsible for all hook ups and disconnects. You must know your own system and how to trouble shoot any problems. The ship board medical staff is, of course, there as back up. YOU can have a great holiday. ENJOY!!!

[jobster71]

Reseach for current doctor's name for the ports you will be visiting. Carry copy of current medical records. Bring extra hook ups in case your travels are longer. Be pro-active in your own cleaning of the room, you can now buy clorox wipes and anti bacterial gels. Have fun and enjoy, this is your vacation too.

[Nurse Daybreak]

You don't need a sterile environment, only a sterile field , for peritoneal dialysis. Many people do this several times daily in their own homes. Every stateroom I have been in on RCCL has been as clean as anyones home. There is a refrige in most cabins and insulin could be kept there. Also, how do you dispose of your insulin syringes at home? A disposable sharps container could be brought from home. Some people use coffee cans but I wouldn't reccommend that either at home or especially for travel as the lid comes off too easily and someone could end up with a needlestick injury. This may not matter to you as you know your mother, but if it happens to someone down the line and they don't know who used the needle then it could put someone through 30 days of anti-retrovirals and protease inhibitors. No fun, bad side effects, believe me I know from first hand experience. There should be no reason if your mother does her own dialysis at home that she would not be able to do it on a cruise ship as well.:)

[cruzinnh]

I wrote the special needs department at RCCL when we booked our trip and requested a "real" fridge instead of a cooler, and a sharps container. They responded in writing that both would be in our cabin upon arrival.

 

Kathy

[Retired not Expired]

I wrote the special needs department at RCCL when we booked our trip and requested a "real" fridge instead of a cooler, and a sharps container. They responded in writing that both would be in our cabin upon arrival.

 

Kathy

 

Kathy, my wife needed both on the Empress in January. When we arrived at the cabin, neither were there. A call to housekeeping was all it took to get both within a few minutes. So don't panic if they're not there. Sometimes, (Heck, most of the time), land and ship don't communicate too well.

[Ches94]

Having just gone through the transplant process with my DH this summer (he needed a liver from a genetic bile duct disease-PSC), my only concern would be for what it would do to your status on the transplant waiting list.

 

When DH was waiting, if we left the state we would have been put on UNOS status 7, which means we were essentially taken off of the tranplant list and would have had to relist once we came back.

 

Now, that being said, if she is very low priority right now and being put as status 7 is no big deal, then a cruise would be a GREAT thing for all! I know there were many times in the evaluation period and waiting period that DH and I would have loved a getaway!:D

 

Please give your Mother our best and a word of encouragement that life on the other side of transplant is a beautiful thing! I have my husband back and my two ds's (5&3) are getting to know their REAL Daddy for the first time.

 

Just my two cents:)

[sf2]

I've seen this truck parked at many docks during turnaround day . . . don't know how they do, but they're there often

 

http://www.dialysisatsea.com/about.aspx

[DD]

I was just about to recommend http://www.dialysisatsea.com as well. They provide nurses to handle the process. It sounds like your type dialysis is self-handled but the company is still a good name to remember in case anyone else needs the information in the future. Another company that assists with special needs (not dialysis) is Care Vacations http://www.carevacations.com

[FirstTimer from Ohio]

Thanks everyone. I knew I would get answers, or at least told where to get the answers. You all are great. I don't know what I would do without this knowledgable board.

 

FirstTimer:)

[cgc33a]

Don't forget to get a room big enough for the extra supplies and cycler if she uses one. They can take up a lot of room and cabins can be quite small. Also, I don't think anyone has mentioned, but I am sure the cruise line will tell you, you can have all of the supplies shipped directly to the ship so you don't have to transport them yourself (unless you live very close to the dock). I would call to confirm they made it though.

[aqhacruiser]

:)

All:

 

I have a medical question for all the knowledable people on this board. My mother is on peritoneal Dialysis waiting for a kidney tranplant. I think that I have finally talked them into taking a cruise and enjoying the time that they have left.

 

1. She would require about 8 boxes of supplies (~12X18x12").

2. Medication that requires refrigeration.

3. An extremely clean environment to do dialysis. Room should do, but has to be very clean.

4. A place to dispose of insulin needles.

 

Any help this board can provide would be appreciated.

 

My wife and I will be joining them on this cruise to assist.

 

Thanks,

FirstTimer from Ohio

 

I am very familiar with kidney transplant surgery as my father had one in 1996. If your mom keeps a sterile field for PD she should be fine however she is running a risk of possibly losing a kidney for transplant if one should become available. When that call comes you leave imediately for the hospital. If you are not there when they call, they immediately call the next person that will match in line. I lost my father in 2001 from heart failure due to the same disease that destroyed his kidneys but I can tell you after he had the kidney transplant he was fine with that transplant for the rest of his life and his quality of life improved tremendously. He was only on the transplant list for 4 1/2 months before he got his kidney. I know someone else that waited up to 5 years before they got a kidney so you just never know. I'm assuming your mom will be going for the kidney/pancreas transplant also as she has diabetes. There is no crystal ball to predict when that call will come. This is a very personal decision that you and your mom have to make in regards to taking a cruise. You can tell your mom's transplant coordinator about the cruise plans to get his/her advise on it as they are the ones that will be directly involved in contacting your mom and setting up the transplant should a kidney becomes available. You would also need to be sure blood is sent to the hospital right before you go as that is a weekly thing they must have on hand so they have the most current to check for a match if a kidney comes up. There is alot involved in this and I'd be happy to answer your questions in regards to kidney transplants if you want to email me but definitely contact the kidney transplant coordinator at your hospital and discuss this with them. I wish you and your mom all the best.:)

[Fran Harp]

Also, a cruise line cannot confirm absolute sterility beyond the cleaning they do routinely after the previous guest leaves the cabin. The liability risk is too much.

 

Bacteria that survive aboard ships can sometimes be a tough one, and that is one of the reasons agressive treatment is necessary once a outbreak happens.

 

Here's my suggestion for what it is worth. Talk to her nephrologist and explain what you wish to do, and get his/her permission to take her on the cruise.

.

 

I would add to all the rest that was said here:

- find out from RCI how to contact the medical facility on the ship, and have her nephrologist get in contact with them, so they are aware there's a dialysis patient coming.

- find out if it is possible to do the dialysis there in the medical facility. It would likely be the best and safest place. I wouldn't try dialysis in a stateroom.

 

Good luck, and let us know what happens.

 

Fran in Toronto