I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Traveling Tips and Stories => Topic started by: Joanniebop on December 04, 2007, 10:15:33 PM
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Hi Everyone,
I've been a little reluctant to post about our experiences on our first cruise with CAPD because I have to include an unhappy event as well as the good.
But I definitely wanted to share my thoughts and relay our travel adventure.
But first, my oldest daughter was pregnant with twins about to start her 6th month , but unfortunately she began to have contractions , the twins were delivered but they were not viable. We had a viewing and burial last week.
Chuck and I were in Guatemala when we were given the sad news that Joy was in the hospital. There was no way for us to get home. So needless to say we were not in the best frame of mind to have a really enjoyable cruise.
However, aside from my daughters problems, here goes my review.
We flew to Ft. Lauderdale a day ahead of our cruise sailing just to make sure that everything was going according to plans as far as getting Chuck started with the manuals. I packed four bags in my luggage along with caps, gloves etc. He was not very cooperative doing manuals. He still can't get it through his head that when doing manuals you are always filled. He found it very uncomfortable. So, I made adjustments with the amount of solution and throughout the cruise, I would stay up late so that I could get at least 2 exchanges in at bedtime and then would do one in the morning and he stayed dry/empty till bedtime. Health wise he felt fine.
This was our 25th cruise, but the first on PD. Chuck likes to do the exchanges lying in bed as opposed to sitting in a chair. Luckily there was a picture hanging over the bed . I put an over the door hook on the frame and was able to hang the bags from the hook. Worked out perfectly.
The cruise was an 11 day.. Key West ,Central America,( Belize, Guatemala, Roatan,) Mexico, Jamaica, Grand Cayman.
The ship was the Regent Seven Seas Navigator.
Only holds 490 passengers. All suites.
The service was exceptional. The food was excellent. This was an all inclusive cruise, unlike most mass market lines, the tips, drinks, everything but spa charges and the casino was included.
I've never had such great assistance with Chuck in his wheelchair. They were just so attentive.
A cold front came through Florida the night before we pulled into Key West . It was really cold, so we stayed on the ship. Had been there before and found the shops to carry the most unusual items and was hoping to find some new quaint and maybe a bit weird items to add to my collection.
Cozumel, was easy to access with the wheelchair so we just went for a little walk in the warm sun and browse a bit and headed back to the ship.
Guatemala was also easy to get off with the chair so we strolled into a market were they had a Marimba band playing and lots of little stands with very unusual but locally made items. Mostly wood, jade jewelery , blankets and shawls. I only purchased a few interesting looking key chains with dangling monkeys to give to my little neighbors.
I am getting very tired and tomorrow we go to the clinic for our one a month visit. So, if anyone is still interested, I will continue our journey later.
Thanks for listening.
Good Night.
Joannie
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I am so sorry to hear of the loss of the twins Joannie. I hope your daughter is ok, poor thing.
Thanks for the trip info, I look forward to hearing more.
Best wishes to your family.
:cuddle;
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So sad to hear about the twins..sometimes things just don't seem fair do they. I hope your daughter is coping ok. :grouphug;
Your trip sounds awesome and I can't wait to hear more.
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My condolensces to you, your daughter and the rest of your family for your loss. :angel; :angel;
Thank you for sharing your cruise experience with us Joanniebop, do you have any pics to share ;) :2thumbsup;
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I'm sorry for you and your family in the passing of the twins.
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I'm so sorry to hear about your family's loss of the twins.
Glad to hear the cruise went well, and can't wait to hear about the rest!
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I am so sorry about the loss of the twins. That is such a hard loss to morn. I hope your family, especially your daughter, recovers well.
It is a shame that such a catastrophe came during your trip, but the trip sounds like it went well. You are inspiration to others who might have otherwise been reluctant to attempt such a trip.
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Thank you all for your kind words and your concern for my family and especially for my daughter, Joy.
We've all experienced heartache in our lives since we all are dealing with the diabolical >:D kidney disease.
Your warmth and compassion comes through in your printed words and I really appreciate all of you. :-*
I spoke to her this afternoon and she sounded much better and is anticipating getting pregnant just as soon as she is healed.
So now the rest of the trip.
Our first stop , Belize was an anchored stop meaning that we were not able to actually pull into port but the ship anchors out in the water and a tender transports you to the pier. Whenever we have this situation we usually stay on the ship because Chuck doesn't do well with motion and the tenders are just small lifeboats. As it was, it rained all day which I thought was quite unusual for this time of year and for the ceaseless thunder, something I had never encountered on a cruise.
( I am being summoned by Chuck..think he wants to hook up, now don't have a dirty mind, I'm talking the machine.)
Be Back later.
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( I am being summoned by Chuck..think he wants to hook up, now don't have a dirty mind, I'm talking the machine.)
Be Back later.
:rofl;
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Chuck is snug as a bug.
So, we stayed on the ship and just enjoyed lazing out doors on the pool deck, while savoring each morsel of a blue cheese hamburger, yep that's right, I said a hamburger. Who would think that on a luxury cruise ship that I would take so much pleasure in eating a hamburger, my indulgence., and observing our fellow cruisers sunning, strolling ,reading, but mostly sleeping. Quite an older crowd, but very cordial and friendly people.
Our next stop was Roatan and once again we were anchored. I had considered going ashore without Chuck ( after he was settled in the cabin taking his daily siesta ), since I had been there before and pretty much knew where I wanted to go, but this was not a good day with the heartbreaking news from home. I spent a lot of time on the phone with my other daughters and son in law as Joy's condition worsened throughout the day. I was extremely pleased to be able to talk to Joy early that morning and later that afternoon.
The next day we were at sea all day on our way to Jamaica. Sea days are always the best for me because the casino is only opened when you are at sea. ( has to be in international waters) and I LOVE the casino. When Chuck was well ( we only live an hour from Atlantic City ) we spent a lot of time at Trumps Taj Mahal. Our business was seasonal , our down time was from Christmas to Easter, and had a lot of free time on our hands. Since he has lost his sight, he has no interest in playing. He accommodates me but gets antsy and bored. Can't say that I blame him.
We arrived in Ocho Rios, Jamaica and once again we decided to stay on board. Just too far from everything and the last time we were there we were bombarded with offers for drugs and generally didn't feel comfortable. Hard pressure sales people.. I get enough of that from telephone solicitors.
Our last port of call was Grand Cayman and this time I felt determined to get the h*** off the ship. Even though we were anchored Chuck was even more determined to get off and we made our way to the tender. But first there was a ramp with stairs we would have to tackle. To my surprise and extreme delight the tender guys carried Chuck in his wheelchair down the steps and on to the tender. Once we reached the pier he was again carried off the tender. The only thing that I wanted to do was buy some perfume for my mother and her caregiver and get Chuck a bottle of Frangelico. His current choice of poison..YUMMY
Grand Cayman is a beautiful lush island with turquoise water and some of the best snorkeling in the Caribbean.
The people are very helpful, friendly and warm. The shopping is duty free and there are bargains on every corner in very upscale stores.
So Chuck held up pretty well for the duration of our vacation. The CAPD was not too difficult but he was really happy to get back to his machine ( if you can imagine that )
It is always great to get away from the daily mundane routine but we were also anxious to get home and glad that we had very little discomfort.
There were so many wonderful, helpful people that we encountered which made our trip so much more pleasurable.
Thanks for listening and again for your kind words.
Joannie
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Sorry for your daughter, thats sad. Your trip sounds wonderful though.
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The trip sounds delicious and fun. I am sad over your sad news from your daughter. I hope everything works out for her.
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Sorry, but I only just saw this thread. I am so sad to hear of your loss, but I am glad that your daughter is looking forward to going again. My caring thoughts and prayers are with her in this time of physical and emotional healing.
Interesting trip. I would like to take a cruise some day, but I do HD, so I wonder how that would work out. I don't think I could afford dialysis on the ship itself. Maybe I should check out the places the cruise would be going and do the dialysis in a unit there. It would definitely cost much less in the Caribbean.
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Bajanne, since you are in the VI ( I think, but not sure which one..St Thomas???) it would be easy for you to pick up a ship in your general area, maybe even San Juan, and check out the itinerary to make your arrangements for Dialysis. I regularly read a cruise forum and there are quite a few people that do arrange for Dialysis on the islands. The ships that offer dialysis on board ( I think that they are called Dialysis at Sea) are extremely expensive and there really isn't much of a choice. They even make it that you have to book your cabin with the group running the dialysis and they seem to jack up the price of the cabin.
Hope that you can do it.
Goofynina, I didn't take too many pictures and I don't know how to post them but the next time one of my daughters is over I will ask them to get a few pictures up on board. It is so nice looking at everyones pictures that posts on this board.
Hope that everyone is enjoying these days before the Holidays and not getting too overwhelmed with all the preparations.
Don't overdo it !
Have a good night.
Joannie
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I regularly read a cruise forum and there are quite a few people that do arrange for Dialysis on the islands.
Could you give me the website with the forum. I would like to check it out.
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I regularly read a cruise forum and there are quite a few people that do arrange for Dialysis on the islands.
Could you give me the website with the forum. I would like to check it out.
The cruise forum is www.cruisecritic.com
Once you sign in go to BOARDS that's the forum for info exchange
and they have a DISABLED section..do a search dialysis and everyone that has traveled on dialysis will share their info.
The site for the ones that set up the dialysis on board is www.dialysisatsea.com
Have fun.
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Hello from Cleveland Ohio.So Sorry about your daughter and the babies.My prayers go out to you. :grouphug; I am on dialysis and me and my husband went to Las Vegas this past May.We had to set up my dialysis center about 2 months before to make sure we had a time.It worked out well.?When I was there they had a brochure sitting there was dialysis at sea.Me and my husband has never been on a cruise.I would love to do one of those cruises.Go to Alaska.Take Care
EDITED: Fixed smiley - okarol/moderator
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Icecream, thank you for your prayers.
I hope that someday you will be able to take that cruise to Alaska.
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Hi Joanniebop,
I'm so glad I came across your thread. I just post a thread about cruising while on PD this morning. My husband and I along with my sister and her boyfriend are going on a 6 days cruise to the Caribbean this December. This will be our 1st time on a cruise and 1st time for me to travel since I started CAPD 9 months ago. I'm scared to death. Mainly because of dialysis. Scared my supplies will not deliver on time.
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Rookiegirl, I am so excited for you and thoroughly understand your anxiety about doing CAPD at sea.
We have taken 2 cruises now since my husband has been on PD and it was a breeze.
I also had angst about the supplies being delivered to the ship and all I can say is that we sailed on two different lines and had no problems at all. The supplies were delivered on both occasions right to our cabin.
Most cruise lines are really familiar with the whole process. They really know what they are doing.
I have just a few helpful hints : take an over the door plastic hangy thing ( you know what I mean) so that you can hang your bags. Usually over the bed ,more than likely, there will be a framed picture, super bolted to the wall, and you can hang your bag on the plastic hook and hang the over the door part on the picture frame. My husband just preferred to relax in bed but I'm sure that you can also hang one over the door. They will give you a box of caps, but I brought extra just in case; all other supplies you need to bring your self.
Heating pad etc. etc. Bring an electrial power strip too! ( That's for any cruise, CAPD or not)
There is a great web site for cruising , if you don't know about it already, it's cruisecritic.com. Tons of info.
Which ship are you sailing?
If I can help with anything please don't hesitate to ask. I love talking cruise stuff. We've been on around 25 cruises. Love em love em.
Joannie
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Rookiegirl, I am so excited for you and thoroughly understand your anxiety about doing CAPD at sea.
We have taken 2 cruises now since my husband has been on PD and it was a breeze.
I also had angst about the supplies being delivered to the ship and all I can say is that we sailed on two different lines and had no problems at all. The supplies were delivered on both occasions right to our cabin.
Most cruise lines are really familiar with the whole process. They really know what they are doing.
I have just a few helpful hints : take an over the door plastic hangy thing ( you know what I mean) so that you can hang your bags. Usually over the bed ,more than likely, there will be a framed picture, super bolted to the wall, and you can hang your bag on the plastic hook and hang the over the door part on the picture frame. My husband just preferred to relax in bed but I'm sure that you can also hang one over the door. They will give you a box of caps, but I brought extra just in case; all other supplies you need to bring your self.
Heating pad etc. etc. Bring an electrial power strip too! ( That's for any cruise, CAPD or not)
There is a great web site for cruising , if you don't know about it already, it's cruisecritic.com. Tons of info.
Which ship are you sailing?
If I can help with anything please don't hesitate to ask. I love talking cruise stuff. We've been on around 25 cruises. Love em love em.
Joannie
Thanks for sharing. I do have some questions?
1) What type of hook did you use to hang the bag on a picture frame or door? Can I purchase this at Wal-Mart? or any hardware store?
2) I went on the cruisecritic.com and they mentioned to bring bungy cord for the door. Why? What kind of door would need a bungy cord?
3) Did you carry with you extra box of solutions, just in case? Baxter representative suggested for me to take 1 box. Now that AA is charging for checked bags I'm wondering should I do it anyway.
4) I take Epo shots that must stay cold and the balcony stateroom we are stating doesn't have a fridge. Do I really have to send my vials to housekeeping desk? I'm scared someone will tamper with it?
5) Did you guys book an excursion? Did you book through Carnival?
6) Did your hubby swim at the pool and ocean? Ever since I started PD, I'm afraid to go swimming anywhere because of possible infection and the ocean is in another country.
Sorry for asking so many questions. You know I'm a rookie at this. By the way, we are going on Carnival Destiny sailing on 12/06/08-12/11/08; destination Grand Cayman & Ochio Rios Jamaica.
Thanks in advance.
RG
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Hi Rookiegirl,
Hope that I can answer some of your questions:
The over the door hook is just a plastic piece that can be purchased at almost any store : dollar stores, grocery stores, wallmart etc.,
The bungy cord is used to hold the balcony door open. Some people like to hear the ripple of the water at night. With some ships, the air conditioning will automatically shut off if the door is left open.
We once took a few extra bags only because we spent our first night in Florida but not for any ship use. Don't know what good one box would do because if the suplies aren't there the first night , you won't be able to do much with one box. My suggestion to you would be to make sure that you call the day before you are to depart to make sure that everything is in the works, but really I don't think that you'll have anything to worry about.
I have always had a fridge in my room. If the cabin does not have one you can try and call the special service department that deal with medical issues and try to persuade them to put one in your cabin. If not how about a cooler? The ship should be able to put one in your cabin and your steward can replace the ice each day.
We never book excursions through the lines ( that is when my hubby was able to get around) we would sometimes just grab a driver and negotiate a price and hire him for the day. The lines are a lot more expensive than doing it your self, but on cruisecritic, you can find tons of info on your ports.
Gotta go right now, but I'll try to answer any questions you have.
Take care,
Joannie
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Thanks for updating and sharing your cruise with us. It gives others hope that they too can travel with this disease. :2thumbsup;
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Life with renal disease is too short as we all know, so why not enjoy your life and live it to the fullest.
For us it's was cruising. A truly relaxing form of vacation.
Chuck had a few mottos.
One was he worked hard ( and man did he work hard) and he played hard.
Don't want to have any regrets.
He is in the hospital again , has been for 10days, and the prognosis is not good.
I've tried to make his life as pleasurable and enjoyable as I possibly could for him no matter what stage of his disease.
Now I am his fighter. I am fighting for his life. I am not ready to give up or let go.
Each day that he is in the hopital, the worse his condition becomes and the more problems they find.
I've got to get him home.
Sorry I got off the cruise suject but again I'd be delighted to answer any questions.
Have a great day!
Joannie
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Joannie,
So sorry to hear that you and Chuck are having such a rough time right now. I'll be thinking good thoughts and sending hugs to both of you. Hang in there, Joannie, and remember to take care of yourself, too, okay? :cuddle; :grouphug;
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Joanie, I'm so sorry to hear that Chuck is in the hospital again and that things are so difficult. Please know that all my best thoughts are with you both and as extrememoosetrax said, take care of yourself also.
Big Hugs
Gail
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Joanniebop,
Thank you for taking the time to answer my cruise questions. It really help me feel more at ease.
On another note, I'm sorry to hear that your hubby is not feeling well. I pray he will get better and come home. Please let him know that we are all thinking and praying for the both of you.
RG
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Thanks everyone for your care, concern and prayers for us and you must know that this is the place that I feel at home. Here on IHD, because you all know what we are going through.
I was finally able to get him home today by stretcher and he is sleeping comfortably in his own bed.
Having him home will be a challenge, but I am definitely up for it mentally although physically I am afraid that I have not been taking care of myself and am not feeling too well. I am finding it very difficult to eat and have lost a great deal of weight. Everyone keeps telling me to eat , but I just can't.
Any suggestions?
I don't want to feel this way and I know that I've got to be at my best to take care of Chuck.
I don't know, maybe that now he is home things will get back to normal and I'll start eating again.
What I've just written I can't even say to my own family because I don't let on that there is anything wrong with me, I LIE TO MY FAMILY ABOUT WHAT I have eaten for the day, so that they won't worry. I have to put on the strong front.
Sorry to talk about myself but just had to let it out.
Thank for listening and if anyone has any suggestions I'd appreciate hearing from you.
Joannie
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Please don't ever be sorry to talk about yourself. YOU are important, to Chuck and to us and caregivers need care given too. If you're having trouble eating, can you try some of the meal replacement drink thingies, not the renal ones but others that will give you some nutrition to get by on? I think that caregivers are quite often overlooked as the bulk of concern goes to the patient but you're in this together and the stress is tremendous.
Biggest hugs to you Joanie, and talk about yourself as much as you need to, OK, we listen well.
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Monrein, thanks so much for your kind words and I do remember now that my Mother tried to tell me the same thing to drink the supplements that I have for Chuck ( always thought I was too young for those things).
I will try to drink them as often as possible.
Now, about Chuck.
Hospitals are so insulin happy that twice now they almost killed him.
( By the way, it seems like this thread should be moved but I wouldn't know how to do it )
In the hospital his count was down to 20. He was non responsive and had to be moved to ICU. I won't go into the details of his entire stay and all his problems but yesterday the nurse gave him a shot and sure enough this morning he was non responsive with a reading of 26. He started to throw up and I thought that was it. I couldn't get him to drink anything so I put dialyste solution in him and slowly but surely he is gradually coming back to us. I wouldn't dare call 911 and send him back to the hospital.
Thanks everyone for listening. I don't know what I'd do without you and IHD.
Joannie
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Joannie I'm so sorry to hear about Chuck and I do hope things will improve. Please look after yourself, I know how hard it is to eat when you feel so bad and have no appetite but tell yourself you have to stay strong to look after Chuck. Eat whatever you fancy, chips, chocolate, whatever - it doesn't matter what it is at the moment but you need the calories to give you energy. Try the drinks Monrein suggested or a smoothie if you really can't face food. I'm sending love and prayers for you and Chuck :grouphug;
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This Topic has been split. The balance of this thread has been moved here: http://ihatedialysis.com/forum/index.php?board=70.0
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