Disney on dialysis

[akhenaten]

Our last trip was this past July, dr. visit after our return home led to the discovery of why I felt so bad while we were there...kidney failure! Long story short, I found out I have polycystic kidney disease (yes, it is genetic, but no known family history). It has been a wild couple of weeks, with an 8 day hospital stay, placement of permacath, fistula surgery, and start of in center hemodialysis.

This thread is really interesting to me too. I found out I was in kidney failure due to Policystic Kidney disease while I was at Disney in 2008. I have been on incenter hemo for a year and a half. I am now planning a trip for Oct 2012 and find the whole prospect of traveling a little scary. Glad to know others have managed.

Petlady so sorry to hear about your recent diagnosis! i was also just in Disney this July

I also have PKD with no family history...
was diagnosed 9 years ago and was on dialysis for about a month last december... I had a transplant last january it was in a chain...
if you would ever like to chat let me know.

I also recommend a site called Ihatedialysis .com it was started by a patient who wanted to share info with other patients .. it is a wonderful support group .... not negative as the name implies...
Take care...
Carol in NJ

 

[ThePetLady7]

Petlady so sorry to hear about your recent diagnosis! i was also just in Disney this July

I also have PKD with no family history...
was diagnosed 9 years ago and was on dialysis for about a month last december... I had a transplant last january it was in a chain...
if you would ever like to chat let me know.

I also recommend a site called Ihatedialysis .com it was started by a patient who wanted to share info with other patients .. it is a wonderful support group .... not negative as the name implies...
Take care...
Carol in NJ

Hmm...seems PKD without a history isn't as rare as I thought.

I have been reading at IHD daily since I learned of it. Lots of information there. I'd love to hear more about your transplant experience. I just started all the paperwork to get signed up. DH is planning to get tested to see if he might be a match.

Susan

 

[Brandi1leigh]

I'm also on IHD. My user name is the same there, Brandi1leigh. It's a great resource and not nearly as negative as it sounds. Curious what y'all's usernames are there? The thing i love about IHD is that it often helps me answer questions I wouldn't even know to ask.

I literally found out I was in Stage 4 renal failure the day before I was scheduled to fly to Disney with 18 other people. My hemoglobins (sp?) were at around an 8. I still went to Disney, walked everywhere and had a fabulous time. Of course, I felt pretty bad and ended up getting a blood transfusion the week we returned home, but the trip was totally worth it. One of my clearest memories of the trip was sitting on the ground outside of Splash Mountain while everyone else was riding it. I was on the phone with my brand new nephrologist and the hospital trying to set up appointments. I didn't know at the time how serious it was. I certainly learned fast. LOL

I'm on the transplant list, but I'm an only child and my parents have health issues that make them ineligible to donate. The waiting list here is around 6 years for my blood type, so I haven't pinned my hopes on a transplant. If I get one great. If not, I can live on dialysis.

Anyway, I've been on incenter hemo for about a year and half. I certainly don't claim to know everything, but have gotten a crash course. I'm amazed by how many on this thread have PKD with no genetic background. I also thought it was pretty rare.

 

[akhenaten]

Petlady.. Susan... I would be happy to share my transplant experience with you. I am glad your DH is getting tested. My DH was also but even though he did not match me he still want to donate on my behalf so we went into the paired exchange /chain list. That is how I got my transplant.

Brandi1leigh on IHD I am Carol1987.

i was also surprised to see both of you also had no family history...

 

[Brandi1leigh]

Mine is due to my Sjogren's, which makes it more unusual, and almost impossible to find information about. I have no idea how quickly I'll get worse, what the usual course of the disease is, etc. I have an appointment with my rheumatologist tomorrow, so I'm hoping to find out more then. He's the one who diagnosed the kidney disease. Usually in Sjogren's it's due to Interstitial Nephritis, but I don't know for sure if that's what it is in my case yet.

It's weird how coincidences happen in life. I had never heard of Sjogren's before, but I'm a huge tennis fan and Venus Williams just announced that she has been diagnosed with the same thing. I remember when I was first diagnosed, it was very scary not having any kind of a time line and I scoured the internet looking for every bit of info I could find. Maybe now that a celebrity has come forward, more info will become available. Fingers crossed that it will be a long time before you progress so far that you need dialysis.

 

[Tink1960]

I want to thank everyone for this thread. I am 51 and was diagnosed with stage 4-5 ESRD (due to repetitive impact injury) in 2004. I managed to avoid dialysis until just recently. Had surgery on August 9 to place the pd tubing, will begin training for manual exchange the end of September. Thank you all for the info. especially the diet ideas. I have always had a problem controlling potassium but recently phosphorous removal is beginning to stop. We are headed to Disneyland Oct. of 2012. I am really lucky in that my pd nurse is also a Disneyland nut.

I will check out site I hate dialysis. Once again thanks, it is nice to know that I am not alone.

 

[Brandi1leigh]

I will check out site I hate dialysis. Once again thanks, it is nice to know that I am not alone.

It is always nice to know that others are out there! Disney nuts with ESRD unite. LOL

 

[akhenaten]

It is always nice to know that others are out there! Disney nuts with ESRD unite. LOL

 

[funnygarcia]

Just passing through...
My dh has been on dialysis for 12 years, the last 3 years he has been using the NxStage system for hemodialysis at home.. we absolutely love it!
If available at a center in your area, I highly recommend checking it out.

My husband eats a more typical diet (except for phosphorus which is not as easily dialyzed off), no fluid restrictions, no longer on blood pressure medications.
He has traveled with the machine on two occasions (by plane), he brings the machine and daily supplies (needle sets, heparin, guaze, tape, etc) and Nx Stage ships the cartridges and dialysate fluids to his location. Being able to choose when and where to dialyze has been an awesome experience.

He does most of his own treatments now. I help with pulling needles (buttonholes) and taping his sites. In a pinch, he can do it all himself if no one is available to help.

The supplies take up one closet, the machine and the dialysate tub take up as much room as an end table. No plumbing changes necessary.

Our training was about 2 1/2 weeks, most people will need 3-4 weeks. He had buttonholes already established, had already started placing his own needles in center. After 9 years of in-center, he had enough experience with dialysis in general to grasp how the machine works.


Read the threads on IHD under home hemo/NxStage to get an idea if this is something that would work for you. Especially if you are younger than the average patient, work, go to college, have a family or plan to travel;home hemo would be a good fit for you! In-center is not the only modality available. Not to mention, frequent dialysis is one of the BEST ways to stay healthy while waiting for a transplant. (Or in my husband's case, an alternative to transplant. I was his donor, lasted 3 years and rejected. He has chosen to not pursue another transplant at this time. )

 

[Brandi1leigh]

Just thought I would mention that Sue added this thread to the Disabilities FAQ. I asked her to, hoping that more ESRD patients might connect here.

 

[akhenaten]

Just thought I would mention that Sue added this thread to the Disabilities FAQ. I asked her to, hoping that more ESRD patients might connect here.

That's great!

 

[nmmom95]

I want to thank everyone for this thread. I am 51 and was diagnosed with stage 4-5 ESRD (due to repetitive impact injury) in 2004. I managed to avoid dialysis until just recently. Had surgery on August 9 to place the pd tubing, will begin training for manual exchange the end of September. Thank you all for the info. especially the diet ideas. I have always had a problem controlling potassium but recently phosphorous removal is beginning to stop. We are headed to Disneyland Oct. of 2012. I am really lucky in that my pd nurse is also a Disneyland nut.

I will check out site I hate dialysis. Once again thanks, it is nice to know that I am not alone.

I went to WDW on pd twice. The diet on pd is much less restrictive than on hemo. I had a kidney transplant this past July. My husband donated as part of a paired exchange, since he was not a match for me. If you have any questions about pd or traveling on pd, please ask or PM me. It seems like a lot at first, but it's really easy. Good luck!

 

[akhenaten]

I went to WDW on pd twice. The diet on pd is much less restrictive than on hemo. I had a kidney transplant this past July. My husband donated as part of a paired exchange, since he was not a match for me. If you have any questions about pd or traveling on pd, please ask or PM me. It seems like a lot at first, but it's really easy. Good luck!

congratulations on your transplant!

 

[nmmom95]

congratulations on your transplant!

Thank you! Congratulations to you, as well!

 

[DvcDoc]

I'm so glad to have found this thread. I do PD and was looking for information on both traveling as well as traveling to WDW and what to expect. We were originally going to WDW 12/31 - 1/8, but had to cancle the trip because our daughter couldn't get the time off from her work. We will re-scheddule later this year. I had Baxter all set up for delivery, had coordinated with the Central Florida Kidney Center just in case something had gone awray and coordinated with WDW on using the First Aid stations to do my pre-cycler manual exchange. I think I hit all the wickets necessary to have as normal a vacation as possible. If you think I missed anything, let me know, as I'll likely be doing the same thing in June.
And I also post over on IHD, what a great resource for all things kidney related!

 

[Jedana]

Just passing through...
My dh has been on dialysis for 12 years, the last 3 years he has been using the NxStage system for hemodialysis at home.. we absolutely love it!
If available at a center in your area, I highly recommend checking it out.

My husband eats a more typical diet (except for phosphorus which is not as easily dialyzed off), no fluid restrictions, no longer on blood pressure medications.
He has traveled with the machine on two occasions (by plane), he brings the machine and daily supplies (needle sets, heparin, guaze, tape, etc) and Nx Stage ships the cartridges and dialysate fluids to his location. Being able to choose when and where to dialyze has been an awesome experience.

He does most of his own treatments now. I help with pulling needles (buttonholes) and taping his sites. In a pinch, he can do it all himself if no one is available to help.

The supplies take up one closet, the machine and the dialysate tub take up as much room as an end table. No plumbing changes necessary.

Our training was about 2 1/2 weeks, most people will need 3-4 weeks. He had buttonholes already established, had already started placing his own needles in center. After 9 years of in-center, he had enough experience with dialysis in general to grasp how the machine works.


Read the threads on IHD under home hemo/NxStage to get an idea if this is something that would work for you. Especially if you are younger than the average patient, work, go to college, have a family or plan to travel;home hemo would be a good fit for you! In-center is not the only modality available. Not to mention, frequent dialysis is one of the BEST ways to stay healthy while waiting for a transplant. (Or in my husband's case, an alternative to transplant. I was his donor, lasted 3 years and rejected. He has chosen to not pursue another transplant at this time. )

/seconding the Home Hemo treatments

My DH does home hemo (Nxstage, through Davita clinics). He uses his fistula, sticks himself, and runs his treatment. Basically, I just set up the machine and clean up when he's done.

He feels so much better than when he was in center--those center machines are rough on the system! It takes about the same amount of time as in center, but you are at home--watching tv or reading to the kids or sleeping in your bed (if doing nocturnal).

 

[Brandi1leigh]

So glad to see this thread is staying active and that there are some new faces! Welcome! I'm a big believer in the more info the better about all types of dialysis. The more you know, the better to choose the right treatment for you or your loved one.

 

[sandynd]

Hi everyone! My DH is on home hemo with a Fresenius machine (NxStage is not available in Canada) and we would like to plan another trip to Disney. However, the machine is not portable, so we would need to find another way to do his dialysis while we're there. It's obviously going to cost extra, and it's not covered under our insurance, so I'm looking for anyone with experience as to how much it costs. Would it be any cheaper because we would bring all his supplies and he would run his own treatment? Thanks for any info! Before I found this thread, I also posted another:
http://www.disboards.com/showthread.php?t=2864062

so either way, hopefully I can find someone with first hand info!

 

[RellaSprinkles]

Glad to see this thread! My DH (34) started hemodialysis in November & just recently transitioned to PD (manual exchanges at home). We are liking the flexibility of PD, but he still feels uncomfortable from that "full" feeling much of the time.
He will be starting the nighttime cycler in a month or so & we are scheduled to be at Disney in early March.
We are also starting to research pancreas/kidney transplants.. although that process is very daunting.
I think it's helpful to know that life can go on & we can still enjoy the things we have in the past (like Disney!)

 

[DvcDoc]

I know there is a DaVita clinic very close to property that does arrange for tourists. There is also the Central Florida Kidney Center that is a bit further away, they are an independant. I do PD, and was taking my cycler with me so I wasn't looking for a center other than something to fall back on if I had a problem. I was set up with the CFKC as I use an independent in Colorado. You can google either one of the centers and contact them directly to see what they will allow or not.
HTH