Home dialysis at WDW

FortForever · Aug 7, 2016

Has anyone done this?

I just found out 4 days ago that my kidneys are failing quickly, out of the blue. I'm low Stage 4 from normal six months ago. Obviously, this is a huge shock and I'm still trying to let the reality of it sink in. I don't have diabetes or high blood pressure, and doctors do not know why the sudden failure.

Now, I've been told that unless they figure it very quickly, I will likely have to start dialysis within months. I will want to do it at home or not at all. I have no idea how long they will make me do it at the hospital or how long it takes to train me to do it myself. I just hope this doesn't somehow interfere with our December reservations.

This is our "come back" trip after being away 3 years while my son recovered from life -altering injuries. Everyone is looking forward to it, myself included. We had planned to get back to our schedule of spending 5 days a month through the fall and winter. Now I've been hit with this shocking news.

We live only 90 minutes away, so drive a van down and can easily bring any equipment. I'm not only concerned about how this is going to work, but also how I'm going to feel. I feel like sleeping 24/7 right now and nauseated all the time. I can't imagine it can be worse. Surely, a machine working as a kidney will make me feel better, right?

Bianca and Bernard · Aug 8, 2016

My husband did HHD for 9 years before he got his new old kidney last year.

Yes it's possible to do HHD at WDW. We had a bag to transport the machine (are you anywhere near Jax? We still have the roller bag if you need one; fits the NxStage .) All med supplies (needles, heparin, cartridges, etc) went in a locked suitcase. We also brought extra blue pads to cover extra surfaces around tje machine.

Make sure to bring a sharps box and black trash bags to wrap cartridges in.

If you have any questions, about HHD or doing it at WDW, feel free to pick my brain. A good source is a HHD group Home Dialyzers United (check FB for them).

ETA: dh felt horrible when incenter (5 months). HHD was better.

gap2368 · Aug 8, 2016

I am not sure if you are flaying but I have heard ( and I have done this myself ) that medical things fly free if all that is in one bag is medical things you can use it as a carry on and it dose not count toward your one bag one personal thing limit ( al thought it has to fit under your set or in the over head) I have flown on DELTA on a full flight were they are asking people to check bags and offering it for free since the plane was full

Denise W · Aug 8, 2016

gap2368 said:
I am not sure if you are flaying but I have heard ( and I have done this myself ) that medical things fly free if all that is in one bag is medical things you can use it as a carry on and it dose not count toward your one bag one personal thing limit ( al thought it has to fit under your set or in the over head) I have flown on DELTA on a full flight were they are asking people to check bags and offering it for free since the plane was full

If you read the OP, they drive down in a van and live only 90 minutes away. They don't need to fly.

Denise

gap2368 · Aug 8, 2016

Denise W said:
If you read the OP, they drive down in a van and live only 90 minutes away. They don't need to fly.

Denise

That right well the info is out for anyone else that flys

seashell7290 · Aug 8, 2016

The only way to do dialysis at home is to do peritoneal dialysis. I would figure out if what type of dialysis you are going to do before thinking about the logistics because the types are quite different. I am sorry to hear your kidneys are failing

Hopefully you get a diagnosis soon.

FortForever · Aug 8, 2016

Bianca and Bernard said:
My husband did HHD for 9 years before he got his new old kidney last year.

Yes it's possible to do HHD at WDW. We had a bag to transport the machine (are you anywhere near Jax? We still have the roller bag if you need one; fits the NxStage .) All med supplies (needles, heparin, cartridges, etc) went in a locked suitcase. We also brought extra blue pads to cover extra surfaces around tje machine.

Make sure to bring a sharps box and black trash bags to wrap cartridges in.

If you have any questions, about HHD or doing it at WDW, feel free to pick my brain. A good source is a HHD group Home Dialyzers United (check FB for them).

ETA: dh felt horrible when incenter (5 months). HHD was better.

Thank you! I may be sending you personal messages in the near future. We live in Lake City.

seashell7290 said:
The only way to do dialysis at home is to do peritoneal dialysis. I would figure out if what type of dialysis you are going to do before thinking about the logistics because the types are quite different. I am sorry to hear your kidneys are failing Hopefully you get a diagnosis soon.

This shows how sudden this all is to me. I didn't even realize there were different types. I am just completely freaked out and lost. I will go look up the different types. There is no way that I'm comfortable dealing with a medical environment a few times a week, but will have to go check the pros and cons. Doctors have given me so little info. I even had to look up my own diet as I wait for the dietitian appointment. Not even a pamphlet! They are kind of acting like it's no big deal, but I feel like I am dying.

FortForever · Aug 8, 2016

seashell7290 said:
The only way to do dialysis at home is to do peritoneal dialysis. I would figure out if what type of dialysis you are going to do before thinking about the logistics because the types are quite different. I am sorry to hear your kidneys are failing Hopefully you get a diagnosis soon.

When I first Googled peritoneal dialysis and found out that it required a stomach, I nearly panicked. I had gastric sleeve about five years ago and not much of my stomach left. However, went on to read that it's not a problem and this surgery is even performed on patients while they are on peritoneal dialysis. Most definitely the way I'll go if they let me.

Thanks for filling me in!

None of these doctor appointments or test results are moving fast enough for me. I just feel like nobody is in any big hurry.

Bianca and Bernard · Aug 9, 2016

seashell7290 said:
The only way to do dialysis at home is to do peritoneal dialysis. I would figure out if what type of dialysis you are going to do before thinking about the logistics because the types are quite different. I am sorry to hear your kidneys are failing Hopefully you get a diagnosis soon.

That is incorrect. You can do hemodialysis at home.

OP, do your research. Some people do better with incenter hemodialysis; others with peritoneal; and some do well with home hemodialysis. Find a neurologist that will listen to you and work with you on your treatments.

Make sure you get paperwork in ASAP for Medicare/Part B/Part D, even if you have private insurance.

Paula Sedley-Burke · Aug 9, 2016

I am sorry to hear about the shocking news. I don't have any info only that due to my medical needs Disney provide sharps boxes if you need I know that. Good luck. Don't give up. Anything is possible. I am tube fed, have daily injections and a comprimised immune system. I still have my FP+ booked for my wife and I for 7 DMT in September! Get a DAS pass...

FortForever · Aug 10, 2016

Bianca and Bernard said:
That is incorrect. You can do hemodialysis at home.

OP, do your research. Some people do better with incenter hemodialysis; others with peritoneal; and some do well with home hemodialysis. Find a neurologist that will listen to you and work with you on your treatments.

Make sure you get paperwork in ASAP for Medicare/Part B/Part D, even if you have private insurance.

I haven't met my specialist doctor yet, the one who is supposed to set up dialysis when I need to start. If I don't have an appointment with him/her by tomorrow, going to call and see what's up. Thanks very much for the info.

I'm praying it's someone who is patient with me due to my brain feeling like a tornado is going on up there. I just can't believe this could happen so quickly.

Can I get Medicare based on needing dialysis? I am 52.

Paula Sedley-Burke said:
I am sorry to hear about the shocking news. I don't have any info only that due to my medical needs Disney provide sharps boxes if you need I know that. Good luck. Don't give up. Anything is possible. I am tube fed, have daily injections and a comprimised immune system. I still have my FP+ booked for my wife and I for 7 DMT in September! Get a DAS pass...

Wow, you are my hero! I'm not ready for my life to be over yet. I feel like I have just gotten to a good point where all my kids are grown, and my disabled son is doing well. Glad to hear others don't let these kind of things slow down the fun!

Thanks for letting me know about the sharps containers.

Bianca and Bernard · Aug 10, 2016

FortForever said:
I haven't met my specialist doctor yet, the one who is supposed to set up dialysis when I need to start. If I don't have an appointment with him/her by tomorrow, going to call and see what's up. Thanks very much for the info.

I'm praying it's someone who is patient with me due to my brain feeling like a tornado is going on up there. I just can't believe this could happen so quickly.

Can I get Medicare based on needing dialysis? I am 52.

Wow, you are my hero! I'm not ready for my life to be over yet. I feel like I have just gotten to a good point where all my kids are grown, and my disabled son is doing well. Glad to hear others don't let these kind of things slow down the fun!

Thanks for letting me know about the sharps containers.

Yes, End Stage Renal Disease makes one eligible for Medicare. DH was only 38 when he started receiving Medicare. He will still have it for another 18 months (3 years post-transplant)

We have dropped the supplemental ($2400 every quarter...if it wasn't for the National Kidney Foundation paying the premiums, he wouldn't have had it. They have a fund to help.) Part B is about $365 every quarter (which we pay OOP for now). Can't remember what the Part D cost was. But get signed up for everything now..DH didn't and had all sorts of problems.

There are several different companies that do HHD. We went thru Davita, and used NxStage equipment.

awalker1015 · Aug 10, 2016

I am a renal nurse and yes you can do both peritoneal and hemodialysis at home. Peritoneal uses your body as a natural filter and involves the placement of a small catheter in the abdomen. Hemo involves vascular surgery to create a fistula access. Both are good methods. Lately I've seen more of our home patients choose peritoneal.

Sorry about your diagnosis but don't lose hope. I also hope you see your nephrologist soon. Sudden loss of function like that can mean many things and it's possible there is something acute going on that can be addressed before dialysis is needed. We see that a lot in our practice. Hope you feel better soon.

CynJ · Aug 12, 2016

I have no experience with dialysis but wanted to give you a virtual hug and some good wishes.

I will give you this piece of advice though - something we learned when we almost lost my SIL to TTP a couple months ago- have someone you trust go with you to the specialist appointment. Someone who is a calm, logistical thinker. My brother was a bag of nerves with his wife intubated in the ICU getting blood and plasma infusions and he wasn't thinking clearly to ask questions, to write stuff down, etc. That was my job and it allowed him to be scared and worried and all the other thousand emotions he was feeling. You'll have your own set of emotions going on at the specialist's office- count on someone else to do the detail stuff.

: :hug:

:

FortForever · Aug 16, 2016

awalker1015 said:
Sorry about your diagnosis but don't lose hope. I also hope you see your nephrologist soon. Sudden loss of function like that can mean many things and it's possible there is something acute going on that can be addressed before dialysis is needed. We see that a lot in our practice. Hope you feel better soon.

Thank you for this. It gives me hope. My PCP is so confused and she admitted that she has no clue what it going on. They repeated the blood work to make sure it wasn't a lab error. It was not. Apparently, unknown to me, they were waiting on the newest results before sending referral. They have now actually sent one, but still waiting on the phone call to make the appointment with the specialist.

CynJ said:
I have no experience with dialysis but wanted to give you a virtual hug and some good wishes.

I will give you this piece of advice though - something we learned when we almost lost my SIL to TTP a couple months ago- have someone you trust go with you to the specialist appointment. Someone who is a calm, logistical thinker. My brother was a bag of nerves with his wife intubated in the ICU getting blood and plasma infusions and he wasn't thinking clearly to ask questions, to write stuff down, etc. That was my job and it allowed him to be scared and worried and all the other thousand emotions he was feeling. You'll have your own set of emotions going on at the specialist's office- count on someone else to do the detail stuff.

::

Thanks for the hugs :grouphug:

Great advice and I will absolutely take it!

tinkerpea · Aug 22, 2016

I'm so sorry,
I haven't had this personally but have had many treatments on my kidney and was hospitalised for 7 months in my twin pregnancy due to severe kidney problems stenting needing done every 3wks due to blocking etc.
Also just had my 7th major head surgery after thinking that I was done with treatment back in 2014, I had my 6th head surgery and a round of chemotherapy to complete treatment, then in jan2015 I got bacterial meningitis ( from the infection in my skull we thought we had treated with surg, that unfortunately managed to spread) so i had treatment then a picc line in for 3 months with 3 times daily treatment at hospital! ( luckily the hospital was 5 mins away) but still hard when you have a husband in the military and 3 children.
I then got a shock when I got very sick a few months ago went I to hospital for 13 days and came put after having another head surgery on my bday! Were booked for disney on the 28th September and we fly from the UK.
Life throws some real rubbish at us sometimes be strong you will get through it! I've totally wanted to give up many times pull a duvet over my head amd forgot I exist!! Then my kids come and grab that duvet and pull me back to reality lol
I'm 31 and this all started when I was 20.
Good luck hang in there

kidneymomma · Aug 23, 2016

Take a breath and do research; home is PD=peritoneal dialysis which can be HOURS LIKE ALL NIGHT hooked up to the machine and can take a long time for a child to learn the right fill volume to properly clean your body. Hemo dialysis is done in a center a few times a week only a few hours a week. Some people don't have a choice it's one or the other because one way doesn't work for them. My son was born with chronic kidney disease stage 4 and has improved to stage 3. You will need to find an amazing nephrology team to help you and take deep breaths ask tons of questions. This trip might not GI the way you planned.

Bianca and Bernard · Aug 24, 2016

kidneymomma said:
Take a breath and do research; home is PD=peritoneal dialysis which can be HOURS LIKE ALL NIGHT hooked up to the machine and can take a long time for a child to learn the right fill volume to properly clean your body. Hemo dialysis is done in a center a few times a week only a few hours a week. Some people don't have a choice it's one or the other because one way doesn't work for them. My son was born with chronic kidney disease stage 4 and has improved to stage 3. You will need to find an amazing nephrology team to help you and take deep breaths ask tons of questions. This trip might not GI the way you planned.

Again, Hemo dialysis can be done at home. My husband did 6 days a week, 4 hours a day.

FortForever · Aug 27, 2016

I still know nothing more than I did when I originally posted this thread. Still waiting on the specialist to call me. During that time, they managed to send referral for MRIs on my knees, I had that done, and referral to orthopedic, where I have an appointment Monday. My kidneys, which could cost my very life, seem to be on the back burner. I called and asked for doctors name to call for appointment myself. They said I have to wait two weeks before they will give it to me. They claim professional courtesy to give them time to reach me first.

kidneymomma · Aug 27, 2016

FortForever said:
I still know nothing more than I did when I originally posted this thread. Still waiting on the specialist to call me. During that time, they managed to send referral for MRIs on my knees, I had that done, and referral to orthopedic, where I have an appointment Monday. My kidneys, which could cost my very life, seem to be on the back burner. I called and asked for doctors name to call for appointment myself. They said I have to wait two weeks before they will give it to me. They claim professional courtesy to give them time to reach me first.

That sounds like wrong!! What are your labs do you know? If your kidneys ares failing get on the phone and get an appointment with a nephrologists ASAP!! If I had not called the fetal institute myself where my son had his fetal surgery he would not be alive. Be your own advocate!

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