I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: MrNaturalAZ on November 02, 2017, 12:37:49 PM
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I'm wondering how many people have moved, or considered moving, in anticipation of dialysis. Either rural dwellers moving into town to be closer to a center, or home dialysis (PD or HHD) folks moving to a bigger place to have room for all the supplies and equipment. I suppose I could make a poll, but I'm more interested in thoughts and stories than simple numbers.
Here's my situation. I live in a rural area, about 50 miles away (so, 100 mile round-trip) from my regular doctor and my neph. The absolute closest D center is about 40 miles away. Same with nearest full-service hospital (tho there is an urgent care "mini-hospital" about 25 miles away).
My neph has recommended PD primarily because of how far away I live (tho I realize it also offers other benefits, and might well have considered it regardless of where I live). So that might help mitigate the distance issue, but creates a different challenge. I live in a tiny motorhome (<150 sq. ft.). It's adequate space for me to live in, but no room for the mountain of supplies I expect I'll need to store for PD.
So here is my dilemma. If I do PD I'll need to move to a bigger place, somewhere. If I end up on HD, It would make sense to move into town. Even without considering time spent traveling, the fuel cost alone would just about equal the difference in rent I'd have to pay (city living is more expensive). Of course there are other trade-offs. I lived in the city for 30 years before moving out here to the boonies, where i've been for the past ten years. Each lifestyle has its advantages and disadvantages. But there's more....
I've been doing some research, and it seems that regardless of modality, dialysis patients tend to fare better and live longer in the city than do rural-dwelling patients. So all this is suggesting that maybe it's time to move back to the city. What say you?
TL;DR -- Rural living is more relaxed and less expensive, while City dwelling is more convenient but more expensive. Add Dialysis to the mix, and the cost tends to balance out, and studies indicate that city dwellers have a better prognosis than rural residents. I'm thinking I should probably move now, while I have the time and energy, before I'm forced into a decision when I start D. Your thoughts, experiences, and opinions, please?
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Short answer is if you think you will be on HD (not at home) it probably would be convenient to be as close as possible to the center. A 3.5 hour treatment is really 4-4.5 with normal hookup and take off time.
I work in the city and took public transportation to the center so I left at 1:40 for a ~3 PM hookup, then maybe it took 10-15 minutes for my wife who picked me up to bring me home. I probably should have changed to a center downtown where I could bike over in 10-15 minutes and then taken public transportation home (~40-60 minutes depending on how I hit my Metro to bus connection).
Another thing is that if you think you will get to a point where you rely on transportation to and from the center I highly recommend moving very close to the center so you can walk yourself over. In my former center there are various people waiting for cabs or Metro Access, all types of transport outside of family pickup or self driving seem to have huge wait times which could make a 3.5 hour treatment take an entire day. In general I think that most of those people could have walked/pushed their walker across the street to the tall older apartment building and they would have saved 1-4 hours on their commute, plus gotten some beneficial exercise.
I always feel a little cautious of the stats on dialysis life expectancy. In that rural stat you have a lot of people who live in climates that are colder than AZ and they might miss a lot of treatments because of the weather and difficulty getting to treatments.
I like the idea of thinking about this now. Lets say you do PD but then end it after a major infection, that would not be a good time to think about moving...
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I only know about the UK and the Netherlands and in both countries I moved to a city with a good reputation nephrology department when D was approaching. I find small hospitals scary.
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I regularly travel to a house in the adirondacks and you cant get more rural than that. I go to a clinic when I am up there that is 30 miles from my house. Some of the patients travel 90 miles each way for treatment. I have heard that Fresinius is looking into opening a center close to my house, the othe factor up there is a Saratoga clinic offers a home Dialysys that is remotely monitored that does not require a partner.
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a Saratoga clinic offers a home Dialysys that is remotely monitored that does not require a partner.
Remote monitoring for home hemo patients is a legal requirement in NY, which has given rise to solo home hemo in that state.
NxStage was recently approved for solo home hemo, so I would expect FMC and others to hop on the bandwagon. I'll ask one of the VPs at FMC how this is progressing.
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We live pretty much out in the country. It's about 18 miles and three small towns to my Fresenius clinic. Not really a problem unless we have an ice storm, then I simply punch that little button on the dash of my truck and drive in anyway, hoping staff has made it in. One of the tech's drives a Jeep and lives just a mile or two up the road from me. She ain't afraid of a little ice and snow.
I like to think growing up in the mountains has its advantages, weather won't stop me.
Power outages may be a whole different ball game. Our clinic has their own stand-by generator. I haven't asked about water.
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I live less than 5 miles from the clinic that supports my home HD, and about 12 miles from the clinic I used to use.
When I travel to TX, I told my host the address of the clinic I had to visit. I was told that it was "Really close, it's only 40 miles or so". Apparently, that qualifies for "really close" in rural TX.
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I concur that PD supplies can be a beast. It is the reason that I did not do PD. Even though I have a three-bedroom home, I would have had to give one of our bedrooms over to the supplies and I did not want to do that, plus I've had knee surgery so carrying boxes of supplies up and down the stairs just wasn't going to be in the cards for me. My HHD supplies fit in a closet in our rec room right next to where I was doing HHD, so once the boxes went down the six stairs from the front door to the rec room, that was it.
As far a distance from a center, it can depend not only on distance but traffic. I started in-center at a clinic that was two stop signs from my house. I would leave work at 2:00, get hooked up by 3:00, off at 7:00 and home no later than 7:15 if I drove slowly. Once I decided to switch to home hemo, I was at a Fresinius clinic that didn't have NxStage. They wanted me to switch to one of their clinics that was 10 miles away from my house. Anyone who knows Chicago traffic knows that 10 miles can be an hour commute at a bad time of day or in bad weather. I switched to a DaVita clinic that was only 5 miles away and boy was Fresenius mad but that's a story for a different thread.
I do agree that if you think you won't be able to drive after a while, that being closer can be a godsend. I agree with iolare that the clinic was full of patients just sitting and waiting for transport, which is no way to spend your time if you can avoid it.
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What people who live in crowded suburban areas is the driving times involved in going any distance in a rural area. I live 5 miles from my clinic in NJ, and 32 miles from my clinic in the Adirondacks. It takes between 20 to 25 minutes to go the 5 miles in NJ, and 30 to 35 minutes to go the 32 miles in the Adirondacks. Les’s traffic and much fewer traffic lights. The best way of describing how much in the boonies is that the nearest McDonalds is 30 miles away.
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I'm hoping for the best of both worlds, town and country.
My aim is to move to a large town sandwiched between the countryside and the sea (for those who know the area; Great Yarmouth, Gorleston, or Caister). The town has a hospital with a dialysis clinic (on the border between Gorleston and Great Yarmouth) that has a good name for itself, and the nearest hospital with a major kidney unit is just over ten miles away (Norwich).
The advantage there is that I am in town, near a good hospital, but still only a short walk to the countryside. And it is just a short drive or bus journey to be "deep in the country".
Plus, only a very short walk to the sea.
However, that has been my aim for several years, and I'm still not there.
:(
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................. the nearest McDonalds is 30 miles away.
I keep telling the Wife, there isn't much good for us at McD's except maybe the side salad, if we leave off the dressing.
We live smack dab between two small towns. Populations maybe 4K. Each has a McD, both about 4 miles from our house in opposite directions.
I try to stay out of both of them. Wife is addicted to their Diet Coke.
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I keep telling the Wife, there isn't much good for us at McD's except maybe the side salad
Actually, being someone who loves crap food, but would rather not die of "complications related to...." I did a check on Potassium, Phosphorous, calcium levels in several fast food items. At McD's the worst item for those of us with a knackered kidney is the salad. Better off with a nice big burger (by a long way).
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I LOVE Salads. I will need to remember to start taking another binder.
I have pretty much cut breads out of my diet. My first two years on PD by cutting out breads and flour as much as possible I lost right about the 100 pounds that I gained since breaking my back and Retiring. Still have another 20 to go but give me a couple more years.