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Author Topic: We need (WANT!) to travel to Florida  (Read 3173 times)
frankswife
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« on: March 10, 2013, 08:40:11 AM »

Our son is getting married in Florida in May. We're in NY. If I dont go, my son will have no family attending his wedding. I cant leave Frank as there is no one to care for him. I told his SW back in Oct about it, gave her the address where we'll be (twice) and she kept forgetting about it. Is it too early to set it up, or am I supposed to do it myself? Now she's gone and another SW has taken her place so I guess I'll need to start all over. Frank is very, very apprehensive about going to a different center even for a couple times. It's my plan to have him dialyze here early Thurs, then leave right after. We're driving down but we have 3 drivers so I figure we can make it in 20 hours. I hope we can get an early chair time down there Sat as the wedding is at 4 pm. Then have him dialyze there early Tues and leave right after to come home. Does this sound workable? Anything I should look out for/be worried about? Frank is scared a new center is going to hurt him. I wish I could reassure him.
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frankswife
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« Reply #1 on: March 10, 2013, 09:39:23 AM »

This is actually the same son we were going to visit at Thanksgiving but never did; they eloped in July but are have thier reception in May. Just wanted to clarify if someone saw the other thread and was confused ;D
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"If we all abandon our posts, who then will stand?" St. Augustine
Bill Peckham
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« Reply #2 on: March 10, 2013, 11:52:37 AM »

I would call/email units to identify one that accepts visitors. If they do accept visitors you'd need to see if they could accommodate your preferred schedule. If they can they will likely have a visitor's packet that will have to be completed. It may require additional blood work and or other tests. I would ask the unit you would like to visit to fax/email their packet to you and then hand carry it to your SW.


Have you identified the unit you would like to visit?
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
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bevvy5
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« Reply #3 on: March 11, 2013, 03:07:17 PM »

The biggest issue we've found is getting the time you want.  That being said, when we've explained that we're flying on this day so need dialysis this day, we've been successful.

We've only travelled a couple of times, but I find the clinic myself, make sure they take visitors, give them the dates, etc.  Give them the contact details for our unit and then let the unit know.  Then it's just riding herd on everybody and I usually remind our unit a month ahead of time, call where we're visiting and go from there.  Frankly, it usually takes a few more calls as our unit will say everything is done and when I call to confirm, where we're visiting says they don't have everything.  So it can be a bit of back and forth.

We've only taken three vacations since hubby started back on hemo and have a third planned in October where we have our slot booked in California.  So we are certainly not as experienced as Mr. Peckham when it comes to travelling.

I'm not asking the following question to be critical but am just a bit nosy.  Am I mistaken or do you use NxStage?  Couldn't you take it with you?  I thought that was one of the advantages - not as portable as PD, but doable.  Just curious as we are Canadians and don't have NxStage as an option here.
« Last Edit: March 11, 2013, 03:08:51 PM by bevvy5 » Logged
frankswife
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« Reply #4 on: March 11, 2013, 06:25:30 PM »

No we dont do nxtstage. We dont even know what that is. Isnt it home PD?  Frank is in-center.
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"If we all abandon our posts, who then will stand?" St. Augustine
noahvale
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« Reply #5 on: March 11, 2013, 07:40:20 PM »

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« Last Edit: September 21, 2015, 06:17:45 PM by noahvale » Logged
frankswife
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« Reply #6 on: March 12, 2013, 08:14:37 AM »

Thanks Noah for a very thorough and pleasant reply. It is appreciated.
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lmunchkin
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« Reply #7 on: March 12, 2013, 05:25:43 PM »

FW, we do NxStage!  And I personally find it much easier to work with than any other modality (so far).  We have made a couple short trips with it and one long trip back in 2011.  In fact, it was Florida we went to.  The machine is very mobile, little awkward at times, but not a problem!  Just put that puppy on wheels and let it roll!

We loaded the machine in our Van, supplies and go whenever we want.  As long as you have a 110 outlet to plug in to, you are good to go.  Hope to make a trip to Texas this year, if our finances allows. 

We don't have to call anyone to schedule or make arrangements ahead of time.  This little machine was designed specifically for people to be able to take anywhere they want.  Not be tied down or stationary so as complicated to move.  Quite the opposite.  I can set this machine on my dolly (which can be switched to four wheels) and roll it out on our deck and hang bags and do him outside. 

We did PD too.  But never traveled much with it, but I do know, you can go with it too!  PD just never really cleaned John, but was a good modality while we used it.  I did find PD, alot harder on me as the spouse, due to the heavy lifting.  PD machine was much more different even just a few years ago than today, or so I hear!

Its ashame FW, that you guys don't already have NxStage.   You can go whenever you want, without worring about scheduling.  The only thing that we do, is we do let his Neph & clinic know we are leaving.  The clinic gave us the bags to take on the trip. 14 days worth!!!  That is alot of boxes, but they fit perfectly in the back of the Van.  When we got to our destination, we just brought in what we used and the rest stayed outside in the van.  We didn't unload anything, but the machine.  It was awesome.!

I know there is nothing to Love with this disease, but since John has been dialysising, We do Love NxStage!  It has really helped our situation alot.

Hope you can go FW!  You need some me time & don't let Dialysis rule your life too, make it work for you instead!

Good luck & God Bless,
lmunchkin :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
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« Reply #8 on: March 13, 2013, 10:39:01 PM »

I'd definitely be bugging now, but unfortunately, you do have to do the footwork yourself to find a unit that will take you.  Sometimes there are tests that need to be done within a few weeks of arriving, like mrsa or vre swabs, chest xrays or ecgs.  It depends on the unit.  Being Canadian, I also have to find a unit I can afford, cuz I have to pay upfront when I go to the US
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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Epofriend
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« Reply #9 on: March 19, 2013, 05:27:03 PM »

Our son is getting married in Florida in May. We're in NY. If I dont go, my son will have no family attending his wedding. I cant leave Frank as there is no one to care for him. I told his SW back in Oct about it, gave her the address where we'll be (twice) and she kept forgetting about it. Is it too early to set it up, or am I supposed to do it myself? Now she's gone and another SW has taken her place so I guess I'll need to start all over. Frank is very, very apprehensive about going to a different center even for a couple times. It's my plan to have him dialyze here early Thurs, then leave right after. We're driving down but we have 3 drivers so I figure we can make it in 20 hours. I hope we can get an early chair time down there Sat as the wedding is at 4 pm. Then have him dialyze there early Tues and leave right after to come home. Does this sound workable? Anything I should look out for/be worried about? Frank is scared a new center is going to hurt him. I wish I could reassure him.

It appears that Frank is on a Tuesday, Thursday, Saturday schedule. I am on the same schedule. One thing we have done when traveling with a weekend event is to shift my schedule - for the week of travel, I dialyze on Monday and Wednesday at my home center, and travel Wednesday evening into Thursday morning/day. I then dialyze Friday at my "away" center and attend my weekend event on the Saturday or Sunday. I then dialyze on Monday at the "away" center and travel back home on Tuesday into Wednesday. I resume my normal dialysis schedule on Thursday in my home center.

This has worked well - you get 3 dialysis sessions in each week, no gap in treatments greater than 2 days, no risk of missing the weekend event due to scheduling issues, and (very important for me) you don't have to travel on a dialysis day!

Another advantage is that there are some units here in Florida that are only open Monday, Wednesday, and Friday; and we have found that the days with three dialysis shifts are also Monday, Wednesday and Friday. So, potentially there is more availability on those days.

My unit is a DaVita unit. They have a website and an 800 number you can use to schedule dialysis if your social worker is of no help. Fresenius also has a website - we have used it to schedule international travel, but it is also good for domestic travel.

One month should be sufficient to schedule travel (my unit will do it in two week even when we are traveling to the very popular Panama City Beach!) You have at least 6 weeks so you should have no problem.
« Last Edit: March 19, 2013, 05:30:33 PM by Epofriend » Logged

smcd23
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« Reply #10 on: March 19, 2013, 08:22:42 PM »

When we traveled out to my parents for Thanksgiving, Tony needed dialysis on Friday. I had told the social worker months in advance, and when I had not heard anything we were told it was because they don't set it up until a month or so in advance (time and place) because so many things can change, and even once they secure your spot, they don't send your prescription to the center until the week before.

I'd follow up with the social worker - We go to Fresenius and had no issue getting his treatment set up. It might just be that you are asking too early. Also, we provided our social worker with a list of clinics in the area we were going to be in and gave her the top 3 based on their proximity to my parents house. You can get the info on the facilities off your clinics webpage (assuming you're going to DaVita or Fresenius)
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
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