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Author Topic: Travel at 9% Function  (Read 5825 times)
Deanne
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« on: July 01, 2013, 02:20:49 PM »

I'm at about 9% function. My brother is terminally ill in Minnesota and Mom asked me to think about coming home to tell him goodbye. I don't know if he has days, weeks, or even months left to live. He refused any kind of testing that would show how far the cancer has progressed, but it sounds like weeks is probably closer than months. I sent my sister-in-law a message to ask whe she and my bother would like. My brother is a great guy, but we aren't close. How far have you roamed in the days leading up to dialysis? What difficulties did you have, if any? I'm always tired, it's hard to think clearly, and I'm just not sure about making the trip.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
amanda100wilson
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« Reply #1 on: July 01, 2013, 03:16:51 PM »

I think that you should go, although it depends how slow the downward trend of your function is.  If it has been zipping down at an alarming rate recently, then may be you shouldverr on thecside of caution.  Altjough your brothet may hang on some time, at least you will have seen him.  Although you say you ate not close, the very fact that you are here even asking this, suggests that this is something you should do.  If you don't, then you may regret not going later.  Obviously, at the end of the day, it is your decision, but you asked, and that is how I would view if it were me.  In fact, I am from the UK, and hve just visited there.  My parents and in-laws are not getting any younger, so I actually left some supplies there, just in case I need to visit in an emergency.
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ESRD 22 years
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renalwife
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« Reply #2 on: July 01, 2013, 05:20:28 PM »

I know how you feel.  I am in California and my brother is in Michigan.  It has been two years since I last visited him and he was doing O.K.  But now he is going downhill.   I am going to fly to Michigan and visit with my brother while we can still talk together.  He will know that the family loves him and cares about him.  But everyone has to make their own decision.
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MaryD
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« Reply #3 on: July 01, 2013, 08:43:58 PM »

I travelled by train (four days) and back from Melbourne to Perth in Australia (almost 3,500 kms?) when my GFR was about 10.  I was away for a fortnight.  A week beforehand my kidney specialist said I should be fine.  I was a little concerned, as if anything had gone wrong they'd have to get the Flying Doctor Service in to get me out.  The trip went well and I started dialysis about six months later.

If your Nephrologist gives you the all clear you should be able to go
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Sue
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« Reply #4 on: July 02, 2013, 04:04:01 AM »

I'm at 12% - I have just travelled from Perth Western Australia to the Uk to see my mum who is almost 90 and my brother who is very ill, he has liver cancer. I was in England for 5 weeks. I was a little concerned before I left but figured that if anything happened I would just go to nearest hospital. It was very important for me to see my brother so just did it!

I discussed it with my nephrologist before I went, he said just book your ticket and go!
« Last Edit: July 02, 2013, 04:05:38 AM by Sue » Logged

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galvo
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« Reply #5 on: July 02, 2013, 06:07:10 PM »

Go! If you don't, you'll regret it for the rest of your life. I am speaking from experience.
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Galvo
Deanne
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« Reply #6 on: July 16, 2013, 08:35:56 AM »

My flight is booked and I'm already dreading it, not due to seeing my brother, but because of family issues. Whenever I go back to MN, Mom uses my visit as an excuse to gather the aunts, uncles, cousins.... I don't know these people and I detest large gatherings. I grew up being forced to attend these things. I moved across the country and avoid going back to MN as much as possible, in part to avoid these things. I've repeatedly told her I hate them and begged her not to do this to me. She says I just have something against her family, or she says that I really enjoy these gathering and just like to say I hate them ("you're just like your father"), or she says "(fill in the sibling name) doesn't seem to mind them."

Withing 5 minutes of sending email that I'm coming out, my older sister was texting and then calling. She said Mom was already trying to figure out what to do about gathering her relatives if I come out. This means she was trying to figure it out before I'd even committed to making the trip. I booked the trip for a week - ticket prices are expensive and if I'm going, I'd rather make it worth the cost, and hopefully be able to see my brother a couple of times, but now I'm p*ssed off and wondering if I can change my flight dates so i"m only there for a couple of days. 
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
okarol
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« Reply #7 on: July 16, 2013, 10:42:16 AM »

Do you plan to stay with your family or at a hotel? If it were me I would get an inexpensive hotel/motel nearby and then you could choose when to stay and when to go.
It doesn't sound like your mom is hearing you, so find a different way to deal with it.
I hope you get some time with your brother and can gracefully duck out on the mob gatherings.
Take care!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #8 on: July 16, 2013, 10:49:39 AM »

I agree with Okarol.  I suppose the ideal would be to change your return flight so that you are in MN for only a few days and to stay at a local hotel.  But that just adds to the cost, so I don't know if that's really the "ideal".  Frankly, I'd be happy to spend money if it meant not having to see people you don't want to see.  LOL!

I doubt that there's anything you can do about your mother.  You saw it coming, and yes, it's coming.

Your time with your brother should be free from any added family angst.  I'm sorry you have this extra burden.  I hope you can figure out a way to keep it to a minimum.  When are you scheduled to be in MN?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #9 on: July 16, 2013, 11:23:25 AM »

I'm headed to MN on August 5. I've considered a rental car and hotel, but that would increase family drama and there's more than enough drama already. There also aren't any local hotels. My parents live in a town with a population of 600, so once I get there, I'm pretty much trapped. Downtown consists of a grocery store, post office, and four churches. I just need to grit my teeth and deal. I hope she's learned from the last time when I was so p*ssed off that I refused to return to MN for a couple of years. Otherwise, I see a potential loonnngggg solo walk during a large gathering to escape for an hour or two. Walking out in the middle of it would be rude to the relatives who don't deserve rudeness, but these things make me feel like I'm crawling out of my skin and Mom telling me there must be something wrong with me for hating it doesn't make me hate it any less.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #10 on: July 16, 2013, 06:10:44 PM »

Yeah, I think you're right; you may just have to grit your teeth and deal.  Maybe think of it as something nice you're doing for your brother.  Maybe some of the dreaded relatives won't be able to show up and you'll have fewer people do deal with.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #11 on: July 16, 2013, 06:38:18 PM »

There's hope. Mom called. The key relatives are too old and too frail to travel that far, so she suggested we spend one day driving up to Aitkin (northern Minnesota - about 2.5 hours one way) to see some of them, and another day driving down to Owatonna (southern Minnesota - about 2.5 miles in the opposite direction). My brother is about two hours away in yet another direction. Out of a week of time there, five days would be spent on the road. I shot down both the trip to Aitkin and Owatonna.

I pointed out that it's because of these forced relative gatherings that I refuse to come home very often. I think I sounded miserable enough (I think it helps that I'm miserably hot and tired to start with) and Mom asked if I didn't want to come and I told her that no, I didn't want to come because of these forced gatherings. I think it finally sunk in. It isn't a closed deal yet, but at least I might be finally getting through. I might cave in on the trip to Owatonna as a compromise. I do like that aunt.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #12 on: July 17, 2013, 10:41:47 AM »

It seems to me that all of that time your mother intends to spend on the road visiting various relatives would be better spent visiting with your terminally ill brother.  Isn't that the whole point of this trip?

Agreeing to the trip to Owatonna does sound like a good compromise, though.  Agreeing to visiting this aunt and your brother sounds like a good plan.  Hopefully your mother will agree.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #13 on: July 17, 2013, 02:30:38 PM »

I thought the point was to see my brother, too. I don't know what it is with my mom and her relatives. It played a role in my moving across the country. My younger sister emails once in a while to ask if she can move out here with me to escape. I think she's mostly joking. I guess every family has their dramas. I'm grateful I can avoid most of it by staying on this side of the country.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Deanne
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« Reply #14 on: September 24, 2013, 05:29:52 PM »

It was a good thing I went when I did. My mom told me at 6 pm Sunday that Hospice thought my brother had only a few days left to live. About 8 hours later he was gone. He was a good person and I'm glad the pain is over for him.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
okarol
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« Reply #15 on: September 24, 2013, 05:37:25 PM »

 :cuddle; :cuddle; :cuddle; I am glad you got to spend time with him, may he rest in peace.  :pray;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
galvo
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« Reply #16 on: September 24, 2013, 10:56:57 PM »

My condolences on the passing of your brother. It must have meant a lot to both of you to have that last meeting.
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Galvo
MaryJoe
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« Reply #17 on: September 29, 2013, 07:32:05 PM »

I am sorry for your loss. I hope the memory of your last visit with your brother will comfort you in this difficult time.
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
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