Will it get better?

[lou]

Hi everyone hope you are all well.

I don't mean this as a depressing question, just an honest one I guess.

Have been doing pd dialysis for nearly 6 months now... all my possible donors have been ruled out for various reasons so now I am on the transplant list. Although I have (sort of) got my head round being on dialysis I guess I just want to know things will get better than this. I am off on half term this wk and have a couple of friends coming down to see me tomorrow. One of them is 5 months pregnant and the other has just got back from a month in Thailand. I guess I hate the feeling my life is on hold at 29. I know I have so so much to be grateful for. I have a lovely boyfriend, friends and and a job I like. I'm not broody myself (thank goodness!!) but I love travelling and feel so worried all the time I wont be able to go abroad easily again and see the world.

I just wonder if anyone out there who has had a transplant ever felt like this? Will life really be better after a transplant? I cant imagine at this point ever having a day when I don't think about dialysis, transplants/etc. It would be so amazing in the future to have a (nearly normal) life again where everything doesn't revole around waiting for a transplant. I know you may say I should spot obsessing about when that phone may ring and just try and and enjoy life now and I really am trying to, I just find it hard some days when its all around me all the time (I am sitting doing a manual bag as I write this!).

Any comments back would be great,

Lots of love

Loou x x x x

[monrein]

Lou, I started D at age 26 and did it for 5 years until I got a transplant.  Before D I too used to travel a lot, a year in Asia, living in France and so on.  I felt that my life was over and even going to restaurants, another thing I love doing, became so complex with dietary restrictions and I took (still do) these very seriously as I wanted to avoid any long term damage to my body.

My first transplant lasted 23 years and I really lived for the moment and did that I could reasonably squeeze in.  White water canoe trips since I could no longer risk going to  exotic locales (India, Thailand, Laos etc etc....my real travel desires are not the common ones) since I was told that certain vaccinations could cause my immune system to kick into high gear and threaten rejection.  I loved those canoe trips.  I also traveled to France for a month, six years in a row, traveled here at home in Canada, visited England again, checked out Japan and Hong Kong (doctors felt these were acceptable although they advised against the Phillipines).  We do have to adjust and I wish that I'd not had to compromise but most of us actually do have to in life, even totally healthy people, so I just got on with figuring out and doing what was available to me rather than get in a funk about what was denied.  Kind of a case of learning to want what I had since I couldn't completely have what I wanted.

Now I'm on my second trx after ten months more of D in between and I've had to miss a couple of trips because I can't get insurance due to some clotting complications  and the treatment of those.  So I'm sidelined for a bit but I know that eventually that'll be resolved too and then I'll take advantage again of all possibilities available to me.  Dialysis is hard and it's normal to feel the way you do.  It's also good I think to call it as it feels on any given day, since "pretending" that all is OK when we feel down physically or emotionally only makes the ogre seem more scary.  None of us would choose this illness and I very much wish that YOU and so many others didn't have to deal with this at all but especially not so young. 

I hope that you can get a transplant as soon as possible and that you can find ways to keep on finding (it's work by the way) the positive things in your life that can sustain you through the more difficult moments that pop up unfortunately, far too often.

[lou]

Thanks Monrein, this was really good to read. Thats amazing your first transplant lasted 23 year, I hope you get such a long time out of your new one too.

I know what you mean about compromise. All I really want to do in life is travel. I spent a bit of time in Asia a few years ago but would love to go to back to Indonesia and Thailand and one of the first questions I asked the Doctor when I was diagnosed was whether I world still be able to travel. He joked "well I wouldn't go to India if I were you" and to be honest that hit me harder than anything really. I guess we just have to do what we can do.

Can I ask where else you have travelled, or where else are you planning to go?

x x

[Hanify]

yes it will get better - but you will always feel like you are compromising.  I have been to LA/LV (which is a 12 hour flight from NZ by the way) and Australia (really easy) and Samoa since being on PD.  Samoa was a bit tricky, but we got there.  I don't know why you wouldn't be able to go to India on PD - obviously there might be issues after a transplant.  So go now while you can - that's what I reckon.  The biggest thing is that you will have to factor in a bit more $$$ to get your supplies delivered to wherever you go.  We are planning a road trip in the States as soon as we can afford it.  it's not the dialysis that is stopping me at all - it's the money!  I have just got better and better over the last two years - hopefully you will keep improving too.

[monrein]

Lou, I was born and grew up in Jamaica but came here to Canada to live at 15.  My parents moved to Miami but I didn't want to go there so came here instead.   I did my third year of university in Toulouse, France (I was 18) came back to Canada for my final year of a four year Honours BA.  I spent close to a year traveling around India, Sri Lanka, Nepal, Thailand, Burma, Laos.  I've also visited Japan, Hong Kong, Mexico, Guatemala, Honduras, Greece and a number of the Greek Islands, the former Yugoslavia, Italy, Greece, England, Ireland, Wales, (still need to go to Scotland) Spain, Monaco, and I feel very at home in France, having lived there for two years and visited quite often.  I may have missed a few countries but you get the idea.  Since starting in with kidney failure at 26 I only visit pretty westernized countries with modern hospital facilities and France is my favorite default place to go. 

I like traveling in "civilized" places but I far prefer the uncommon, the off-the-beaten-track kind of travel that is far more hard work than vacation.  The kinds of places where people think one has lost all their marbles to want to get to know.  I love culture shock actually and quite enjoy having all my assumptions turned on their head. 

While living in France (I studied there for a year and taught English at the University of Nice for another year) my husband, who speaks no french and therefore was getting in the way of my own learning, visited Morocco, Tunisia, traveled overland to India by bus, taking in Pakistan, Turkey, Afghanistan, Tanzania, Kenya and probably some I've omitted too.

Once I had the first transplant I did everything I could to not put it in harm's way and so wilderness white water canoeing down Canadian rivers became our substitute for culture shock and a new means of self discovery.  My husband and I share this love for travel but he hasn't gone on any major overseas adventures since I've been sidelined by ESRD.  Would I have done the same if our positions were reversed??? I don't know but I highly suspect that he's a better person than I am.  I did 11 white water trips, the longest was 21 days in the bush and one was just south of the Arctic ocean (Hood River).  The canoe trips were mostly very isolated wilderness and often we'd see no one else for the whole trip.  We like to fly in by hired float plane and get picked up at a chosen destination two to three weeks later in order to ensure isolation.  My husband has done probably 17 trips in all, several to the Arctic with my brother.  I will say that although I find luxury fun in it's own way, I like travel experiences that challenge me and make me discover things (not always good things btw) about myself.   I also love eating in high end gourmet restaurants but also find joy in trying foods that I have no idea what they even are.

Since travel is your passion too, I hope you can indulge it safely when (notice I didn't say if...that's cuz I'm always hopeful) you no longer have to dialyze.  In the meantime, can you try to explore something in your area that is not so much the common, same old mainstream stuff?  An example for me is that I live in Toronto and so for a number of years when I was bound by D I went to a lot of underground type theatre and non-commercially viable movies.  Like my travel I like my movies to be NOT run of the mill and almost always not Hollywoodish.  Art galleries can be fun especially if you get on their mailing lists and get invited to openings.  No advance knowledge required, you can just go and be upfront that you know nothing, there'll usually be someone there with lots to say, sometimes boring, oftentimes hilarious and adventures can be found right under our noses if we seek hard enough.

[Zog]

If you ever get a transplant and lose it, you may feel differently about them.  They aren't the cure. 

Don't put your life on hold waiting for what you think will be perfect conditions.  I think things get better when you start to accept them and stop comparing yourself to others or what you thought life was going to be like before this happened.  I wouldn't have a wife or daughter had I waited for everything to be perfect, I'd just be closer to death.  You can do a lot of things on dialysis.

[Sunny]

In dealing with ESRD there will always be something to worry about regarding your health.
Whether you are stage IV (pre-dialysis), or on dialysis, or post transplant, there will always be health concerns you have to think about that others do not. You give up some freedoms regardless of where you are on this continuum of renal disease. That means you need to find the path that suits you now at this stage of "the Game" and carry on. I'm not saying it's easy, because it's not. I am saying that life can be fulfilling anyway. Take a chance, do some of those things you want to do anyway, but within the best of your abilities. Instead of long backpacking trips,take short day hikes; instead of long vacations, do overnighters, or go on a cruise that can accommodate dialysis. Heck, two years ago, against all recommendations of my doctors, I went to Peru. I contracted H.Pylori and had to be treated for it,all of which made me very sick and almost killed me, but I would never have given up that opportunity to see Macchu Piccu at that point in my life. Hang in there, the human body is resilient.

[tyefly]

you guys are the best...... great advice.....

[lou]

I agree - thanks x x