I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sunny on May 26, 2010, 02:21:56 PM
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jdwills posts regarding peoples hopes and dreams being dashed because of renal disease got me thinking.
We have all had to altar our ways due to kidney disease.
What long-term goals did you have to give up?
Me, I had to give up teaching elementery school. I have a lowered immune system and kept getting sick constantly. There was no possiblity for me to continue on that path if I wanted to be healthy and alive to take care of my two children, who were 8 and 10 when I first got sick. I owed it to my children to be around to raise them and gave up my own career to reach that goal. I have no regrets. My children are now 19 and 21 and I know they are aware of how much I have given up over the years to mainatin my health so I could be here for them.
What did you give up?
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I dont have any hopes and dream anymore , i exist.
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I think that now, I just want to make a mark in my world. Maybe just my tiny corner of the world, but I need to at least try to use my time to make a difference. I can't teach anymore (biggest disappointment) but I can teach in other ways. So my hope and dreams now are very simple. Make a difference. Help in any way I can. Share with the next person. I have to believe that I have just as much purpose in life now as I did before the lovely kidney thingy. Okarol is my role model :2thumbsup; Meinuk is my hero :2thumbsup; Sluff is my heart :cuddle; You all show me everyday how to be better and how to reach out. Good thread, Sunny :thumbup;
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I gave up my Phd studies (French Literature and Linguistics) and my plan to do my thesis living in the French Caribbean (Martinique or Guadeloupe). I settled for teaching French Language at various universities but got bored fairly quickly. I worked full time on D and no one (except a couple of close friends) in my department knew until I was called for a transplant. I was back at work in 5 weeks. I moved on to Landscape Architecture but only did the first year of study and then applied and did a Master's in Social Work. I did my first placement in a dialysis unit at a major hospital and told no one that I was transplanted.
I gave up my travels all over the world but am very grateful that I did as much as I did before going on D at 26. This was a shared goal of my husband and me and we planned to work and save then travel for a year and then start over again...I also had long summer holidays teaching at the university level and would have had a sabbatical year for study and research abroad every seventh year.
I (we) gave up our plan of having children since at that time I was on cyclosporine which was a new drug and they would have switched me to Imuran. I was too worried about jeopardizing my transplant in any way. We decided not to adopt as we focused on what life might have been like for children with a chronically ill mother. At that time transplants were not nearly as common as now and I knew two people who went ahead with pregnancies. One was disastrous, the other was fine although I don't know about the longer term outcome. My husband was worried about being left alone with child or children to raise and we felt it unfair to kids. I decided to work with young people (teens and their families) instead.
My husband had degrees in Political Science (pretty useless from the standpoint of a job) and Geology (done while I was teaching and on D...he got free tuition because of my job) but since he was my at home person for home hemo he then applied and was accepted at law school and was called to the bar at 40. That would not have happened if I hadn't been on dialysis since we would have been busy with other plans. It had been a dream of his to go to law school so dialysis actually helped to accomplish that.
I do feel however that various road blocks get placed in everyone's way throughout life and an important key to my contentment is not to focus too much on opportunities missed or stymied but find ways to seize new ones that might arise instead. If I'd managed to accomplish my original goals there are other things I've done that wouldn't have been possible so although I'm not a big fan of clichés I do think about doors closing that then force me to leap out of windows. Life is full of forks in the road...some we choose, others are just not free of debris.
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When I was 53 years old, I was diagnosed with ESRD.
Prior to that, I had been saving money for my retirement at age 65.
Now I don't expect to live that long.
So I'm in semi-retirement now. When it comes to retirement with ESRD, use it or lose it.
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hello,
we have to do what we can, and to the best of our abilities....if we chose to lose that dream we lose to dream...wolfken
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Yes, we do the best we can with what we have.
It's just there is so much that we have to forego if we want to live.
One thing I really regret is the inability to travel to all of those places I dreamed about when I was young. I have done a lot of travelling already and I am very grateful I did. But there were so many other trips planned. Especially for myself and my husband as we got older and had more money to do it and no kids in tow.
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excellent post. through the last 5 months of this, everyone asks our the patient is. no one asks how the wife and son are? the focus so much has been on the medical. while thats vital, it is only one part of the pie.
we have 10 children between us, 5 each. but only one son at home. we homeschool. what were his plans before all this? he wanted to go to trade school, take flying lessons. do more civil war reenactments as he loves history and we did them for 3 years. he wanted to go camping, fishing, travel a little as mom used to take all the kids in years past.
so far all i've managed to do is get him through 3 weeks of driver class so he can have his permit.
what about mom? she spent the last year working on plans for a cabin in the woods, all off grid. less animals, more garden, rainwater system, basic solar set up, compost toilet, limited electricity.
mom is a writer and has 3 books in the works. she wanted to travel a little bit too. in hopes of finding that special place, that cabin in the woods. mom would like to also be in an area where winters aren't so harsh. where she can possibly be on a volunteer fire/EMS again, find a little church with a rocking gospel music program she can sing in again. icing on the cake would be a few friends with a southern accent and the same hospitality.
where are we at these days?
camper sits in the yard. fishing poles in the barn. cabin in the woods is a blog site. we do travel, to doctor appts, clinics and hospitals. son surfs the airways via the internet. we read about the civil war enactment events. and mom in her own way is working fire/EMS again..burning large trash piles and taking care of husband.
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Noobie, reading your intro post, I see that you and your family have been at this PD thing since January. Are things getting any easier now that a little time has gone by? Do you think that as this transition period passes and becomes more routine, your husband will start feeling better and you all can begin reclaiming your lives bit by bit? I can't imagine too many things more challenging than living off the grid in rural Michigan in winter with a husband on dialysis. Can this particular dream be amended a bit? A lot of IHDers on PD like it because it allows them to be quite mobile...with that in mind, is travelling to civil war reenactments really out of the question?
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My kidneys failed when i was 20/21. I had always wanted to move to NYC and become a world famous fashion photographer. That dream is no more. Now I do some freelance work as a wedding photographer. Oh joy.
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I am so lucky, so fortunate that ESRD struck me in my 60's and not before.
I have achieved ALL my ambitions. I'm so sorry that others are not so lucky as me.
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Noobie, reading your intro post, I see that you and your family have been at this PD thing since January. Are things getting any easier now that a little time has gone by? Do you think that as this transition period passes and becomes more routine, your husband will start feeling better and you all can begin reclaiming your lives bit by bit? I can't imagine too many things more challenging than living off the grid in rural Michigan in winter with a husband on dialysis. Can this particular dream be amended a bit? A lot of IHDers on PD like it because it allows them to be quite mobile...with that in mind, is travelling to civil war reenactments really out of the question?
no, actually they have gotten worse, 4 hospitalizations, cycler machine malfunctioned sent him back to ER, #5 peritonitus, now cardiac issues, always daily fatigue, dizziness, nausea, can't get straight answers. he seems to be worse than the first time he came home.
off grid would not be in MI. no way. i was looking at a bit more tempered climate.
we did reenacting for 3 years. he won't feel good going to just watch. he has no energy at all. gets up for 5 mins, back to bed. i don't know what else to do/say but call your doctor!
ps: sunny i apologize if i sounded harsh. not my intention. see, when this first happened, i wanted to sit down as a family, look at the realities, and figure out how we'd survive it long term.
DH wants no changes at all. so i am faced with all the work and worry about everything. and i guarantee a time is coming when i will collapse.
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Well, of course your DH doesn't want any changes, especially changes brought about by an illness over which he has no control! But I think that he (or you, whoever comes first to this conclusion) will soon see that some changes have to be made if you are both going to survive with your sanity intact.
When you feel really crappy, it's easier to become bitter and obstinate. It's hard to rationally reorganize your life when all you want to do...when all you physically can do...is go back to bed.
If his condition is worsening, then that has to be investigated. Life will continue to stand still as long as he is this ill. What are the cardiac issues, and is there a treatment plan in place? Or is everyone just still faffing about with their fingers up their noses?
Yes, avoid the reenactments if all it is going to do is reinforce the idea that he can no longer participate. No use willingly tearing your heart out.
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I cannot say as I've had much in the way of change in direction. I think I must be a bit flighty, as I seem to want to do everything, but come to my senses on most things before the point of no return. I've always put changes in my life's pursuits down to aging, different circumstances, and different people round to influence me (and I them, I hope). I never thought I would have children, never much wanted them. Then I met Gwyn, we had our first, and I knew we would have another from there because I did not want my son to be an only child. Having children changes it all, of course. If it weren't for my kids, I imagine Gwyn and I would be living in Africa since we went there on honeymoon and never got over it. We have since settled on more realistic goals, ones that take the children's happiness and our financial situation into account.
I have just met one of my long term goals - getting into a trial that I believe provides the "cure" for kidney failure. (I'm not supposed to call it that, but let's assume the surgeon doesn't read this forum.)
The one goal that we did have to postpone was moving back to the UK. Gwyn received a job offer from a company where he once worked based on reputation alone. (Gwyn is really good at what he does, and so easy to get on with.) I wanted to take a chance on this clinical trial, and I would have been placed at the very back of the queue, even passed over altogether, if we had been that far afield. It was a gamble I'm so glad we took, and the man who offered Gwyn the job said to call when we are ready. *fingers crossed*
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I always wanted to be a topless dancer; just didn't have the top for it. :rofl; As for kidney disease, by the time that came along I really didn't have any particular hopes or dreams, so I just "rolled with it."
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I hoped that I would be starting some kind of medical studies by now and that I would still have a job. :thumbdown; Now I have to find studies that fit my dialysis times and I am the type of learner that doesn't like to do online learning I am better in a class with others to a point. My dreams are for my kids to be healthy and as for me I will go with the flow. :pray;
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morning moosemom
well, when he first got out the hospital he felt great. but then the infections started, more trips to hospital, etc. we went to see PCP few days ago to see if he get 02 as needed at home. he is always weak, tired, coughs constantly, dizzy. talked to nurse about this several times. well, need to re-start epogen, some of meds do this, etc. says he can talk to doc about it in a month at next appt. toxin build up too.
he barely eats.
as for now, PCP just wants him to see cardiologist due to these complaints. nothing specific, and didn't have any issues prior to all this. he is just miserable as he has no energy and other complaints. when he did get some 02, it helped and cleared the dizziness/nausea for a few hours. but, Neph won't prescribe, PCP won't, he has to wait 3 weeks to see cardiologist who will then run a battery of tests to see if HE will prescribe..
DH was healthy, hard working before all this. if it gets any worse or i can't stand one more minute of the complaints, i will load him to the ER. because something just is not right.
DH PD cath used day after he got it. lots of issues with hospital/clinic over sterile practices. finally changed doc/clinic.
my thought when all this happened and he was unable to work now, we bought a very nice used truck camper, thought we'd move our belongings to our other property and go travel. see his cousin who had TX 10 years ago and was moving some small mountains to get him TX sooner.
hope that makes sense? right now we are on hold until someway, some how this becomes stable somewhat?
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I will miss backpacking for days....... I did not finish the pacific trail........ I would of loved to have done that........ but I am glad that I stil can go at least in a RV.....camping and traveling....... I am glad that I am not incenter anymore....... Doing D on my terms at home or where ever is way better than incenter...... I feel much better ...... I have not been on D very long.....so this summer will be hard...... I have to plan things......
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Hiya, noobie. You know, seeing a cardiologist isn't a bad idea. I know...it's one more person to further medicalize your lives, but kidney disease can do a number on your heart, so having a cardiologist on your team makes sense. I've had CKD for almost 20 years and have never seen a cardiologist, but now that I am pursuing a place on the transplant list, the transplant people want me to have a cardiologist; also, part of the pre-transplant protocol requires you to have several cardiac tests, so, may as well have a consult. If he can't find anything wrong, then you can celebrate a bit of good news.
I've had a long time to get used to the idea of dying kidneys, but when it all hits you like it has for you and your DH, man, that's a gigantic sandbag. You have no time to prepare or anything! It must feel to you like the earth has turned on its axis. Such tectonic upheaval! I KNOW a lot of IHDers have had a very similar experience. I don't know what's worse...sitting around waiting for your kidneys to finally go, or suddenly knowing you're sick. But I think you are taking the right approach...just survive the day and work toward the time when all of this becomes a bit more "routine", if you know what I mean. But yes, the fact that the medical system and the drugs and tubes and machines and bags and doctors and toxins and epo conspire to take over your life...oh, that is so hard to get used to. I don't know if you ever really completely get used to it.
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I will miss backpacking for days....... I did not finish the pacific trail........ I would of loved to have done that........ but I am glad that I stil can go at least in a RV.....camping and traveling....... I am glad that I am not incenter anymore....... Doing D on my terms at home or where ever is way better than incenter...... I feel much better ...... I have not been on D very long.....so this summer will be hard...... I have to plan things......
Do you have any plans for summer travelling?
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Well I am just here to say that I have not lost or changed ANY of my hopes and dreams!!!!!
Many are just on hold for now. Like to continue to travel the world and see my friends and places I love like Hong Kong, London & Seattle. Others, like the fairer sex, are just a little diminished right now, but still there!
I refuse to let this disease or dialysis get on top of me (that's for the girls >:D >:D >:D). Hopefully, sometime, that transplant will come and give me more freedom to get out there, travel, and more energy for other things ( >:D) but really I do dialysis to let me keep living my life as best I can, and I'm not going to worry about bad things happening until they do.. until then my goals are the same, and my hopes and dreams... all intact!!!
I'm lucky enough that I can still work pretty much full time, and the financial situation isn't too bad, and I plan all kinds of things in my head... and I just know that I will do them all when things fall into place.
For now, like a cat eyeing its prey, I sit quietly.. waiting.. patiently.... purrrrrrr......
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I lost my kidney at 18 during the start off my senior year. I never really thought much about my future aspirations. The only thing I knew was that I had a love for all things electronic. I wanted to become a programmer and work for a big names computer company and even start a family.
While I have not been able to fully utilize my dreams, I have certainly not given up. Last year I finally got my associates degree. Boy was getting that degree fun. I spent some days sleeping in my car because I was to ill to even drive home! I just recently got a major job working on supporting a huge network infrastructure.
I do wish I could marry my fiance and start a family. She understands that keeping my insurance and thus keeping me alive is important. I'm hopeful that once I hit the end of my temp to hire I can finally dream of starting a family. There are so many regrets in my life, but when I honestly think about it I don't know if I could have done anything different. I do know this, I will get a Bachelors in Comp Sci if it frikin kills me.
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Now that my life expectancy has been greatly reduced, I see no point in making any long-term commitments. Even medium-term commitments are dubious.
For example, my 1995 Honda Civic car is 15 years old (obviously!), and it's gotten to the point that I need to replace it. Normally, I would buy another Honda Civic--those cars are very reliable, and another Civic may last me another 15 years. The problem is, I may not last another 15 years.
So I figure: What's the point of buying a brand-new shiny Civic or Acura or other fine car that may last another 10-15 years, when I won't last that long? I might as well save some money and buy a used Chevy Cobalt. By the time it dies, I'll be dead too. Most likely my heart will give out before the Chevy Cobalt's engine does.
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My kidney journey has been very exciting. For about 20 years it has seemed like an extreme sport, crashes and all. The last 10 months have been really rough medically, but at the same time I have been nurturing an exciting new business that is succeeding beautifully. Both the business and the medical problems are tremendous challenges. So far it has been a great ride. Of course there a low points. There has been great satisfaction in fighting through the low points. Some day will come a crash where I won’t get up. So, that’s part of being human, eh?
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Now that my life expectancy has been greatly reduced, I see no point in making any long-term commitments. Even medium-term commitments are dubious.
I can really relate to this. This also dovetails into any dating discussions - I mean I don't know where I'll be in 3 months or 6 months let alone the rest of my life....
I still have medium/longer term goals - most of those revolve around a transplant (eg: travel more, move out of my current dump into a better place, etc) and in that sense, life is as much "on hold" as it is about not being able to make longer term commitments. I mean heck someone asks if they can hang out on Sat night and I honestly have to say "I'll have to see how I feel on the night - it's after dialysis"
So yeah can relate totally to what you're saying there.
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Now that my life expectancy has been greatly reduced, I see no point in making any long-term commitments. Even medium-term commitments are dubious.
For example, my 1995 Honda Civic car is 15 years old (obviously!), and it's gotten to the point that I need to replace it. Normally, I would buy another Honda Civic--those cars are very reliable, and another Civic may last me another 15 years. The problem is, I may not last another 15 years.
So I figure: What's the point of buying a brand-new shiny Civic or Acura or other fine car that may last another 10-15 years, when I won't last that long? I might as well save some money and buy a used Chevy Cobalt. By the time it dies, I'll be dead too. Most likely my heart will give out before the Chevy Cobalt's engine does.
I've been ignoring the odds but nurturing and coaxing along my lemon of a body for a very long time now and I think you should too. A new Civic might make you feel a little shinier too and if the money's in the bank might as well leave a car as the money if you lose the game of defying the stats. Whenever I learn of some new potential or actual complication of ESRD (whether personal or theoretical) I absorb the gravity of the thing and set about living as if I can be the exception to the "rule". Not by ignoring the situation but by trying to minimize the potential for making things worse and capitalizing on what I can do to improve or maintain my status quo. One day my luck will run out but so far I'm keeping up with my so-called "normal" friends quite well. Traveling in Burma a long time ago, I was amazed by the truly ancient cars that were lovingly kept on the road (you can see this in Cuba too) and I figure I'm just being my own creative mechanic.
None of us know when our hearts or anything else will give out, we can only be prepared, know that we won't be around forever and yet live as if tomorrow will come as usual. Functional denial, you know. :cuddle;
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Since my heart attack, I have to admit that I've been living in fear. I'm off to see the heart dudes to-day and we'll see what they have to say. The words of the heart surgeon, who did the angiogram and inserted the stents, still ring in my ears -"I did the best I could with what was placed in front of me".
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"I did the best I could with what was placed in front of me".
whoa..well i reckon this can be said of many things. the checkbook, making a meal from scraps, your honeymoon, and them dern stepkids..
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Those are certainly haunting words, Galvo. :cuddle; I wish I knew how to get rid of the fear for you.
Good point, Noob.
RightSide, I agree with monrein, buy that car. Cars are more fuel efficient today, so less time wasted at the fuel station, more fun little features, smoother ride, plus free repairs for the length of the warranty. I personally think, with all the self-educating you've done on ESRD, that you are going to be around for a good long time. :cuddle;
Whenever I learn of some new potential or actual complication of ESRD (whether personal or theoretical) I absorb the gravity of the thing and set about living as if I can be the exception to the "rule".
Oh, monrein, I believe you are the exception. You're a statistical outlier, plus you put your energy into learning and maintaining health. I have lived my life believing that my kidney would never fail. No one told me any differently, and my reasoning as a child was that no one would be angry and shouting at me for being sick if it weren't my fault. I lived at least 20 years thinking that if my kidney failed, it was because I did something wrong. Not denial, as no one explained otherwise. I liken it to that old story of the bee - that bees fly because they don't realize that they cannot fly. (Always found it a cute story, even though I know it's not true. Bees live within the laws of physics like all the rest of us.)
I still have a certain feeling of medical invincibility. Now I'm mature enough to just do what my doctor says, even though part of me thinks I could go it alone and be fine.
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Since my heart attack, I have to admit that I've been living in fear. I'm off to see the heart dudes to-day and we'll see what they have to say. The words of the heart surgeon, who did the angiogram and inserted the stents, still ring in my ears -"I did the best I could with what was placed in front of me".
I'm eager to hear what the heart dudes told you. Will you let us know?
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Sure will.
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I have to admit I have to agree with Richard - I haven't changed any of my hopes and dreams!
Luckily (I suppose!) I have never wanted children but my main dream in life has always been to see as much of the world as possible. I did a bit of travelling before I statred dialysis and now I have had a transplant I am just waiting until my blood tests are far enough apart (fingers crossed all still continues going well) and I will be planning the next trip.
I know it will never be as easy as I once thought it would be - I wont be able to just jump on a plane without planning all the health possibilities and I know I will always be more cautious about food wherever I go, but I am absolutely determind to still do these things. I always remember being told by one of the docs when I was first diagnosed that a kidney transplant is such an amazing gift and a second chance at life really - I guess I feel like I have no intention of wasting this gift sitting at home being too scared to go anywhere (and I know how easy that would be to do) I feel like as long as I do everything in my power to look after this wonderful kidney - eat well, exercise, take pills on time, etc - then I need to make the most of life and I know I certainly appreciate every single day now in a way I guess I never did before. x x x
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woo hoo I love it when an (attractive) lady agrees with me!! :rofl;
I think one thing ESRD has taught me is to value what I have and to "just do it!" because you never know what is around the corner and what you have left - that's not a "reduced life expetancy" thing but just well... you just don't know.. so I try to take opportunities where I can(within reason of course) and yes, when that transplant comes, I intend tomake the most of it - it may last 6 months, 2 years or 10 years... so I want to get the most out of that gift.. so I will be travelling, seeing everyone I want to see(yes, that's IHDers in Vegas!!) and all that. I don't want to sit around not using that relative freedom I will have.. and luckily I have some financial freedom to do that sort of thing(well hopefully anyway!).... so my dreams are intact and just waiting to get going (again!)
Galvo... try to not be too scared.. that's pretty hard stuff to hear from the heart guy, but you could be the bloke that proves him wrong and be that amazing guy. Having cats is definitely a positive - I am 110% convinced having my cat (ok, my cat having me!) has improved my overall health, stress levels, BP, etc...
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Now Galvo, no offense was intended, was trying to get you to laugh a bit. hon i sure see what your going through to a small extent and wish i could send you these extra cats we got..*grin* :grouphug;
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Absolutely no offence taken, Noob. I needed a chuckle. I agree with you re the little furry ones, Richard.
Had the echocardiogram done to-day, and actually saw my heart beating. That was a relief! No on the spot report - I will find out result when I see the specialist on 9 July. I have been drained with my dry weight being reduced from 89kgs to 83.5kgs, and I think this has done me the world of good.
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Glad that fluid is off and I bet your heart is too Galvo. :cuddle;
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Galvo, it would drive me nuts having to wait that long to find out the results, but at least you know your heart exists and it is beating! Please don't forget to let us know what you find out on the 9th.
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This summer for my 50th birthday my husband and I were going to go to New York City to see the museums and a Broadway play.
I had to face the fact it's not going to happen because I just don't have the energy.This is the first summer I will not be travelling because I just can't find the physical strength and stamina. We will go to Lake Tahoe for ten days because we have a family cabin there and I feel safe and comfortable there. This is a big change for me. For those of you with kidney transplants, get out there and enjoy it.
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I went on dialysis at age 20, so at that point my goal was to finish college and have a husband and family. I feel like I have pared back my goals because I was never that interested in being a big shot career wise. I liked working and have done well at all my jobs, but my priority since having kidney failure was relationships, and experiences. We've never had a lot of money, but we've traveled quite a bit.
My goal now is to dance at my daughters wedding, and she'd better not marry at 18! I want to go back to work to save for her college and take my little girl to Disney world. I also want to give back to the friends who've stuck by me through all my illnesses. They may be small goals but they reflect what's most important to me. I think having kidney failure young taught me what is most important in like and I was able to bypass a lot of bullcrap.
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Funny. I saw a psychic today(that's a whole other story) but one of the things she kept saying many times and that I had to laugh at a bit was that I will have a LONG LIFE and live till I'm in my 90's.... :rofl; :rofl; :rofl; :rofl; :rofl; :rofl;
So there my dreams are not changing because the psychic said so!! :) :bandance;
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RichardMEL - Funny coincidence I saw a palm reader years ago and she told me I'd have one child - a daughter and that I'd raise her wrong and have problems. She also said that health would not be an issue for me. Crazy!
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Well, my goals are somewhat different now that's for sure! I am in school to be an Esthetician now, as before I wanted to be a Psychologist- I am now setting goals for myself that are not years in the making, because time is precious! I also have had to give up in a sense, my own body, I sometimes feel as it isn't mine! I am not planning any big trips until after my transplant, whenever that will be! I am basically still leading the same life but I just have to rearrange things to accommodate dialysis! :grouphug;
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at 43 starting dialysis the ideal life that I was in, already changed - work changed, friends changed, holidays non-existant,
My future career dreams and goals have changed because all the hard work in my career got wiped out like it never happened and it feels like I am starting all over again.
I am just glad that I will still be around for my kids weddings and meeting my grandchildren (I hope)
Other than that - I am covered.