My sad story.....

[lifeofanomad]

Just found this board and I like it alot. First of all I want to put you in my frame of mind about my disease and about dialysis.....

WARNING!! IF YOU ARE SOMEONE NEW TO DIALYSIS AND HAVEN'T FORMED AN IMPRESSION ON IT YET! DO NOT READ THIS! I DON'T WANT TO TO FEEL BAD ABOUT IT BEFORE YOU EVEN START DOING IT!

In summer of '98, I was diagnosed with IgA Nephropathy and was told that I could have kidney failure anywhere from 30 years to 2 years. Back then they just said, get blood tests every month and will monitor it. So we do that and the years go on. I get married to my beautiful wife and and we have a daughter! Life is happy right? May of this year, I got really sick with pneumonia and somehow this aggravated my disease. So now the doc brings up dialysis and says that I need to have it right away. I went through the worst time realizing that I have kidney problems and had to be hooked to a machine! But I took comfort in my wife and family. Little did I realize that my wife had other plans. Right after I got out of the hospital in May I kind of adjusted to "this life" and even now still trying to adjust. My wife did not! She became a very withdrawn person and started working long hours because I was working shorter hours. Things got a little better for a time there with me getting the PD cath in. But my wife had enough! She left me! With nothing to my name and now I'm forced to live with my mother. In a way, IgA Nephropathy already ended my life, I have to live for my daughter now! I hate doing dialysis (hemo and PD), it makes me feel alone and trapped. But what am I going to do? I have already started talking to other doctors to deal.

Thanks for listening....(steps down off soapbox)

[Pierre]

Sorry to hear your wife left. I've heard similar stories so many times. I've never been on PD, but I've been on hemodialysis for 3 years - and on daily nocturnal hemo at home since earlier this year. My kidney failure was also caused by IgA nephropathy, but mine took 25 years to reach the point where dialysis is necessary. However, in addition to the 3 yrs on dialysis, the last 5 or so years leading up to it were pretty miserable. I actually run a very popular email support group about it.

It's never a pleasant thing at any stage of life or at any age to have to be on dialysis, but, we do learn to make the best of it because we gain the will to live despite this setback. I hope talking about it here and to your doctor will help you reach a stage of acceptance. Good luck to you.

Pierre

[lifeofanomad]

Thanks alot Pierre for listening. If you don't mind, can I join your support group? If you don't drop me a line at lifeofanomad(at)gmail.com. Thanks!

[Pierre]

Sure, we welcome all newcomers. Just go to my website, www.igan.ca , and once there, find your way to Discussion Group. The instructions are on that page. We have close to 2000 members from all over the world, and it's a very supportive community. We have other members who have had spousal problems because of their chronic condition, so, you won't be alone.

Pierre

[Beth Witten MSW ACSW]

I am a social worker and worked in dialysis clinics for many years before working with Medical Education Institute, Inc. that runs this site. I hope that you're also talking with the social worker at your dialysis clinic. Even though you are a home dialysis patient, your social worker is a resource to you. Social workers in dialysis clinics are supposed to have masters degrees in social work with specialization in clinical practice (the same training social workers in mental health centers have). What this means is that the social worker should have the skills to counsel you to help you with the multiple losses that you've experienced recently -- your kidneys, health, lifestyle, marriage, financial security, home, independence, etc. If he/she doesn't have time to do this because of the dialysis workload, he/she should be able to refer you to a counselor in the community that has experience working with people with chronic illnesses.

At minimum, your social worker should be able to help you do a self-assessment and set short-term and long-term goals for the future. What are your hopes and expectations for your future? What would you like to do with your life? Your daughter is a great motivator, but what other motivators do you have? What, if any, limitations do you have now that could be improved with some kind of intervention? There would be a long list of things I'd suggest, but I'd like to give your social worker a chance to talk with you to find out what you want and what your goals and dreams are.

Being on PD has the advantage that you don't have to go to a clinic which should allow you time to work and do other activities unrelated to your illness, like spending time with your daughter, doing things with friends that get you out of the house and enjoying interests you have with people your own age. I'm sorry that your wife couldn't handle your illness and left you, but you need to believe that you deserve better. You may not be ready now, but down the road, you may want to find someone else to love. Although it is a common concern, people on dialysis have met and married people that can cope with their health situation.

Bottom line...Patients who I've talked with that are well adjusted tell me that they dialyze to live, not live to dialyze. I hope that you can find things that will bring joy back into your life. I believe you can do it. Others who are on dialysis, like Pierre, can help and many are very anxious to do so. I'm glad that you found us and that you asked for support!

[Anonymous]

Dear sad story
I hear ya and I feel for you. I have been on pd for 18 months and your life does change a lot. But we have to adjust and move on if we want to survive and take care of our children. It is not easy I know. I am 46 years old with 2 children ( one is handicap because of having 4 brain tumors removed in 98. the other is 5. I too have lost almost everything, my job after 15 years, credit is shot, my family don't know me anymore unless it is hoilday time for a free meal. i CAN NOT DO THE THINGS i USE TO DO as in bending and lifting because of the cather and low blood pressure. And I am doing this all alone too. what I thought were friends are gone. But look at it this way we are strong birds and we will survive. I have had Iga for 15 years and was so sick for the last 5 years .I felt like I had the flu every day. Take your daughter and hug her and spend time with her. find things you like to do and do it. At least we can eat anything we want. get into something knew something you like to do. and live the best you can every day. some people get a cold and they think they are dying, try having them walk in our shoes for a day, consider your self very special and strong and that you can survive. best of luck to you as for your ex wife be happy that she is gone, because some day she will be old and the same thing will happen to her and she will know how it feels to be be tossed aside. what goes around comes around remember that.

[CJ]

Sorry to hear of your situation. But if your wife actually left you after such a short time period - did you really have that good of a relationship? I know it is hard to have a loved one on dialysis - regardless of whether it is hemo or PD - it is still dialysis. Don't dwell on the bad things that have happened, learn all you can about your disease and the best treatment options available to you, and start doing something other than dwelling on the past. You will be much better off if you take control ---- you can't change anything that has happened, you can only work toward a better future. In choosing PD you have taken a BIG step into controlling your own treatment! Sometimes, all we need is each others moral support to move us forward! GODSPEED!

[Anonymous]

Thanks everyone for your advice and comments. I am on some of those routes already. so my journey of a thousand miles has already began with that one step. Funny thing now, I just learned that my PD cath keeps moving up in my body, so instead of the doc moving it down again. They must put in a new one. Go figure!

[lifeofanomad]

oops.... forgot to log in! That was me! Thanks again!

[Anonymous]

I'm so sorry to hear your circumstances. You say you feel like your life is over but of course it's not. Having a life partner there to go through every thing with you does help alot, and I hope you will find someone else to share your life with. I have been on PD for about 6 months now. I know it's not the greatest thing in the world, but I try to look at it as a wonderful thing instead of a horrible thing. (I said I have been on PD for 6 months so don't tell me I don't understand). Without it I would be dead. So instead of thinking about all the negative things associated with it, I remind myself everyday that without it I wouldn't be here at all. It helps me to do this. I hope it can help you. Don't give up hope - there's always something to live for, you just may have to search around to find it. Good luck to you my friend, and to everyone else reading this.