What's the point anyway?

[Sunny]

I've been asking myself what's the point of dialysis in my case.
My two teens are both over 18 years old now, and this is the point in my life when my husband and I planned all kinds of freedom, travel, and all those things that held us back all those years while raising our kids. Only now, with my kidneys functioning at 15%, all of those plans are just wishful thinking and now all I have to look forward to is life tethered to a dialysis machine. Already this summer my husband has left on three different trips, all of which I'd hoped to go on when our kids were old enough to take care of themselves. But I'm too sick and nauseous, too weak, and too much of a burden to expect to keep up with him, a normal energetic 46 year old man. This should be the beginning of my new life, unburdened of responsibilities of children. Yet, I feel it is the end.
You might try to tell me, I'm just depressed, this too shall pass.
The thing is, I don't feel depressed. I just feel disappointed and sad my life is so different than I'd planned at this point in the game.

[wahoozer]

My mother felt the same way when she had to start dialysis. Granted, she was 77 years old when she started, but she was still very active and wanted to travel also. She would never ever consider traveling and going to dialysis at strange places. She also has other serious health problems.

So, the good news is that once she started dialysis her body got used to it and felt pretty good.

Instead of going on long trips, its long weekends. Leaving after dialysis on a Friday morning and coming back late Sunday.
She has seen 3 Grandchildren graduate high school, 3 other grandchildren get married, 3 great grandchildren be born and celebrated several birthdays and holidays. THESE THINGS ARE THE POINT.

If you start with a positive attitude, things are more likely to be ok

[cherpep]

I understand completely.  I am 45 years old, and hate that so much has changed.  Are you on dialysis right now?  Have you given any thought to doing home dialysis with NxStage?  That machine has given me a lot of the freedom back that I lost.  I control when my treatments are, and the actual treatments themselves.  Although, I still feel exhausted and unable to do a lot of what I once could - it has at least given me the opportunity to do alot more than I could without it. 

I stopped asking myself why, and have learned to deal with the cards I have been dealt.  I can wish and wish that things were different, but in my opinion - that is time wasted.  I'd rather spend the little energy that I have on positive things.  I love my husband and my children, and they love me.  The more time I can have with them the better.  I am not ready to leave my family yet and will do what I can to be with them.  I can't imagine the pan and suffering they would go through if I simply gave up.  I choose to fight and focus on the positives.

[paul.karen]

Sunny i hear where you are coming from trust me i do.

But when i found out i was sick i still went on our vacations. Been to Punta Cana twice and Mexico once in the last couple years.  Granted we use to go ever year sometimes twice.  The last couple trips we did i realized i walk way to much.  My feet swole up and i couldn't walk for a day on the last two trips.
So i walk much less then we use to while away.  Or take cabs.  My nauseas feelings come and go i just deal with them they would be here if im at home or a million miles away.

My point is we are sick but not dead.   And NOW is the time to go.  before you/we are slaves to our machines.  Go & try to take it easy dont overdo things, and relax it is a vacation.

Ps.  through apple vacations you can get away for a week (7) days with food airfare alcohol and great rooms at mega resorts for under $2500.  For me to rent a house at the jersey shore for a week alone would cost me $2000 with no food or drink.

i agree life is not what any of us planned with dialysis.  So try to get away now.

[peleroja]

I guess for me the point is being alive, no matter what occurs, since the alternative is death.  I've been through 8 surgeries since November of last year, yet through them all I maintained my sense of humor and kept on going.  Bottom line, if you want to stay alive, you do what has to be done.

[KICKSTART]

I wont deny its a rollercoaster but right now before you start dialysis is when you are at your lowest point , both mentally and physically. Think about the type of dialysis you want to do as well , CAPD then onto a cycler that does it all in your sleep , as against Hemo and hospital. Ok so you are not full of energy now and wont be 100% again , but you do get days when you are!! We all go through the .'.what's the point' emotions , its only natural, but when the time comes survival instinct kicks in ! Ok we may have crappy days , but even normal people have those ! Not everyone is frail and sick on dialysis , ok so we get tired but up to a couple of weeks ago i was out horse riding everyday ( very energetic!) its only a mess up with my tablets thats stopping me right now , but as soon as i adjust i going to be back out there ! 

[okarol]

Sunny,
Your family will always want you with them. Trips or not, I am sure your husband wants you around too, for as long as possible. You have many more experiences yet to come. My husband became disabled at 45 years old. Not only could he no longer travel, he couldn't work. But we've gotten through ups and downs, and we have adapted to the situation, making the best of it we can.
I agree, this is a low point, before starting dialysis, because you are already being affected by CKD. Jenna was so sick, but her answer was to just sleep. She never complained, to the point where we nearly lost her, she was so run down that I didn't know if she would make it to the emergency dialysis at the hospital. She was depressed too. Once she started dialysis she was able to eat better, think better and her outlook changed.
I don't remember if you want a transplant, but if you get one, that will help too.
Best wishes to you!    

[paris]

Hi Sunny,  I am in the same boat sitting right beside you.  We have always traveled.  My husband keeps talking about where he still wants to go.  "Why don't we think about Russia?"  "Wouldn't it be fun to go to (fill in the blanks)?"   I can't walk to the mailbox right now!  It makes me feel so guilty that I have taken this away from him.   Money for retirement is money for medical bills.  He wanted to retire at 60 - we will need his insurance as long as possible, so he has more years he has to work.    I will post more later.  This is a very touchy subject near to my heart right now and it makes me very emotional.   We'll get through this too.   

[kitkatz]

I went on dialysis at age 36, so for the last ten years it has become something I have to do. I will be damned if I am going to let that damned dialysis steal my life away from me.  I have traveled within the United States over the last ten years and have enjoyed myself immensely. I realize the only place I cannot go are out of the country. I am trying to get to Australia and am going to find a way soon.

I have been to
Williamsburg, VA to see the Colonial town there. I spent a week. Dialysis at Richmond
Oahu, HI for a week. Dialysis in Oahu.
Winsdor, CA In wine country, was that fun!
Pismo Beach, CA on the beach
Bellevue, Washington
Milwaukee, WI Leaving on Thursday for second trip there.
Palm Springs, CA
Indio, CA

It takes a little planning to get dialysis while on vacation, but you can go places and enjoy yourself.


November will be Oro Valley, AZ.

Then on to Washington DC.

There is hope to have an active life while on dialysis. A lot of it is determining you are going to have some kind of a life.

[Sunny]

It took me a while to be able to reply to your posts because they brought tears to my eyes.
You are all so right and so understanding of what things are like for me, because you've been there. Just when I think I'm alone in the world and no one can possibly understand my point of view, you are there to set me straight again. Thanks for that. I do need my reality check every so often. Yes, my husband is gone again on another trip I am physically unable to do, but my two kids were so wonderful last night. They both stayed home with me for dinner last night. I was very touched by that because being 18 and 20 years old, they are usually gone doing things with their friends. It was like they intuitively understood the depths of my dispair and wanted to come home and spend the evening with me. My husband is in Yosemite hiking, fishing, and climbing. Things I could do before,things I thought I would be able to do again with him after raising the kids. Now all I would be able to do with him is sit in the camp site, maybe go for short hikes. I could be invited, but feel so bad about holding him back I don't even ask. Maybe next time....

[paris]

Sunny, one more thought. I think it is ok to mourn the loss of our ability to do what we have always done.  I know I will find a new "normal" but there is a moment now and then, that I need to be sad.   You have raised good sons. I am glad you had a nice evening together.   

[Hanify]

Oh we all feel for you and defintitely know how you feel.  There is a great deal of grief to deal with - the you that you used to be is not there anymore.  However there is a new you, and that new you should go on the next trip and just sit by the camp fire and relax while everyone else does all the hard work.  It's one of the hardest things to get used to - letting other people do stuff 'cos you can't.  You'll find though that there are lots of people who are happy to make it happen for you.  I have been to LA and Vegas, as well as Australia and numerous trips within New Zealand, and am planning a trip to Samoa in August.  I am doing PD with a cycler, but can easily switch to manual PD if I need to.  But the newer haemo machines seem pretty amazing - especially the home haemo night time ones.  I think there's even portable ones now?  You will feel much much better when you start doing dialysis.  I think the days just before you start are awful cos you're so sick you can't think straight.  Thinking of you and your family.

[cherpep]

Sunny, my heart goes out to you more than you know.  My family and I have been planning a vacation to the mountains in about a week.  We are all very excited about it.  They talk about hiking and swimming and such, but I know I have my limits.  They are planning hikes to see waterfalls, but I realize that I will not be able to join them in all of the hikes, even though I would love to.  I just recently had a major setback and was released from the hospital today.  Although we are still planning on making the trip, I feel horrible that I will be holding them back even more.  I thought I could do some short hikes, but am very likely not even going to be able to do that.  But, I'm still gonna go - even if I never leave the cabin, I will look forward to spending that precious time with my family.  I hope to get out into the mountains, just to park myself in a pretty spot and sketch and read while they continue on their hikes.  I'm gonna do what I can, understanding my limits, but spending time with my family.  I can't do as much as I would like, but I'm gonna do whatever I can.  I hope you can too.

[Sunny]

Cherpep,
I hope you heal quickly from you surgury so you can get out on some of those hikes. We can't let this lousy disease keep us down for long. For 4th of July we are going to Lake Tahoe for a week. I'll be doing a lot of sitting around in tha cabin too. But at least I'll be there enjoying my family.

[joyfulmother]

I don't have anything to add to what's been sad but just wanted to say that I can relate to how you feel.  I am 43 years old with two young boys.  I am going to find a way to get my energy back and live my life!

[BigSteve]

I was having a discussion with the new social worker in the unit about some of the reasons for my
depression. I said the first reason was the difficulty of travel which used to do frequently. He said that
studies have shown this was highest ranked cause in studies of dialysis patients.  We went only for
weekend trips when I was on hemo. Now that I am on PD we are working on longer and longer
vacation, four days in August and a Caribbean cruise in November. Don't get too discouraged Sonny,
keep working and planning. You can do it.

[kristina]

Dear Sunny,
I don't know how to reply because
on and off I feel very similar and I am
also in a pre-dialysis-situation like yourself.
I think the most nerve-wrecking point
about our situation is that we don't know
when "our time is up" and everything has
to be put into place for dialysis.
It could be tomorrow, it could be in days,
weeks, months, and hopefully even years.
But we already have to make adjustments
because of feeling tired and exhausted
and I know it is very hard.
I wish you very good luck, Kristina.

[Sunny]

Very true about being pre-dialysis. We sit around for who knows how long wondering when our kidneys will fail. I've been wondering for 8 years now and the whole time my doctors have been saying,"any month now." I have been living on the edge for so long. I still think I will get that cadaver kidney before my time for dialysis arrives. The thing is, I can't tell if I'm in a state of denial or just the biggest fighter I know. I like to think I'm a fighter. That's how I managed to survive Goodpasture's Disease to begin with, a Disease with a high death rate. Can't help but wonder what is the point of trying so hard, though. Maybe it's time to give in since I can't do 1/2 the things I want anyway so I might as well just resolve myself to dialysis and forget about a cadaver transplant. I feel pretty darn sick and nauseous anyway. It's just I have felt sooooo much worse, when I had GP Disease, and I know things could always be worse than they are right now. At this point my plan is to wait till my GFR is 10% or lower and continue to pray for a miracle.

[Hanify]

Keep fighting, and keep praying for that miracle Sunny.  We'd all miss you if you didn't.  I really feel for you guys that are pre dialysis - it's so hard cos you feel awful, and can't really think straigh anyway.  And the thought of doing dialysis is, I think, worse than the reality.  Thinking of you and sending positive thoughts and prayers (whichever works for you) your way.

[kristina]

Hallo Sunny,
I have just read up on Goodpasture's Disease and it sounds very similar
to "my" chronic proliferative glomerulonephritis with MCTD/SLE
which is also known to have a very high .....rate.
It would seem we both have been doing extremely well so far,
and, most importantly, we are both still here.
I very much hope that someone somewhere
is doing some research and might come up with
a treatment and an answer to help us.
I wish you good luck and all the best
and send you my kind regards, Kristina.

[Des]

Very true about being pre-dialysis. We sit around for who knows how long wondering when our kidneys will fail. I've been wondering for 8 years now and the whole time my doctors have been saying,"any month now." I have been living on the edge for so long. I still think I will get that cadaver kidney before my time for dialysis arrives. The thing is, I can't tell if I'm in a state of denial or just the biggest fighter I know. I like to think I'm a fighter. That's how I managed to survive Goodpasture's Disease to begin with, a Disease with a high death rate. Can't help but wonder what is the point of trying so hard, though. Maybe it's time to give in since I can't do 1/2 the things I want anyway so I might as well just resolve myself to dialysis and forget about a cadaver transplant. I feel pretty darn sick and nauseous anyway. It's just I have felt sooooo much worse, when I had GP Disease, and I know things could always be worse than they are right now. At this point my plan is to wait till my GFR is 10% or lower and continue to pray for a miracle.

Why not start dialyis NOW? WHY WAIT? I know you will feel so much better. All the toxins can get out and you WILL feel better. Please think about it. Dialysis is not so bad (I am this writing on a IHD website... so funny) I am pre-dialysis and I cannot wait to start. I know dialysis is just another form of treatment but this site proofs that this treatment WORKS. Please fight till the end... LIVE until you die.
My thoughts are with you.....

[RightSide]

Sunny, I know how you feel.

When I was first diagnosed with kidney failure and had to go on dialysis, I was thinking about not bothering too.

But I learned from my reading that uremia can affect one's mental outlook, by poisoning the brain.  So I resolved not to make any snap decisions (on this or anything else), and give my nephs and my dialysis center a chance to work on me.

I'm glad I did.  My mental outlook has definitely improved as the poisons have been gradually removed from my body and brain. 

So I plead with you to give your doctors a chance too.  You may find that as the poisons are removed from your body, your mental outlook will improve, just as it did with me.  Even if you have to forgo a vacation trip or two, you still have the entire rest of your life ahead of you to take those trips later.  The places you want to visit will still be there in the future, waiting for you.

If you're feeling badly depressed, talk things over with both your social worker and neph.  Your neph may prescribe a short course of antidepressants to help tide you over until  the dialysis and meds kick in.

And remember:  Uremia affects your thinking.  Avoid snap decisions on any major life issues till you start to feel better.

[cherpep]

And remember:  Uremia affects your thinking.  Avoid snap decisions on any major life issues till you start to feel better.

GREAT ADVICE!!! 

[Phraxis]

Few of us can appreciate the simple pleasures as much as when they are denied to us. The blind man with music in his soul  pities the siighted man with no joy in his heart.  We must live the life that we are bestowed.

I can't say that I understand  because I did not have to face the demons of anticipation. I woke up one day on dialysis with little time for fears. But I have been often asked if I asked "why me?" It never occured to me to ask that question. it is simply not my way.

The point? Our bodies are frail instruments of our will. Imperfect and flawed, they suffer disease and injury. The torment can be such that our minds suffer but it is at those times our spirit must pull us through. And it sounds like now is a time that you may need to draw upon the depths of your own spirit. You have a family, and nothing can help protect your spirit like family. Perhaps a family conferance is in order. A simple meal, don't create stress for yourself -- KFC has the meal deals . . .  and some frank conversation might offer a path.

Safe journey.

[Sunny]

You are very loving, caring people.
Thank you for the good advice. My renal doctor has never mentioned that uremia can mess with the brain and effect psychological aspects. I just figure it's mostly the tiredness and nausea that wears on me. In August I have an appointment with a dialysis specialist at Stanford and I plan on asking all kinds of questions. Your ideas are on my list. I want to know which mode of dialysis would be best for me and when he thinks I should start. My local nephrologist seems to think I can hold out and I will get lucky with a transplant, but I'm beginning to wonder. So this will be my 2nd opinion with a doctor with tons of experience.