scared

[jonn r]

so since joe died.......i cant sleep at night.....i am afraid to sleep at night.....plus having my little girl around without amber is tough to

[goofynina]

Your not alone with those fears John, I am the same way.  My hubby comes home at 3:am and i am usually awake (from fear of going to sleep)    You know, if its your time to go, your gonna go no matter where or how, enjoy your life my friend and LIVE UNTIL YOU DIE (ya know what i'm saying?)    

[Chicken Little]

Joe's death has hit me pretty hard too.  I know I have serious chronic diseases and I feel like crap all the time, but I've always thought of myself as young and just going through a rough patch. 

Joe suffered from the same diseases I have and was younger than I am.   Did he know his time was coming or did he, like me, sort of live in denial about how serious this can be? 

[goofynina]

Joe's death has hit me pretty hard too.  I know I have serious chronic diseases and I feel like crap all the time, but I've always thought of myself as young and just going through a rough patch. 

Joe suffered from the same diseases I have and was younger than I am.   Did he know his time was coming or did he, like me, sort of live in denial about how serious this can be? 

I think we are all guilty of living in denial ChickenLittle but we all need to remember that even though these can be our last years (who knows right)  We cannot live these last years we have in fear of the unknown, time will go by too damn fast and we will miss out on so much, i say just go out and enjoy yourself when you can, however you can and as much as you can, cuz you just never know what God has planned for us.  LIVE UNTIL YOU DIE 

[st789]

That right Goofynina.

[skyedogrocks]

Yeah, Joe's death hit me hard too.  I have had the same fears about Rob.  He's just 1 year younger than him too.  I asked Rob how he felt and he just lives his life knowing he will get better.  I am glad, because that helps calm my fears.

I'm famous for poking Rob in the night to see if he is alive (i know, this is bad) and he gets so mad at me!

Like Goofy said, you have to live your life.  We have never stopped living, that's what keeps us going 

[jonn r]

yes i try to just live my life but its hard.....can anyone tell me what was wrong with joe??? because i thing i have the same problems...and the not sleeping at night is killing me....no phun intended ...

[paris]

Losing Joe makes us face our realities, and most of the time I try to avoid thinking of the future.  We have lost several members and it is always a reminder of why we are on this site. I have been very "down" lately and my daughter asked if I was upset because of losing an IHD member.  I think she is right. Makes me feel very vunerable and I am still fairly "healthy".

[jbeany]

jonn, you have to look at it as incentive to keep on top of your own health.  It's not the dialysis that kills us, it's the complications, and the biggest problem is the damage the fluid retention does to your heart, at least in my opinion.  There's only so much you can do once the heart is enlarged.  Epo always made a point of using himself as an example of what not to do when it came to his bone density and heart problems.

Joe was also diabetic.  That also causes a lot of damage, even without the kidney failure.  (I don't know for sure, but I'm guessing the diabetes caused the kidney failure, too.)

And yes, the only way to cope can sometimes be a bit of denial.  If you spend all your time thinking of what could go wrong, you don't have any energy left for the things that are going right.  So, yes, my feet are wet, and the Sphinx is in sight here!

[thegrammalady]

everyone in the world is dieing. some sooner, some later. the moment of birth is the beginning of death. it's not worth dwelling on. those of us with serious chronic illnesses are just more aware of it. life is precious. take care of yourself to the best of your ability and go on LIVING! i spent much of last friday evening in tears. i just couldn't help myself. i participated in a relay for life (for cancer research.) not the first time, however this time it suddenly hit me, i'm every bit as sick as the cancer patients everyone was walking for. i thought of joe. i thought of don, a guy at my center with prostate cancer as well as esrd who recently passed. in talking to one woman i was asked how does someone that young have kidney failure" little does she know. a good educational moment, i'm afraid i didn't do very well at it, i was too emotional. we all have our moments, we all have our fears. today all that is behind me. i'm thinking of 2 weeks with my family in oregon. YEA i leave next monday after dialysis, what fun. LIVE, it's all any of us can ask for.

[Ohio Buckeye]

We can only live a day at a time and make the most of each day.
None of us are promised a tomorrow.  A healthy person I know
had a massive heart attack and passed away recently.  No warning.
I remember a post Sara wrote that Joe had said that he would be
surprised if he lasted like more than a year.  He must have been
feeling really bad for a while.  His passing and others makes you
aware of the realities of this disease.  I hope when it comes my time
it would be going in my sleep like that.  That would be a
blessing.  I don't think of myself as dying but moving, but the sadness
is for those left behind, because I know what they go through.
I think Joe's passing rattled all of us.  I have been thinking a lot about him
and Sara. 

[glitter]

It did rattle me too, and I am glad it is being talked about a bit. I guess it reminds me to not take my husbands life for granted. Maybe I forget sometimes how fragile life is...and that dialysis is life support. I have been checking on him at night more too, just worried I guess. and scared.

[keefer51]

I didn't know Joe except what Sara wrote or said. When he died i felt bad. I feel bad when anyone dies from this. I have a strange way of looking at things i guess. When i had my first transplant i didn't worry about dieing at all. I tried to enjoy each day like it was my last. Being Irish helped too! Before i went on dialysis now i did everything i could do. Now that i am on it again i am glad and satisfied of those things. If i do sleep and don't wake up i Will die knowing i lived my life to the fullest of my ability. My only fear is since i live by myself it would be a while till they would find me. I have lost a few friends at my dialysis center. Each day i go i look to see who may not be there anymore. This last Friday we lost one and also one received a new lease on life a kidney. For what ever the reason i am not afraid anymore.

[jonn r]

thanks everyone for all the things you said.....i spent the night crying and you know i really dont feel much better.....maybe i just need to not look at this web site so much....we will see

 

jonn

[Amanda From OZ]

John, sorry to hear you have been feeling so bad. And i believe its very normal to feel like that when you hear about someone passing with the same disease.

But i for one would rather come on this site everyday and be educated and know the facts, so i can learn and make myself a stronger person mentally and physically. Its not what you know that can hurt you its what you don't know.

I do hope you feel better soon, you have so much to be grateful for, and a beautiful girl that relies on you.

Sending good thoughts your way.

Amanda
xxoo

[Ohio Buckeye]

I hope you're feeling better Johnr.

[jonn r]

I hope you're feeling better Johnr.

went swimming with maiah and got a free canoe....that sure made a big diffrence

[Ohio Buckeye]

Oh, that is great news! 
It does help to be busy and have fun like that and get one's mind off of problems.
I'm so glad you had a good time and it is a brighter day.
I bet she had a great day too. 
 

[tweetykiss]

Now I am starting to get confused and scared here.....do people die of just  having the disease even if they have sessions to do the works of the kidneys?  These doctors and nurses at the hospital tell us that my husband will feel better once he gets the dialysis and that things will get better......yes, reading that Sara's husband, Joe had passed on was very scary and off course I don't know the whole situation but what exactly is it that dialysis patients have to watch for once kidney failure happens and dialysis starts?

[jbeany]

tweety, heart damage is one of the most common complications.  It's because of the fluid retention.  If your gains between sessions are too high, the extra fluid on your system enlarges your heart.  It stretches out and then "deflates" when the fluid is pulled off during dialysis.  High potassium levels are also a serious problem - an imbalance of potassium can cause your heart to stop.  There's a long term risk of bone damage as well.  This is related to the phosphorous levels.  High phos, combined with high levels of parathyroid hormone, will leech the calcium out of your bones, causing osteoporosis. 

There are other things as well, but those are sort of the "big 3" that the docs worry about most.  They can be controlled, mostly through diet and fluid restrictions, but it's not easy.  If you can get a handle on your labs and keep down the fluid gains, then it's possible to live a very, very long time on dialysis.

[Danally]

My dad has been on dialysis for 6-months and I have read everything you can find about dialysis. I have discovered the key to survival is how well you take care of yourself. If your labs stay in range and you don't drink too much fluid you will do fine on dialysis. I know it is not always easy to do that but it will help you live longer.

[Rerun]

OK.... Reality Check.........

We would be DEAD already... if it were not for dialysis.  So, each day is frosting on the cake.  You can take care of yourself all you want but if you get the flu or on and on and on it will be hard to fight it because you can't DRINK all the fluids, eat all the fruits and vegetables etc...

Just live one day at a time and get right with the Lord.  Be prepared.

I've been ready to die for 20 years.  I think my family is ready to kill me just to get it over with!   

[Sluff]

Rerun you crack me up girl... Not that I think this subject is funny but you have a way of lightening the seriousness sometimes. 

[tweetykiss]

tweety, heart damage is one of the most common complications.  It's because of the fluid retention.  If your gains between sessions are too high, the extra fluid on your system enlarges your heart.  It stretches out and then "deflates" when the fluid is pulled off during dialysis.  High potassium levels are also a serious problem - an imbalance of potassium can cause your heart to stop.  There's a long term risk of bone damage as well.  This is related to the phosphorous levels.  High phos, combined with high levels of parathyroid hormone, will leech the calcium out of your bones, causing osteoporosis. 

There are other things as well, but those are sort of the "big 3" that the docs worry about most.  They can be controlled, mostly through diet and fluid restrictions, but it's not easy.  If you can get a handle on your labs and keep down the fluid gains, then it's possible to live a very, very long time on dialysis.

Hi JB.

Thanks for explaining all this to me....now how do we know if his heart is enlarged?  Is this is seen in the labs?  I do what I can to watch his K levels and always ask the doctors about it and thankfully it is always at a safe level.  Now as far as phosphorous levels, is that too checked in the labs and do they have meds for it or is that the dietician's job?

It is a relief to know that one can live long on dialysis and to read about the members here who have been on dialysis for a long time since I see they are living long and still have time.

[skyedogrocks]

Your husband's  Neph should have told you what to look out for, what to eat, what not to eat and what levels to keep in check. 

The dialysis center will take his labs every month to make sure his levels are in check.  They will let you know if there are any red flags.  He most likely has a prescription for Renegel or Phoslo, these are the phospherus binder to take with every meal.  If he has had any extra phospherus, just take extra binders.  There will also be a nutritionist who can help you on what foods to eat and what to stay away from

Your husband should also see a cardiology specialist to monitor his heart.