Living Despite Dialysis

[LifeOnHold]

     I've been on dialysis for thirteen years, and in some ways it's as if I've joined the Army:  I have to report to the unit three times a week, I undergo physical stress from dialysis, and then I have to go back to 'civilian' life after my treatments. With all of these adjustments having to be made each day of treatment, it's no wonder that dialysis patients have a high rate of depression.

     I started dialysis at age 23. I was sure that there had to be a mistake-- dialysis was for OLD people! I'd had lots of strep throats and urinary tract infections, and those had set the stage for kidney failure. Since I was barely surviving on dialysis, I got a kidney transplant from my mother, but that only lasted three years. I tried peritoneal dialysis, but within three years I had to quit that because of peritonitis infections that destroyed the membrane. There was no other option--  I had to go back to hemo. The thought of more needles terrified me. I had three months of panic attacks, during which time I almost quit treatment.

     I couldn't figure out why I was freaking out so much; it wasn't like dialysis was new to me! But it seemed like I could remember pain better than anything else, and every time I saw the dialysis unit's building, I broke out in a cold sweat. Once the needles were in, I calmed down, but the panic leading up to that point was unbearable. I felt like the walls were caving in on me.

     At that point, I was still using lidocaine to numb my arm for the needles. Surprisingly, the day I went without the lidocaine was the day my panic attacks stopped. Now I wonder if I might have been allergic to the lidocaine! My arm used to swell at the injection sites, and it had never really worked in the first place-- the pain I felt without the lidocaine was the same pain I felt WITH the lidocaine.

     Getting over the panic attacks helped me regain some sense of control over my life. It's tough to feel like an adult when for twelve hours every week, you have to sit in a chair like a kid who's being punished for misbehaving. Then, after a four-hour 'time out', you have to get out of that chair and be an adult again. When you get home, you have to stop being a patient and go back to being a regular person, and you can't just sit in a chair and have people bring you things. I think this is the most disorienting thing about dialysis: When you go into the unit, you have to surrender your life. When you finish your treatment, you have to take your life back. Both of these actions are hard for a supposedly independent adult; having to do this three times a week makes you seriously question your life.

     At least it made me question MY life. I think my willingness to think about death has actually made me healthier. I'm willing to take a few more risks than my frailer fellow dialysis patients. I want to actually live, not just survive until it's time for another dialysis treatment. It's painful to watch these people just drag themselves in and out of the unit. But most of them are quite a bit older than me, and have many more health problems besides the kidney failure. In a way, starting dialysis at a young age worked to my advantage as far as adapting to the physical stress of the treatments. I can walk out of the unit at the end of the day and not look like I've just had the crap beaten out of me.

     In fact, if you looked at me, you'd never know there's anything wrong. And I want to keep it that way.

[Epoman]

     I've been on dialysis for thirteen years, and in some ways it's as if I've joined the Army:  I have to report to the unit three times a week, I undergo physical stress from dialysis, and then I have to go back to 'civilian' life after my treatments. With all of these adjustments having to be made each day of treatment, it's no wonder that dialysis patients have a high rate of depression.

     I started dialysis at age 23. I was sure that there had to be a mistake-- dialysis was for OLD people! I'd had lots of strep throats and urinary tract infections, and those had set the stage for kidney failure. Since I was barely surviving on dialysis, I got a kidney transplant from my mother, but that only lasted three years. I tried peritoneal dialysis, but within three years I had to quit that because of peritonitis infections that destroyed the membrane. There was no other option--  I had to go back to hemo. The thought of more needles terrified me. I had three months of panic attacks, during which time I almost quit treatment.

     I couldn't figure out why I was freaking out so much; it wasn't like dialysis was new to me! But it seemed like I could remember pain better than anything else, and every time I saw the dialysis unit's building, I broke out in a cold sweat. Once the needles were in, I calmed down, but the panic leading up to that point was unbearable. I felt like the walls were caving in on me.

     At that point, I was still using lidocaine to numb my arm for the needles. Surprisingly, the day I went without the lidocaine was the day my panic attacks stopped. Now I wonder if I might have been allergic to the lidocaine! My arm used to swell at the injection sites, and it had never really worked in the first place-- the pain I felt without the lidocaine was the same pain I felt WITH the lidocaine.

     Getting over the panic attacks helped me regain some sense of control over my life. It's tough to feel like an adult when for twelve hours every week, you have to sit in a chair like a kid who's being punished for misbehaving. Then, after a four-hour 'time out', you have to get out of that chair and be an adult again. When you get home, you have to stop being a patient and go back to being a regular person, and you can't just sit in a chair and have people bring you things. I think this is the most disorienting thing about dialysis: When you go into the unit, you have to surrender your life. When you finish your treatment, you have to take your life back. Both of these actions are hard for a supposedly independent adult; having to do this three times a week makes you seriously question your life.

     At least it made me question MY life. I think my willingness to think about death has actually made me healthier. I'm willing to take a few more risks than my frailer fellow dialysis patients. I want to actually live, not just survive until it's time for another dialysis treatment. It's painful to watch these people just drag themselves in and out of the unit. But most of them are quite a bit older than me, and have many more health problems besides the kidney failure. In a way, starting dialysis at a young age worked to my advantage as far as adapting to the physical stress of the treatments. I can walk out of the unit at the end of the day and not look like I've just had the crap beaten out of me.

     In fact, if you looked at me, you'd never know there's anything wrong. And I want to keep it that way.

You and I have a few things in common, we both started in our early twentys and both have been on for over a decade. Although I have never had a transplant or tried PD I have been on for 11 years straight. And I tell you if it wasn't for my weak bones and being in a wheelchair I would feel ok. But I got to tell you the broken hips really cause alot of emotional pain. What really hurts is I have a 8 year old son and it is hard to keep up with him, and he doesn't remember when I used to walk.  THAT really bothers me.

But thank you for your story I think it is very inspiring.

[Rerun]

Right now nothing about me looks sick and so people don't understand the problem.  Their expatations are higher of me because they don't "see" a problem.  So, when I complain, I think they just think I'm whining.  I have my second dialysis session today.  Why do we have to surrender our control when we go in.  I'm a paying customer.  What part of the "Health Care Team" am I.  I should be the quarter back!  But, they don't listen to me.  When I try to tell them I need heparin because I clot easy, they ignore me and guess what my Hickman clotted 10 minutes before I was to get off.  Then they have to get the syrenges out and start pulling like they are uncorking a bottle of wine.    Darla

[LifeOnHold]

No heparin??? Everyone gets heparin at our unit except for people who are on a high dose of coumadin.


I would say to your charge nurse, "If my catheter keeps clotting, doesn't that mean I need heparin?  Is there any reason why I'm not getting it?"  There might be a reason, or it might be an oversight--  it's better to come right out and ask so you can find out why.  Being direct is best at dialysis.

[Epoman]

No heparin??? Everyone gets heparin at our unit except for people who are on a high dose of coumadin.


I would say to your charge nurse, "If my catheter keeps clotting, doesn't that mean I need heparin?  Is there any reason why I'm not getting it?"  There might be a reason, or it might be an oversight--  it's better to come right out and ask so you can find out why.  Being direct is best at dialysis.

You need to MAKE them listen. It's not their body their screwing with. Tell them what you want/need and demand it. Remember to them your just another patient so you need to make yourself heard! No one else will stand up for you so you MUST stand up for yourself.

[Marina]

Life  on hold,
         Yours  is  a  very inspiring  story.  it  just  goes  to  show  you that  attitude is  everything.               Also  It  made  me  think  of  the  saying  "WHAT  DOESN'T  KILL YOU  MAKES  YOU STRONGER"                           
       I'm  a PD  patient  since  Apr. 2004  and  although  I've  never  been  depressed  per  say,  but  I  have  days  when  I  feel a  bit  blue,  but  heck   who doesn't  have  those  "blue  days"?         
     Thank  you  for  your  story  reading  it    brought  everything  into  perspective  once  again.

                            Take  Care!!!!!!!!!!!
                                     Marina   

[Epoman]

Life  on hold,
         Yours  is  a  very inspiring  story.  it  just  goes  to  show  you that  attitude is  everything.               Also  It  made  me  think  of  the  saying  "WHAT  DOESN'T  KILL YOU  MAKES  YOU STRONGER"                           
       I'm  a PD  patient  since  Apr. 2004  and  although  I've  never  been  depressed  per  say,  but  I  have  days  when  I  feel a  bit  blue,  but  heck   who doesn't  have  those  "blue  days"?         
     Thank  you  for  your  story  reading  it    brought  everything  into  perspective  once  again.

                            Take  Care!!!!!!!!!!!
                                     Marina   

Marina welcome to the board, please make a NEW POST in the "Introduce Yourself" section and tell us your story. Again please make a new post do not reply to someone elses thread. You deserve your OWN post. I look forward to hearing your story.

[kitkatz]

     I've been on dialysis for thirteen years, and in some ways it's as if I've joined the Army:  I have to report to the unit three times a week, I undergo physical stress from dialysis, and then I have to go back to 'civilian' life after my treatments. With all of these adjustments having to be made each day of treatment, it's no wonder that dialysis patients have a high rate of depression.

     I started dialysis at age 23. I was sure that there had to be a mistake-- dialysis was for OLD people! I'd had lots of strep throats and urinary tract infections, and those had set the stage for kidney failure. Since I was barely surviving on dialysis, I got a kidney transplant from my mother, but that only lasted three years. I tried peritoneal dialysis, but within three years I had to quit that because of peritonitis infections that destroyed the membrane. There was no other option--  I had to go back to hemo. The thought of more needles terrified me. I had three months of panic attacks, during which time I almost quit treatment.

     I couldn't figure out why I was freaking out so much; it wasn't like dialysis was new to me! But it seemed like I could remember pain better than anything else, and every time I saw the dialysis unit's building, I broke out in a cold sweat. Once the needles were in, I calmed down, but the panic leading up to that point was unbearable. I felt like the walls were caving in on me.

     At that point, I was still using lidocaine to numb my arm for the needles. Surprisingly, the day I went without the lidocaine was the day my panic attacks stopped. Now I wonder if I might have been allergic to the lidocaine! My arm used to swell at the injection sites, and it had never really worked in the first place-- the pain I felt without the lidocaine was the same pain I felt WITH the lidocaine.

     Getting over the panic attacks helped me regain some sense of control over my life. It's tough to feel like an adult when for twelve hours every week, you have to sit in a chair like a kid who's being punished for misbehaving. Then, after a four-hour 'time out', you have to get out of that chair and be an adult again. When you get home, you have to stop being a patient and go back to being a regular person, and you can't just sit in a chair and have people bring you things. I think this is the most disorienting thing about dialysis: When you go into the unit, you have to surrender your life. When you finish your treatment, you have to take your life back. Both of these actions are hard for a supposedly independent adult; having to do this three times a week makes you seriously question your life.

     At least it made me question MY life. I think my willingness to think about death has actually made me healthier. I'm willing to take a few more risks than my frailer fellow dialysis patients. I want to actually live, not just survive until it's time for another dialysis treatment. It's painful to watch these people just drag themselves in and out of the unit. But most of them are quite a bit older than me, and have many more health problems besides the kidney failure. In a way, starting dialysis at a young age worked to my advantage as far as adapting to the physical stress of the treatments. I can walk out of the unit at the end of the day and not look like I've just had the crap beaten out of me.

     In fact, if you looked at me, you'd never know there's anything wrong. And I want to keep it that way.

 
I know this is old, but still very much up to date with how I am feeling about things right now.  Lifeonhold had a way of expressing things I still cannot say about dialysis.  (I wish she were still here.  I think we would have had a great time together!)

[DeLana]

Thanks for bumping this, I'm sure many new members will enjoy reading it.

LifeOnHold was an amazing woman, in fact it took me a while to realize that she died back in February; her posts are still everywhere on these boards and are just - well, enlightening, inspiring, and eye-opening for health care workers in the dialysis field.  I wish I had known her.

DeLana

[angieskidney]

LifeOnHold was an amazing woman, in fact it took me a while to realize that she died back in February; her posts are still everywhere on these boards

Ya most people don't realize this but there is a Dialysis Memorial Page that Epoman was caring enough to make

Here they live on forever!

Another person on that page is Jamie who I knew personally and was a shock since I didn't honestly think any fellow dialysis peer my own age would face death so soon. It is good to know they have made a difference though. They also make us realize that we must live our lives for now and not for the future. Hope that sounds right .. not sure how to word things in my head on this.

[DeLana]

LifeOnHold was an amazing woman, in fact it took me a while to realize that she died back in February; her posts are still everywhere on these boards

Ya most people don't realize this but there is a Dialysis Memorial Page that Epoman was caring enough to make

Here they live on forever!

Another person on that page is Jamie who I knew personally and was a shock since I didn't honestly think any fellow dialysis peer my own age would face death so soon. It is good to know they have made a difference though. They also make us realize that we must live our lives for now and not for the future. Hope that sounds right .. not sure how to word things in my head on this.

Thanks for the info, I didn't know about the Memorial Page, which is great BTW.  And you got your point across very well - it's a good one that we all need to keep in mind.

DeLana   

[angieskidney]

you got your point across very well - it's a good one that we all need to keep in mind.

DeLana   

Thx  


I guess it is soloming but someone my age usually thinks "that couldn't happen to me" but it is different when you have the exact same health as someone your age who died. Then .. you kinda can't realisitically say that...


Sorry I just wanted to add that as I didn't know how to word that right earlier.