What has dialysis taken from you?

[Icare]

  the ability for my wife and I just to curl up on the couch together. She is in so much pain and discomfort. That is one thing dialysis has stolen from us.

[RichardMEL]

Moved Thread to General Discussion

-RichardMEL, Moderator

[BattleScars]

It's taken quite a bot from me. I'm struggling finding work that can accommodate my dialysis schedule (4x per day.) All the little inconveniences like having to get monthly labs and doctors visits. Having to watch what I eat, take a ton of pills. Some of the pills themselves wipe me out and make it hard for me to get anything done during the day. Dialysis has taken away my independence, if it wasn't for being on dialysis I would move back home in a heartbeat but I feel stuck here on the East Coast like a prisoner.

Don't get me wrong, I'm grateful that it's saving my life, I just miss what I once had. You take these routine things for granted when you are healthy.   

[obsidianom]

I prefer to look on positive side. My wife was SO sick prior to dialysis. Now she walks on treadmill daily 25 minutes and SINGS. It has saved her life and given us a chance to live on together. She uses a feeding tube for nutrition and water due to damaged stomach , but despite that machine at night and the home dialysis machine we run 5 days per week she is doing very well. She is the bionic woman.
Yes we have our issues with dialysis. The staff at the center we deal with are intrusive . We have recently had a fistula problem requiring return to catheter for awhile . Some times it is scary to see how easy it is for things to go wrong. We live on the edge. BUT  we do better with dialsis than without it.

[cdwbrooklyn]

While I do understand that dialysis can take some things you enjoyed away, it’s here to provide better health so you can continue to enjoy life. Without it, we all are dead. 

It is now going on 14 years since I’ve started dialysis and I always had a job.  Thank God for His Mercies!!!!   

I use to say that dialysis stole this and that from me, may that be true; I realize I cannot swell on the past.  Things will never be the past again so I had to move on and decide what I can do now.  I refuse to sit around and swell on the past while the present is fading away.  I’m not sure how long I’ll be in this world because tomorrow is not promise to me.  However, I will live my days as if it’s the last day and enjoy every moment of it including enjoying the time I’m on the machine. 

Positive thoughts positive energy!!!     

 Obsidianom, I admire your strength and positive outlook.  I’m glad your wife is getting all she can out of dialysis and living your life.  That’s what I’m talking about!!!!

[obsidianom]

CDWBrooklyn, thanks for the kind words. You are right about the positives . Dialysis keeps us going.
I tried to send you a personal message but was blocked. Can you unblock it?
thanks . Obsidianom in Maine

[cdwbrooklyn]

My apologies for the block but I didn't know it was blocking personal messages.  How do I unblock it?

[obsidianom]

Go to your profile and then on left side is list. Down to Personal messaging. Click on that , then go to receive personnal messages.  Set thet to receive from all members.
I will write later to you after yo set that . good luck.

[cdwbrooklyn]

Done.  Sorry for the delay was very busy yesterday.   Thanks.

[ianch]

Dialysis has required modifications to my life, but has it taken anything?  hmmm probably, but i prefer to look at what it has created for me.

- I'm never sick. Always had a fast internally processor but that machine strips viruses so a cold today is always history tomorrow - love that.
- I've never had a more positive review from my employer.  That know all about what i go through and yet have declared im one of the strongest and most productive in my IT team. 
- Has made the relationship with my wife (of only 2 years) stronger.
- Inspired me to create the most advanced treatment plan possible/practical under HomeD
- Now I've written software to manage treatment plans and created a web channel to promote it.
- Working on formalizing a dialysis technician training program overseas
- Working on more cool software enhancements for patients and consultants.
- Planning a conceptual holiday-unit, with the intention of giving HomeD patients places to stay around the country.
- and building a house next year.

Yes, we can focus on the negative and sometimes the stress is a major influence in how things are approached.  But i want to see my baby girl (due in Nov) to grow up and be successful, and only a positive attitude will enable me to do that.

 
       

[cdwbrooklyn]

Wow Ianch, I'm impressed.  You are amazing.  The only thing we all need to understand is that what works for one person may not work for the next person.  I believe that every treatment weather it's in-center, short or long term NXStage, PD, etc... works better for that individual. Keep up the positive attitude as you are inspiring someone. 

[justme15]

well...lately i've been feeling resentful and a little depressed. so, I will answer the original poster's question like he/she wanted.... Dialysis has taken away my ability to have children.  and i'm upset about it.  it is so hard to see EVERYONE else around  me that is my age, have children and move on with their life, while my life is centered around dialysis and doctor's appts.  thanks a lot ESRd/dialysis.
however, i am glad that i am able to work full time and my husband still loves me, whether i'm able to bear his children or not.

[BattleScars]

I learned something recently. In this day and age of "survivors" of this disease and that disease, and all this positive outlook crap, I think it's OK to sit back and feel bad. Now I'm not saying to let it ruin your life or jump off a bridge, but I think many of us are shamed for feeling down every once in a while. It's OK to have bad days, it helps to process the bad stuff, it actually helps us grow if we handle it right. Just like it's good to get in a good cry or just announce to yourself that life sucks. So many of us are forced into this PC garbage of positive thinking and appreciate what you do have and it could always be worse, blah, blah, blah. That's all true but it doesn't apply every day. Sometimes you just need to mourn or be pissed off. It's like when someone close to you dies and someone, with the best intentions mind you, tells you that that person is in a better place, or they're suffering has ended. Don't you just want to punch that person in the face? Instead a friend should lend a supportive ear and refrain from telling someone how they should feel, or offer up advice that isn't asked for. The same goes with battling disease. Sometimes it's just OK to take a negative inventory and feel bad for a little bit. There's no shame in that. Just don't let it run your life. 

[noahvale]

^

[galvo]

Battlescars, I take my hat of to you.The next smiling, positive-thinking galoot that tells me to either 'cheer up' or that 'you're looking well' after a dialysis  session will get my size 12 boot up his/her jacksie!

ianch, you state that you're 'never sick'. I am honestly delighted for you. I am sick (we won't go into details). Every other soul I know, who is on dialysis, is sick, or was sick before they died.

[ianch]

Thanks Galvo, I appreciate your comment. To you and everyone else I do apologize for not respecting this post as I should have.  My bad, I read it the wrong way and didn't think enough before posting.  I did suffer quite a lot under the in-centre process and possibly came close to asking the question of whether to continue - i was 38.  Not had a day off since I built up to the 10 hour sessions, but it is a constant effort. 

I am totally shocked by the significant difference in treatment approaches between our countries.  I know the specialists talk about it, but to see it here in so many comments is definitely an eye opener.

   

[Grumpy-1]

Thanks for posting Battlescars.  Glad to know that I'm not the only one that feels down and has a "pitty party" every so often.  I tell my wife that all I want is to be "Normal".  Now I know my "normal" and some one elses "normal" are not the same.

To answer this post:
I've lost leg strength, that was the first thing to go. Can't climb stairs, get out of a chair with out using my arms to assist.
I've lost (or gained) numbing session in my feet and hands.
I've spent more time in the hospital than I care to.
Can't do yard work.
Can't run and play with the grand kids.
Sex has gone out the window. Nothing works right there anymore.

But I'm still vertical and able to work. While I don't see anything positive in having kidney failure and what comes with it, I'm able to cope and adjust. And I have a GREAT support team in my family and friends.  My family and some friends has seen me at the lowest point of depression and "bless them" for their support. None have tried talking me out of it, all have been there to hold me, give me a kiss and hug and an arm to lean on (physically and mentally).

Yes, All of us have lost something, but most of us cope and move forward.     to all of us and the caregivers that are supporting us.

Grumpy

[PatDowns]

Thanks Galvo, I appreciate your comment. To you and everyone else I do apologize for not respecting this post as I should have.  My bad, I read it the wrong way and didn't think enough before posting.  I did suffer quite a lot under the in-centre process and possibly came close to asking the question of whether to continue - i was 38.  Not had a day off since I built up to the 10 hour sessions, but it is a constant effort. 

I am totally shocked by the significant difference in treatment approaches between our countries.  I know the specialists talk about it, but to see it here in so many comments is definitely an eye opener.

 

I understood your response and didn't feel a need for an apology.  Only shows not everyone thinks alike on some issues!

[obsidianom]

In the US if you want to individualize treatment you need to do HOME dialyisis. That is why I pushed to have my wife home from day 1 of in center. She HATED in center and felt lousy every day. After 2 months of pushing HARD we started Nxstage training. Now she feels good most of time and WE have control over treatment. WE do it 5 times per week . the total time on dialysis is almost 50% more than in center which makes a HUGE difference. Also no two days in a row off. That is a KILLER.
WE dont do enough home hemo dialysis in the US. Its sad. People suffer a lot in center.
My advice to all is to try to bring it home if you can. You will see a new world and feel like a new person. I am glad to have my wife back.

[marlinfshr]

My career. I have worked the sportfishing circuit for over 20 years. I stopped travelling for a bit a couple years ago to buy a house here in MD. I had plans to slowly start a business (same line) while fishing in season and a few years later see how my business is going and start traveling again. Well, those plans went to crap. My traveling days are now over and at 45 years old I can probably say I'll never see Costa Rica or the Caribbean again except for a short fly in several day trip. No more boat deliveries for me which was one of my favorite parts of my career.

I am keeping optimistic though and hope with a transplant I can get a job running a private boat where I live in season. At least it will keep me involved. Though to get shot down again I don't think I'll be able to renew my captain's license with kidney problems. So even looking ahead, there goes my career.

[ianch]

Thank you obsidianom, your absolutely correct. Its been suggested the cause is the private nature of your health care and the income lost by promoting HomeD.  I see the word 'profit' always popping up on this site.  In NZ and Aus medical care is a state expense and that is the difference.  Ironically to get the best dialysis treatment we actually need to spend the least amount of money.

NZ and AU are world leaders in HomeD therapy and I'm looking for some public stats to prove it :-)

[Sugarlump]

Freedom to travel
Even within the Uk it is getting harder and harder to find units that will accept temporary patients for holidays/visiting relatives etc 

[ianch]

Oh yes, miss the travel especially as I visited over 30 countries before the big D.  In NZ we have a few mobile units (camper-vans) decked out with machines for use. The challenge is that the country uses more than one supplier so certification in multiple machines is needed.

I'm very keen to find a private or private/public solution for this within NZ, and travel is a focus for KiwiMedTec.

 

[KatieV]

Oh yes, miss the travel especially as I visited over 30 countries before the big D.  In NZ we have a few mobile units (camper-vans) decked out with machines for use. The challenge is that the country uses more than one supplier so certification in multiple machines is needed.

I'm very keen to find a private or private/public solution for this within NZ, and travel is a focus for KiwiMedTec.

What type of dialysis machine do you use at home? 

I have a NxStage and recently went on a long weekend camping trip.  We own a 22' travel trailer (bumper pull) and sucessfully used the NxStage in it with pre-mixed bags.  It was great to be free to participate in the family trip!  I'm glad my husband is williing to lug around "Lard Ass", as he calls the machine!  It traveled in the truck buckled into the back seat for safety.

[ianch]

In NZ those who qualify for HomeD are provided Fresenius (usually 4008b) or Gambro machines, depending on location.  They are on a 4 or 5 year lease.   Some will do short hours but the machines are capably of 10 hour sessions (I pushed mine to 11.5 but that's against operating guidelines).  6h or greater is the promoted therapy here as longer and slower is shown to capture more molecules.

NextStage is available privately but as health is state funded there are no insurance products covering dialysis.  I think I'm the only one in my city (of 1.5m) has inquired about NextStage but the 40k buy price and 20k annual operating cost was too high for a travel function.   
 
My inlaws are in the Philippines so I can afford dialysis there.  Did 3 weeks in Dec 2011. 

I agree that NextStage is ideal for travel.  For non-travel purposes I personally wish to maintain my 150hr per month treatment plan as it filters over 2000 litres.  I'm not doing anything anyway as I'm asleep lol