Let’s talk about it! Life on dialysis!

[Brooklynite]

As you guys know, I’ve been on dialysis for 20 years.  There are most days I wish I was not dealt these cards. 

When I first started dialysis back in 1999, I was in the mind set that everything is fine with me.  I’m normal like everyone else I just need to take extra steps to live.   I truly believe that and live my life pretty good. 

Having a support group, church family, family and friends help especially if your have one person in your corner very supportive.   However, not everyone needs to know what you’re going though, as some people will never understand.   

I have goals in life.  Now don’t get it twisted because dialysis has blocked some things I really wanted, and it cause a lot of hurt in my heart.  One thing that I really wanted was to have at least two more kids.   I have a daughter and she is my pride and joy, but I wanted a son as well.  It was hard seeing my friends and family having more kids.  Even though I was happy for them, inside my heart I was hurting.   

Do I still carry this hurt?  Yes, but I’m learning to let it go.   I have 3 goddaughters two which are very close to me.   However, I do date and never had a problem dating.  Nonetheless, there are times when I start to pull back thinking my date will not accept me because of my treatments.  It’s hard sometimes because I never know how the other person truly feels.   Yes, he will say something nice, but does he really feel that way or saying what he thinks I want to hear.

At one point, I can get on the machine and get off with no problems and go on with my life.  Nowadays, it not that easy anymore.  I am struggling to make it to work everyday and to hang out with my friends.  I refuse to let dialysis take control of my life.  I’m fighting back every day. 

I believe every since my PTH started acting up my ability to walk in normal speed started to affect me.   Senispar was working for 17 years and now it barely working.  I’m on a high dose (150mg).   I am waiting to be scheduled for a surgery.  I’m hoping my ability to walk in normal speed with come back once my surgery is done. 

Have anyone got the surgery?  If so, can you share your experience, so I know how to move forward?

Well I can go on and on, but I’ll stop here and save some for another day. 

Let’s talk about it!

What has your life been like on dialysis?   
   

[kitkatz]

My life has gone through cycles of being really really great to the lows of this is hell.  I have been on dialysis 20 years since November 2nd of 1998.  The high are good and I can do things and spend time with my family.  The lows are catching up to me now and they hit hard!  But it has been that way for most of my life.  Anxiety can be a real pain in the ass.  It can ride me and make things hard.  Meds to help my cortisol levels make me fat and blown out in the face.  I am trying to watch my weight and eat better now.  Just taking it one day at a time.

[Alexysis]

Overall, dialysis has bee a positive thing for me. Yeah, I don't have as much energy as I did before my kidneys started taking a nosedive, but at least I can still ride a bike and work. The time dialysis takes away is a problem, and a few other annoyances like 'breaking open' on the ride home after treatment are things I could do without. Still, I'm alive and in good shape for a man of 58 years.

[Riki]

I've been on dialysis for 15 years.  I was working when I first started, but after a few years, I found it hard, so I quit.  10 years later, I've graduated from college, and I'm looking for work again. *G*

I travel, I go out with friends, I spend time with family.  I'm looking for work in the travel industry.  In order to be certified in the Association of Canadian Travel Agents, I need 1800 hours of work in the field.  My goal, once I'm certified, is to be a travel councillor for people with disabilities.  I'm also legally blind.

I just got home from a trip to Philadelphia, where my best friend and I covered the Netroots Nation convention for the radio station that we work for.  We're going to Denver next year.  I'm really looking forward to it.

I try not to let dialysis slow me down.  I pestered my dialysis unit for years to get an evening shift so I could go back to school.  I think overcrowding in the unit made  happen faster than my constantly asking for it, but I still got my evening shift.  It takes at least 6 months of planning whenever I travel to the US, plus I have to pay up front for my dialysis, so I have to save money too.

I'm not on the transplant list, and I'm not really that worried about it.  I do well on dialysis, almost better than when I did have a kidney.  I would like to be free of the machine one day, but I'm willing to wait until technology catches up.

I've never married, and I've never had children.  When I was younger, I wanted kids really badly, but now that I'm older, I've realized that I would have been a poor mom.  I've no paitience.

My life hasn't turned out the way I thought it would, especially after my last transplant, 6 days before my 23rd birthday, but I'm happy with it.  No matter what life throws at you, you find your own joy, and I've found mine, at least for now.

[Alexysis]

.....It takes at least 6 months of planning whenever I travel to the US, plus I have to pay up front for my dialysis, so I have to save money too....

I'm pretty sure that OHIP will pay for dialysis in the US. Doesn't the insurance in P.E.I. do the same?

[Riki]

.....It takes at least 6 months of planning whenever I travel to the US, plus I have to pay up front for my dialysis, so I have to save money too....

I'm pretty sure that OHIP will pay for dialysis in the US. Doesn't the insurance in P.E.I. do the same?

PEI Health reimburses.  You still have to pay up front, and they will only reimburse you $423 CAD per treatment. if treatment costs more than that, then you eat it.  They don't care.

[Simon Dog]

Medicare here in the US provides no payment of reimbursement for treatment outside US or US territories, which means you pay for it in Greenland (at least for the time being).

As to caring - not part of the equation.

[Alexysis]

Medicare here in the US provides no payment of reimbursement for treatment outside US or US territories, ...

Which makes certain exotic US held ,locales like the US Virgin Islands or American Samoa good choices for tropical vacations...

[kitkatz]

Those areas are considered part of the US and have many benefits from it.