Hello from Long Island

[jhodges58]

Hi:
 
My name is Jon, I'm a 51-year-old pre-dialysis person (they expect me to hit the chair by the end of the summer).

It's been fun being in renal failure so far -- had fistula surgery at the end of February that led to several bleeding episodes and a pseudo-aneurysm that kept blowing up. They finally had to go back in last week to repair the damage and I lost the fistula, so after two months and blowing 12 days of sick/vacation time on this, I'm back to square one.

(I guess this is where I get to say "I Hate Dialysis").

So I'm with a new vascular surgeon who just sonogramed both arms on Friday and will talk to me this week about the best place to try again. Still holding at 3.9-4.1 on my blood work, so hopefully I'll get enough time to put in a new fistula and have it mature before I need it.

I'm trying to get a real idea how much time I'm going to have to miss from work when I start up hemo dialysis. My nephrologist likes to put his patients in the hospital for three days to start them off but I have no idea how much time realistically it'll be before I can truck back into the city each day for what's basically a desk job. The center I plan on using will let me hit the chair Tuesday/Thursday/Saturday mornings and supposedly they have a bunch of people who are still working full time.

Thanks for giving me an area to rant -- trying to stay upbeat around the wife and kids, but it's difficult.

[dwcrawford]

Hi Jon, I'm older than you but take it from me, the whole process sucks.  My fistala is not mature yet and I've been usint a cat for the past 3 week.  I too had to go in the hopital after the surgery and started dialysis there.  It was pretty easy.  But not so at the center.  I don't work (I'm not a bum, I'm retired) but my doctor said evening hours might be better if I was going to continue doing part time and volunteer work because I could go home and sleep afterward and then probably feel pretty good the next morning.  4 hours is a long time.  Gets really boring.  But we can make it.  I am not into TV that much, but we each have one.  I look for people to talk to and count the tiles on the ceiling.  This is 4th week coming up (counting the week in the hospital) and it is less and less daunting as time goes by.  We will survive.

[jhodges58]

Thanks for the reply, dw.

There's a hospital where I could do evening hours -- it's just a hike from where I live and I'm a little worried about getting there on dark, snowy nights in winter. Love to hear from others, especially those who have done it both ways (mornings and evenings) to see what people feel is easier. Unfortunately, the hospital dialysis room is kind of depressing and has a lot of patients from the next door nursing home, so it isn't a particularly lively bunch.

I'm suppose to take a tour of the center in a couple of weeks which hopefully will answer some of my questions.

[willowtreewren]

Welcome, Jon. 

That really sucks about your fistula. I hope your new vascular surgeon does a better job.

My husband started dialysis about a year ago. We now do home dialysis and still work. It isn't easy, but it is better than being at the mercy of the schedule of the dialysis center. We can be flexible with our schedule. There are several options, but if you have (and are getting a new) fistula, it sounds like you have opted for hemo. If your wife is a willing partner, you may want to look into doing HD at home.

This is a great place to gain knowledge and community. Come often to rant or ask questions (or just to have a great time hanging out with folks who understand what you are going through.

It is good to have you on board.   

Aleta

[monrein]

  Jon.  We have tons of collective experience that I hope will be helpful and answer some of the worries/questions you might have. 

[Rerun]

Jon, you'll have to talk to Zach who lives in New York and is a very active member on this site.  He has done dialysis for over 20 years and still works full-time.  But, he has an excellent dialysis access which makes a huge difference.

Have they talked to you about PD?  Peritoneal Dialysis is an option where you do exchanges at night and are free during the day.  Also, have you thought about a transplant.  Many options to look at.

I would really suggest that you take a 2 month leave of absence when you start dialysis.  They can't fire you.  Just tell them you need to get a handle on this dialysis thing.  Otherwise you will be pulling your hair out trying to do the right thing for work and yourself.

Come here....IHD.... for answers.                 

[kellyt]

   jhodges.  You've come to the right place for answers, as well as to rant.  My first fistula done in Sept 2007 didn't work (never did) and it was in my left wrist.  I had the vein mapping done and everything.  Apparently the veins in my wrist were small, but the surgeon thought they would work.  So I had my 2nd fistula placed Oct 31st of 2007 in my left upper arm (inside elbow).  Fortunately and unfortunately I never got to use it, as I translanted in Nov 2008.  Now I just have the love scar.   

So many fun things to look forward to.  :p  There will be someone here that will be able to feel your pain.  This site is amazing.  Come here often.  Pretty soon you'll be confident and in charge of your life once more.   

[Joe Paul]

Welcome Jon, good to have you aboard.

[willieandwinnie]

  Jon. So glad that you found us. We are a great source of information and support. You will find some great laughs here too. Please post often and keep us posted on your journey. 

[Zach]

Welcome to our community!


I work too, so Tu, Thur and Sat was best for me--only two working days to deal with dialysis.
Years ago I started on the 5am shift, but would get a bit "punchy" at work by 3pm, so I eventually switched to the 6pm dialysis shift--much better.

Nassau or Suffolk?

[jhodges58]

Zach:
 
I'm in Suffolk, but I live right next to the Ronkonkoma train station and the new dialysis center is in Hauppauge just off the L.I.E. so it's pretty close. I figure I do the dialysis and then take another 45-minute nap on the train trip in.

I work in a two-shift print studio at an advertising agency, so I've got a little flexibility of popping in late and working late. Got to see how late the center will let me hit a chair -- not sure if a 6 p.m. "seating" is available.

Thanks for the reply (to the others on the forum as well). I'm probably going to have a lot of questions over the next few months. I get the feeling my nephrologist is suger-coating a lot of this so I don't get too overwhelmed, but it's time to figure out what's ahead.

--jon

[Romona]

 

[MandaMe1986]

Hello Jon happy to have you. 

[Bajanne]

Welcome to our community, Jon!  You did a very wise and proactive thing by joining our group.  I found IHD just before I started dialysis and I can't begin to say what a help it was from the start.  this is the place for information, support - a caring group of people.   It is much more than just a forum - it is a genuine family.   There is lots here to read to prepare you for dialysis.  But don't just read.  Post and let us know what is going on with you.
Looking forward to hearing from you.




Bajanne, Moderator

[paris]

   Jon!  Glad you joined us.  I can see that members have already jumped in to answer questions and make you feel welcome.  You will find all the information you are looking for that your doctors haven't told you.  They do tend to give you only so much information at one time.  Guess they don't want to scare us too bad!   And you will find incredible support.  We do care about each other and once you join--you are family    Post often and let us get to know you.  Welcome to IHD 



paris, Moderator

[Hanify]

Just found your intro post.  Argh.  What a time you're having.  How's it going now?  Welcome aboard.

[Razman]

My name is Jon, I'm a 51-year-old pre-dialysis person (they expect me to hit the chair by the end of the summer).

  Its great that you joined and I think that you've found the best place to share with others.  Don't plan on hitting the chair to quickly.  I was once told that and I just keep on going and going and going.  Please stay in touch.

[David13]

Welcome, Jon!   

You will find a lot of useful information and support here.  I hope to see you posting often.