New to PD

[Aldente]

Happy Birthday rookiegirl. Many more to come.

[okarol]

  Happy birthday rookiegirl!!
Hope it's a great one! 

[rookiegirl]

Thank you for all the Birthday wishes.

[KT0930]

I've been out of town and missed the last few comments. Glad you finally got to see your daughter's performance, and Happy Birthday!! Hope it was great!

[Ken Shelmerdine]

  Rookiegirl you deserve a medal for the way you persevered with the cycler so lets not hear any more talk about something you are certainly not, a quitter! I'm glad the manuals are suiting you better. One thing to bear in mind is that if the lesser amount of pain with manuals becomes even less over time or better still none at all, it could indicate that your peritoneum has adjusted and it might be worth re-trying with the cycler. Best of Luck

[rookiegirl]

Hi Everyone,

Sorry I've been quite for a few days.  I've had some ups and downs with my blood pressure.  Can't seem to find the right level.  I called my Dr. office about wanting to have a meeting with him.  I was able to see him today.  He pretty much knew what was going on with me, especially the pain.  I told him I still have cramping pain with the manual.  Normally within 10 minutes of the drain.  In the last 2-3 days, I've noticed that I also have pain during my fill.  The cramping runs down to my buttocks and stays there for at least 30 minutes after the fill.  This has never happened before.  He asked me if I was constipated.  I told him that I'm pretty regular.  So he suggested even though I'm regular to take stool softener daily.  My therapy changed again.  This time I will only have to do an exchange of the 2.5% at bedtime.  Drain in the morning and do another exchange of the ICO.  I won't have to drain that until I'm ready to go to bed.  He wants me to leave in some fluid to avoid the cramping.  So 2 exchanges per day along with 25mg of Cozaar for my blood pressure.  Will see how things work out.

[rookiegirl]

I wanted to get advise for those that still work a full time job.  You see, after my dialysis training, I went back to work the falling week.  It was very difficult because of my blood pressure, the discomfort of being full, had difficulty walking.  I have to walk almost 2 blocks from the parking lot to my building.  I'm a Revenue Analyst which pretty much is a desk job.  But, I'm having a hard time concentrating on my job.  I was only gone for 4 weeks and my accounts are not doing so good.  I feel so pressured with all the calls, questions, emails pertaining to my accounts.  I wish I could tackle it one thing at a time, but unfortunately with this type of job, you pretty much have to multi-task.  Everyday I come home worried I'm going to loose my job.  I took 4 weeks short term disability, but I wish I could take longer.  I wish I had another month to get use to my dialysis.  I can't really get use to it because each week it changes.  In the last 2 weeks, my dialysis prescription changed 3 times.

I'm thinking about quitting so I can take a few months off.  I'm scared because we really need the money.  I have a 17yr. old daughter that will be going to college next fall.  We have some money put aside but not enough.

It's bad enough having to deal with my illness and all the complication associated.  Now I'm starting to worry about our finance.

I guess my question is how do you manage dialysis, family, work, social life?

 

[goofynina]

Hey Rookiegirl,  I know you said you wanted advice from someone who is still working (and although i am not) I just wanted to let you know that you are not alone with these fears, thoughts, unanswered questions.  I had to let my kids go (i ran a day care) and move in with my mom, we lost our house (well, we moved out, it was a rental) but still, it felt like MY home.  You have to learn to make sacrifices, cut corners when and where you can and make changes.  I know you dont get nearly as much on SSDI as you would if you were working but it is still an income, have you thought of going on SSDI?   All the things you are worried about are doable if you just rearrange your life a little bit to accomodate what is going on in it now.  Good luck to you and remember, you are not alone 

[rookiegirl]

Goofynina,

Thanks for the advise.  Sorry to sound dumb, but what does SSDI stands for? 

[goofynina]

Your not sounding dumb my friend,  SSDI is Social Security Disability Income 

[rookiegirl]

Could I qualityf for something like that?  Do you know what are the requirements?  Where can I learn more about SSDI?

Thanks,

[goofynina]

Anyone on dialysis should be approved, there is a 5 month waiting period i believe (starting from when you first started dialysis)  All you have to do is call your Social Security Office and make an appt. and they should set you up with an interview (usually it is a phone interview at first)  But it is something you should definetly check into.  Good luck and dont hesitate to ask any questions ok, we are here for ya 

[rookiegirl]

Thank you so much for the information.  I will definitely look into it.

[kruep]

       Hey rookiegirl,
      Your social worker at your clini should be able to help you out.  She should have already talked to you about this.  That was always 
      one of the first things my social worker did.  We need to make sure that you guys have the money you need to buy things like....
      I don't know, maybe your meds and some food would be nice, too.

         kruep

[Aldente]

I worked full time after finishing my PD training.  I did that for seven months before I had other medical problems.  Most people I had contact with did not even know that I was on dialysis.  I taught computer classes so I was on my feet for a good part of the day but I could not say that my job was physically demanding.

The medical problems I had caused me to lose my PD catheter and I had to go on in center hemodialysis.  I was able to arrange my schedule so I could start dialysis at 6:00 am and go in to work a little later.  My employer was not opposed the the schedule.  Hemodialysis however, was a little rough on my system and going to work after dialysis was a bit much so I went on short disability.

Each company has a different disability plan usually administered by some insurance company.  Our plan allowed me to stay on short term disability for six months after which it changed to long term disability.  The total disability span for our plan is one year.  I opted to stay on disability so I also applied for SSDI.  According to the way our disability plan was written the insurance company subtracts the amount I receive from my SSDI checks, or for that matter any other income I receive.  You might want to check your employee manual or talk to your HR department to see what disability arrangements are available for you.

You might also want to consider a handicap placard for your vehicle so you can park closer.  Handicap placards usually require a form or letter from your doctor and they are issued by your state DMV (Department of Motor Vehicles).  In North Carolina they cost $5.00 for two and are good for over five years (might even be eight or nine years).

When you went on dialysis did you apply for Medicare?  If not this is something else you will want to talk to your social worker about.

Best regards.

[kitkatz]

Also ask your human resource department if they have you on any disability insurance. Sometimes it comes with the work insurance package.  Have them sort it out for you.

[rookiegirl]

Hi Guys,

Thanks for all the advise.  My Dr. agreed to let me take 6 more weeks off work.  I'm back on STD with my employer.  After the 6 weeks, my Dr. will re-evaluate my condition to see if I'm able to go back to work.  My employer's STD plan is up to 26 weeks.  After that goes into LTD.  The wonderful thing about my STD plan is that I'm paid @ 100% because of my years of employment.  Thank God.

[goofynina]

   So let me get this right, your employer gave you an STD??  (ok, sorry, bad joke) but it was there, i couldnt help myself   

[rookiegirl]

That's okay, I had it coming...

I do have a question.  Does anybody have side pain?  It's only on my right side by my ribs.  It hurts especially if I laugh, cough, or breath in deep.  I can't figure out if I may have gas trap in that area.  I'm pretty regular and I've been taking Colace each day to make sure things are moving along.

[goofynina]

It sounds as if you have air in you, the best thing to do is take tylenol for the pain and when you drain, try and drain with your bottom on a pillow, they say the air will flow upwards and out of your catheter, last time i had it (air) it was in my shoulder and the pain was so bad, took a couple of weeks but it finally got better, (dont know if it was the burp or the fart that did it but it was something massive)  lol, sorry too much info there  , but yep, that is what it probably is, good luck 

[rookiegirl]

How can I avoid having air in me?  How did it get there?  I always make sure I flush my lines real good before I fill.

[Laurie]

Does anybody have side pain? It's only on my right side by my ribs. It hurts especially if I laugh, cough, or breath in deep. I can't figure out if I may have gas trap in that area. I'm pretty regular and I've been taking Colace each day to make sure things are moving along.

I have been having alot of pain in my right side, just as you described. I went to see a specialist today and he thinks maybe the catheter is tangled in my omentum. They are going to try and go in with a guide wire thru my catheter and see if they can reposition it. If not, I will have to have suregery to remove some of the omentum. Have you had an X-ray to see the position of the catheter?

[rookiegirl]

I have not had an X-ray.  Dumb question, what is a omentum?  I believe my cath is still position downward because at the end of my drain, the pinching/cramping occurs near my vagina.  I really think my cath is too long for me to still have this much pain.

[Laurie]

Dumb question, what is a omentum?

I had no idea what it was either. The way it was explained to me is its a fatty piece that hangs down like a curtain from the stomach. 

[paris]

It seems like the more I learn from all of you, the more I don't know!  This thread is sooooo informative.  Thanks everyone!