Introduction PattyTricia

[PattyTricia]

Hi,
My name is Patricia and I am living in Yuma Arizona. I began dialysis on November 6, 2015 due to Anti-GBM or Good Pastures Syndrome. This is a rare disease that affects either the kidneys or lungs or sometimes both. Survival if it hits the lungs is not very high so I was very lucky it only got my kidneys. I have been told it is a rare disease and not too much is known about it. They don't know why people get it  and at first it usually gets diagnosed as a UTI. I was doing PD for about 8 months but had to go to in center hemo because my Catheter leaked and fluid was leaking and not being pulled properly. I had a very hard time adjusting and was very angry and cried all the time. I have come out of the depression and anger with lots of support from my family and partner. I am on the Transplant list at the Mayo Clinic in Phoenix and that gives me hope. I hate that I have to go to dialysis but I try to put on a happy face every time. I know it is keeping me alive so what are you gonna do? I have a tough time sitting through dialysis and there are not many people to talk too because of a  language barrier with most of the people. Most are Spanish speaker only who come over from Mexico for Hemo. I am one of the younger people at 50 and I am a chatter box. So its hard. I am glad I found this group and I hope I can communicate with others to help me through this.
patty

[Michael Murphy]

I am sorry you had to go from PD to in center Hemo.  I  have been doing in center Hemo for over 4 years.  I find it takes up about 18 hours a week leaving 150 hours to have a life.  The other thing that helps me is I worry about dialysys a week at a time.  Every Monday I start a new dialysis week and every Friday I celebrate that I am done for the week.  But the best plan is what works for you. With support this is a very doable life. 

[smartcookie]

   I am glad you are here, but hate the circumstances.  Are you going to be able to go back to PD?  That sounds ideal for you, since you don't like hemo that much.  I hope you can get a transplant soon!  50 is so young to be going through this!

[OldKritter]

Welcome

Nice to have a chatterbox       
 

[Charlie B53]

Needle-phobic, PD was a no-brainer for me.  I did very well for 3 1/2 years until I must have become a bit too complacent and hurried through my set up one night.  I awoke hours late with unimaginable pain which I initially thought was simply bad drain pain.  Stupid as I am I waited for a few more hours thinking it would go away.  I didn't.  It only get even worse. I gave in and went to the ER. I couldn't breath the pain was so great.  It was a month on antibiotics, and a week later it returned.  6 weeks on antibiotics, and 2 days later it returned.  My cath had to come out, a cardio cath went in and I immediately started Hemo.

Fortunate for me, my clinic has me one the very first shift and I am an 'early riser'.  I get up, get in, and get done, and I am free for the whole rest of the day, and night. And it's only three days a week.  This is working out pretty good for me.

I consider myself to be very fortunate.

The UNfortunate part, my fistula is growing.  Some day the Dr is going to tell the Clinic that it is time to start sticking me.  When that day gets here I will have to figure out how to live with it.  Somehow, I will.

Stay careful.  Keep your hands CLEAN and as sterile as possible during every exchange.  Do NOT even think about speeding through a set up.

Take Care,

Charlie B53

[Xplantdad]

Hi and welcome! I am a caregiver for my daughter who was on in center hemo, then we did home hemo on NXStage....and she finally got a transplant at Mayo in Scottsdale. We are based out of the Phoenix area so if you have any questions, I can send you my phone number and we can talk.

See the link below for more info on our daughter

[iolaire]

I am one of the younger people at 50 and I am a chatter box. So its hard. I am glad I found this group and I hope I can communicate with others to help me through this.

Welcome.  I wonder if you could find some people you bond with better if had a different chair time?  I did third shift M,W,F at 3 PM and most of the people were of working age with a few more elderly patients that usually moved to earlier chair times.  That being said other than saying hello and goodbye to a few people we didn't talk among to each other.

[smartcookie]

That's a good idea.  You could ask staff when the most English speaking people run and ask to be moved to that time. 

[kickingandscreaming]

Welcome, Patty.  Sorry you have to be here.  I do PD and I hated HD in center.  But someday, when PD no longer works, i may have to go in center as I'm too old (76) to be a candidate for transplant.  When I originally got my PD catheter,it didn't work well and I had to have a second surgery to fix it.  Is there any chance that they could replace or rework the catheter that leaks?

[cassandra]

Welcome to the site Patricia

   


Take care, Cas