Hellllooooo Out There!!

[vivalaslele]

Ok, so here I go.....I am a 33 (almost) year old female. I live in North Central Florida, but am originally from Ohio. I have been a type 1 diabetic for 27 years. My diabetes has never been very well controlled, I've been brittle for as long as I can remember. In the last 4 years my kidneys have slowly given out on me and early in the spring of this year things got really bad. I got so sick. I didnt even have the energy to walk from a parking lot into a store. I couldnt eat, my fluid retention was out of control, and I was just miserable. I think my GFR came back as 10 at that point. So, I finally started in-clinic hemodialysis in June. The first couple months it was working really well and I was tolerating it, got my blood all cleaned out, "bloodscrubbin" as my friends like to call it, and I was feeling much better. After about 4 months on hemo I started getting these horrible unexplained migraines and nausea about two hours in to each bloodscrubbin treatment. It became totally unbearable. So I decided to try PD instead. Im having issues with PD as well, so im on my machine (Baxter Homechoice PRO) for 10 hours a night and then I go in to the clinic and have a couple hours of hemo once every 10 days or so.
To be completely honest, Im miserable. Ive lost all my spunk and confidence. I really try to keep my chin up and be thankful that im still alive and remember that there are people out there who have it so much worse than I do, but its just hard sometimes. So when I happened upon a website called I HATE DIALYSIS, I knew it was for me! Im really looking forward to getting some input from others and hopefully being able to contribute and help others as well. Nice to meet y'all!!
-Leslie

[MooseMom]

First of all, welcome to our community!  I know you will feel well supported here.  We have a lot of very wise, educated and compassionate people on this forum.

I must confess that I have never heard of doing PD and then a session of hemo like you've described.  I'm not surprised you are miserable.  I don't know anything about PD myself, but many members here do; there is a specific PD forum if you'd like to take a look and ask some more detailed questions there.  I know I have read posts from several members who have experienced migraines; perhaps you could do a search and read some of what they've experienced.  (I am pre-dialysis myself, so I apologize for not having many answers!)

Whether or not someone else has it worse than you really is irrelevant.  You are suffering and are unhappy, and for good reason.  You are living life under extremely challenging circumstances, so to expect yourself to be upbeat all the time puts an extra burden on your shoulders.  That's why you should come to IHD as often as you like to vent away!  You don't have to be sunshine and rainbows with us!

[Rerun]

Hi Leslie and welcome to IHD.  I'm so glad you found us.  Sounds like no matter what you try it is giving you fits.  What do your doctor's say?  Well, that was a dumb question.....sorry!   Can you get listed for a transplant?  Hope you post often.  Good to have you.

Rerun, Moderator         

[rsudock]

Leslie welcome! so sorry you are feeling bad friend. I am on in center D and have to combat migraines frequently. sometimes I put ice on my head that seems to be the only thing that helps!!

xo,
R

[vivalaslele]

Thank you so much for your welcoming responses! Jesus, it is amazing to finally have somewhere to vent and ask questions of people who actually know what im going through!!  This is me right now dancing a little jig!! Well, my neph dr. and pd nurse (who is totally rad!) just want to make sure that im getting enough dialysis. Im having trouble on pd with the fluid volume, I have small frame, Im tall but dry I weigh less than 130 lbs and i cant seem to be able to handle any more than 1000 mL or so. So doing some hemo every now and then makes them feel better. My neph dr. just wants a few good months of pd, bloodpressure a little bit lower and bloodsugar a little bit more stable and then he will refer me for transplant and I can start the workup. I dont evn know my bloodtype!! I am so excited about the possibility of a kidney/pancreas transplant I could just scream!! Im gonna check out some different forums and topics and see if anyone has any pd advice!! Thanks again for the warm welcome!!

[MooseMom]

Oh, a transplant would be wonderful!!  As you've probably seen, we have a forum for transplant discussions, too.  Now, be sure to post often and let us know what kind of progress you're making.  I hope some of your dialysis related problems get resolved really soon. 

[Poppylicious]

  Leslie!

[monrein]

  to IHD Leslie.  So sorry you're having to go through this and you really will find people here who know exactly what "this" is.  I live in Toronto but have lots of family in Florida.  I hope you'll find IHD as helpful a resource as so many of us have.

[looneytunes]

Hi Leslie and welcome to the best site for "hating dialysis" folks.  My hubby is also diabetic and was on PD for 2 years but it was not working for him either. Now we do home hemo with the NxStage system.  I truly hope your medical team sorts out the cause of your migranes and gets you stable enough for the transplant list.  I'm looking forward to seeing you on the boards.   

[Marsh]

Welcome from the west coast of Florida!!

[Bruno]

Hello Leslie and welcome.

[vivalaslele]

THANK YOU! THANK YOU! THANK YOU EVERYONE!!

 

[Joe Paul]

Hello down there!  My name is Joe (Paul is my middle name) ,I'm up here in Pennsylvania. Our life stories are much the same. When I started dialysis, I had a hard time accepting I was actually sick. I didn't really feel too bad at first, symptoms of nausea, thought process messed up, achy bones, you know - daily life. I took time in thinking about a transplant, a years worth, just so I knew what the chair felt like. I started the transplant process, knowing the wait would be, unless a miracle, 3 years. The testing wasn't bad, bar the heart stress tests. After spending 4 years on dialysis, having had enough, I finally got the call for MY kidney, it was as perfect a match as you can imagine.
Anyway, do what you have to do to get that kidney! It is well worth your efforts, my kidney will be a year old January 8Th.

[vivalaslele]

Hello down there!  My name is Joe (Paul is my middle name) ,I'm up here in Pennsylvania. Our life stories are much the same. When I started dialysis, I had a hard time accepting I was actually sick. I didn't really feel too bad at first, symptoms of nausea, thought process messed up, achy bones, you know - daily life. I took time in thinking about a transplant, a years worth, just so I knew what the chair felt like. I started the transplant process, knowing the wait would be, unless a miracle, 3 years. The testing wasn't bad, bar the heart stress tests. After spending 4 years on dialysis, having had enough, I finally got the call for MY kidney, it was as perfect a match as you can imagine.
Anyway, do what you have to do to get that kidney! It is well worth your efforts, my kidney will be a year old January 8Th.


Oh congratulations Joe!! Its great to hear that you are doing well with your new kidney!! I am soooo looking forward to getting a transplant! In addition to a kidney, I also need a pancreas because of my diabetes. I only have to endure a few months of dialysis with good results and then i can start the transplant work up. Im really not enjoying PD any more than hemo. The only thing that is better is that i dont have to physically go into the clinic anymore. Besides that PD is not working for me, so the sooner I start the transplant stuff the better!! do you have any advice as far as transplant is concerned?