ive had enough...

[lou]

I have had a really really bad day. Been on pd for about 4 months now and keep having problems with it. Last night every time it drained it was so painful I wanted to cry (and I am on tidal). This morning it kept alarming so had to turn it off again. Am a teacher and not quite sure how I held it together at school all day because now I'm home I cant stop crying.

I think I have made a decision that I need to start hemo.

I choose pd because all the nurses and docs told me it was gentler on your body and most young people do pd. To be honest hemo absolutky terrifies me. Seeing all that blood and thinking about what happens makes me feel physically sick but I don't think I can carry on like this with pd. I am starting to dread going to bed. The nurse has just given me manual bags to do over the weekend (as long as my tube is not blocked again). they said they would talk to me on Monday about hemo. I understand you have to wait 6 weeks once the line is put in? I don't really know much about hemo except it scares the shit of me!

I just wish the phone would ring and I would get a kidney. I know everyone does... I know I cant live life wishing the phone would ring every day but I just feel like I'm going mad and I cant cope with much more of this. It has been 4 months now I would have thought it would have settled down by now.

I keep saying to myself that it can only get better but it seems to be getting worse. Please can someone out there tell me its going to be ok. Am so tired and sick of all of this

Lou xxxxxxxxxxxxxxxxxxxxxxx

[cdwbrooklyn]

Lou, I'm not sure about pd but maybe something can be wrong with your access.   I would check that first. 

I've been on hemo for going on 11 years and it's not as bad as we all would like to complain.  I've thought just like you with the blood thing.  After a few months, it did not bother me as much.  You'll get use to seeing it and feeling the needles.   Actually, I can put my own needles in when I'm not really tried, which I am most of the time.  Anyhoo, since you just started pd, you may have to research what's causing the pain.   Try to find out while you are having pain and see if you can fix the problem.  If all you research still causing you pain, than try hemo. 

The reason why you did not cry as much while teaching because your mind was not focus on D.  You had other things to think about.  Since you are home, your mind is totally focus on D.  Try to do some things that will take your mind off of D until it's time for you to do it.  This will help your mind stay off of D and more on living your life.     

Hope this helps!!!
Feel Better!!!   
 

[del]

lou,
PD does not work for everybody.  Hemo is scary at first but after a few treatments you will probably get used to it. My husband did PD for almost 3 years and didn't like it. He really had no choice but to stay on it because the closest hemo unit to us at the time was a 3 hour drive away.  Just before PD stopped working for him a hemo unit had opened at the hospital only an hours drive from here. Home hemo was not available here at the time either. He spent 6 years in center and then home hemo became available.  He loves it (well as much as you can love dialysis). Home hemo might be something to look into if you are interestd and able to do it. 

Lou you have to wait about 6 weeks for a fistula to mature but they can put a perm cath in at the beginning and most  times they work fine!!  Being a teacher home hemo would probably be a good idea if you are able to do it.
Talk to your nurse and neph about hemo and find out the facts about it.  Hubby feels a whole lot better on hemo than he ever did on PD. Lots of people do really well on PD but not everybody.  Take care

[Slywalker]

Sorry you've had such a tough time with PD.  I had a few issues when I started, pain being included in that during the drain but we found that the tube had moved around and after we fixd that it was pretty much pain free and alarm free with only occasional cramping during the final drain.

I hope your medical team has reviewed all the things they should to make sure the tube placement is correct, that the machine is set up correctly, etc. 

Good luck getting set up for hemo.  I hope that is the answer for you.

Take caer

  

[looneytunes]

Oh Lou, I'm so sorry that you are having a tough time with PD.  There has to be a reason for the drain pain as most of the PD patients we know do not have this routinely.  Perhaps a thump to the head of your PD nurse might be in order here since you have been complaining of this pain for quite a while.       And if manuals don't cause the pain, you might move to these until you go to HD.  My spouse did manuals for a while while we were working in 2008 and other than the noon time exchange being a little inconvenient because we'd rather go out to lunch with the other folks, it wasn't bad at all.  We also had problems with a "clogged" line caused by fibrin but now we put Heparin in the bags every other day and it seems to keep it cleared out. 

Maybe hemo (or even home hemo) would work better for you.  All I am learning about the NxStage system sounds very promising for when my spouse has to come off PD.  But the best thing sounds like a phone call. 

Keep your fighting spirit strong whether you continue PD or go to HD.  Your kids at school need you! 

[dyann]

Lou,
I do not know about PD, however i started home hemo a few months ago  I am still maintaining a fulltime job and raising the kids, I really like it once I was trained it was about 6 weeks worth of training I do the Nx Stage, maybe that is something you could look into if you want too.  I hope all goes well for you and you make the decision that is right for you.

[fc2821]

      Lou, I've been on hemo almost three years now and it's not anything to be scared about.  Sure it is not a picknic but nothing is grat all the time.  Don't be afraid, and if you are thre is nothing wrong with tht either.  Anyone who tells you they are never afraid, well they are not telling you the truth.  The unknown can be scary.   

[cookie2008]

Talk with the surgeon that put your pd cath in could be a possibility that it moved, doing manual  is not bad, I tried and it didnt work for me.  I do Nxstage now and it is great my husband Dave is my partner, I have buttonholes and use the emla cream. When I started incenter hemo I had to have a permacath put in I had alot of issues with my fistula. Good luck with what you decide.  Talk with your neph and ask if you could see the Nxstage machine while someone is training if they dont mind.

[tito]

Hi Lou,

I understand what you're going through. I started PD about 4 months ago as well, and the first couple of months I had some excruciating drain pain. I didn't think I could continue with PD. I worked with my PD nurse to get the settings right, and the pain seemed to evaporate. Every so often I still get a twinge, but I don't even notice it much.

I'm a teacher, too, and PD allows me to continue with a reasonably normal life. It sounds like many people have positive experience with home hemo, so my hope is that you can work with your medical team to find out what's going on, and that you'll find the best form of dialysis for your needs. Best of luck!

[Malibu]

Hi Lou, I am sorry you are having these issues.  When we learned my husband had to do dialysis I thought PD was the right choice for him.  Unfortunately he could not do PD because his albumin was 1.5.  Now we feel lucky that he is on home hemo instead.  We were both freaked out by the needles and all the blood but seriously it is surprisingly anticlimactic.  The first day can be a booger but after that it's OK.  One of my husbands favorite things to do is get into our pool, get into all water for that matter...he is a scuba diver.  Anyway it is much more convenient for him being on hemo.  We have been doing it at home now for a couple weeks and it is working just fine.  (Thankfully we've only had very few alarms and trouble getting needles placed properly.)

[Hanify]

Dear Lou - you poor thing.  As everyone has said - PD is not for everyone and that might just be the case with you.  Do the manuals over the weekend and see how that goes.  You could easily change to manuals if you like it better - as you cando one at lunchtime at school and one when school finishes - the other two are first and last thing anyway.
Can you aim for home hemo if you do change?

[thegrammalady]

home hemo or if your center or area offers it nocturnal dialysis should keep you feeling well enough to continue working.  pd isn't the only option and doesn't work for everyone. so sorry you are having a rough time. if you start on hemo you may need a catheter a fistula often takes longer than 6 weeks to mature. i'm not sure about a graft. a catheter can be used immediately.

[kimcanada]

Lou

I ditched out of PD after only 3 months, I truly felt as I was going to die if I stayed on much longer.  I know there is many PD fans, but there is just as many Hemo fans... ok fans might be a stretch.  But one thing I know is that when the doctors and nurses are going on and blowing about PD they always seem to forget to tell the patient that sometimes PD just doesn't work for everyone. 

SO you stay on it longer then you should,because surely it must be something you are doing wrong.  Hemo isn't that bad, and if it makes you feel good , even better. I will be thinking of you

Kim

[lou]

Thanks for all your kind replies. Well I have finally had some good news! Had the nurse round yesterday and she has agreed to let me try doing just 3 manual bags a day for a couple of weeks. So I can do one when I get up, one when I get home from school and one before bed. I know you are suppose to do 4 a day but she said she will keep an eye on my blood and see if 3 bags will give me enough dialysis.

Am sooooooooooo happy about this! Last night I had the best night sleep I have had for 4 months... I forgot how normal people sleep! Just hoping now I willl be able to carry on doing this until I hopefully get a transplant. Strange a few month months ago if someone told me I had to do 3 bags a day I would of thought what an awful way to live but I honestly felt like I'd won the lottery when she told me this news yesterday. Funny how life changes isnt it?!!

Hope everyone doing ok out there, seriously love you all - you are really keeping me sane!

Lou x xx x

[Darthvadar]

Great news, Louise...

My mum does three bags manually per day too... She's on Baxter... One yellow, one green, and one purple bag per day... Been doing that for a year now, and her blood results are all in the middle of the normal range...

Good luck...

God bless...

Darth...

[hurlock1]

 I don't really know much about hemo except it scares the shit of me!

I just wish the phone would ring and I would get a kidney. I know everyone does... I know I cant live life wishing the phone would ring every day but I just feel like I'm going mad and I cant cope with much more of this. It has been 4 months now I would have thought it would have settled down by now.

I tell you what scares me. I live in New Mexico and they have Centipedes up to 8" long. There was one the other day on my front porch with the kids out there. I hit it a dozen times with a boot and it was just scrambling around. It ran (RAN?) up my grandson's leg and left a trail. I couldn't hit it with anything w/o hitting him.
HD isn't anything to be scared of.
Stop sitting around waiting for the phone to ring. One way or the other, you've a life to live. While you are worrying, there is plenty to do. PD isn't necessarily all that it's built up to be. One thing about "in center" dialysis is there is a social network in place there. There are other people to talk to. I mean, exactly what isn't scary about having a couple of permanent  catheters implanted in your belly? And spending time with your self for company. Being scared is a state of mind. It's Your Choice.

[lou]

Thanks hurlock, good attitude. I know you right, lifes too short to waste worrying about something we cant change. And you know what? I think an 8" Centipedes might scare me more too!! Hope all is well with you x x

[looneytunes]

Lou, I've been lax on reading posts for the past week and just saw this one.  Great news on the trial of 3 bags vs. 4.  Just to be able to sleep must be a wonderful feeling for you!   As long as your clearances are good, this may be the ticket for you!   

[boswife]

it is really something what a change in a day will do huh..  Hope all that works out for you and you are a happy PD user.  I also agres  with hurlock1 too.  Hubby's been on 'in center' dialysis and except for the fear of starting it, we really like the 'social' part of it (and im a social phobic...... really    ).  It has given me people to relate to and ask loads of questions too (namly the patients) and hubby others to talk over their successes and other ups and downs to help others from mabie having to go through cramps etc..  Mabie we just have a good center, but the 'climate' is really one of help and friendship.  Anyway, got off subject, but just wanted you to know that hemo is really not so bad if ya gotta go that route.