Dialysis sucks

[christine029]

 

So my name is Christine and I have lupus nephritis. I am receiving a transplant in January from my father. I was trying to skip dialysis altogether until then but the kidneys gods deemed differently and I currently have had four treatments. I am 29 years old.  Any advice or tips I would appreciate.  My first three sessions were in the hospital and last night was my first one at a center. I wanted to die. Is it always going to be ike this? The first three were fine but this last one really made me so sick. Nauseous, chest pains, felt like I couldnt' breathe, dizzy, headache,,,,if I had a gun I would have shot myself. And then I hadto go to work today!!!! Well hello all!!!

[willieandwinnie]

Christine. Glad you found us. Your symptoms sound like they took off too much. Tell them to watch your dry weight. Good luck and please come back and let us know about your transplant. We are a wonderful group with tons of information and support. Hope to hear more from you. 

[G-Ma]

    This is a wonderful group you have joined.

Ann

[kittylee]

Welcome I hope thing improve for you 

[monrein]

  Christine.  So sorry that things are so rough right now.  It's very very hard in the beginning but I think we do adjust as we get familiar with everything.  W&W is right though about taking off too much fluid.  Don't let them do that since they probably don't yet know what your real dry weight is and that guesswork can cause many of those symptoms.   The headaches are usually wicked vile, especially at first because your body has gotten used to being flooded with toxins and is having to get used to having less of them.

My main tip for now, and it's easier to say than to do, is to try to go in as relaxed as you can.  A bubble bath, a quiet cup of tea, 15 minutes with a CD, whatever to help you and your veins relax.  Glad you joined us and I look forward to hearing more from you, especially about your transplant.  I hope to be having one pretty soon in the New Year also.

[Rerun]

Christine, hang in there.  Read lots on this site.  Tips all over the place.  You will appreciate your transplant tons more now that you know how bad life is on dialysis.  Glad you found us.  You father is my hero.

                     

[jessup]

G'day and 

[Ken Shelmerdine]

  Christine sounds like you're going through the mill. Have never experienced haemo but hope things soon improve for you.

[christine029]

To everyone who has responded to me: i cant believe the warm welcome you all gave me in a matter of minutes....thank you for that. it is better to know i am not in this alone and have all of you to lean on.  im gonna get through this its just hard right now making this adjustment of all this time spent there. i want my life back and i havent even been on dialysis for two weeks! i dont know how you all do it over and over for years...i really have to hand it to you all...your much stronger than i am!!!

[boxman55]

Welcome to IHD. The best thing to do is look forward to your transplant in Jan. The time will go quicker for you. We are all here for you and we look forward to your posts.

Boxman, Moderator

[lola]

 

[mikey07840]

 

[RichardMEL]

G'day Christine and welcome to IHD! Sorry you couldn't get that transplant pre-dialysis, but your father is offering a beautiful gift and I hope (as does everyone!) that it takes hold and gives you a more normal life!!! Fingers Crossed.

In the meantime what you have to understand is that you've just started - 4 treatments is, alas, nothing - and it will take some time to stabalise.. at least 2-3 weeks, maybe more (the irony is you may well stabalise on dialysis around the time the transplant comes!). Your symptoms definitely sound like you had too much fluid taken off, or you were carrying too much to begin with - have you been told to restrict your fluid intake at this point? Go on the renal diet etc?

It will take time, and unfortunately trial & error, to find your ideal dry weight so that you won't get those awful symptoms. What you need to do is get to know how your body tells you the early warning signs before things get too bad so you can alert the staff and they can stop the UF (pulling fluid) and  maybe even giving you some saline etc to settle things down. For me I know things are going downhill when I start to get warm and sweat. Others may find their BP going down and they feel a bit faint. You will get to know how YOUR body is handling things (and remember your body is also adjusting to the relative shock of the dialysis treatments, so it will do OK some days and not so OK others.. this unfortunately is kind of normal that I've seen).

It may also be an option to ask your dialysis techs about using a UF profile on you so that the fluid take off is done a bit differently. For me I like UF profile 6, which takes off more for 30 mins, then steps down to 100 for 30 mins, which gives time for the body to "refill" which should lower the chances of a crash, cramps etc.

So in summary it sounds like they took too much off, so your dry weight may be incorrectly worked out - perhaps get it raised a bit and see how it goes. Also remember to limit your fluid intake and watch how your weight changes from treatment to treatment which will give you an indication of your fluid intake and monitor your own body and as soon as you start to feel a bit funny/off, tell a nurse/tech to do something before it gets bad.

I hope your next treatments are much better and again, welcome to IHD!

[Bajanne]

Welcome to our community!  So glad that you joined us.  We are looking forward to your transplant.  Please share it with us.  We will be there for you and with you.  You see, you are now part of the IHD family 
Yes, dialysis sucks - that is why we have this group.  Here we have information, support, and even a little fun as we cope with this renal challenge.
RichardMEL ( a real sweetheart) gave you very good counsel.
So keep reading and keep posting.
Looking forward to hearing from you.



Bajanne, Moderator

[Run8]

howdy howdy, i think everyone has said what i would.so welcome, nice to meet ya and where you from.

[Joe Paul]

Welcome Christine, good to have you aboard

[christine029]

Well I called my dr to tell him of the horrible experience so im waiting to hear back from him hopefully before tonight which is my next session. thanks for all the advice. it must be the dry weight thing that they have wrong because im not retaining any fluid and i still urinate all the time. i also am on a renal diet and restrict fluids anyway. i thought it might have something to do with that i am really small? would that make a differernce? i only weigh 112 pounds....well thanks all for your welcomes and input...ill definitely let you all know how it goes tonight....

christine

[christine029]

oh and to answer the last question i am a new yorker

[Run8]

cool, again nice to meet you.

[ODAT]

  Christine

I am here for my mom who is predialysis. You've landed on a good site where you will be very informed, supported, and welcomed. Hope they figure out your dry weight soon. God Bless your dad.

[Ang]

   new yorker

[Romona]

 

[paris]

Welcome to this great site.  I am sorry you are having a rough time now but am thrilled to hear you will be getting a transplant in January.  That is marvelous!   The members here are great at answering any questions you have so please ask anything.  We are also here for support on bad days and for laughs on good days.  We really care about each other.  We will be looking forward to hearing all about your transplant process.   Glad you joined us! 





paris, Moderator

[christine029]

well i had my second session in the center since my horrible experience and im glad to report that it was much better...i still had a wicked headache but all those other symptoms were gone!!! and you guys were pretty much right about the dry weight thing. I weigh 109 pounds and they had taken way too much fluid plus they had my dry weight down as like 115 or something. i have another one tomorrowso hopefully this one will be the best yet...im also getting more used to this crzy diet of mine....it is diffiuclt to follow but ive been very good so far...i just dont want to lose any more weight but the foods i like i cant have!!!! thanks again to all you !!!

[monrein]

I get bad headaches too Christine and I lose weight overall on dialysis because all the restrictions add up to less calories for me.  The thing that has helped most with my headaches is daily dialysis.  I was going 5 days a week in a row for 2 1/2 hours a run but the Monday headache was so awful that now I'm going MTWTh, skip F, S.  That way, I don't have two days in a row off.  This is not available to everyone but it has made a huge difference in how I feel.

I hope you continue adjusting to the whole thing and you feel better and better.