New to dialysis not going well

[dinks]

I don't really want to complain but I don't really know which way to turn.
I started dialysis at the beginning of October and am having a hard time settling in to it. I feel like I am stumbling around in the dark and the nurses at the unit are not helpful.  Biggest problem is I am very shy and find it hard to complain or ask questions.  I have a fistula which they used once and then on the second time they tried to use it it blew.  Was rushed off to have a permcath fitted, no explanation given about the procedure and boy was it painful. Had dialysis later that day and went home in tears.  Although the actual dialysis with the permcath is easy, i am now have major trouble with my blood pressure, passed out from low blood pressure twice and got close at least three times.  The nurses seem to be making some kind of mistake with the amount of fluid they are asking to be removed, they don't seem to be able to determine my dry weight and seem to take too much and the BP crashes.  Sorry to vent here but I don't know who to ask for advice.  Please if any one has ideas of what I can do to make it go smoother.   

[cattlekid]

Hello! 

I am so sorry to hear of all the troubles you are having at your clinic.  I was somewhat in your boat as well, I had to start dialysis on an emergency basis back in January.  No time for fistula surgery so I had to get a permacath put in, which I still have (well, not the same one but I'm still using it - one more week and we try my fistula).

I know it's not easy to do, but you will have to summon your strength and become your own best advocate.  I learned quickly that no one knows your body better than you, and especially in a big clinic, the nurses and techs will probably just leave you alone unless you tell them in no uncertain terms that things are not going well.  Like you, I had a lot of problems with crashing when I first started.  I quickly learned that my UF limit was 2.5 to leave feeling okay, and 3 if I desperately needed it and was willing to leave feeling a bit off.  Anything over 3 and I would crash big time.  There were times that I left over dry weight, but dry weight is just an estimate anyhow so I didn't feel like it had to be met each and every time.

Have you regained an appetite since you started?  You may be putting on real weight if you have been eating more.  I would ask your neph to think about increasing your dry weight if you are crashing regularly. 

Finallly, what worked for me was to find one of the techs who I had a good relationship with and start asking a ton of questions.  Reading and posting here is also a great place to learn.   

[Desert Dancer]

Hi, dinks and 

I'm sorry you've had such a rough intro to dialysis but as you'll find, your experience is not uncommon.

The only thing I can suggest is LEARN. Learn everything you can about dialysis. This site is an excellent resource; you'll get the unvarnished experience of many, many people who have been there before you. Then: take your knowledge and apply it. Start asking questions and making demands. I know it's not in your makeup but I promise you it's absolutely necessary unless you want things to continue on the way they have. YOU are the patient, it's YOUR body, YOUR health and YOUR right to call the shots.

Have you considered peritoneal dialysis (PD) or home hemodialysis? That way you can dialyze in the privacy of your own home and KNOW things are being done properly. There are many here who do so with wonderful results (I'm one of them). It's certainly something to think about if it's an option for you. You'll be thoroughly trained before you're sent home and after a while it becomes routine.

I hope things start looking up for you! Glad to have you here! 

[dinks]

Thanks for the info.  I don't know if PD is offered here.  I am in South Africa and systems seem to be a different here than overseas.  My doctor is one of the best in the country and pretty much the only nephrologist in my province, the down side is that he is extremely busy with over 30000 patients,  if you do get to see him in the unit it is hello and good bye, it took me two weeks to catch him to get permission to stop the blood pressure meds until my blood pressure stabilises.  Hope Heamo is not very accessible and only done if there is not center near the patient and if the have a good medical aid.  I know I have to stand up for myself and do try but it is going to take some time.  I am really looking forward to finding info and support here at IHD and some friend I am sure.  I find it hard to chat with family because they worry and if I complain they get upset.
Again thanks the info.

[boswife]

Welcome and it's so good that you foun your way here.  Lots of experienced people and all different stages of the D experience.  When ever you think of something to ask write it down, come here and ask and your most likley to get your answers.  Amazing friends youve found.      

[lmunchkin]

Welcome Dinks!  Im not the one on D, but husband is.  He is shy like you until you ruffle his feathers. Lol.  I agree with Desert Dancer.  Its your body and you should dictate what you want done.  I would ask them to raise Dry Weight a little and see if that helps.  Did neph stop your BP meds?  You are right in not wanting to take them, especially before D.  If it is knocking you so low, you probably don't need them at all.

Check here with this bunch to get good knowledge from those who actually know how you feel.  Just be your best advocate, cause no one else will!

God Bless,
lmunchkin
 

[willowtreewren]

Oh, Dinks,

I hope you get this straightened out soon! 

Aleta

[dinks]

Thanks everyone.

@ lmunchkin, i got the BP meds stopped a week ago but at the last session my BP still dropped to 95/48.  They had too keep me in the unit for another hour before they would release me.  I have a session tomorrow and I am going to see if I can get them to take less fluid and see if it makes a difference. 

[amanda100wilson]

It does sound as iff they are setting you dry weight too low and your UF (the amount of fluid they take off) too high.   Do you have swelling in your extrmities  and what is your blood pressure before you start?  If you do not haveswelling and your blood pressure is normal, then they really need to adjust your dry weight upwards.  Let us know how it goes when they do.

[texasstyle]

Oh yes, you have to ask, ask ,ask.. don't be shy! There's a difference between asking a lot, and being a complainer. Sounds like you need to be an asker. Is that a real word? "asker" lol. I knew very little until coming here. That's how we learn so much by sharing our stories of experience and wisdom.  My husband has has the low BP thing for a  LONG time. For him, he puts on tremendous amounts of fluid in between sessions so they have to pull so much off. That it him, it may not be you. And I may not be right about this but, I think that when you get dialized, there are different settings they use. I have to wonder if a lower setting may help. Keep in mind, I don't know much about that but I'm sure someone else can help you that knows more than me. Also,  do you take any meds for high pressure? If so YOU MAY NOT WANT TO THEM BEFORE YOU GO TO DIALYSIS. High BP meds lower your BP and that on top of your sessions may cause too much of a drop. ASK YOUR DR.  Taking them after you've come back maybe with a little time to rest might be better so your body has a chance to come out of the effects of dialysis. It was here that I learned and I will share with you that your kidneys produce a hormone that regulates your BP and fluid control. In kidney failure of course you're body is no longer producing this (or maybe minimally hmm...) and it is not uncommon for people to have some difficulty with these issues. I agree, the more you learn, the more "in control" you start to feel to some degree. Just my thought here, hope you get to feeling better soon.

[Rerun]

Hi Dinks, lots of good information already offered.  Dry weight is your true weight minus any extra fluid and it is a moving target as you gain and lose true weight.  I wish I could be the same everytime but it just changes.

A liter is 2.2 pounds but you may already be on the metric system.

Hang in there.

Rerun, Moderator 

[dinks]

@Amanda.  I have had no swelling since starting D and I thinks they have been taking more than they should for the last two weeks.  I increase my fluid intake this weekend and am feeling less tired.  I will see what the weights are tomorrow and see if they stick to 1.5 liters the BP Drops.  Always seem to have more of a problem in the last hour if they try take over 1.8.  At start of last session I think it was 125/72 which to me is low, with no blood pressure meds for a week.

[shorty590000]

This was definetly the same problem I was having the entire time I was on dialysis... They would pull too much fluid and my bp would crash and then typically I would leave with a migraine and then be in the bed the rest of the day... now I am dealing with a whole new set of problems trying to come off dialysis but I can so much relate to what you described.. you really do just have to get in tune with your own body and determine how much fluid they can pull and you still feel ok...

[Marsh]

Sounds familiar!  If they take anymore than 2 off, I crash.  But, I don't retain fluid, so that's usually not a problem.

[Whamo]

It's hell when you start cramping, and the headaches are the worst.  And it all happens towards the end, for me, anyways.  I take on water easily, so I really watch what I drink.  I usually rinse my mouth with water and spit it out instead of taking a drink.  And if I do drink, I usually take a few gulps and that's it.  It's also important to limit the sodium in your diet.   That's very hard, especially if you are in the habit of eating out at all.  But I'm finding I feel a lot better since I started dialysis, so I am grateful for that.  I think everyone is giving you good advice.  Learn all you can about dialysis from the Nephro team and other patients.  You also learn how your body reacts.  Try to understand the cause/effect relationship between your own behavior and what results.  Pain is a good motivation for learning how to cope with our disease.      But sometimes you feel like the guy in this cartoon, for sure, but hang in there.

[CebuShan]

       dinks! So sorry you have had a rough start but at least you found us early. I was on dialysis over a year before I found this site. I have the opposite problem when it comes to BP, mine goes up as treatment goes on. I still urinate and don't retain fluid but they kept trying to remove fluid causing me to cramp horribly. Now they don't take any off. Anyway, definitely see if you can get someone to explain the machine settings to you, the more you understand, the better suggestions you can make. Look at it as a learning experience rather than complaining, it might make it easier. Write down any and all questions you may have no matter how silly or petty they may seem. You will find you are NOT alone here. Come and rant all you want, we understand.        Welcome to the IHD family!

[Cordelia]

Hi Dinks, welcome to the site        I sure hope things get better for you real soon!         

[RichardMEL]

Hi Dinks & welcome to IHD.

I send you virtual supportive hugs despite what your country did to mine in the cricket last week !!! 

Many of the others have already given you some very good advice - don't be shy. You can't afford to be shy in this business. I'm disappointed to hear your unit staff are unhelpful - they are the front line and they should encourage you, be supportive and provide infirmation - specially if the doctors are so hard to pin down.

Perhaps the protocols are different in RSA, but if your "super doc" has > 2000 patients (!) that's insane, but I am wondering if there are other ways you can contact him, his office, or even an alternate neph - eg: hospital registrar or similar? My doc was always available via email, despite being the prof of Medicine and running 3 hospital departments and being mega busy - he almost always answered an email within a day or so and was always helpful and polite. If not I always knew if I had a super urgent query that I could either ask my D unit staff(who are awesome) or call up the renal reg.

I think it is quite serious if you have such little access to a neph to handle your medical queries, since nurses in the unit probably don't have the training or authority to do stuff themselves - I would perhaps see if there's something you can do - even if it means writing  letter to higher up the tree with your concerns.

About your dry weight - it is always tricky when starting D and one of the hardest things to get right. I would suggest asking your unit if they do a crit line or BVM which should give a better indication as to how dry or wet you really are rather than just going on your weight changes. If they don't or can't do that, then another option is to ask if they have any of the funky special scales that somehow measure % of fluid in the body(I have no clue how that works) which can also give a clue. My unit had these but were hardly ever used because they prefered to use BVM to get a real time idea. The other thing YOU could do is monitor your session, keep note of how much is being taken off and when you cramp or start to crash take note of where you are at. For example, say the target is set to 2 litres off, and you cramp with 1.6 off, then chances are you're prob 0.5kg or so out on the dry weight. You could then suggest that your weight be raised appropriately - if they push back, you could use the reasoning as applied above - specially if it's consistently around the same level.

Finally I am a bit bewildered why they would jump the gun and bang in a cath when your fistula blew. Yes, your fistula is probably still maturing and will have the odd problem, but it's like they gave up because it was all too hard. What my unit would do is pack ice on the blown fistula, and come back in a few days and try aain, or use a different spot. Mine only blew once in over 4 years, and they just went up my arm and continued D. Yeah it was painful and my virgin flesh did not appreciate the needle, but that's life.

I'm sorry it's such a struggle to settle in. I hope you can get some relief soon.. but I have learned you have to speak up. I am a shy person naturally (stop laughing you old timers - it's true!) but really if you don't care about your own body by speaking up on its behalf then who will?

best of luck and keep us informed!

RichardMEL, Moderator

[Subeat]

You have already received great advise from posters more knowledgeable than I.  I have only been at this since August of this year, but you have to learn a lot, quickly.  I'm not particularly shy, and the staff at my center is great, but I know they are extremely busy, and I hate to be a bother (I know, silly).  But you have to speak up for yourself.  My motivation is how very much I hate the crash and what it does to me for the rest of the day.  I don't need to see my numbers to know the crash is approaching, so at that first inkling I get the nurse's attention so we can head it off.  I really think the most important thing I have learned from these boards is to know my body, and the signals it gives me.

[Bajanne]

Welcome to our community, Dinks!  (There was a lady in the village where I was born called Doll Dinks)  I am so glad that you found our site.  You would have realized already that this is the place for information, support and encouragement.  You have already received quite a bit of that.
I never had a BP problem when I first started.  I had fairly high BP all the time and was on medication. However, the last 3 or so years (have been on dialysis for 6) I had to stop taking BP medication and started having those horribly low BPs.  I am convinced that it is all to do with having the correct dry weight established and now allowing them to take off too much.
If there is one thing that this IHD family teaches you, it is to be your own advocate and let them understand that you know your own body.
I am looking forward to hearing more from you.



Bajanne, Moderator

[Rain]

When I was getting low BP during dialysis and even on non dialysis days, I took myself off my BP Meds, when it was only a low dose.   Next time the doc came around, he went wow your BP has improved.. yes I'm not taking my meds.

The only reasons I took myself of my meds was because I almost fainted in a grocery store.  The good news was my boyfriend just picked up a pack of apple juice so he opened the bottle quickly and told me to drink.  And I didn't want that episode to happen again, since it feel like your drowning.

But first try getting your dry weight changed and as your doc to lower your meds. And don't take any meds before treatment or you will for sure crash.

[dinks]

Thanks everyone
@Richard sorry about the cricket, the best come out on top.
Thanks for all the info Richard,  I will look into some of your suggestions.  I chatted to one of the other nurses on Monday and I set the amount to take off and my BP remained stable.  I did increase my fluid on the weekend as well.  I think I was running closer to dehydrated than fluid over loaded.  I have found out that there is a nurse assigned to my file in the unit and although I don't get her everytime, she is the one to query things with.  They are due to try the fistula again in the next week according to the the doc, with all things going well they will remove the permcath a month after no trouble with the fistula, heres hoping   
Well back to the unit in the morning and it is going to be a good day. Cause I said so..........
Thanks again everyone

[RichardMEL]

good news Dinks - that they will let YOU set your limit. That's good. Sounds like they use the "primary nurse" system like we do here in oz - or at least my unit did - one nurse that basically is supposed to keep track of you, monitor labs and so on - so definitely best to keep "in the loop" with her about where you're at and your concerns.

One other thing with fluid management I found helped me was to weigh at home a few times a day and tally with my "accounted for" intake (eg: say a glass of water is ~200ml, a can of soft drink 375ml, etc) then keep track of weight changes at home (obviously bearing in mind right after food this won't exactly be totally accurate). This way I could be more sure that I'd keep to the 2kg(or whatever) limit.

Sounds like you're slowing getting on top of things and asserting yourself which is good!!

As for the cricket - your lot will keep......  We're just lulling you into a false sense of security by playing like absolute rubbish!! 8-21.. good grief!!!!

[dinks]

Hey Richard.  Its one test each.  2nd day today (200 ahead) and we will have to wait and see the outcome............ .

As for the last session.  All went well, BP stable.  Got one of the top nurses and got some more answers.  Things are starting to look up. Just now to get them to try our the fistula again.
 

[CebuShan]

Good to hear that things are going somewhat better for you. Now, if we can get mine to work better! Lol!