Dialysis and Beyond

[Dialized]

Hi, I am hoping that someone who has undergone the whole transplant and dialysis process can answer my questions.

I currently have a permcath in my neck and have been booked in to get a fistula in March. When will the permcath been taken out? and how many days on admission should I expect from that process?.

Secondly, I've been placed and the transplant list and I was wondering how long would I have to be on admission if I get a transplant and all goes well? and how often will I have to see my doctor in clinic post transplant?.

Finally, I wondered if anyone knows what these blood results from the 4Th Jan mean in terms of my kidney function.

Haemoglobin 11.5 g/dl (normal range 13-16)
Potassium 4.0mmol/L (normal range 3.6-5.0)
Urea 38.1mmol/L (normal range 2.5-7.5)
Creatinine 1092 umol/L (normal range 55-96)
Phosphate 1.69 mmol/L (normal range 0.81-1.45)
Albumin 46 g/L (normal range 35-50)

[RichardMEL]

Wow. quite a few questions there.

I'll tackle your lab results first as they are easier to look at.

Those numbers are pretty standard for someone on or near dialysis, though I would note your phosphates (PO4) are high at 1.69 (note the range) - are you on or taking any phosphate binders with your food? Your docs should probably have covered this with you. It's not massively high, but I'd be concerned. Your potassium (K) is good at 4.0, Your albumin at 46 is high suggesting to my untrained medical eye that you have a healthy appetite the high urea and creatanine figures say to me anyway (a real doc might read it differently) that you're eating lots, but the kidney's not processing the waste products very well, so they're floating around your blood. A creat of around 1,000 is pretty much what I had for 4 and a half years on dialysis so as far as I'm concerned that's kind of normal. Finally your Hb (haemoglobin) at 11.5 is also normal for someone on dialysis. Indeed it's almost perfectly where it should be (they don't want it to get too high while undergoing dialysis). It indicates a bit of anaemia, but not heaps.

So I'd say on first glance the only thing to be remotely worried about there is your Phosphate number, but you probably also need in context the Calcium (Ca) and possibly PTH figures to get a better picture of what is going on, eg the higher Phosphate number in the blood could be caused by a high PTH leaching phos from the bones, which is not a good thing. Are you monitoring your diet in terms of phosphates (eg: dairy, cheese, etc?)

OK back to the fistula - once it's placed (which is a simple procedure, can be done as a day procedure, or with an overnight stay - certainly not longer than a day in hospital) it will take 4-6 weeks to mature to be ready to use, so you'd need a catheter of some sort in for that time for dialysis. The catheter will probably be removed once stable use of the fistula is achieved (although for that length of time I would have thought a chest cath would go in rather than a neck line?).

As for the transplant - as you may have read from some of our own recent transplantees here - you could be out in a few days to a week. It all depends and I wouldn't put a hard and fast rule on it. I, myself, was in for 10 days. I would say as a rough guestimate for a "normal" transplant to allow a week. Your transplant team should go over all this sort of stuff with you.

Followups in clinic seem to vary from clinic to clinc - mine was DAILY labs for the first month (yes, including weekends) followed up by the doc, so it would involve 1-2 hours total from getting the blood taken to the results coming in and being reviewed. Sometimes longer. Then they step down to 3x/week for a few weeks, then 2x/week. I've just moved to once a week clinic visits just over 2 months post transplant. However other units start at 3x/week labs and follow up, so really again it all depends on your specific unit's protocols as well as your own situation (for example at one point I was supposed to be twice a week clinc visits, but my levels were bouncing around sot hey asked me to come in a few extra days to get labs done to keep an eye on things - again this is something you can't set in stone). You might want to ask your transplant co-ordinator what your particular clinic's protocols are for post transplant followup, including if they schedule regular biopsies or not.

Hope this helps. others may have differing opinions.

[Dialized]

Thanks for the help

Latest blood results: Haemoglobin-10.9 g/dL
                             Potassium- 4.5 mmol/L
                             Creatinine- 832 umol/L
                             Phosphate- 1.34 mmol/L
                             Albumin- 43 g/L
                             Urea- 12.6 mmol/L         

[RightSide]

OK back to the fistula - once it's placed (which is a simple procedure, can be done as a day procedure, or with an overnight stay - certainly not longer than a day in hospital) it will take 4-6 weeks to mature to be ready to use, so you'd need a catheter of some sort in for that time for dialysis. The catheter will probably be removed once stable use of the fistula is achieved (although for that length of time I would have thought a chest cath would go in rather than a neck line?).

As for the transplant - as you may have read from some of our own recent transplantees here - you could be out in a few days to a week. It all depends and I wouldn't put a hard and fast rule on it. I, myself, was in for 10 days. I would say as a rough guestimate for a "normal" transplant to allow a week. Your transplant team should go over all this sort of stuff with you.

I had better luck with my transplant operation, and worse luck with my fistula operations.

My surgeon's first three attempts at getting me a fistula all failed.  One clotted, one ruptured, one stenosed.  So it took me 9 months to get off the catheter.

OTOH, my transplant surgery went well enough that I was ready to be discharged from the hospital after just 4 days.

[Poppylicious]

I can't answer the second two questions, but I can help with the first!  Blokey went in, had his fistula created and was able to drive home the same day.  He was able to begin using his fistula within a month and had his chest line removed about a month after that - once they were sure the fistula was doing its job; again it was simply an 'in and out in a few hours' admission.

Hope that helps a tad!

 

[jeannea]

I had a pernacath removed. It's an in and out the same day procedure, not even too painful. I'm doing PD so no fistula. Getting the PD cath was an in and out same day with a few days recovery. For my transplant I was in the hospital Tuesday-Saturday with 7 weeks recovery then back to work. After transplant, my center does twice weekly blood tests for 6 months, then once weekly for 6 months, then every other week for 6 months, then monthly. As it was my veins were shot. I don't know if I could have done every day!!! Ouch.

[rocker]

Both hubby's permacath removals were in the doctor's office.  Five minutes.  Shot of lidocaine, big yank, then a band-aid.

[RichardMEL]

Thanks for the help

Latest blood results: Haemoglobin-10.9 g/dL
                             Potassium- 4.5 mmol/L
                             Creatinine- 832 umol/L
                             Phosphate- 1.34 mmol/L
                             Albumin- 43 g/L
                             Urea- 12.6 mmol/L         

Lookin' good - the phos is down into the normal range which is good. Hb is a little lower - are you on epo or aranesp or something like that? If not you probably will be soon. Otherwise all good*

(* I am not a doctor, nor do I pretend to be one. Take any comments with a grain of salt, or no, not salt, as Sodium is bad mkay.... try mrs dash instead... )

[Dialized]

Yesterday I had my worst experience with dialysis yet, became extremley dizzy and started vomiting everywhere. The doc wasn't quite sure as to what was happening as I wasn't dehydrated. Has this happend to anyone???

[thegrammalady]

Yesterday I had my worst experience with dialysis yet, became extremley dizzy and started vomiting everywhere. The doc wasn't quite sure as to what was happening as I wasn't dehydrated. Has this happend to anyone???

who said you weren't dehydrated?? that's exactly what often happens when they take too much fluid. that and/or bad cramps. despite what your doctor or the nurses or techs may say, dry weight is nothing more than an wild assed guess. everyone is different.

[Dialized]

The doctor did some sort of set of observations and said something about me being warm and not dehydrated  and said that if I experienced further dizzyness I should contact my local hospital. Think she just wanted rid of me lol.

[RichardMEL]

hmm sounds a bit suspect to me. It's a classic sign of a crash from too much fluid being taken out. Have they established a dry weight for you? Do you feel you may have put on weight yourself (I mean real weight, not fluid)? Do you drink a lot?

If it was me I would ask for a re-evaluation of my dry weight (ideal body weight it is sometimes called) by use of a "crit line" (otherwise known as BVM measure) to see how you are refilling and how dry or wet you might be.

Another issue is they could be pulling fluid too fast (the "UFR") which may be upsetting your system, and a "UF profile" may help you out (say one that decreases the rate slowly over time, or has a series of breaks in it to allow your body to refill) - that sort of thing often worked for me.

There could also be a issue with the pump speed being too high and you not tollerating it well. An idea might be to turn it down a bit and see how that goes.

It does seem a bit dismissive and also "oh if you feel dizzy again go to hospital"??!!! huh?!! Talk about passing the buck!!

[Dialized]

I've lost 1 kilo of real weight in a week they said, probably because of not eating and when I eat vomiting ocassionaly. Also is depression a side effect of Fsgs? not necessarily depression about the kidney disease. Depression in general, because im feeling terrible at the moment.

[RichardMEL]

It wouldn't be fsgs per se - but your situation which sounds to be quite difficult would depress most people (ie: it's NORMAL). I think anyone would get down being in your shoes with difficult treatments on top of the realities of life with kidney failure.

if you're losing a kilo of real weight a week that is sounding quite serious. If you're vomiting a lot are you replacing that with some fluid (yes I know, even with the restrictions) - dehydration can be an issue too.

If they note you're losing weight are they adjusting for that in terms of how much they take off, your target weight etc?

[Dialized]

Yes, I usaully reach my fluid allowance of 1.7 litres daily. I don't think they took off any fluid today. The vomiting is spontaneos, on monday had a burger vomitted, tuesday had chicken and vomited today I had a subway sandwich didn't vomit but when I got home I had pasta and vomitted

[Rodneyss1]

I too, have FSGS. I was diagnosed in 2003 and finally reached endstage this past December. Just speaking from my experience, when I first started I vomited too.  I think your system has to get used to dialysis.  The dizziness that you experienced is from them taking too much fluid off.  As was stated before....dry weight is a wild-ass guess!  I have had the unpleasant experience of having too much fluid removed...SCARY.  Hang in there, my friend!

[Gandalf]

Re the vomiting and dizziness:  This happened to me quite a few times, also not necessary with dehydration.  What is your BP doing - the nausea and dizziness often is indicative of a sudden drop in BP?  I find that decreasing the pump speed for a while does help, as does not eating in close proximity to the dialysis session, or immediately after, as that really does cause a decrease in BP.  Perhaps this could assist you?

Re the feelings of depression - I think dialysis and all the surgical interventions before it, are enormously stressful, and change not only ones life, but ones sense of self and everything around one.  So perhaps it is fully to be expected that one would experience feelings of depression/sadness - maybe one needs to give oneself permission to feel that way for a while.  Be kind to yourself...!

re the permcath removal - I have had three removed - each time went to theatre, they did it under a local, and I went to work pretty immediately.  The longest and most irritating part was all the paperwork!
The fistula is slightly more complex, but really no big issue either.  Just time-consuming and bureaucratic!

Take care of yourself, am thinking of you lots.

[Dialized]

My blood pressure fluctuates between 110-134, the higher it is the more severe the headache. The doctors thought they were caused by me straining my eyes, so prescribed glasses to be worn when I need to see something
 far away. However, hasn't helped much.

[Dialized]

Sorry for the rushed replies I've been writting from my phone, whilst on the go. I'd like to give some more background information because I don't think I've been too clear. Had a biopsy in august 2003 which revealed Fsgs, unfortunatley it was steroid resistant. Been in and out of hospital since then and was rushed to hospital in december 2010 due to severe headaches and started emergency dialysis. When I was in clinic on the first day when i got admited my blood pressure was 148 and the headache and dizziness was severe, when I got to the ward and lay down it dropped to 124 and eased a bit. However, it went back and forth and dialysis was started.

Although I haven't had headache's as severe as when I was on admission, I still feel get dizzy especially after a car journey.

On the depression, I can't control it just makes me feel terrible all the time. I usaully ignore the nurses and doctors due to it as everything they do makes me get annoyed even if they are being nice. For example even though im 17 im still under the Children ward and the nurse yesterday was like were arranging bowling for the dialysis ward do you want to come? and I said no point blank. The reason for doing so is because it felt like they are saying "look were your new freinds now and were going to be seeing a lot of each other". I don't like thinkinng about dialysis in my spare time!!

[Poppylicious]

On the depression, I can't control it just makes me feel terrible all the time. I usaully ignore the nurses and doctors due to it as everything they do makes me get annoyed even if they are being nice. For example even though im 17 im still under the Children ward and the nurse yesterday was like were arranging bowling for the dialysis ward do you want to come? and I said no point blank. The reason for doing so is because it felt like they are saying "look were your new freinds now and were going to be seeing a lot of each other". I don't like thinkinng about dialysis in my spare time!!

Awww, bless.  Blokey was like that for a couple of months after starting dialysis.  At the time he was convinced it was only going to be short-term and his kidney function was going to miraculously burst back into life.  He really wanted nothing to do with it, hardly talked to people at dialysis and didn't really get to know the nurses.  I can only imagine how horrid it must be for you, but try to become more friendly with them (it has its advantages!)

I'm not sure about the vomiting; Blokey used to get really ill but he hasn't thrown up once since he began dialysis.  I hope it gets better for you. 

Just out of interest, are you still at school? (sorry, being nosy!)

[Dialized]

Yeah I'm at school doing my A-levels. The nurses try so hard to be liked though, try to be funny by making fun of themselves.

[Bill Peckham]

It can be hard to counteract the nausea. Are you a milk drinker?  Is there anything that settles your stomach? You might see if milk settles your stomach and have a bit before trying to eat. It is important that you get calories - more important than worrying about what the phosphorus content is, although that is important it can be managed with "binders" and you are back in range. Have you gotten an Albumin reading with your blood reports?


What is your dialysis prescription? Time/frequency? Do you have any urine output?

[Dialized]

I tend to drink milk sometimes, I try to drink a fizzy drink after eating to see if it settles my stomach. My albumin was 43 last time I viewed the blood results, ill have to check what it is now. My dialysis is 4 hours, 3 times a week.I pass urine 2-3 times a day.

[Stoday]

It can be hard to counteract the nausea. Are you a milk drinker?  Is there anything that settles your stomach? You might see if milk settles your stomach and have a bit before trying to eat.

Careful! Lactose intolerance is endemic among non-caucasians.

Percentage of people with lactose intolerance by race.

90-95% Oriental
15-25% Caucasian
70% African
50-55% Mexican
60% Jewish
Up to 95% Native Americans

People with lactose intolerance can usually tolerate a few ounces of milk at a setting, particularly when consumed with other foods. Milk based products such as cheese, yogurt, ice cream (limited amounts) are usually digested with no ill effects.

[Poppylicious]

Yeah I'm at school doing my A-levels.

Oooh, are they coming up this summer?  Are you hoping to go to uni?  Dialysis and the awful feelings that come with it must be a nightmare on top of exam/coursework pressure.