Just started PD dialysis - finding it tough right now

[myporkchop]

If I understand correctly the number of new patients is greater than the number of new Cycler machines.  Manual exchanges are not only effective, they give the patient the confidence they can do their treatment even when the power goes out.
It can be very easy to error in bleeding lines and allow a small volume of air to be admitted.  And it does take a while for the body to absorb and dispell that air.  And it does HURT, a lot.  The experience makes us be careful not to mamke those small mistakes again.  As I am learning now from my first infection since I started PD 3 1/2 years ago.  I had to have made a contamination.  You can bet money I am going to be even MORE careful from now on!

Mum is getting better.

Thank so much Charlie.

I had a question - when draining IN we noticed a small bit of iodine in between the green seal and the connector. We have noticed this on two different occasions, and so she has clamped her catheter, and closed her roller clamp and got a brand new bag.
Has this happened to you before? and is a little bit of iodine ok to drain in? We were not sure about that one? Thanks

[kickingandscreaming]

The iodine is a part of the mini-cap and is there as an extra barrier against infection (if this is what you're talking about).  Whenever I put on a fresh mini-cap at the end of an exchange, there is a small amount of iodine that drips out.  It is supposed to be there.

[Charlie B53]

Each Mini Cap has a sponge soaked in iodine to ensure that no bacteria can survive.  It is perfectly normal to see the discoloration pass through the line when you begin your drain.  Even if a small amount was to flow inwards to the body it would not cause any problem.

It can be a bit alarming to see any color but it is just fine.  Not to worry.

Air bubbles are a cause for concern, lines must be primed to bleed out all air as air inside you will cause pain.  Somehow nerves in the diaphragm interpret the air and cause pain in the shoulders.  And it HURTS.

About the only other thing to watch for is cloudiness.  White clots or strings are fiberin, a natural sort of growth that can accumulate and reduce flow through the hose.  Personally I think it is somewhat like a water-logged scab from possible irritation of the cath rubbing against things.  This is near normal and if too much can be treated.  Not an emergency.    Cloudiness, sort of a watered down milky look is infection and must be treated immediately.  If you ever see this call your PD Nurse and get into the clinic or ER immediately.  This can progress very rapidly and can be fatal.   This is the reason your training is so intense, to instill very careful bacteria control to prevent possibility of infections.

[myporkchop]

Thanks for the tips re the iodine, that is good.
I took her in to see the pd nurses today as her legs and ankles are swallon again. They asked her to do 5 bags yesterday which she did, in the hope that this would pull off some excess fluid, but she only lost 100g. So today we went in and they have given her the purple cap (the long dwell bag) to try over night now to see if this will help. Gosh so many tricks that can be used. They also said it may help lower her blood sugar levels, which will be great.
I hope you are all doing well x

[Charlie B53]

My daily blood sugar rise from 12 liters was only about 30 points.  I checked repeatedly as I too was worried about it.  This was easy enough to adjust my Lantus to compensate.  Talk to your Diabetic Nurse and make sure before making an adjustment.

Ico can cause a false high sugar reading with some blood sugar meters.  Ask your Nurse about which meter you have just to be sure.  You do not want to use more insulin than needed and drop her sugar too much.

[jmintuck]

I am slowly entertaining the idea f PD at home. I just have to watch my P's and Q's when I get started, whenever that would happen. The P's and Q's are about being as clean as possible and staying highly watchful to try very hard to prevent the slip up that always would like to happen. I would very much try to avoid a stay in the hospital as much as possible and do my darndest about things like this.

[kickingandscreaming]

I'm still very early in my PD journey as I only started in January.  So I don't have a long track record and wouldn't brag about it anyway if I did.  When I first started, I was very nervous about the whole hookup part and I could feel my heart racing as I did it.  Lately, I feel quite calm as I hook myself up and set up the cycler.  I am one-pointed in my concentration during that time and really focus on what I'm doing.  But I feel quite relaxed doing it. I realize that "stuff" happens and there is always room for a slip.  But if you pay attention and use lots of hand sanitizer as you go, your odds are much improved.

[Fabkiwi06]

It's inevitable that a slipup will happen. There have been cases where I've accidentally touched ends I shouldn't have. As long as you are prompt about contacting your nurse and following their instructions if and when you do have your oops moments, you should be ok. Don't have a "wait and see" attitude about it, because that's how tiny problems turn in to BIG problems. I haven't had any infections yet (knock on wood), and I'd like to think that it's going to stay that way.

[myporkchop]

Wow the ico solution pulled off 900g of fluid overnight. She is currently doing a 24 hour urine collection to see how much she is urinating now since she started dialysis. It will be interesting to see.

[Charlie B53]

That's about 2 POUNDS!   Great!   Keep this up and it won't be long before Mum will really begin to feel the improvement.  Getting the excess water out of her system will relieve a lot of the negative symptoms on her lungs and heart.

Combined with her daily PD and being careful to limit her fluid intake just a little bit.  She will notice the drop at her daily weigh ins.  You are logging everything in her chart, so you will easily be able to see the progress.    It is impressive how much water we have hidden inside us.

[beckums70]

Why is your mom not able to do the cycler at night?  It seems like it defeats the purpose of doing PD if it takes up your whole day.

Hi beckums - the dialysis team said she had to start off with manual PD exchanges to get used to doing it etc, they then said they did not have enough cycler machines and that she would be put on a wait list, however their preference for giving out cycler machines were to people who worked or had had small children etc. So as my mum doesn't work anymore she is at the bottom of their list unfortunately. We can understand that. But she is very much looking forward to being able to have a cycler machine, that would be just great

I think I missed the fact that she was doing manual exchanges.  That's stinks that there is a priority list for cyclers!  I hope she gets one soon.  Everyone has their own preferences and I know some people like manual exchanges better than using the cycler, but I can't imagine doing manuals throughout the day.  I don't even think about dialysis during the day.  That's the great thing about dialyzing while you sleep--your day is freed up for other things.

[myporkchop]

Hi all,  well my poor mum has been hospitalised 3 times in the last month. She has been experiencing severe hip and back pain possibly due to her siatic nerve. They took xrays and can't seem to find what is wrong. So she has been very crippled and needing strong pain relief. This in turn has made her really constipated. Hasn't had a bowel motion in 5days. Therefore her pd dialysis is not working as well and she has began to retain fluid again, approx 5kg in the last week. She is back in hospital now and giving her lots of laxatives but still no movement yet. They have also added one 4.25% bag to her 4 exchanges and this seems to be pulling off the xtra fluid. Gosh what a complicated process to get right. I hope u r all well xx

[kickingandscreaming]

I was worried that we hadn't heard from you in a while. I'm sorry your mom has such a struggle.  Constipation can be a bear when you're trying to do PD.  I hope it resolves soon and your mom can start to move forward.

[Charlie B53]

Opiate pain meds do cause problems.  But they are a very necessary evil in order to control severe pain.

I have had much success using the synthetic fentenyal, a patch that is worn three days at a time.  I've been fortunate, skipping as much white flour foods and increasing veggies and fruits to never have any constipation.  Recently the Pain Dr changed me from fentenyal to methadone, here again, not eating much flour and eating more fruits and veggies I avoid any constipation.

AND  avoiding all those extra calories I somehow managed to lose 100 excess pounds.    I need to skip some other foods so I can lose that other 40 pounds.

[myporkchop]

Thanku k&s for your kind message, and charlie. I hope you are both well. So much to learn about managing your health and dialysis. She had been passing out when i was showering her and her blood pressure was very low, and the drain out bags were not quite full. They related all of these complications to constipation. Unbelievable. So now we have to make sure she takes lots of laxatives when on the strong pain relief

[Fabkiwi06]

One of the first things my nurses told me to do when I started PD was add a daily dose of stool softener to my meds. I also always have laxatives on hand, with the directions to take them if I ever go more than 24 hours with no BM. To be perfectly honest, I can usually feel it in my gut if I need to take them long before the 24 hours is up.

After I got my cath placed and I had my pain pills, I was taking up to 4 of those stool softeners a day to just keep the lines open. Narcotics will suck you dry.

The other thing I've found to help is adding in a daily probiotic. It helps keep everything going the way it should. Moving around also help things "move around" inside. Even just taking a short walk around the yard can help get things going.

I get both the stool softeners and probiotic over the counter at the pharmacy... check with your doctor to make sure it's ok for mom though.

It's a very delicate balance and you're constantly readjusting. Too much fluid and you get overloaded with high blood pressure.... too little fluid and you have slower bowels and low blood pressure... this pill solves this problem but causes two more... fix this side effect with something but it causes the original problem...

Sending good thoughts to mom and you! It's a giant learning process, but keep going forward!

[myporkchop]

Thanku fabkiwi it is a giant learning process that's for sure. Im sure it will all sort itself out soon, well hopefully   xx

[myporkchop]

Yay discharged today from hospital. Unfortunately she has put all the fluid weight back on. It was really hard at the hospital to control fluid intake but now that she is home hopefully get things back on track. She is still in so much pain. They gave her a shower chair to take home, a bed rail and a high toilet seat. She also has a frame to use around the house. I feel so sorry for her ask that she is going thru

[Charlie B53]

I hadn't thought of this in a very long time.  But Mom's excess water somehow triggered me to remember how during long training marches in the sand and late summer heat and only ONE canteen of water that had to last throughout the day I had a VERY DRY mouth, terribly thirsty but could not risk drinking all my water at once.   To moisten my mouth I used a small smooth stone.  Just kept it in my mouth caused the saliva glands to stay awake, keeping my mouth from going totally dry and driving me to drink.

I didn't figure this out, an old Sargent told me of this when we were talking about dry mouth driving thirst and running out of water in an arid climate as that where we were.

Can this be useful?  I wouldn't recommend a coin as some of the metals may not be so good, they could react with stomach acids if swallowed.  Otherwise if swallowed it should simply pass through the system with no problem.  Glass or plastic beads are an idea.

Edit;  On further thought.  A kernal of un-popped popcorn, a dried pea, whole coffee bean.  Some beans, like kidney, can be toxic if under-cooked or raw so I would avoid most all beans.

[myporkchop]

Hi Charlie, gosh any tips are worth looking into thanks.

I was sad today, when my mum mentioned to me - "was this really worth it?", I asked her what she meant and she said "the dialysis". It has been a rocky 5-6 weeks since she started the dialysis treatment, in and out of hospital, in constant pain (not related to the dialysis), constipated, and now suffering from incontinence. She has taken a day off today from taking the laxatives to see if that will help. She is soooo tired all of the time, still has a lot of swelling in her ankles and feet and therefore short of breath. She was told to do another 4.25% bag tonight to see if she can pull more fluid off and today's weight she had gained 100g.
Her target weight is 91kg, currently 94.5kg.
They gave her a increase dose in her gabapentin medication to help with her restless legs and cramps, but now think this is making her even more drowsy and possible hallucinating a little.
So scared!!

[Charlie B53]

The very old saying, "Rome wasn't built in a day".    It is going to take some time yet to dial in Mom's treatment.  Her meds are going to need adjusting, that alone takes time to see exactly how her body reacts to each med, and adjustment to get each one correct FOR HER.

Pretty much the same with her diet.  Mom HAS TO eat more veggies and fruits.  Cut out as much starches as possible, ESPECIALLY flour.  Flour acts a lot like concrete in the bowels, needing far more tomato like veggies, very high in fluid, adequate fiber, to prevent the flour from setting up solid.   This means restriction breads.  There is those low carb breads.  Labeled 35 or 40 carbs per slice.  I use these as I can have two slices and yet only the carbs of one regular slice.  So I can still have a sandwich some days, not every day.

Hydration is very important but before you can address this you have to gain control of her blood sugar.   Sugars drive her thirst and causes the excess water accumulation and swelling.   Sugar is also the driving force that makes PD work.  High sugars and PD will not work near as well.   Mom has to test at least 4 times a day, and adjust her insulin according to each test.   Learning to portion control foods as well as what foods she is eating will help immensely.

I imagine she is using Lantus and supplementing that with a fast acting insulin every time she has a high reading.

Check with her diabetic specialist about how to adjust her Lantus.  Ideally she should be taking only enough to hold her morning sugar to very nearly equal that late night reading immediately before bed.   Once this balance is achieved she should only need small amounts of fast acting for part of her meals as some of each meal will still be covered by her Lantus.     It will take some time to get to this balance.  Do NOT make changes more than a couple of units or more than a couple times  a week.  It takes time.   Verify everything with her Dr or Diabetic Nurse.

Once her sugars are good then PD will begin working much much better.

Once all this happens Mom will not be swelling hardly at all.  Breathing so much easier.  And finding that Dialysis CAN work to give her freedom to enjoy life again.   It may not be today, but that day is getting much closer.

[myporkchop]

Thanks for the advise Charlie. I believe you are right, once the diabetes is under control (which is getting there), the pain medication sorted (including how to manage her constipation) will all help to reduce swelling and therefore her breathing will become better.

She was thinking of readmitting herself to hospital on after the weekend as her weight was up again to 94.5kg (despite monitoring her fluids closely) she said she felt like "giving up". I told her I would talk to the pd nurse which I did. She advised to do another orange bag today to draw some more fluid off and continue this until Monday then review. I told her about my mum being in severe back and hip pain, she said this was all down to "wear and tear" as nothing appeared on her x-rays. She also said that for some people dialysis doesn't help people to feel any better than when they started and that my mum might be one of the unlucky ones. I said, it was still early days and once everything is balanced a bit better with her health she may start to improve which she agreed. I also mentioned that she wanted to give this her best shot as she wasn't ready to through in the towel just yet (still too young - 64). I spoke to mum about what the nurse said and she said she was not going to stop the dialysis, she was just feeling down about the pain she is currently in. I hope that once a lot of excess fluid is taken off, perhaps her muscle pain in her back and hips may start to improve.

Thank you for always giving us hope, as all she wants is to start enjoying her life again xx

[Charlie B53]

Pain is not the same for every person.  Some are more sensitive, others not so much.  Chronic pain wears on ones soul, or so it seems to happen with me.  I thought I had always had a very high tolerence fopr pain, however, chronic pain can wear through that resistance after enough time that it becomes disabling pain, unable or unwilling to move for fear of increasing the pain.  I think that is where I am now.

Dr's are reluctant to prescribe much.  DEA has pressured many into refusing to prescribe for fear of the patient over-using or possibly selling their meds.  I have to admit there may be a certain percentage of patients that may do that.

I have been 'clean' since September 1981.  Prior to that I would be one of those that over-used just for the altered state the medication would cause.   Not any longer.   I have refused opiate meds many times, for fear of that 'altered' mental state they cause.  I have found that the synthetic opiates, fenteyal, tramadol, and methadone, do not cause me any of those altered feeling, and they DO cause a noticeable reduction in my perceived pain.

I was surprised last time in-patient when Dr gave me morphine in my IV.  I didn't want it but was in so much pain I could not breath. Morphine pills make me very sick, throwing up shortly after taking them but not caring much about anything as I was so wacked out from the opiate that I didn't care about the pain.  In my IV it didn't have that effect, it only lessened the pain.  Which makes me wonder if the level of pain makes a difference or the method of administration.  Since I would only take the pill at home once the pain became severe I can't say that the level opf pain made the difference, so it had to be the method of administration.  By-passing the stomach must be the key.   By no way in hell am I going to inject myself ANY drug.  Well, except for my insuline, that I can put into my 'jelly roll' around my belly.

I take tramadol regularly, it makes a difference.  Dr cut my dosing in half since they came out with a new protocol that spells out half for renal patients.    I was using 50 mcgm Fenteyal patches, worn three days at a time and they worked marvelously.  Until I admitted to Dr that I occasionally drink a beer in the Summer while working in the yard, sweating, thirsty, needing liquid and minerals.  NEVER drinking one after another, but one rare occasion actually drinking two in one day, many hours apart.  For that reason, alcohol, the drug review board wanted to cut me off fentenyal totally and started cutting my dose back until at the lowest level Dr switched me to my current dose of methadone.   It is not near as effective as the fenteyal, but I am managing.  Not moving too much.  I still have the pain flares when I over exert myself.

Mother needs to see a Pain Specialist, have a long talk about her pain, what it is, where it is, what causes it to increase, what works to help ease it.  Finding a caring Dr that will take the time and listen, can make a huge difference.  Medication correctly prescribed can relieve most of her pain without causing disabling mental confusion.   After addressing the pain issue Mother can clearly be able to focus on her diet and sugar much easier, which can make her dialysis much more effective.   This can take a bit of time, but not really that long.  Ask her Nurse if her Neph can make the referral to a good Pain Specialist.
Sorry for another 'book'.
TakeCare,

Charlie B53

[kickingandscreaming]

MyPorkChop-  I hope you and your mom are OK and safe after the tsunami that struck not far from where you live.  No one ever needs to be on the path of a tsunami, but with everything else you're going through, it's just one more insult to injury.  Please take care and stay safe.  K&S

[myporkchop]

Pain is not the same for every person.  Some are more sensitive, others not so much.  Chronic pain wears on ones soul, or so it seems to happen with me. 

I take tramadol regularly, it makes a difference. ..... I was using 50 mcgm Fenteyal patches, worn three days at a time and they worked marvelously.  Until I admitted to Dr that I occasionally drink a beer in the Summer while working in the yard, sweating, thirsty, needing liquid and minerals.  NEVER drinking one after another, but one rare occasion actually drinking two in one day, many hours apart.  For that reason, alcohol, the drug review board wanted to cut me off fentenyal totally and started cutting my dose back until at the lowest level Dr switched me to my current dose of methadone.   It is not near as effective as the fenteyal, but I am managing.  Not moving too much.  I still have the pain flares when I over exert myself.

Mother needs to see a Pain Specialist, have a long talk about her pain, what it is, where it is, what causes it to increase, what works to help ease it.  Finding a caring Dr that will take the time and listen, can make a huge difference.  Medication correctly prescribed can relieve most of her pain without causing disabling mental confusion.   After addressing the pain issue Mother can clearly be able to focus on her diet and sugar much easier, which can make her dialysis much more effective.   This can take a bit of time, but not really that long.  Ask her Nurse if her Neph can make the referral to a good Pain Specialist.
Sorry for another 'book'.
TakeCare,

Charlie B53

Thank you Charlie, I have been speaking to a nurse about different pain reliefs and they suggested the exact same ones as you mentioned. She didn't really explain much about them but mentioned the fentenyal, and tramadol. I will ring tomorrow and ask about getting her a referral to the pain specialist, thank you so much for your advise. I wish I had thought of that, then they can work out what will help her. THANK YOU!!!

I am sorry you have suffered severe pain yourself for such a long time. Do you have your pain in your back too? It's just awful.