Just started PD dialysis - finding it tough right now

[myporkchop]

Hi all,

I thought I would post here as my mum is no longer pre dialysis, she has just finished the training for PD and has been at home doing her manual exchanges 4 times per day.

If you have read our intro and topics in pre dialysis forum, you would see my mum has many health complications.

I haven't posted recently as she has been in and out of the emergency dept twice since she was sent home from training last tues. Thurs afternoon she felt dizzy and faint and was told that she had passed out for a short time and vomitted. They think she rushed to go out and about too quickly and needed to rest up for a couple of weeks. Her blood glucose levels have been sky high - well into the 20's.
Today I noticed a little bit of green gunk on her dressing and her exit site looked a bit inflamed. We rung the on-call dialysis nurse who told us she had to go to ED to get it swabbed and get antibiotics. She was so upset, and didn't want to go. Very sleepy perhaps to her high sugar levels etc
They have decided to keep her in for a few days to see what is going on for her. She was already on antibiotics for a chest infection, so everything on top has made them concerned. She started to cry, feeling sorry for herself, I cried with her.
The nephs did say at the start this was not going to be easy for her given her other health conditions and she will find it hard. One nurse said to me "you do know she is not going to get any better, don't you?" - that was not a nice thing to say (mum had gone to the toilet).
She also has found not to be urinating much now, but is not swallon anymore with fluid retention.
I pray they will get her well enough and strong to go home and get back on track x

[kickingandscreaming]

I'm sorry this is so difficult for you and your mum.  Is someone managing her diabetes properly? That makes her more prone to infection.  The one good thing, is that she is doing better with fluids.  The nurse was correct.  Not diplomatic, but correct.  Your mum will NOt get any better.  Once the kidneys are gone, they're gone. She can improve in management, but not in fundamental condition. Only a transplant could possibly improve her condition and I doubt she is eligible for that.  So learning to manage it is the best option she has.

[Charlie B53]

Mum will begin to feel better once she gets better control of her blood sugar and the Dialysis gets her  blood chemistry back within acceptable ranges.    These things will take some time and a lot of effort.   Essential to getting the blood sugar controlled is testing at least four times a day.   Figuring just how much insulin to inject to bring her sugar down within a more normal 100 to 120 range.  This takes a lot of practice and learning how to estimate carbs consumed.   Controlling blood sugar is critical as PD relys on that to effectively pull off excess water from her system.  When blood sugar is high PD does not work near as well.

Once I began controlling my sugars I dropped another 10+ pounds of water and my blood pressure also came down enough my Dr stopped one of my BP Meds.

Youo both still have much to learn about carbs, insulin, and how Mum reacts to insulin.  I used to be insulin resistant, needing far more then a little to have any effect.  As I lost weight, not just the water weigh but I lost a bunch of fat, as that fat was lost my insulin resistance was lost.  I am almost insulin sensitive, not needing very much to make a large difference in my sugar.   But this took just about two years of serious attention to testing and adjusting my injections.   A lot of effort, but it has pretty big rewards.

I'm sure it saved my life.   At least extended it by a large amount.    And I am NOT sick any longer.

It is going to take time, and effort, but Mum WILL feel better.  Just maybe not yet today, but it will get better.    Believe in that.

[myporkchop]

Thanku k&s and charlie. She is still so unwell today. But she is in the right place for doctors and nurses to be right at hand to help her to get better. The dialysis part seems to be going well and they are going to keep her on her current antibiotic to help the exit site to heal.
We hadn't seen the diabetes doctor in years as her blood sugar were stable but since she has started dialysis her sugar levels have hit the roof. No wonder she can't keep her eyes open or has very little energy. They have changed her insulin regime so hopefully by tomorrow we may see some improvements. Thanks again xx

[beckums70]

My parents were both diabetic, and whenever either of them would have any kind of injury or surgical procedure their BS would get out of control and be all over the place.  When the body is working hard to heal itself a diabetic will often have blood sugar spikes and drops.  As she starts to heal this should get better.  Also, it sounds like she had some infection in her exit site, which will also wreak havoc on blood sugar levels until it's under control. 

I remember feeling very, very cruddy for the first few weeks after I had my catheter placed and even after I started dialysis a home on my own.  I don't think the nurse was accurate when she said your mom won't get any better.  While it's true that dialysis isn't a cure, neither is transplant and there are positives and negatives with both.  If she's getting adequate dialysis and her blood sugars are under control, she will start to FEEL better, gradually.  She'll get more energy and be able to do more of the things she enjoys again.

I think we all have days when we pity ourselves.  Heck, why shouldn't we?  It sucks having this disease!

I don't know how old your mom is, but if she's elder, I would suggest that you find ways to keep her engaged in the world around her once she's feeling better, so she doesn't get focused on her illness to the exclusion of all else.  Get her involved in a senior group or club or something, so she's around other people who are active and not held back by their physical limitations (so far as being able to socialize and enjoy life in new ways).  I work with seniors (have done so for 20 years) and the number one cause of health decline and depression in seniors is isolation.  The isolation often begins with a health problem with which they become preoccupied and start to use the phrase "I can't" a lot.  She will not do well long-term if she stays obsessively focused on dialysis or her condition.

The reason we do dialysis and transplants is so we can enjoy life!  If we become defined by our disease and let it rule our days, we are not enjoying the quality of life dialysis can give us.  We all have good days and bad and we all struggle with fatigue, but we find our new limits and don't let the fact that our limits have changed keep us from engaging in life as much as we can.


Encourage your mom that with time, things will improve and do what you can to keep her spirits up.  Depression can be a slippery slope!

[PrimeTimer]

I think your advice is spot on, beckums70! It is too easy to become so focused on one thing that we lose sight of another and before you know it, you're feeling crummy, overwhelmed and "stuck". I liken it to falling into a deep hole and the longer one stays in the hole, the harder it is to get out of it. I think the key is to stay active and to keep thinking about the usual parts to daily living that are not kidney/dialysis related and make plans to do something every day, whether it be for fun or a chore, big or small. Keep the mind and the body going!   

[Charlie B53]

Blood sugar is a lot like a huge yo-yo.  Most everything will make it go up.  Very little will bring it down and keep it down.   Exercise is a terrible word.  Most people think they are NOT going to do jumping jacks, much less go to the gym and use all those machines.  Any physical activity that involves MOVING the body, using the legs, simply walking, is one of THE best exercises there is.   We get so far out of shape just sitting, the body muscles atrophy and we stay tired.  It is very difficult to get up and start moving all by our self.  A partner, willing to spend the time, and effort, to keep us engaged in conversation while we walk, even a short distance, makes a huge difference.  Once in the habit it becomes easier and we can slowly increase the distance.   This can drop blood sugar many points in a surprisingly short time, daily.   Combined with testing, insulin, and learning how to better control carb intake, within a year you will both see, look, and feel the differences.     None of this will magically work over night.   It took most of a lifetime to get like this, it is going to take some time, and a little effort, not a lot, and Mum will improve, a lot.

Motivation, that Mum WILL get much better, but she has to put in the effort.    She has made substantial progress already.  It will only get better from here on.

[myporkchop]

I remember feeling very, very cruddy for the first few weeks after I had my catheter placed and even after I started dialysis a home on my own.  I don't think the nurse was accurate when she said your mom won't get any better.  While it's true that dialysis isn't a cure, neither is transplant and there are positives and negatives with both.  If she's getting adequate dialysis and her blood sugars are under control, she will start to FEEL better, gradually.  She'll get more energy and be able to do more of the things she enjoys again.

I think we all have days when we pity ourselves.  Heck, why shouldn't we?  It sucks having this disease!

I don't know how old your mom is, but if she's elder, I would suggest that you find ways to keep her engaged in the world around her once she's feeling better, so she doesn't get focused on her illness to the exclusion of all else.

The reason we do dialysis and transplants is so we can enjoy life!  If we become defined by our disease and let it rule our days, we are not enjoying the quality of life dialysis can give us.  We all have good days and bad and we all struggle with fatigue, but we find our new limits and don't let the fact that our limits have changed keep us from engaging in life as much as we can.

Encourage your mom that with time, things will improve and do what you can to keep her spirits up.  Depression can be a slippery slope!

Thanks very much beckums70. My mum is 64 (so still very young I think) She wants to get better so that she can get back into playing cards with her friends on a wed and thurs evening; go to her exercise groups with her voluntary role for pulmonary rehab; and go to the casino to waste money
I can't wait for her to get better so she can get back to doing the things she enjoys. It has been one week since she started PD dialysis at home, and it has been very stressful with her health.
She is doing really well with her dialysis, however due to her high blood sugar levels she has not been able to concentrate too well, and has needed someone to watch over her to make sure she is following all of her steps.
Poor thing. Thanks for your reply

[myporkchop]

I think your advice is spot on, beckums70! It is too easy to become so focused on one thing that we lose sight of another and before you know it, you're feeling crummy, overwhelmed and "stuck". I liken it to falling into a deep hole and the longer one stays in the hole, the harder it is to get out of it. I think the key is to stay active and to keep thinking about the usual parts to daily living that are not kidney/dialysis related and make plans to do something every day, whether it be for fun or a chore, big or small. Keep the mind and the body going!   

Thank you primetimer. I am sure once things are under control she will start to feel better and have more energy to do the things she loves. At the moment she feels as tho her day revolves entirely around the time she has to have her next dialysis, and counting the hours.
She hates having to wake up early to get started, but has to get up so that she is not going to bed too late at night. She used to love her sleep-ins. One day I hope she can do the cycler overnight, but in the meantime she just has to get into a pattern of some sort.

[myporkchop]

Blood sugar is a lot like a huge yo-yo.  Most everything will make it go up.  Very little will bring it down and keep it down.   Exercise is a terrible word.

None of this will magically work over night.   It took most of a lifetime to get like this, it is going to take some time, and a little effort, not a lot, and Mum will improve, a lot.

Motivation, that Mum WILL get much better, but she has to put in the effort.    She has made substantial progress already.  It will only get better from here on.

Thank you Charlie. She used to love walking around her block. She is hoping to get back into walking when she has more energy. At the moment all she wants to do is sleep and I don't blame her for being tired all the time when her sugar levels are so high. The doctor's changed her insulin regime and included a fast acting insulin, but her levels are still out of control. I feel so sorry for her and there is nothing I can do. Hospital is the best place for her right now I think, so they can get her on some sort of balance with her dialysis.

There was some talk about her maybe going on icodextrin overnight, but I am not sure yet if they will as they believe the 2.5% dextrose is doing a good job. I suppose we will just have to wait and see. Thank you

[kickingandscreaming]

There was some talk about her maybe going on icodextrin overnight, but I am not sure yet if they will as they believe the 2.5% dextrose is doing a good job.

Icodextrin is frequently used for diabetics and for those with a long overnight dwell.  It has less impact on blood sugar than 2.5% some of the dextrose gets absorbed and can raise weight and/or blood sugar.

[Charlie B53]

I am using Ico for my long dwell during the day while using the Cycler at night.  For the year + that I was doing manual exchanges I used Ico for my over-night dwell.    Ico uses a different type of sugar, one that isn't readily absorbed by the body so it does not raise the blood sugar.   The only drawback to using Ico is you MUST use the correct blood sugar meter as some meters will detect the ico sugar and give a FALSE high blood sugar reading, leading to a possible insulin overdose if you are not aware of the possibility.  I have a wrist bracelet and a tag on a neck chain alone with a tag listing my allergies and short med history, just in case.

Ico is expensive.

My long dwell using Ico usually pulls off anywhere from 1/4 to 1/2 liter depending on my intake.

[myporkchop]

Thanks for your replies. They were going to discharge her from hospital today but i was really concerned as she looked pale, her sugar levels were really highand her blood pressure had dropped really low. Then they tested again before dinner and her sugar levels were the highest they have ever been. They want to keep to their new insulin regime to see how it goes, but it really isn't working for her at the moment. I wonder why they are not considering the ico for her. So stay in hospital is safer than sending her home like this.

[kickingandscreaming]

How (what) is she eating? As a diabetic, she can't just eat any ole thing and expect her blood sugar to be totally managed just with insulin.--especially with the added dextrose.  There have to be dietary changes as well.  It's better that she be closely monitored at this point.  I hope they can get a handle on her issues.

[Charlie B53]

When I first switched from manuals to using the Cycler at night, I was using 5 liters of 2 1/2 and 5 liters of 1 1/2 solutions.  I noticed a 30 point rise in my blood sugar over night from the solutions.  Not a lot but still enough that I had to adjust my nightly shot of Lantus a little.

Illness causes a great rise in blood sugar.  The body needs the sugar to fight off infection, this is a sign that Mum needs medical attention to determine what the illness is and treat it accordingly.

Food, carbs, Mum has to re-learn how to eat.  Portion control can be a difficult thing to learn after a lifetime of eating however much what we wanted.  We have to limit those carbs and learn how to fill ourselves with the other foods that have less impact on our blood sugar.   Re=learning how to eat healthier can be a difficult task as old habits die hard.

Testing blood sugar MUST be done very frequently.  WRITE it down every time.  So you can look and see how each meal affects Mum's sugar.  Also write down every shot of insulin.  You need to learn exactly how much insulin will change how much blood sugar.   This is very important.   Learning how to guage insulin to the food eaten is essential to better controling blood sugar.

This is not going to happen over night.  It takes time and effort.  Keeping a log of food, sugar readings and insulin use.   But soon you will begin to see patterns, then Mum will better understand how to begin making those small changes in diet and better control sugars.

Balancing her sugars will allow the PD to work better and begin to pull of even more excess water.    This can take a while but it will start working.

Have Faith.

[myporkchop]

Hi K&S, she was on a diabetic menu while in hospital, so they put the high blood sugar levels down to the dextrose and her body not being very happy with it.
Her waking blood sugars are looking a bit better but the rest of the day the are through the roof. They have sent her home now and to just follow their new regime and see how it goes.
The other thing she has since got a really sore shoulder. She may not have got rid of all the air bubbles when draining in. I'm not sure, but she can't explain it.

Hi Charlie, yes we will be writing and testing regularly now, just to keep an eye on her blood sugars and when it spikes etc. Just have to get through this bad patch and have faith that it will improve, but as you say maybe not over night or tomorrow but hopefully soon. Thank you

[kickingandscreaming]

The other thing she has since got a really sore shoulder. She may not have got rid of all the air bubbles when draining in. I'm not sure, but she can't explain it.

Sounds like she didn't fully flush the solution before filling.  That would explain the shoulder pain.  Takes a couple of days to resolve itself.  I did it once and that was enough not to do it again.

[myporkchop]

I bet you never did it again. Gosh it just sounds like agony. Day 3 still do sore

[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.

[PrimeTimer]

Hi K&S, she was on a diabetic menu while in hospital, so they put the high blood sugar levels down to the dextrose and her body not being very happy with it.
Her waking blood sugars are looking a bit better but the rest of the day the are through the roof. They have sent her home now and to just follow their new regime and see how it goes.
The other thing she has since got a really sore shoulder. She may not have got rid of all the air bubbles when draining in. I'm not sure, but she can't explain it.

Hi Charlie, yes we will be writing and testing regularly now, just to keep an eye on her blood sugars and when it spikes etc. Just have to get through this bad patch and have faith that it will improve, but as you say maybe not over night or tomorrow but hopefully soon. Thank you

Glad to hear your mother is out of the hospital! Always better at home! Sounds like you both have a good attitude towards what needs to be done. I agree, just focus on getting thru this latest "bad patch" as you put it. I am sure once she establishes a routine during the day, they will give her the green light to try it overnite. No doubt it is overwhelming and a lot to swallow right now. Every treatment tho is a success. Kudos for doing it! 

[Charlie B53]

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.   

[Fabkiwi06]

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.

They made me do manuals for a few months before switching me to the cycler. Like Charlie said, the combination of lack of new machines and building confidence in being able to treat yourself.

Also, for what it's worth... a huge reason I switched to PD immediately wasn't because of the scheduling, but because it would mean Medicare would kick in from the point of Kidney Failure instead of the 3 months after. Since I wasn't already on Medicare, it was a huge incentive for me to do that.

[Charlie B53]

I could easily be wrong, but I thought Medicare eligibility was immedate with the starting of any type of Dialysis.  Having an arterial cath and starting hemp could be the quickest start instead of either surgery for a fistula or PD cath and waiting for it to heal/develop before actually beginning treatment.

[myporkchop]

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

[myporkchop]

Glad to hear your mother is out of the hospital! Always better at home! Sounds like you both have a good attitude towards what needs to be done. I agree, just focus on getting thru this latest "bad patch" as you put it. I am sure once she establishes a routine during the day, they will give her the green light to try it overnite. No doubt it is overwhelming and a lot to swallow right now. Every treatment tho is a success. Kudos for doing it! 

Thank you PrimeTimer