I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: myporkchop on October 02, 2016, 02:54:51 AM
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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
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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.
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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.
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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
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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!
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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!
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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.
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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
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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
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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.
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I bet you never did it again. Gosh it just sounds like agony. Day 3 still do sore
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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.
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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! :cheer:
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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.
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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.
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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.
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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 :)
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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! :cheer:
Thank you PrimeTimer :)
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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
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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
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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!
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Thanku fabkiwi it is a giant learning process that's for sure. Im sure it will all sort itself out soon, well hopefully :) xx
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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 :(
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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.
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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!!
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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.
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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
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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
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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
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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.
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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
Hi K&S, thank you for thinking of us. We were very lucky there were just little ones, but fortunately we didn't get struck by the tsunami. It was pretty frightening tho, the 7.5 mag earthquake that woke us all up, followed by evacuation tsunami sirens from the beach. I drove over to make sure my mum was ok, got her dressed and slowly got her in the car. We drove inland to the airport and sat there for 4-5 hours this morning while waiting for the all clear to go back home. I wasn't sure how long it was going to take so packed x4 bags of dialysis fluid and the bits and bobs to do the exchanges into my car, just to be on the safe side. Fortunately where we are in Christchurch, we were not effected as bad as the 2011 EQ, however some other parts of Canterbury were badly effected.
Thank you for your kind thoughts xxx
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I hadn't realized where you are. Saw the news this morning has limited pictures of some of the damage, roadway broken, settled. Wow.
Very glad to hear you are all doing O.K.
Even the synthetic pain meds can be constipating for some people. Be aware. Try to avoid white flour and cheeses, both greatly contribute to constipation. Diets high in fruits and vegetables can help immensely to avoid constipation which makes PD very difficult to drain as the enlarged bowel tends to smother the cath and prevent efficient flow.
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Thanks charlie :) isn't it incredible how important it is to have clear bowels so not to smother the catheter. I hope you are feeling better yourself now? X
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I feel my normal irratated self. I will be dosing my bags nightly for almost two weeks yet just to be sure.
Dr told me at Clinic yesterday IF the bug comes back it requires only the upper part of the cath be changed out. Current thoughts are the bug hides in the threads of the titanium fitting connecting the upper and lower cath inside the body.
Even if that is so I would NOT have to have an arterial cath and do hemop for a short time. Simple replace the upper cath part and fitting, go home and do PD with smaller fills for the first week or so.
I can do that if needed, should be too big of a problem. Like I've said before. I must be Blessed. This ain't so bad.
I am very hopeful it begins to work this well for your Mother soon.
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Im glad you are getting back to your normal irritated self :) mum is back in hospital after she collapsed again this morning. At the moment no one really knows what is going on with her right now. They are treating her for a chest infection and still treating the urine infection. Tonight she started shivering and now has a fever. She is really worried for her health and so am i. I heard her say for the first time tonight "ihatedialysis" :(
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I'm really sorry your mom is having such a tough time, but it sounds like dialysis is the least of her problems. Clearly, her overall health is very fragile. And dialysis is an extra burden. I hope she (and her medical team)can get on top of it.
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Thanku k&s u are right, she just has a whole range of health complications adding to her dialysis. She feels like she has to blame something for her troubles and so blamed her dialysis. I just feel so sry for her right now. But i feel safer her being in hospital and so does she so that's a good thing x
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Hospital may be the perfect place for her right now. They will keep a close eye on her sugars. They sure did with mine. Home I average 120's to 140's. Hospital they kept me mid 90's to 120. And I ate most everything they gave me! This pretty much proves I done eat right at home.
Once they get her sugar down then PD will really begin to take off excess water from her system, easing her breathing, heart, reduce any swelling. Hopefully Mum will notice she begins to feel better.
Prayers she feels better quickly.
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Lots of good thoughts to you and your family now. It sounds like there's a lot going on with mom. I'm glad she's in a place that can respond to each issue with something that can help set it on the right track. :cuddle;
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Thanku for your lovely comments. The doctor came in to see her this morning and they said they are really worried about all of her health complications and don't think she will live very long. They then said she should consider going into a home or hospice type place to ease some of the burden on me and give her a better quality of life. I am absolutely devastatedi don't want her to go into a homr or hospice i want to look after her, but don't know how i would survive without pay
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Oh, I'm so sorry, MyPorkChop. No one ever wants to get news like that. It is wonderful that you are such a devoted daughter. Your mom has been very graced that way. But full-time caregiving is a huge stress and committment. And not always best for the patient, either. During a period when my husband was dying (Leukemia) I was a full-time caregiver. It is impossible to know--from the outside-- how difficult that is. Although it was an honor to be with him under those circumstances, it was also suffocating. And I gave up practically everything. After he died, I was pretty hollowed out. And my own health took a beating. It's so important to take good care of yourself as well.
Clearly, adjusting to the idea that your mom's time is limited is huge--scary and sad. Then having to make a decision about what role you will play in her care is also huge. Do you have such a thing as hospice-at-home in NZ? In the USA, people stay in their own home and are visited regularly by a team of helpers, and the family plays a supporting role. Is that possible? What about other friends and family? Is anyone else available to help out?
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Thank you K&S, I am sorry about your husband and what you had to go through. I understand completely.
I have been all over the place with my emotions. We were both in tears again today when talking with the social worker about options. I think deep down she want to stay at home but doesn't want to be a burden on any of us.
I told her I would be taking the next two weeks off work until we can work out what to do (for example, take the bath out of the bathroom and knock out the wall to the toilet, making more room for a wheelchair etc). She told me that she doesn't want me taking time off and would like me to try and carry on with my own life. It is hard as I want to look after her, but I understand the stress she feels. My dad lives with her and can help out, but I see him getting stressed at just the little things and yells at her to "just wait". Then if my mum gets upset he gets all upset and sulks leaving her on her own and storming out. That makes me really mad when he does that because I think he just needs to support more rather than take things personally. I try and tell him, when mum is irritated it may be because she is tired and not feeling very well, but he just cant seem to accept that and takes things personally it is so frustrating.
I have a brother who lives with them, he said he doesn't want my mum to go into a home and we will all try to look after her - he does nothing to help. He is never home.
I spoke to the social worker today and physiotherapist about what they can do to help us at home. The physio has given us a 'gutter frame' to help her more with walking and give her more stability when her legs get weak. She has also given us a wheelchair so we can take her out and about rather than being stuck at home which she has been doing (if not in hospital). I have home help coming once a week at the moment to help with the house work, although we are hoping for twice per week. We will also be getting caregivers to help with showering three times per week (which will be good).
We really have to work on this bathroom.
They talked about respite care in the event she wants a break from home or to give us a break. The doctor said today they will give us one more chance to look after her at home and if it doesn't work out then she will need to go into a hospital type home. Its so sad she is still so young.
They said there are only two retirement villages/hospital in Christchurch that have trained nurses in dialysis so they are the only options for her if she decides to go.
We don't really have any family or friends that would be willing to help out, it is usually just me on my own.
Thank you for your thoughts xx
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Many Parents are very well used to being independent. With a long history of taking care of US, they are unwilling to allow their children to care for them when they need it. Faced with bodily failures, it isn't easy for them to admit that they need the assistance of another person, and can become quite belligerent when their children only want to return the Love and Care they have received from that Parent. It can be difficult to convince them that this care is freely given out of Love.
Very often the Mother/Daughter bond is far greater than the Mother/Son relationship. Belize that your Brother may still care, he just doesn't know how. Dad may be terribly frustrated that this is a situation that he is powerless to correct as well. He doesn't know what to do either, and the inner turmoil drives him to withdraw. You may best take charge in a roundabout manner. If you TELL Bother and Dad what to do they may anger and refuse. You need to choose your words carefully, make suggestions, "If you could find away to help Mum by ....." May be more acceptable to them rather than telling them straight out to do something.
Patience is difficult, but it helps immensely.
I hope this helps.
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Hi charlie i think you are spot on. My family hate when i tell them what to do, i don't blame them. I know they both care of course they do. Thanku for your good advice i will take it on board that actually helps a lot xx
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I'm so sorry MyPorkChop that this has been such a difficult journey for your family. Sending all my love your way.
I think Charlie is spot on with everything (as usual). Situations like this don't come with a "how to" guide and each person deals with it their own way. Y'all have had wave after wave of new challenges with Mom that I'm sure you're all beyond frustrated with everything.
I hope in all of this you're able to carve out a little time to take care of YOU as well. Your own health and well being are also so important and part of caring for others is making sure you're caring for yourself.