New to all this and quite scared and clueless

[nataliemac]

Hubby Mark has been on in center i think you call it ( the hospital )  the hospital we go to has whats called a satellite dialysis unit that has space for 4 people for a cpl months now and we are still coming to terms with this condition. Hubby is deeply depressed and angry all of the time about ..........well everything im trying to remain upbeat and super positive and its getting harder and harder. The amount of bull crap from the specialist and then backpedaling from them does my head in one minute they put him on physiotens (for his high blood pressure ) and then the next they are putting him on something else and telling us that physiotens arent not good for dialysis patients?? scuse me? it was really hard to hold my tongue and not let them have it  Mark has had problems with his lines blocking up in his permacath in his neck and thank god they unblocked him as the most annoying this in all of this is the traveling!

We have to travel 130kms round trip each dialysis treatment he has 3 times a week for 4 hrs. If he needs any thing done we then have to travel a 3hr drive to a base hospital or a 4.5hr drive to the big hospitals in Melbourne depending on how bad things are with him.

We wanted to do home dialysis .......................Mark has to be stable for a while then we have to travel to Melbourne for 6 weeks intensive training and then have to travel to the base hospital for 3 months of monitored home dialysis and then if our house comes up to scratch ( our house is over 100 years old ) they will put in a home dialysis unitl as large as the one in the hospital i seriously envy all the really cute smaller home dialysis until you have in other countries It looks like home dialysis is going to be pretty much a dream for us.

We were told in Australia the wait time for a kidney is around 6 years ( is that good? ) unless you get a live kidney donor which we have no chance of getting due to me having diabetes his son being only 10 and all of his family either estranged or dead.

Mark has been having an episode of late when they lay him back to do his lines to the machine ( in his words ) he goes all flat and feels like he is going to die. They have to give him oxygen and a facewasher because he breaks out in a terrible sweat and gets really hot not sure what this is and they dont tell him anything. He is a man of very few words to pretty much everyone but me.

He has very low iron so they gave him a test dose and then a large dose and got a dr to stand there while they did it Mark asked why and they bluntly told him its in case he goes into cardiac arrest .......................WTG to scare someone to death.

At the present time im just dealing with mark being super angry about everything i try to ask whats wrong and he just says he is sick of it all. I wish he would see it as its saving his life rather than a negative it really brings me down some days.


Thanks for letting me get it off my chest im isolated up here and all my friends are a 6 hr drive away from me so its not easy to always get in contact with them.

Thanks so much for listening i really appreciate it

[MooseMom]

This all sounds really awful, but I can assure you that your story is not in the least bit unusual.

I am not a caregiver, but we have caregivers on this site who I'm sure can give you some good advice.

One thing I will say, though, is that you simply cannot stay "super positive" all of the time, 24/7.  It's dishonest AND impossible to do without exploding.  It takes far too much energy.

Anger is a very common emotion expressed by most people on dialysis.  Dialysis is hard in every single sense of the word.  ESRD destroys lives.  One month your husband was full of life and was working, and the next he is tethered to a machine.  Think about how horrible it must be to have your life hit by such a tectonic shift.

When you are the one tethered to a machine that makes you feel ill, it is very hard to view dialysis as a positive.  Maybe he could join IHD and express his anger to people who really do understand.  Would he join us, do you think?  It might take some pressure off of you.

I'm so glad you've joined this site!

[Deanne]

His and your experience sounds very stressful. I can't relate that well because I knew kidney failure was coming and was able to prepare for it. It wasn't such a shock for me as it is for your family.

Is PD (peritineal dialysis) an option? It's a home dialysis method that uses a solution through a tube in the belly instead of needles in the arm. I did PD for five months and then was fortunate enough to receive a transplant. It was much easier on my lifestyle than hemodialysis would have been. The surgery to insert the PD catheter wasn't much of an ordeal and I only had to go through a week of training. After everything was set up, I needed to go to the dialysis center twice a month - once for labwork and once to see my doctor. It's less restrictive on all accounts. I did dialysis while I slept at night and got up and had a relativel normal life during the day.

[Poppylicious]

I was going to ask if peritoneal dialysis was an option, but Deanne beat me to it!

 

I feel your pain, completely. It is so frustrating to watch the man you love change from being the person he was, to being the person who now only lives thanks to a machine, especially when it happens so unexpectedly. I felt helpless. I had no idea what to say, or what Blokey wanted me to say.  I didn't know how to console him, or how to share his pain.  To be truthful, I still don't.  But I did learn to stop asking what was wrong (as that is pretty evident!) and instead tried to concentrate on the positives. When he said something negative I countered it with something positive. This was really hard for me because I'm not a naturally optimistic soul. I also gave him lots of *huggles* and I 'let' him be angry.

It's okay for you to be angry and stomp your feet a little too.  Yes, his life has changed, but so has yours.  I got to the stage where I just used to be angry back if he said something that upset me.  It was important to me that he understood this wasn't just affecting him, it was affecting us, as a couple and everything we did and could do.

Feel free to come and vent if you need to; we're not here to pass judgement.

*huggles*

[nataliemac]

Thanks everyone for letting me vent most of the time im so bloody scared i dont know what to feel i get distressed each time mark gets angry and when Mark sleeps i try to keep cody amused and quiet so Mark can get the rest he needs. I am getting angrier and angrier and im no longer letting mark be rude to me. each time he is i say to him now ...............right now say something nice about me.........lol and he does he knows he is being a shit i guess he just cant seem to stop himself. Some days i feel like  every time he even looks at me.

I felt like if i stomped my feet and said it wasnt fair that people would say that i was an ungrateful wife Im so glad i can let it all hang out here and just be myself and say it how i see it which i will admit might not always be selfless and nice


Honestly im terrified of peritoneal dialysis I had a co worker years ago who was on it i swear that lady never stopped she used to get me to heat her solution up in the microwave for her she said if it went it cold it was yuck. We became great friends and sadly Rhoda passed away i was devastated. i think she had diabetes as well she lost 1 leg and then when they went to take the second she passed......

Mark keeps having hypertensive episodes they are calling them each time he has dialysis and they lay him down today they had the emergency drs and nurses having to attend to him. it scared the hell out of him and terrified me. they said they think its because they are trying to take fluid off at the start and on monday they are going to wait and take it off later on rather than at the start. Im not even sure that it would make a difference? it gets to the point each time they lay him down now he gets worried i can see it on his face. he is a man of a few words to others so he says nothing but he tells me it scares him. Mark is the kinda bloke that wishes all this was happening to someone else and doesnt want to know about it and doesnt want to deal with it and wishes it would just all go away. Its hard for him so i take the slack and do his talking for him for now.


We had to apply for the disability pension ........................ we get it. probably wont but the dr told us to apply and did the paperwork. it will be approx 6 years IF mark is eligible for a transplant to have one as a live donor option is not available to us and as i said to the centrelink worker mark has 3 options he either gets a transplant in approx 6 years or he stays on dialysis and hopes for the best or he dies there is no in between its very clear there is nothing more they can do for him apart from that. im now wondering it i was too blunt? he was speechless after that. It is clear he can no longer be a farmer i think he will mourn that for quite a while to come. as it is when he isnt sleeping which is most of the time he is at his work ..........not doing anything he just sits there and chats to the boss or the boss wife or even no one just sits there and looks until he starts feeling tired then he comes home and goes to bed. I let him its new to him i dont feel i have the right yet to say hey what about me and cody. but that time will come soon enough i think.




boy look at me rabbit on sorry for the volume again its just nice to let it hang out


XXXX Natalie

[cariad]

Thanks everyone for letting me vent most of the time im so bloody scared i dont know what to feel i get distressed each time mark gets angry and when Mark sleeps i try to keep cody amused and quiet so Mark can get the rest he needs. I am getting angrier and angrier and im no longer letting mark be rude to me. each time he is i say to him now ...............right now say something nice about me.........lol and he does he knows he is being a shit i guess he just cant seem to stop himself. Some days i feel like  every time he even looks at me.

I want to offer a few suggestions, please feel perfectly free to discard anything you don't find helpful. I went into renal failure as a child, and was just about the angriest patient you could have ever met. I think what would have helped me was to have someone acknowledge my anger and empathize with it. Something along the lines of "This is so unfair and I'd be ticked off, too. In fact, I'm angry on your behalf!" would have done me a world of good. Of course, taking his anger out on you is not acceptable so I am glad you are drawing that line with your husband.

Honestly im terrified of peritoneal dialysis I had a co worker years ago who was on it i swear that lady never stopped she used to get me to heat her solution up in the microwave for her she said if it went it cold it was yuck. We became great friends and sadly Rhoda passed away i was devastated. i think she had diabetes as well she lost 1 leg and then when they went to take the second she passed......

I can definitely understand why PD would terrify you. Was it complications from the PD that led to Rhonda's passing, or other complications from diabetes and kidney failure? PD can have some terrifying side effects so it becomes a matter of weighing risks and benefits for your personal situation. Perhaps it could work as a bridge to home hemo? Most people on here who have done PD seem to absolutely love it, as much as one can love dialysis.

Mark keeps having hypertensive episodes they are calling them each time he has dialysis and they lay him down today they had the emergency drs and nurses having to attend to him. it scared the hell out of him and terrified me. they said they think its because they are trying to take fluid off at the start and on monday they are going to wait and take it off later on rather than at the start. Im not even sure that it would make a difference? it gets to the point each time they lay him down now he gets worried i can see it on his face. he is a man of a few words to others so he says nothing but he tells me it scares him. Mark is the kinda bloke that wishes all this was happening to someone else and doesnt want to know about it and doesnt want to deal with it and wishes it would just all go away. Its hard for him so i take the slack and do his talking for him for now.

This is serious and needs an answer. I hope the slightly different method works, but if it doesn't I would continue to badger medical staff for answers. As I'm sure you know, blood pressure that is too high or too low can do all sorts of damage.

We had to apply for the disability pension ........................ we get it. probably wont but the dr told us to apply and did the paperwork. it will be approx 6 years IF mark is eligible for a transplant to have one as a live donor option is not available to us and as i said to the centrelink worker mark has 3 options he either gets a transplant in approx 6 years or he stays on dialysis and hopes for the best or he dies there is no in between its very clear there is nothing more they can do for him apart from that. im now wondering it i was too blunt? he was speechless after that. It is clear he can no longer be a farmer i think he will mourn that for quite a while to come. as it is when he isnt sleeping which is most of the time he is at his work ..........not doing anything he just sits there and chats to the boss or the boss wife or even no one just sits there and looks until he starts feeling tired then he comes home and goes to bed. I let him its new to him i dont feel i have the right yet to say hey what about me and cody. but that time will come soon enough i think.

What helped me get through kidney failure was having a goal to work toward. It sounds like in the short term, that goal is home hemo dialysis, long term goal is transplant. Those are both going to require some effort from Mark and you, and perhaps it will be good for you to have something positive to put your energies toward. I wouldn't completely give up on him being a farmer, though. There are people on dialysis with very physically demanding jobs and I think that could potentially be another goal he could work toward - return to farming despite dialysis. If it is something that is that crucial to his happiness, I really believe that he needs to find the energy to fight for it. You both need something enjoyable to concentrate on so that your lives are not overtaken by kidney disease. If you think he would like inspirational stories, there are many on here and out in the world. Google 'Shad Ireland' or read about IHD member Bill Peckham's many travel adventures on dialysis. I think being positive is so important, but I also know from my own experience that having someone stand over you ordering you to be positive in the face of painful illness is counterproductive. He has to want to make a plan and want to execute it or it's all a non-starter.

This sounds like such a confusing time for both of you. I hope that you are able to find some sort of emotional and physical stability for Mark (and you!) soon.

[nataliemac]

hey just thought i would check in and say hey

The nurses say that the hypertensive episodes are from them trying to take off fluid too quickly at the start of dialysis so they are taking it off towards the end now .....i guess that helps.

Mark is so much better now i have put my foot down. He will still get the shits on but im quick to pull him up and now its no longer at me  

we are now just waiting for the fistula surgery at the start of next month. and then the second op not sure how much later to bring the fistula to the surface so it can mature.

[Wattle]

Hi Nat, there are a few of us here from Australia. 

Where do you live? If you come under the Northern Health umbrella, the Royal Melbourne, you will be in wonderful hands. I am in Melbourne and was on peritoneal dialysis  for over 4 years. I can really recommend  giving it a try. It may also be a way for your husband to continue doing a little farming as well!
Dialysis is a huge adjustment to make for everyone involved, patient and caregiver. Don't hold back in asking any questions! We have all been in the same situation.
Drugs are changed around all the time as a Renal patient so you will get use to that. BP can be hard to manage and all bp meds work differently for different people. Physiotens  didn't work for me either. Try to have trust in your specialist that they are doing their best by your husband. If you don't feel comfortable with any of the treatment, speak up and question everything! Being informed and educated on all the options was my saviour. It takes away the fear and misunderstanding of treatment and drug changes. Follow the dietary restrictions and try to do everything by the book.
Things will get better. Try to stay strong and hang in there   

[Simon Dog]

Home dialysis is a worthwhile goal.

See if they will train him on self canulation while he is an in-center patient.   This will speed up the home hemo training when that time comes.

[nataliemac]

  wattle im from Warracknabeal which is up near Horsham we see proff Richmond in Ballarat.

Im a bit scared about all the home dialysis it is a goal or ours but as mark is very new to dialysis and when i asked about a home unit. There are so many things we have to have im just really worried they will reject the choice as our house is over 100 years old we do have a spare room though which could be set up for dialysis.

I try to do something nice every cpl weeks for marks dialysis mates so today i baked melting moments which will go along with him in the morning. so far they love the muffins i make so i must be doin something right

i think the hardest thing im trying to get my head around is the whole no salt no this no that etc and yet each time i have attended dialysis with Mark they say you can have gravy but dont have lots and have it the night before dialysis and you can have things like silverside which is pickled in a salt brine!!!  I just dont get it we try to work on no salt but with things he feels he cant give up like his butter i try to find the best option thank god western star came out with a 50% less salt and he loves it. he went from a bit of food with his salt to no salt and im so proud of him for the effort. 

mark continues to lose weight he is 6'3 and weighs 100kgs its a bit over though still. his skin continues to loosen and get a bit dry he has developed dry patches which we will attack with moisturizer. He has a lot of gas lately not sure if its the food or what but boy oh boy lol.

His skin is always cold now and with winter coming on im really worried ive suggested thermals but even with cold skin he sometimes gets terrible night sweats ( which he has always had ) so far im glad we have the electric blanket on the bed so i pre warm the bed for him and he says he is toasty warm but his skin is really cold. will it always be so cold?

[obsidianom]

Our house is small and not in great shape but we do home hemo here. I know Australia is big on home hemo unlike the US so you should be able to do it. You will find it is so much more comfortable at home and more time on machine will help him. Many of us here do it and would never go back. If you need help just ask. 

[nataliemac]

Not sure whats going on but not just mark but a few of the other 4 he is on dialysis with keep going flat. ( blood pressure dropping out ) he has been on the phone to me a lot this morning he is terrified it will happen to him again and he gets pretty worked up about it.

[obsidianom]

Perhaps tghey are taking too much fluid tool fast especiallyafter weekend with 2 days off.  We call it Monday syndrome here.

[nataliemac]

ahhhh i see lol

things have been going as well as can be expected lately we are still waiting for his first op to be done first week in june then we can say goodbye to the neck permacath.

It really has been a mood killer and not just with me he is so worried about it being tugged etc he wont let me cuddle him even though he is cold ( derrrrrrrrr ) in case i might knock it. i think i would be the same really if it was me. Our son Cody is coming to terms that dad cant play like he used to and he has to be careful. Cody usually manages to get in a 20 minute banter and then mark needs to go and have a rest. Cody used to get upset and not understand but he gets it now i think i found a way to explain it that he got.

i keep making goodies for the dialysis group melting moments, jelly slice etc to bring them a smile and mark is getting along really well with another bloke who is on his days so that gives me hope that he will come out of his funk and get on with the business of striving towards a transplant.  My friend Angela got her transplant from her son the other day  she is doing really well so i pass the good news on and it helps him see that a transplant does not mean he will die.

thanks for listening

[nataliemac]

Some good news that has lifted some stress from us and thats mark got accepted for the disability pension 

another question is mark lately has been getting up feeling fine and then all of a sudden he is hit with intense nausea and vomiting he is left very cold and drained but then feels all right a cpl hrs later. I dont even know what to think this has happened a few times now i think it might be time to say something to the nurses and see what they think??

[PrimeTimer]

My husband has been doing home hemo with the NxStage Cycler for only 6 months. Early on he had mornings of nausea and vomiting too. Seems to have gone away now so maybe it was just something his body had to adjust to. He's getting good lab results and feeling tons better, has way more energy than he did before he started dialysis. Most days he loses his appetite and will go all day without eating, until just after we're done doing his treatment and by then, he's starving and goes on a feeding frenzy. SO...I've been reminding him about the importance of eating lunch and taking his BP meds well before treatment time. It was hard at first, he rejected the idea of eating with no appetite so I really had to be stern with him but little by little, I have him back into the habit of eating lunch now and he feels better and I don't always have to get on him about it. As for being cold, yes, he's cold -especially during treatment. We use the Pureflow machine for the dialysate and it has it's own heater but sometimes he still gets the shivers. So I heat up rice bags in the microwave, I put one behind his neck, the other alongside his access arm (but not anywhere near his needles) to help with any pain from "blood stealing", keep a blanket on him and I put an oven mitt on his hand that is on the same side as his access (he has an upper left bicep arteriovenous fistula). His hand sometimes gets cold and stiff, so the oven mitt warms it and is easier to put on/take off than a mitten or glove with fingers. The oven mitt is also big enough to tuck a mini rice bag into it to heat his hand. I swear, he gets pampered as if he's at a spa! But that's okay, I just want to make sure he's as comfortable as possible during treatments because that makes my job easier since I'm the one who runs the machine and takes his vitals, etc...Anyway, might take some convincing but hopefully you can reassure your husband that he will feel better and that by speaking up, he can find out how to deal with things as they come up and learn what to expect and what to do about it, whether it's pain, feeling sick or having anxiety, these things can get worse if they aren't talked about. And he's got a great advocate in you! You make a great team! So as a team, be sure to let his nurse know what ails him. 

[obsidianom]

Some good news that has lifted some stress from us and thats mark got accepted for the disability pension 

another question is mark lately has been getting up feeling fine and then all of a sudden he is hit with intense nausea and vomiting he is left very cold and drained but then feels all right a cpl hrs later. I dont even know what to think this has happened a few times now i think it might be time to say something to the nurses and see what they think??

How are his numbers ? Is he getting adaquate dialysis? How many days per week and for how long is he on the machine? How much fluid is removed? The days that he is feeling bad, are they between treatments?

[nataliemac]

thanks primetimer it helps to know Mark has his treatments in the hospital and usually a sheepskin on the seat and a blanket over them is enough so maybe they have heated thingies? Mark can go days where he just isnt that hungry and i just let him go they put his dry weight up to 102kg ( he is 6'3) he has been really good since then.

obsidianom his numbers are really good and the most they ever had to take off him and that was after a weekend was 3. usually its just 1. He has dialysis 3 times a week for 4 hrs ( monday wed and fri ) he is tried every day although his hemoglobin is fine according to the tests. the vomiting can come on any given day sometimes on dialysis day sometimes on the off day but so far always in the morning

[PrimeTimer]

 

thanks primetimer it helps to know Mark has his treatments in the hospital and usually a sheepskin on the seat and a blanket over them is enough so maybe they have heated thingies? Mark can go days where he just isnt that hungry and i just let him go they put his dry weight up to 102kg ( he is 6'3) he has been really good since then.

obsidianom his numbers are really good and the most they ever had to take off him and that was after a weekend was 3. usually its just 1. He has dialysis 3 times a week for 4 hrs ( monday wed and fri ) he is tried every day although his hemoglobin is fine according to the tests. the vomiting can come on any given day sometimes on dialysis day sometimes on the off day but so far always in the morning

I think between the dialysate and their blood being outside their body while it goes thru the machine makes a patient get the shivers. I know if I had a cup full of my blood go outside my body for a while I'd probably get the shivers, too! My husband usually doesn't get cold until we are almost done with treatment but I still put all the warm stuff on him ahead of time. Interesting...my husband's dry weight is also about 101-102kg but he's only 6'. We usually take 1 to 1.5kg off of him 5 nights a week using the NxStage Cycler. Oh, another idea! Sometimes when his mouth is too dry he chokes up and then that triggers the dry heaves. We've learned to keep his mouth moist by using a mouth spray, sucking on ice cubes or frozen grapes (about no more than 14 a day because he's diabetic). So sometimes he is not nauseated but vomits because the heaves start from his mouth being too dry. Hope your husband's team (the staff) at the hospital continues helping him feel better during his sessions. Oh, it is so stressful in the beginning...

By the way, Obsidianom is great with numbers, I'm too new at it and still learning but Dr. O has helped a lot of people on this site. 

One more thing: you might have to change the title of your topic, you're no longer clueless! LOL   

[nataliemac]

Lol most of  the time i am clueless and one day i will remember everything just fine and then.......................bam i get hit by K.R.A.F.T and then i just looks stupid again .

Mark has his first part of his fistula done today                 its crazy that i have to put my hand just above the cut and check to make sure its "buzzing". Mark let slip today that his phosphorus level is up a bit ................not sure how much up but up he doesnt eat potato as such anymore and takes the caltrate most of the time he does forget maybe like 3 times a month all up but no great gaps so i think we will have to work on getting them back down.
After the surgery today he is so thirsty its really hard to say no stop drinking so i gave him ice chips instead.

Things have been going ok for him other than that i hope this finds everyone else well too xxxxx

[obsidianom]

I think he might benefit from home hemo where he could get more hours on the machine and go slower. 12 hours per week is not a lot of time . 10% ot total time is best . (Thats from your own Dr Agar in Australia). So at 10% it would be 17 hours per week. That is what i give my wife. At home you can do this. His phosphorus would be lower and there wouldnt be a 2 day off period that he has now. That is very stressful to the body.  He would probably feel a whole lot better on more hours. My wife sure has.

[Bambino_Bear]

 

[nataliemac]

Well things have been humming along here so to speak his fistula is going to be brought to the surface at the end of this month ( seems like its taken forever ) i dont even need to touch his arm through his clothes it hums that much i can feel it above his clothing its like the hum from electric powerlines after a storm. We are also onto round 2 of the transplant which involves a trip to the royal hospital in Melb to meet the transplant team oh god i hope he behaves himself. he gets very impatient .............cant find a park he gets angry......wait too long he gets angry ughhh i wish they would listen to me and just give him some frikken happy pills! he comes home each time from dialysis upset and emotional i know now to leave him for about half an hr to pull his head in and then things are better. he laughs more now that he ever has i guess he is starting to appreciate even being alive. he now likes to cook and he helps around the house too his rational is he has seen everything on foxtel so he gets bored lol i dont care what the reason is i love the help.

We lost our beloved ice ( dog ) who my hubby has had for 12 years it took 3 days to build the coffin ( all our pets get their own wooden hand made coffin ) and dig the hole ............1 busted water main later ice is now comfortably resting next to buddah our red staffy and my washing machine died as well................yeah it rains doesnt it. Still im thankful for what i have and thank each day that i have mark hope this finds everyone else well as well

[amanda100wilson]

My husband ( not the one on dialysis) is impatient about anything that entails waiting; everything has to be done yesterday so I get you.

[nataliemac]

All went well yesterday for Marks fistula being moved to the surface  Now just to let it settle and scar up for 4-6 weeks and it will be good to go also not sure if ive mentioned it but we are off for round 2 of the transplant ride down to melbourne on the 12th so wonder what the step is after that?