please help me im scared

[KidneyThief]

Hey GLM,

I'm sort of new here but have been catching up on some of the threads. You and I are around the same age and seem to have experienced some similar problems. I was laughing about the part where the nurse told you to stop eating Thai food. Did she tell you to eat white bread slathered with Splenda and 'whipped topping' instead? Maybe with a side of 'gelatinous dessert'? As long as you don't eat Thai dishes that have very much coconut in them (like panang curry or tom kai soup..also avoid massaman if potassium is an issue as it has lots of potatoes), it's a fairly healthy type of cuisine overall to treat yourself to. Spicy chiles are good for ya. Keeps parasites away. Rice is low in phosphorus and most Thai dishes are served over rice or with a side. You can usually get a dish with whatever your meat preference and could always ask to leave out high potassium veggies. So, I'm not sure what that person was talking about or if they even had any concept. Gawd, I wish every dietician at the d-clinics were required to follow the dialysis diet for a month so they could even remotely empathize.

But seriously, you have to be really careful what you say around clinic staff. I have to remind myself that even though my treatment at home is in my hands, they still have control over the crux of it all. You could say one little thing they dislike and even if its meant completely as a joke, it can have an impact on your transplant status. Sometimes I find it hard to believe how many unintelligent people have been in control of my survival and it just reminds me to grit my teeth, bare it and try to think of it as a temporary annoyance. All you can do is rise above them...or file grievances until something happens. xD

PS- Have you started home hemo? Why did PD not work out for you, if you don't mind my asking?

[gothiclovemonkey]

  picturing u locked away with mounds of watermelon going to town!

PD and my body didnt like each other... i guess my body rejects the plastic? got baaad infection both times (they said its likely the cath and my skin just did not want it there.... im like that with tape too, among other things)

nope, they keep telling me im next, but that was how long ago now???
they dont give two shits about me. which im about to express in another post. *not too happy* lol

[Gerald Lively]

If your dialysis center is oppressive, you are in the wrong place.
I had a dialysis nurse who farted, how bad can your treatment be?

[gothiclovemonkey]

well, the wont allow me to even train for home hemo, saying im not mentally stable... which is BS. The only say that because around the time I last posted on here, I wrote a note to the head nurse, saying that I really want to be a better dialysis patient, and I need help to figure out whats wrong with my body, so I can stay my full treatments, as a good patient would......... I ended with "Please, help me. I cant live like this." SOOoooo they took that as a suicidal letter..... (really?! i mean, i guess I can see how that last sentence does sound SOMEWHAT like that, but as a whole, asking for help to be better? how is that suicidal?!?)

Anywho, since then, its been a losing battle. And im so sick of my dr laughing at me when I make suggestions.

Gerald, I had a nurses nose run all over my arm when she was sticking me once.

[Gerald Lively]

Rules for coping:
1.  It's your body.
2.  Never beg.
3.  For policy questions see the doctor, not the nurse.
4.  Gather all the information you can find on your condition to prepare yourself for the Doctor.
5.  Be intelligent about it.  No attempts at sympathy, it won't work.
6.  Hang in there for you are a child of the universe and you have every right to be here.
7.  If you cannot find compassion, find me.
8.  Then you can wash the dishes and mow my lawn.  Remember this, your entire body was originally built to be a hedonistic searcher.  Consider your dialysis an intrusion.
9.  Take my advice as a suggestion, I am not a doctor.  I only pretend to be one.

[Simon Dog]

well, the wont allow me to even train for home hemo, saying im not mentally stable...

One patient I met at the local clinic is now a successful home hemo patient.    He told he the neph at his previous clinic was excellent, however, she considered him "unsuitable" for home hemo and told him he could transfer to a clinic that would allow that, assuming he could find one.  He did.   Vanessa Evans (a NxStage hired evangalist) states that the biggest requirement for home hemo is "the want".   You seem to meet that requirement, so start looking.

You might see if your MD will let you train for self canulation, and re-evaluate your suitability once you have mastered this skill.

One needs to be able master self canulation, and understand a few basic things to be successful at home hemo.   I don't think "mental stability" is on the checklist of requirements     You could contact some other clinics and set up an interview with the home care RN (not sure an MD would spend time with you without a billable visit).

I told the people at my clinic I am planning on discontinuing dialysis, and they seemed somewhat concerned until I told them "at age 85, if I make it that far".

This worry about D patients becoming suicidal is ridiculous, since we all have the option of discontinuing, and no one can legally stop us.   At that point, the MD's job becomes assisting the patient with a peaceful death within the limits of state law, not trying to stop a suicide.

[Michael Murphy]

This suicidal excuse is bs. If they truly thought you were suicidal they would be required to notify your doctor and he would have to refer you for a psych consult.  So they are either full of it, or completely incompetent.  As SimonDog has pointed out every dialysis patient can just stop treatment, so for some reason these quacks don't want you to do home hemo.  Go elsewhere.

[smartcookie]

I agree. I have read your posts and do not think you are mentally unstable. If the social worker thought you were suicidal, he/she definitely did not respond correctly. You should meet one on one with the patient and evaluate suicide risk. Some clinics will say that patients are not eligible for home hemo due to noncompliance with in center hemo, but I don't agree with that. If the patient is noncompliant, the center should look for alternative treatment options to help the patient become more compliant.  GLM, I am so sorry you are going through this!

[Simon Dog]

Some clinics will say that patients are not eligible for home hemo due to noncompliance with in center hemo, but I don't agree with that. If the patient is noncompliant, the center should look for alternative treatment options to help the patient become more compliant.

My home care RN told me one of her compliant home care patients was a non-compliant in-center patient.

[smartcookie]

Exactly, Simon Dog! I have a fairly new patient who was not compliant with peritoneal dialysis and great with in center hemo.  It depends on the patient and it is the dialysis facility's job to get the patient the best treatment possible. If the patient is noncompliant or unhappy, a different mode of dialysis needs to be tried.

[gothiclovemonkey]

well the problem now is i dont have anyone who can be my partner. they wont allow me to do it alone...
but at the time, i did have someone...
im looking into finding someone, when i do, then ill absoultely revisit the idea!

I may be crazy but im not suicidal. if i was, why the hell would i go to dialysis?! lol

[Michael Murphy]

There are some places that do not require a partner, in Saratoga Springs there is a place that does not.  This is on the edge of the Adirondacks and some patients I have met travel 90 miles each way for in center treatment.  The center in Saratoga Springs requires a Internet connection so you can be remotely monitored and I think the local rescue squad needs to be able to access your abode in case the center detects a emergency.

[gothiclovemonkey]

unfortunately, here, they require it, or you cant do it.

[Simon Dog]

The center in Saratoga Springs requires a Internet connection so you can be remotely monitored and I think the local rescue squad needs to be able to access your abode in case the center detects a emergency.

I think NY State requires remote monitoring as a condition for home dialysis, which forces the home support teams to offer the structure that will support solo.   I did hear talk of on patient who listed his dog as a care partner.

[Michael Murphy]

It's a upstate New York problem.  I have a house in the Adirondacks and the nearest dialysis center is about 30 miles each way.  And I am a close patient one of the people I met comes 90 miles each way.  Because of the distance and cost, a patient requiring transport is over a thousand dollars for each treatment.  I understand that besides remote monitoring the local rescue squad needs access to your home,  if anything goes wrong the center shuts the machine down and dispatches the rescue squad to go to your home,  it seems to work ok.  I plan to move up to the dacks come spring and what scares me is a 30 mile trip in a blizzard.

[Michael Murphy]

Lucky, you don't get to choose.

[Simon Dog]

Lucky, you don't get to choose.

Pity I don't get to choose. Why let people who can't even follow a diet care for themselves. They will make a p*ck out of it. Then it'll be everybody's fault but their own

Obesity is much more complicated than just "not following a diet" or "lack of self discipline".

A really big man in dialsyis (probably the biggest in my clinic - 160kg) transitioned to home and from what I hear, he is doing well.  He has the assistance of an RN wife to make sure the procedures are followed.  And this is an individual who is so large he is delivered to his monthly neph appointment by ambulance on a stretcher.

[Michael Murphy]

Just out of curiosity why shouldn't fat people. Be allowed  to do home dialysis. For the record many do very successfully.  Life is tough enough without judgemental people trying to decide rules for every one. 

[Simon Dog]

Some people can rise to the occasion.   Home Hemo training included doing treatments while an RN is watching, then a treatment or two at home with the RN watching as well.   It is possible to flunk home hemo training, but it's not exactly brain surgery.    I've met some fat surgeons, and they are successfully responsible for other people's health.   Fat does not mean stupid.

And, not all pog's (people of girth) are that way because of diet.   Metabolism differences can make it impossible for some people to lose it - a fact easily lost on those who deal with minor mass problems that respond to diet.    That's why there is an entire industry centered around bariatric surgery.

Remember, there are risks and benefits to home or in-center.    The fact that home patients tend to live longer happier lives tends to get lost in the discussion.   I've gone from my MD having a talk about that phos level than starts with a 7 to having my binders discontinued because of home hemo.

[gothiclovemonkey]

i am no longer married. my ex husband moved in feb... havent seen him since. he lives in another state lol

also, I am obese. I've lost 100 lbs without help. im still losing. i follow the diet, for the most part, otherwise id be a heck of lot thinner. id be happy eating nothing but raw veggies, if i could lol I may be fat as all get out, but considering, i am relatively active. I go to the ymca for water aerobics 3 days a week, for 2 hours. and sometimes more than once a day, if i can find the time. (and looking into buying a treadmill so I can walk while i relax at home)
Not all obese folk are unheathy and cant follow a diet. I got fat that way, sure, i ate a TON of food in one sitting, i used food as a coping mechinism (now i chew gum a lot lol) and i never really did anything exercise-wise. not a good combo, but NOW, i am doing the right things, yet im still rather huge... does that make me any less worthy of the choice? i get my fat ass up and go to treatment, even when that place is horrible. i KNOW id do much better on home d.
Just because someone looks glutonus doesnt mean they are. they may be trying to better themselves. if i didnt have the RA issues, i think id probably be much smaller by now, but it does hold me back a little, unforteunately.

[Michael Murphy]

The reason must people come hear is to express the fears and concerns the kidney problems they face, who belongs on home hemorrhage is a matter best left to the people who are responsible for the training and vetting patients, some ones weight or current problems is  a matter for the team at the center that is providing evaluation and training.  It isn't helpful to pick your favorite problems and decide that some one should not get a treatment.  That type of pronouncement discourages people from asking for help and support.  Personally prior to dialysis I was about 160 kilos sine then I am down to 130 kilos and hope to continue.  I am absolutely compliant , blood work always perfect, never missed a treatment, never even been late and never put on more then the allowed fluid. But your opinion is I would be a poor candidate based on your personal bias of people with weight.  Some how I don't think the evaluators at my center agree with you. Since I have been offered home hemorrhage several times.

[Michael Murphy]

In my center we had a individual who constantly consumed too much fluid and his lab work was all over the map.  He successfully transitioned to home hero and because he does dialysis more often, 5 or 6 days a week in the evening he has no problem with fluids, and his lab work is always ok,  some people do better on home hemp, some don't.  It's impossible to decide who will be good on home hemp and the results are always surprising .  Nitpicking some ones problems does not provide support for the person it just adds to the load they are already carrying.  Professionals are the ones who need to provide the yea or nay on home hem not interested by standees.  My feeling is everyone who wants to do home hemo should be in outraged to try, not to be put down.  If she's selected and passes training the results could make her life easier.  I am glad you have a weeks holiday, I am retired and my whole life is now a holiday.

[gothiclovemonkey]

I'm 122kg Michael. I don't think hemorrhaging at home would be a good idea, the blood loss would likely kill you.
Also I was not referring to you, gothicmonkey has started in many posts she can't eat healthy as it's too expensive, which is bullshit and laziness for not prepping her own food, she talks about enjoying takeaways which basically are a no-no for us patients who care about our health. Also she's up 8kg or so between treatments and talked about sometimes missing sessions, disrupts other patiensts (her words) and has panic attacks on dialysis so you really cannot compare your situation to hers, but if you have nothing to do but argue with me then that's fine I'm on a weeks holidays from work and have plenty of time.

I think that you have misunderstood me. which happens often, i notice.... I actually DO eat healthy. I prefer raw produce over pretty well any other thing there is to eat. But thats not exactly "dialysis healthy" I dont really care for most meats, chicken is my go to, grilled. Also, make most things from scratch. It really IS too expensive, I was bitching about it because i think its ridiculous how expensive most things can be. Especially produce, and meats...
Yes, I do treat myself to take out ONCE a month, IF my labs are good. A sort of reward for doing well.
IN THE PAST I was non-compliant. ive been on dialysis 8.5 years, the first two years I WAS a horrible patient, but since then I have been good. I dont miss sessions...and if for some reason i have some reason i cant make a treatment, i reschedule for the following day.  sometimes they make me come off the machine because they say i am disrupting patients, because when i get the full body cramps, I tend to be rather vocal and cry because it is very painful. They arent dialysis cramps, as it also happens at home. they have yet to find why this happens.
Also, ive never stated ive had 8k on between treatments. typically its 1-3k over what they have my DW set as....the only time ive ever had that much on was because THE CLINIC refuses to listen to me. When I come in with 1k on because I am actively losing weight, they refuse to change my dry weight, When I cramp they want to pump me full of fluid, even though Ive told them several times that does not help these cramps.
Sorry you seem to have misunderstood me. The reason I want to do home hemo is because this clinic is a peice of crap.

Two years ago, from october to dec, I told them repeatedly that I had more fluid on than they are taking off. They didnt believe me, told me i was crazy, it was panic attacks IT WASNT and I spent 2 weeks in the hospital in dec because I WAS RIGHT they took off over 20 lbs of fluid TWENTY lbs lower than what they had my dw as!!!
And now, two years later, the same damn thing is happening and again they arent trusting me that I know my own body and can feel the fluid.






Edited: Fixed quote tag error-kitkatz,Admin

[PrimeTimer]

i am no longer married. my ex husband moved in feb... havent seen him since. he lives in another state lol

also, I am obese. I've lost 100 lbs without help. im still losing. i follow the diet, for the most part, otherwise id be a heck of lot thinner. id be happy eating nothing but raw veggies, if i could lol I may be fat as all get out, but considering, i am relatively active. I go to the ymca for water aerobics 3 days a week, for 2 hours. and sometimes more than once a day, if i can find the time. (and looking into buying a treadmill so I can walk while i relax at home)
Not all obese folk are unheathy and cant follow a diet. I got fat that way, sure, i ate a TON of food in one sitting, i used food as a coping mechinism (now i chew gum a lot lol) and i never really did anything exercise-wise. not a good combo, but NOW, i am doing the right things, yet im still rather huge... does that make me any less worthy of the choice? i get my fat ass up and go to treatment, even when that place is horrible. i KNOW id do much better on home d.
Just because someone looks glutonus doesnt mean they are. they may be trying to better themselves. if i didnt have the RA issues, i think id probably be much smaller by now, but it does hold me back a little, unforteunately.[/color]

I'm impressed with how physically active you are and your attitude but also by the fact that you are an active participant in your own health care. You obviously have willpower and that's bonus! Personally, I think we'd all prefer to be healthy AND slim but I remember reading once that the important thing is that a person is physically able to do the things they want/need to do despite their size. Staying as mobile as you can, up on your feet and moving around I think helps the body AND the mind. You seem to be doing good, hope it continues to get better for you and that easier days lay ahead. Lord knows, we all deserve easier days! 

I meant to add that I have Fibromyalgia and recently went back to being on an anti-depressant (serotonin). I not only need it to help with depression but for PAIN (and who wouldn't be depressed when they are living with chronic pain?). The more pain I have, the less I feel up to being active and the less active I am, the worse it is on my body and the more depression I feel. It's a vicious cycle and lately I've really taken a slide. So...back on meds and already I am wanting/starting to do more. Hang in there, attitude is everything, willpower is a lifesaver and you've got willpower! 

[Michael Murphy]

GCM the only one who should decide if you are a canadate for home hemo is the professionals who are responsible for the selectoon and training, one thing here is people's opinions often color their comments filter the negative remarks and keep on trying to reach your goals, ESRD is hard enough if you trust yourself.  I have read your posts and you seem a resonable and sane young lady.  I will say I think you may have hit a unlucky streak but things like your husband leaving say more about him the you.  Have faith in your self and keep up trying to reach your goals.  I have faith that you will end up where you want to be.