I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Spinner on June 29, 2006, 11:09:27 AM

Title: Spinner in hospital ---please I need info
Post by: Spinner on June 29, 2006, 11:09:27 AM
Patty here (Spinner's wife)

Spinner went to regular dialysis last night between 5pm and 9pm he was dialized approx 3 1/2 hours. Going in his stomach was bloated, his feet were swollen, blood pressure was running a little high and his breathing was labored. Ok, we thought he would go to dialysis he would tell the technician and if there was any kind of real problem the tech could advise us what to do.

Spinner told him all that was going on the tech didn't respond at all. By the end of dialysis Spinner's B/P is spiking 210/100, the tech gives him a pill for high blood pressure and sends him home. Spinner now thinks that maybe we are be'ing too cautiose and worry too much, because the tech wasn't concerned at all.

About 30 minutes after we get home his breathing is getting real bad. I called the Dr. and they said bring him into the hospital. (it is 60 miles away). We barely get on the highway and Spinner tells me he can't breath. I called for an ambulance and they met us on the highway and took him in code 3.

It took them over an hour to get him stablized before I could go to him. They did another dialysis and took off 7 pounds more fluid.  There is talk about a possible heart attack (Dr. waiting for test results) he's now in ICU. I can see him again at 3 pm.

I was led to believe that the renal care center would contact the Dr's if a problem developed, am I totally wrong. We were told we couuld contact the renal care center if a problem developed. Even the Dr. wondered why she had not been called.

Spinner almost died last night and I don't know what to do. Did I do something wrong, should I have called the Dr. sooner? Should the renal center have made sure the blood pressure was stable before they sent him home or at least wait to see if the meds would help?

Title: Re: Spinner in hospital ---please I need info
Post by: Hawkeye on June 29, 2006, 12:42:04 PM
Patty here (Spinner's wife)
Spinner went to regular dialysis last night between 5pm and 9pm he was dialyzed approx 3 1/2 hours. Going in his stomach was bloated, his feet were swollen, blood pressure was running a little high and his breathing was labored. Ok, we thought he would go to dialysis he would tell the technician and if there was any kind of real problem the tech could advise us what to do.

If he came into my clinic with the problems you describe here he would have been sent to the emergency room ASAP.  They also should have noticed that his weight was much higher than normal.  If he dialyzed for 3 1/2 hours and then the hospital pulled off another 7 pounds that is a huge amount of extra fluid.  Sounds to me like the staff didn't know what they were doing.
Title: Re: Spinner in hospital ---please I need info
Post by: kitkatz on June 29, 2006, 12:51:40 PM
Sounds like you are going to have to become a hawk and really watch them and really really begin to ask some important questions. 

What is his dry weight? You need to know this.
Go with him to dialysis if you can and keep and eye on things.  You often have to speak up for your hubby. Often men do not make a fuss, where as women will fuss when things are not right

Tell them everything when he is not feeling well. Also put the doctor's number where you can get to it and call when you need to.

Good Luck. I hope hubby feels better.

Katherine
Title: Re: Spinner in hospital ---please I need info
Post by: kevno on June 29, 2006, 02:05:41 PM
A tech giving a pill for high Blood Pressure?????????? Surly only a Doctor can prescribe BP tablets. The Techs have no knowledge of the Patient they are dealing with. They do not have the full notes to read like a Doctor. First of all WHY was the BP so high. On the unit I am on, a Doctor would  have been sent for as soon as a problem was noticed. Pulling off so much weight puts a great strain on the heart that is one of the reasons why a lot of renal patients have heart attacks. His dry weight needs to be checked on more often. Maybe he is losing body weight, but the techs are keeping him at his, so called dry weight. But he is only at that weight because of fluid. I have said this before. Fluid overload is a renal patient killer. I have seen it happen a few times now. It can just sneak up on you without you noticing it. But the techs should have noticed all the side effects off fluid overload that you said. Not should, definitely noticed.

Kevno
Title: Re: Spinner in hospital ---please I need info
Post by: Bajanne on June 29, 2006, 04:31:55 PM
I am really horrified.  I would hate the people at my centre to treat me so callously.  Don't you blame yourself, Patty.  But as Kitkatz said, you are going to have to really watch them like a hawk.  That should never have happened.
Anyway, you have to be his strength now.
Title: Re: Spinner in hospital ---please I need info
Post by: Spinner on June 29, 2006, 04:49:12 PM
Just got back from hospital. We didn't stay long as they have stabilized the B/P and his breathing has improved a great deal the nurse also said they wanted him to rest. Kevno the heart attack did happen, but it was before they pulled all the fluid off at the hospital. He will have a heart cath tomorrow to see how much damage was done.

Spinner is a very slightly built person when he first got sick last month he weighed 155 lbs. Very thin legs and feet. When he left the hospital approximately 3 weeks ago he weighed 145 they didn't mention a dry weight to me maybe to Spinner (I'm so confused). His weight posted on the board in his room now is 138.5. Just like you said he is losing body weight and it is being replaced with fluid buildup. The kidney Dr. at the hospital and the caseworker that came by all said the same thing the techs should have noticed the problem and responded. His weight going into dialysis last night was 148 (67.1 kg) going out 144 (65. kg).  Spinner does have trouble with the blood pressure and I think the Dr. had meds on his orders in case of spike. But I think it is wrong to give a patient a pill for spiking B/P and push them out the door without checking to see if it stabilizes.    

Katherine - I know what you mean about some men won't speak up. I have been coaxing Spinner to ask more questions, tell them what your feeling. I guess thats what has me so upset, he told them last night and showed them his stomach, and feet round the tech wrote on his chart and started dialysis. From now on though I will be there. I don't even care if my question sounds stupid to them If I don't know I'll ask. But as the caseworker said today if your not educated you won't know the question to ask, thats why you put your trust in your caregivers. I like this lady, she makes a lot of sense.

Hawkeye, let me know when you open your center Spinner will come. Like I explained the body weight loss and fluid weight gain were cancelling each other out. I wish the tech would have consulted the Dr. when there was no improvement with dialysis.

Thanks Bajanne, I'll try my best. 

Thank you for the information and encouragement. I still feel very incompetent but I'm learning.
Patty - Spinner's wife
Title: Re: Spinner in hospital ---please I need info
Post by: Bajanne on June 29, 2006, 07:06:36 PM
You have the correct attitude, and you have a whole community here behind you.  Ask your questions.  That is what they are there for - to give us answers (and good ones) to our questions.  I continue to wish for Spinner that things will work out for him, and that you will have the strength to do your part.
Hope you guys have a restful night and that all goes well tomorrow.
Title: Re: Spinner in hospital ---please I need info
Post by: Hawkeye on June 29, 2006, 07:22:45 PM
   
Hawkeye, let me know when you open your center Spinner will come. Like I explained the body weight loss and fluid weight gain were cancelling each other out. I wish the tech would have consulted the Dr. when there was no improvement with dialysis.

I work as an equipment technician for one now.  I may only have the technical background, but I know the clinical aspect well enough to know that what happened to your hubby isn't right.  It should have been handled in a much different manner.
Title: Re: Spinner in hospital ---please I need info
Post by: Panda_9 on June 30, 2006, 05:04:01 AM
Patty, it is absolutely not your fault!! I am appauled that they just gave him a tablet and sent him home! I consider that negligence, and I would be putting in a complaint about that tech. For BP to be that high then it is obvious he probably has a degree of fluid overload which should of been dealt with promptly. You did the right thing calling an ambulance. It is very important to know about dry weight, as if you lose actual body weight (fat), then the dry weight needs to be reduced, otherwise you will be unknowingly overloaded. Dry weight basically means what your weight is when your blood pressure is normal and you have no signs of oedema.  I would suggest when he dialyses, that his dry weight is decreased slowly each treatment. This has happened to me a few times now and I have been told to reduce it by 200g each treatment. This way you are bringing it down slow enough to get an accurate dry weight. Watch them like a hawk, educate yourself as much as you can, so you know what they are (and aren't) doing!
I hope your husband is alright and can get back on track. All the best!
Title: Re: Spinner in hospital ---please I need info
Post by: kitkatz on June 30, 2006, 06:09:54 AM
You all ever wonder why we have to watch them like a hawk at dialysis?  Rhetorical question. One would think with the millions of dollars these centers are making off of us, they could get people trained before they see patients, not while they see patients!  Often I have seen techs hit the floor with a minimum of experience then screw something up.  I would think our health and well-being is of vital importance to them.  After all we pay the bills for the clinic.  I know my bill is somewhere between 25,000 and 40,000 dollars a month plus the doctor's visit billed separately.
     I do not let new techs work on me until they have been in clinic for awhile.  I tell them when you have done your 100th stick come see me.  Also the staff that knows me tends to shield the newbies from me.  I tend to speak my mind and watch them like a hawk anyway, so I tend to make the new people really nervous.  My bark is worse than my bite though.
    All of this to say I watch the dialysis techs and nurses like a hawk and they all know I will report them if I see the need.  I once wrote the entire clinic up for having it so cold in the building I could not stay warm under a thick blanket!  Mean old me.  I asked them if they were freezing meat for later, or just freezing dialysis patients into Popsicles.  They took me seriously, ever since if I complain about cold someone looks into it quickly.
     So Spinner's wife, watch these people and get involved into his care.  Read everything you can find for information.  It will help.  Get know the techs and nurses by name.  Be friendly.  You don't have to be an ogre to get what you want, but be firm with what you feel is needed.  Ask questions, too.
Enjoy having the hubby home!

Katherine
     
Title: Re: Spinner in hospital ---please I need info
Post by: Rerun on June 30, 2006, 09:39:48 AM
Okay, lessons learned.  For one thing, you know Spinner needs to watch his fluid between sessions.  For another thing, you have the Nurse or Tech check his ankles before and AFTER dialysis.  If they are still puffy after dialysis, then you didn't get all the fluid off.  Yes, watch your dry weight.  You need to "challenge" it sometimes.  If you still have puffy ankles and you have reached your dry weight, then you need to drop the dry weight down a little and try that.  If ankles are still puffy, then drop your dry weight down the next time etc. 

Now, this works for me because that is where fluid collects for me (ankles).  Maybe Spinner collects it in his abdomen.

The opposite is true if he starts eating well and gaining real weight, and he bottoms out during dialysis then you need to raise his dry weight a little.

It is a delicate balancing act.

The Tech should be fired!
Title: Re: Spinner in hospital ---please I need info
Post by: Spinner on June 30, 2006, 09:03:03 PM
I forgot to mention - this is not a newbie tech at the renal center. His name is Cas and he's the manager. :o Another scary thing I learned today is that a lady with liver disease that caused her kidneys to shut down was having dialysis at this center and died while being dialyzed. I know these things can happen, the dialysis process itself is risky. I just didn't need to hear that right now. We just might have to make other arrangements.

Spinner update: The heart cath went very well. There is no permanent damage but is beating a little slow, which they say is no real problem. There were no blockages. The one thing they did find was the reason for poor circulation in his legs. In the pelvic area where the artery splits and goes down each leg it is very narrow and will have to be corrected with surgery in about 8 weeks. They want to give his heart time rest and heal before any more stress.

He had dialysis again today and a blood transfusion for anemia. I am happy to say he was hungry and did eat pretty good. I guess it's easier to eat if your not full of fluids.  If he rests well tonight and shows no signs of stress from the heart cath or transfusion he will probably leave ICU tomorrow and go to the renal floor. The Dr. said next week they will fine tune his dialysis and may call in a hematologist they want to do a bone marrow test. They still think he has something else going on besides just the kidneys. I just hope and pray if they find anything it's fixable.

Thanks for all your help and support. Ya'll are my life line in this sea of insanity.

Spinner's wife Patty   




Title: Re: Spinner in hospital ---please I need info
Post by: kitkatz on June 30, 2006, 09:15:46 PM
I understand how you feel. With your husband down for the count it is hard.  It feels like the ocean is rocking underneath you and you were leaning on him, now you have to let him lean on you.  It is a hard thing to change places in a relationship.  I know we keep doing it around here. Be strong.  We will be here to help.  Prayers go out to you both.
Title: Re: Spinner in hospital ---please I need info
Post by: Bajanne on July 01, 2006, 01:48:32 AM
Patty, that was an encouraging email. I am glad to hear that he is eating.  My father used to think that eating is the solution to everything!   I continue to hope that things get better and better.  Yes, you do have a whole caring community in this with you.   Keep us posted.  Give Spinner our best regards.  And don't forget to rest yourself.  This is impacting on you too.
Title: Re: Spinner in hospital ---please I need info
Post by: Hephs-little-lady on July 04, 2006, 07:51:43 AM
Patty, just to let you know my thoughts and prayers are with you.

And don't forget to rest yourself. This is impacting on you too.

I agree totally, look after yourself....

Best Wishes

H-L-L
Title: Re: Spinner in hospital ---please I need info
Post by: Black on July 04, 2006, 08:23:42 PM
Hi Patty,

I've been very busy at work and haven't been on-line much lately.  Reading this thread tonight has been shocking!! :o

I'm so sorry you have had this awful scare, but glad Spinner is getting better.

My husband is not yet on dialysis but I know it is coming soon, and I am so thankful for your taking the time to post your experiences.  I am learning along with you, and Mike and I will be better prepared because of you, Spinner, and everyone else here.

Thanks for sharing and I'm sending good thoughts and prayers your way.

Lorelle
Title: Re: Spinner in hospital ---please I need info
Post by: kevno on July 19, 2006, 06:10:46 PM
Sorry I have been off-line for a couple of week.

I am happy for you that spinner is getting better. It sounds like it as been a hard couple of weeks for spinner and you. Now he as to have the operation on his legs.

Hope everything works out OK for you.

Yours

Kevno
Title: Re: Spinner in hospital ---please I need info
Post by: slothluvchunk on July 21, 2006, 04:27:02 PM
Patty, I'm very sorry to hear this happened - thankfully it sounds like Spinner is on the mend?

Unfortunately what you've described isn't unheard of.  A couple of years ago I watched the man next to me have a heart attack, and watched the staff not know what to do.

It's nice to blame the techs who don't notice, but lets face it, in this day and age of bottom lines and business expenses, the techs aren't getting paid enough to care.  You're talking about people who make (in many areas anyway) $8-$10 /hour, and have virtually NO medical training beyond basic medical terms.  The tech simply wasn't capable of diagnosing such a problem - the nurse however should have caught it.

I would urge you to be vocal when you *feel* like something isn't right.  Many times the staff are oblivious to what's going on, especially if we don't make a big deal about it.

I don't mean to paint it like the techs and nurses are clueless, they aren't.  They simply aren't taught to take any pride in their work or pay attention to detail at that level.
If you suspect something's wrong, talk to whomever you can, and figure it out.  Never take one person's word as truth - check everything.  Even when a doctor talks to you - talk to another doctor if what the first one says doesn't sound or feel right.

Again, glad to hear things are OK now.  I would encourage your husband to be aware of the signs and symptoms of fluid buildup so that he doesn't go "too far" again. 
For me, I know right away when I wake up in the morning where I am by how tight my wedding ring is.  :)

Good luck - be informed.
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 22, 2006, 12:10:58 PM
Patty here (Spinner's wife)

Spinner went to regular dialysis last night between 5pm and 9pm he was dialized approx 3 1/2 hours. Going in his stomach was bloated, his feet were swollen, blood pressure was running a little high and his breathing was labored. Ok, we thought he would go to dialysis he would tell the technician and if there was any kind of real problem the tech could advise us what to do.

Spinner told him all that was going on the tech didn't respond at all. By the end of dialysis Spinner's B/P is spiking 210/100, the tech gives him a pill for high blood pressure and sends him home. Spinner now thinks that maybe we are be'ing too cautiose and worry too much, because the tech wasn't concerned at all.

About 30 minutes after we get home his breathing is getting real bad. I called the Dr. and they said bring him into the hospital. (it is 60 miles away). We barely get on the highway and Spinner tells me he can't breath. I called for an ambulance and they met us on the highway and took him in code 3.

It took them over an hour to get him stablized before I could go to him. They did another dialysis and took off 7 pounds more fluid.  There is talk about a possible heart attack (Dr. waiting for test results) he's now in ICU. I can see him again at 3 pm.

I was led to believe that the renal care center would contact the Dr's if a problem developed, am I totally wrong. We were told we couuld contact the renal care center if a problem developed. Even the Dr. wondered why she had not been called.

Spinner almost died last night and I don't know what to do. Did I do something wrong, should I have called the Dr. sooner? Should the renal center have made sure the blood pressure was stable before they sent him home or at least wait to see if the meds would help?



Wow I just read this now and all the things you said point to that he had too much fluid on him. Then when you said they took off 7 more pounds off of him?? Wow!! It definately sounds like that was the problem and the tech should have done something but it seems like maybe the tech didn't realize he was having trouble breathing or didn't take him seriously enough? This is why I always go with what Lori Hartwell said in her book "Chronically Happy (http://chronicallyhappy.com/)" .. to always research and take charge of your health! Don't depend solely on them to take care of the patient! I have learned this to be sooooo true! Learn the signs of fluid retention and keep on top of it so this doesn't happen again as fluid overload is very bad and hard on the heart and can get into the lungs as it sounds like it did!!
Title: Re: Spinner in hospital ---please I need info
Post by: SpeedFleX on July 22, 2006, 01:57:38 PM
That's sounds really bad what happen but I would like to know what these techs are? I wanna fully understand this story that totally went wrong..

So far it sounds like techs are people who don't have much medical knowledge yet treat patients.


Very Sad story I wish Spinner to get well again
Title: Re: Spinner in hospital ---please I need info
Post by: Mom3 on July 22, 2006, 02:33:37 PM
Sounds all too familiar!! And I was panicking calling about the swelling etc. with my son saying the clinic says I'm fine!

My son had something very similar a couple of months back. The hospital drained his lungs with a needle and I insisted on an echocardiogram. Have they done an echocardiogram to see if fluid is pooled around the heart etc.? (It was in my son's case and they did a pericardial window...which involves pumping the fluid off.) Even once he was hospitalized I had to be the advocate. I really had the feeling the doctors didn't want to find what was going on since it would show what they had done wrong! His admitting physician insisted he was young and didn't need an echocardiogram, but I insisted on one, and it may have saved his life...

You have to be very assertive or that was my experience and you can't know too much. The internet was a huge help to me. It's where I found out that an echocardiogram is standard medical practice for severe fluid overload. No one was offering it! My son stayed hospitalized 13 days and spent one day in the CVRU after surgery. Most of the time on the heart floor...

My research also showed that cases of malpractice over misdiagnosing dry weight are common and are frequently won. So far we haven't gone that route but also haven't ruled it out. Sounds like at the least you have grounds for a complaint to your kidney council. If not a lot more. My son's former clinic did the same with the BP pills to get him down to discharge him. After all this I found out they had once given him several in one afternoon and had nearly killed him! Seems to be bad practice but common practice. Apparently they can't let the pt go home until the BP goes down to a certain level and I know that at his former clinic they caught grief for overtime...

Note FORMER CLINIC. We changed doctors and clinics and are currently driving him twenty miles to dialysis. We think things are going better in many ways. They seem to be more on top of it. Can't advise you to do that, but it might be something to consider, especially if this is not the first problem.

I am holding you in the Light. it is an incredibly helpless feeling I know. Very overwhelming. If it helps remember so many people care!!! Good luck--

Mom 3
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 22, 2006, 03:45:14 PM
Is it common practice for dialysis units to give meds to lower bp just to get the patient out the door so the nurses and techs don't have to stay later than regular hours?
Title: Re: Spinner in hospital ---please I need info
Post by: sandman on July 22, 2006, 05:11:10 PM
As far as I know, nurses in the states can not just give you any perscription medication without your doctors okay.
Title: Re: Spinner in hospital ---please I need info
Post by: Mom3 on July 22, 2006, 06:48:33 PM
In my son's case they gave him a med that the doctor's had prescribed, but too much of it, definitely on one occasion. Must have had the doctors write some standing order or something...

I'm still having problems myself with understanding all the BP fluctuations and what they mean! At his new clinic the BP has been bottoming out. I guess because everyone is afraid to let fluid build up again and they go too far in the other direction. Which may be something you'll need to be aware of with Spinner with this.

Keep us posted on how he is doing, please!

Mom3
Title: Re: Spinner in hospital ---please I need info
Post by: sandman on July 22, 2006, 08:09:08 PM
Well, from what Angie has been telling me, draining you to a point where it causes you severe cramping is the best method for finding your actual dry weight.  The only problem with that is, that the patent is not able to communicate with the nurses very well at that point and without someone watching over the patient closely, this could cause a serious problem.
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 23, 2006, 02:21:03 AM
Well, from what Angie has been telling me, draining you to a point where it causes you severe cramping is the best method for finding your actual dry weight.  The only problem with that is, that the patent is not able to communicate with the nurses very well at that point and without someone watching over the patient closely, this could cause a serious problem.
You do NOT want to be THAT dried out that it brings severe cramping Jeff. If you cramp a little at the same time as your BP dropping .. that says you are too dry at a little lower or at the dry weight.

Am I right about this?
Title: Re: Spinner in hospital ---please I need info
Post by: Panda_9 on July 23, 2006, 04:41:07 AM
Cramping can also be caused by being too overloaded. When you are overloaded you generally would be running at a high UF rate. The rate at which the fluid is coming off, is too fast for the shifts in cellular fluid inside your body. So the machine is taking fluid too quickly before the cells get a change to replace it.
Title: Re: Spinner in hospital ---please I need info
Post by: SpeedFleX on July 23, 2006, 01:22:57 PM
Yes I get this alot. These are usually what I get when my weight is too low.

Dizzy
Cramps
Low BP

Then when I get up after dialysis BAMM I see black my hearing echos so I stand there a second and it goes away I tell the doc I drink something they up my weight and then I feel great again!

But I have a quick ? what is a tech exactly I don't think we have them here where I dialyze
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 24, 2006, 05:20:21 AM
Yes I get this alot. These are usually what I get when my weight is too low.

Dizzy
Cramps
Low BP

Then when I get up after dialysis BAMM I see black my hearing echos so I stand there a second and it goes away I tell the doc I drink something they up my weight and then I feel great again!

But I have a quick ? what is a tech exactly I don't think we have them here where I dialyze
we don't have them in my Canadian city neither. At least not the same type of techs. Our techs are only guys who work on the machines and that is all. And by work on them I mean .. repair them.

Ya when my bp is low and I stand up my ear pop like crazy and if it is too low my visit goes dark and I need to sit back down fast or I will end up sitting without me wanting to.
Title: Re: Spinner in hospital ---please I need info
Post by: slothluvchunk on July 24, 2006, 04:09:27 PM
If you're having trouble getting fluid off without drop in BP an cramping, there are a few options.

The first is obviously to see if you need to raise your dry weight a little bit.

Sometimes though, people crash without hitting their dry weight.  There a few really simple things you can do to help fight this.
Have the techs lower the temp that your blood is returning at.  The warm fluid that is coming in from the machine is a vasodilator, meaning it makes your entire vascular structure expand.  This results in a lower blood pressure.  Cooling this just a tad helps to constrict your vessels a bit, reducing the risk of that BP crash we all hate.

Another option is to make sure that UF profiling is enabled on your machine during your treatment.  This alters the UF rate throughout the treatment, so that you're pulling more off at the beginning, and less off at the end.  There are a number of different UF profiles, but the most "even" that I've found is #2 (on the Fresenius 2008H and K models).

Sodium profiling is also an option if you're cramping a lot. 
I personally prefer my own version of sodium profiling:  I make sure to bring a nice meal with me, and I try to load it up with some of what's being depleted during treatment.  I then eat it first thing, as eating it later may further compound the problem of low bp (all that blood rushing to the stomach for digestion).
I find that this helps to replace a bit of what's coming out.  Also, if you bring a drink with you, factor it into your goal so that you're not wondering why you're overweight when you leave.
ALSO:  keep in mind that the food you just ate has mass and therefore has weight - but shouldn't be factored into your goal.  If you seem a little "heavy" when leaving, and ate a foot long sandwich, don't worry - as that food digests and leaves, so will the weight from it.  Unfortunately many techs can't understand this very simple concept. (first grade science anyone?)

Bring in some pickle juice, or chicken broth, or something salty that you can drink a bit of if you're beginning to feel woozy.

You can also simply ask the tech to turn off your UF for a bit, because you're feeling kind of dry.  This means that the machine is continuing to dialyze, but is not pulling off any fluid.  You want to (if at all possible) get your full treatment in.

More dialysis always = good
Your peers are getting kidney function 170 hours a week - you're getting 12.

It can be very hard to finally find a weight that feels "right" - and a system of avoiding those nasty bp crashes.  This place is a great resource though, as we can all share what has worked for us, and in doing so provide a veritable encyclopedia for the newcomer.

Good luck spinner!  :)
Title: Re: Spinner in hospital ---please I need info
Post by: goofynina on July 24, 2006, 04:19:18 PM
Hey Slothluvchunk,  Wow, where were you when i was on hemo,  all that infomation you just gave would've helped me greatly,  gonna have to remember for if and when i go back on the dreaded hemo. :-\  Great post, very informative.  Thank You... :)
Title: Re: Spinner in hospital ---please I need info
Post by: sandman on July 24, 2006, 05:26:16 PM
Wow, good stuff there slothluvchunk.  I have asked Angie about her UF profile because as I sit and watch her machine, I swear that the rate gets faster toward the end but she tells me no.  The machine stays at an even rate all the way through.  Angie tells me that it could be that I am not perceiving the read out correctly and just think that it's getting faster toward the end when in fact, has stayed the same, which could very well be possable.  I was not aware that you can change the UF profile so that is would ramp down toward the end.  Has anyone else tried this method?
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 24, 2006, 07:32:49 PM
I have the  Fresenius 2008 K model (I just checked today). I just got back now from dialysis. My BP is a lot better this time as they raised my dry weight up .5 and my pulse was good til the end when I stood up to do my standing BP.

All that information is exactly what I wanted!! Thank you so much!! This is the type of stuff I have been looking for and am so glad I have found a place that provides it! Most of the sites that explain this are too technical for me to understand and they don't go into it like you do but they assume you know what certain things are.  Thank you.

I asked them about sodium profiling last week and now I have one set up. But I don't have a UF profile yet. I have tried to ask about it but since I didn't know the correct terminology at the time .. they didn't get what I was asking. When I asked about the sodium profiling infact, I asked 2 nurses and the one thought I was talking about that sodium concentrate they inject into the dialysis if your BP drops before the last hour. The other nurse figured out what I meant though so that is good.

More dialysis always = good
Your peers are getting kidney function 170 hours a week - you're getting 12.

Wow and I get less than 12 hrs/wk! I never thought of it like that but how true!!
Title: Re: Spinner in hospital ---please I need info
Post by: Mom3 on July 24, 2006, 07:38:55 PM
Do most dialysis clinics allow people to snack while they dialyze? Both of my son's clinics have had strict enforced rules against it!

And how is Spinner doing now?

Mom 3
Title: Re: Spinner in hospital ---please I need info
Post by: sandman on July 24, 2006, 08:02:55 PM
Do most dialysis clinics allow people to snack while they dialyze?

I can't speak for all clinics but the one that Angie goes to, does allow snacks and light meals.  As long as it's acceptable foods of course.  You can't just walk in with a large peperoni pizza, dripping with sauce and cheese.  They would seriously frown on that.  Angie and I have brought in a dozzen low sugar doughnuts to share with everyone there.  Even the nurses enjoyed them sometimes.
Title: Re: Spinner in hospital ---please I need info
Post by: Panda_9 on July 25, 2006, 04:25:58 AM
At our home hemo unit we get morning tea which is a drink and biscuits, then lunch which is a drink, sandwhiches, and a yoghurt/fruit/jelly etc. I used to take my own lunch in alot which wasnt a problem. As long as you arent going to sit up for a buffet or something. However in the acute Dx ward they tend to only let you eat after you come off the machine, but you get a cuppa.
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 25, 2006, 07:08:23 PM
At our home hemo unit we get morning tea which is a drink and biscuits, then lunch which is a drink, sandwhiches, and a yoghurt/fruit/jelly etc. I used to take my own lunch in alot which wasnt a problem. As long as you arent going to sit up for a buffet or something. However in the acute Dx ward they tend to only let you eat after you come off the machine, but you get a cuppa.
wow you are sooo lucky! Where do you dialysize?
Title: Re: Spinner in hospital ---please I need info
Post by: Panda_9 on July 26, 2006, 04:11:08 AM
Im in australia
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 26, 2006, 04:26:36 AM
Im in australia
Bah :( I am in Canada :(
Title: Re: Spinner in hospital ---please I need info
Post by: slothluvchunk on July 26, 2006, 12:25:42 PM
I was looking at dialyzing in some German clinics this summer (I was going to visit my old stomping grounds on business) - and the clinics I checked with through Switzerland and Germany all offered snacks and meals as part of the treatment.

In San Diego I was offered flavored crushed ice - like snow cones, and crackers during treatment.

In the Bahamas they had small sandwiches and some juice - though that place was scary enough as it was, I didn't accept anything from them.  :)

L.A. hasn't offered me anything, and in the few clinics I've used there, the techs and the patients always seem to be pretty angry.
Title: Re: Spinner in hospital ---please I need info
Post by: sandman on July 26, 2006, 04:18:01 PM
In San Diego I was offered flavored crushed ice - like snow cones

They have those in my city ( Philadelphia ) too but here, there called water ice.
Title: Re: Spinner in hospital ---please I need info
Post by: angieskidney on July 27, 2006, 08:19:47 AM
I was looking at dialyzing in some German clinics this summer (I was going to visit my old stomping grounds on business) - and the clinics I checked with through Switzerland and Germany all offered snacks and meals as part of the treatment.

In San Diego I was offered flavored crushed ice - like snow cones, and crackers during treatment.

In the Bahamas they had small sandwiches and some juice - though that place was scary enough as it was, I didn't accept anything from them.  :)

L.A. hasn't offered me anything, and in the few clinics I've used there, the techs and the patients always seem to be pretty angry.

Wow thanks for this :) I am thinking of making a new thread where we talk about which units were the best because honestly .. it is the only way for me to know where is good and where is not so good :P Sandman tells me I have to go check places out but if I am thinking about the States but don't live there .. it makes it hard to check it out. OTher people's words help a LOT! Thx :)

Here is the thread I just made: Dialysis: Centers: Which units did you like and don't like? (http://ihatedialysis.com/forum/index.php?topic=916.0) (I think this is the perfect place for the post)



In San Diego I was offered flavored crushed ice - like snow cones

They have those in my city ( Philadelphia ) too but here, they're called water ice.
Really? Does this mean you have been checking out dialysis units?