Spinner in hospital ---please I need info

[Spinner]

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?

[Hawkeye]

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.

[kitkatz]

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

[kevno]

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

[Bajanne]

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.

[Spinner]

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

[Bajanne]

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.

[Hawkeye]

   
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.

[Panda_9]

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!

[kitkatz]

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
     

[Rerun]

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!

[Spinner]

I forgot to mention - this is not a newbie tech at the renal center. His name is Cas and he's the manager. 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   

[kitkatz]

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.

[Bajanne]

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.

[Hephs-little-lady]

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

[Black]

Hi Patty,

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

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

[kevno]

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

[slothluvchunk]

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.

[angieskidney]

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" .. 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!!

[SpeedFleX]

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

[Mom3]

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

[angieskidney]

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?

[sandman]

As far as I know, nurses in the states can not just give you any perscription medication without your doctors okay.

[Mom3]

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

[sandman]

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.