Kidney school - module three

I am going through the kidney school modules again since I did them right after I learned I had renal failure.

My wife has been there every step of the way, even to the point of going to every dialysis treatment and staying the whole time. She has never missed one treatment. However she is made to stay in the waiting room while I dialyze.

In the kidney school module three the following is stated:

Another important way family and close friends can be valuable team members is by acting as an extra set of eyes, ears, and mouths. Whenever possible, bring a support person with you to your doctor’s appointment, dialysis treatment, etc. Your support person might have important observations that you didn’t see, or raise questions that you hadn’t thought of. Plus, the companionship of another person can be quite comforting.

How many of you while in-center were allowed to have your support person with you while you dialyzed?

I was in-centre for 2-1/2 years. Some people had someone with them during dialysis regularly, but many of those just ended up sitting around in the waiting room. Dialysis is pretty boring when you’re doing it for the long term. They allowed one visitor, but I would say they didn’t actively encourage it. For instance, there weren’t that many extra chairs around.

I personally don’t see why a support person would be needed unless the patient is mentally or physically challenged. I know that I preferred not having to keep someone entertained for 4 hours. Besides, why should my wife or somebody waste 15 hours of every week just sitting around for something which is really a routine procedure.

Pierre

Pierre wrote:

I personally don’t see why a support person would be needed unless the patient is mentally or physically challenged. I know that I preferred not having to keep someone entertained for 4 hours. Besides, why should my wife or somebody waste 15 hours of every week just sitting around for something which is really a routine procedure.

Pierre, I am neither mentally challenged or physically impaired, but I am deeply in love. I have been married to the same wonderful woman for 21 years and we are together 24/7, which is our choice, and we could not be happier.

We have always been there for each other, regardless of the circumstances, through the good and the bad, through the healthy times and the not so healthy times and, besides me, she is my number 1 advocate when it comes to my health.

I don’t like the thought of her sitting there every treatment for 4 hrs while I dialyze, but she wouldn’t be anywhere else; believe me, I have suggested many times that she go and do something else besides just sit there and, even though she is not allowed back, she will have nothing of it. She is going to be there regardless of whether she is just keeping a chair warm in the waiting room or not.

Granted, she is the only one in my clinic that stays, most are dropped off by their spouse or drive themselves, but regardless she is not going to move from the clinic while I am there.

This being the case, and her making the choice to stay, still does not afford her the opportunity to see the Doctor when he makes his rounds, even though she is present in the clinic.

I just found it interesting that my clinic does not want anyone, support person or not, back under any circumstance while you are being treated.

This is one reason I will be glad when I am allowed to start home hemo and will be making appointments to see the Doctor in his office instead of the clinic setting where it is hard to discuss anything with him in the first place.

Dialysis is suppose to be a routine procedure but things to do happen, cramps, hypotension, nausea etc. I was always there for my father and the other patients as well. Staff get busy and don’t always notice when a patient starts having a problem.

Another reason patients at our home center stayed is because the family member came with them as the drive to get there was over an hour. Now who is going to drive back home and come back again. If you have got to wait anyway why not wait with the patient. Just as easy to read a book sitting beside them as it is in the waiting room.

I think it is just as important family members know what the nephrologist has to say as it is for the patient. Even my husband won’t go to a doctor without me going as he knows it will be difficult for him to remember everything that was said…and neither can I but between the 2 of us we get more out of it than if it were just one.

I can also say I never considered it a waste of 15 hours to be with my dad and I don’t think he thought he had to entertain me. He would nap off and on and I would read a book and observe.

RichnStacy we were allowed in the center to be with the patient but I realize this isn’t allowed every where.

It was through my observation of all patients in the center that I realized I had to get dad into a home hemo program. Because to be honest with you on 3x a week none of them had the energy and felt good. All were flustered by the diet and their lack of strength. Had I not realized it wasn’t just dad, I may have thought it was his age…which is what they wanted me to think.

I think for many dialysis centres, it’s just a matter of space. The dialysis centres are kind of crowded as it is, and then there’s the infection factor. Visitors would face some of the same hepatitis infection risks as patients, but they aren’t vaccinated. As I mentioned in another thread, there’s the potential for blood all over the place in a dialysis centre, even if it’s not visible - so you do have to be aware and careful. At my dialysis centre, they often had a volunteer to help patients with getting tea and other drinks, or going to the vending machines.

I’ve been married 28 years myself. To be honest, I sometimes thought of going to my dialysis as a break from family life for a few hours :slight_smile:

Pierre

Marty wrote:

Staff get busy and don’t always notice when a patient starts having a problem.

The patients were fortunate to have an extra pair of eyes watching over them as you sat there. As you stated staff members get busy and can’t see everything going on when it happens and unless an alarm is going off they might miss the early signs of someone starting to cramp or etc.

I think it is just as important family members know what the nephrologist has to say as it is for the patient. Even my husband won’t go to a doctor without me going as he knows it will be difficult for him to remember everything that was said…and neither can I but between the 2 of us we get more out of it than if it were just one.

I am sure patients get flustered with all of the information being thrown at them, especially when it is new and you are learning new things every visit.

All were flustered by the diet and their lack of strength. Had I not realized it wasn’t just dad, I may have thought it was his age…which is what they wanted me to think.

My opinion is your Dad was very lucky that you were allowed back and were able to observe what was going on, it helped you make a informed decision that will have lasting effect on his good health, which you might not have otherwise known about had you not been back in the treatment area when is was being dialyzed.

Don’t misunderstand me. I’m not saying that having an interested, involved friend or relative isn’t a good thing if it’s helpful.
Pierre

Pierre wrote:

The dialysis centres are kind of crowded as it is, and then there’s the infection factor. Visitors would face some of the same hepatitis infection risks as patients, but they aren’t vaccinated. As I mentioned in another thread, there’s the potential for blood all over the place in a dialysis centre, even if it’s not visible - so you do have to be aware and careful

Thanks Pierre, this is not something that had even factored into my line of thinking. The last thing I would ever want to do is expose her to some form of infection. This is something that would seriously need to be considered and weighted before going into a treatment area, and something I can honestly say I would have never thought about in those terms.

I’ve been married 28 years myself. To be honest, I sometimes thought of going to my dialysis as a break from family life for a few hours

Absolutely nothing wrong with that my friend :slight_smile: We just are weird in that regard. Not many couples can stand each other 24/7 and look forward to a break :slight_smile:

Kidney School module 3:

Another important way family and close friends can be valuable team members is by acting as an extra set of eyes, ears, and mouths. Whenever possible, bring a support person with you to your doctor’s appointment, dialysis treatment, etc. Your support person might have important observations that you didn’t see, or raise questions that you hadn’t thought of. Plus, the companionship of another person can be quite comforting.

Everyone’s experience is different. In my experience, I have found a majority of the medical management to be very dysfunctional/dishonest acting. I sense the corporations are about profit and the doctors and management are into the $$$ game, too. I’ve had many nursing staff who are hard working ppl and they can not help it that they are caught up in the schemes of the corps and spineless doctors.

I don’t know that CMS regulations based on CDC say there is a concern with dialysis patients having visitors (patients in hospitals have visitors), but from what I’ve observed, management bends the rules to suit their whims. Deliverymen, repairmen, staff’s family members and others come through the unit and stand right near patients all the time.

Patients should have the right to the support of their caregivers to help take in medical education and instructions as one can’t grasp it all when one is not feeling well. Also, some patients may need the physical or emotional support of their family or friends being close by on txs. I, personally, can get by without visitors, but it is very nice on the few days when I have had a visitor as it makes the time pass so much more quickly. So, I would always welcome visitors and would not want to be barred from having them unless there is a valid medical reason.

In a unit that is breaking regulations, they may not want visitors as visitors will observe dirty condtions, staff not washing hands, staff who are rude etc.

RichandStacy:

How many of you while in-center were allowed to have your support person with you while you dialyzed?

I have been in a number of units. In every instance, patients were allowed to have visitors the entire time. Somtimes they wanted visitors to wait before coming in until the patient was on/off ( so patient won’t get an infection or blood won’t spatter on visitor). But I have seen this rule broken many times depending upon the nurse putting patient on. I have heard of other units where one can not have visitors or can only have visitors for a few minutes. It’s up to what the particular management decides.

Pierre writes:

They allowed one visitor, but I would say they didn’t actively encourage it. For instance, there weren’t that many extra chairs around.

There have always been chairs in my units. Staff will either see visitors standing there by the patient and not offer them a chair or they will politely offer them a chair. I think the right thing to do is offer them a chair.

RicnandStacy

Granted, she is the only one in my clinic that stays, most are dropped off by their spouse or drive themselves, but regardless she is not going to move from the clinic while I am there.

This being the case, and her making the choice to stay, still does not afford her the opportunity to see the Doctor when he makes his rounds, even though she is present in the clinic.

I just found it interesting that my clinic does not want anyone, support person or not, back under any circumstance while you are being treated.

This is one reason I will be glad when I am allowed to start home hemo and will be making appointments to see the Doctor in his offic

I would question them not allowing your wife to be present when the doctor rounds. Have you asked them why they don’t permit visitors?

In my way of thinking, if a neph is not communicative when he makes rounds , he is not going to be anymore communicative in his office. Has anyone had a different experience?

Marty write:

Dialysis is suppose to be a routine procedure but things to do happen, cramps, hypotension, nausea etc. I was always there for my father and the other patients as well. Staff get busy and don’t always notice when a patient starts having a problem
.
Sometimes the staff is too busy to notice what is going on with their patients and other times the staff is off socializing with their staff friends. I have had to watch out for elderly and other patients who could not protect themselves and my own life has been in danger at times due to staff not being where they should be. This is the nature of in-center unless one is in a very well run unit that is organized and does not allow this. Volunteers or ombdusmen are needed when units are disorganized, but of course unit management would not want it.

Jane wrote:

I would question them not allowing your wife to be present when the doctor rounds. Have you asked them why they don’t permit visitors?

Thats the interesting part, she is allowed to come back when the Doctor makes rounds, if I can get someone to go and get her from the waiting room but usually this request is met with some resistence, it is like I am infringing on their time or something.

Marty write:

It was through my observation of all patients in the center that I realized I had to get dad into a home hemo program. Because to be honest with you on 3x a week none of them had the energy and felt good. All were flustered by the diet and their lack of strength. Had I not realized it wasn’t just dad, I may have thought it was his age…which is what they wanted me to think.

I have found nephs, management etc. to act like everything is well as can be- they don’t tell you the truth about the level of care that is being provided and the fact that there are much better ways to do dialysis. So, if one comes to the unit as a visitor and observes, they will see what you saw. Good thing you had the sense to get your dad out of there!

RichnStacywrite:

Thats the interesting part, she is allowed to come back when the Doctor makes rounds, if I can get someone to go and get her from the waiting room but usually this request is met with some resistence, it is like I am infringing on their time or something.

This is a red flag that they lack professionalism and integrity of care!

Jane, I found relating to a nephrologist being in a home program as compared to being in center just miles apart. For one thing you have some privacy and the Dr. can talk to you about you without having to worry about someone else hearing what he has to say. Also if you have questions you do have an an appointment time so you can bring them up and the Dr. can answer and discuss them without the other patients thinking he is spending to much time with you as compared to them. Maybe it is all in my head but I stopped feeling like we were just one of the group but actually individual human beings. I also think you get a little more respect for what you know.

I have spoken to my nephs both in-center when they round and in the office. In my experience either they have a good bedside manner or they don’t. All of my nephs have respected me on a certain level for being an educated patient, but, sadly, most of them have been arrogant types and don’t care about educating patients. They seem to be in a race to make a buck. It is evident when a neph. really cares, is patient and educates. Most I’ve encountered do not. But I hear of wonderful ones and I would love to have one like that.

“RichnStacy”:

[b]I am neither mentally challenged or physically impaired, but I am deeply in love. I have been married to the same wonderful woman for 21 years and we are together 24/7, which is our choice, and we could not be happier.

We have always been there for each other, regardless of the circumstances, through the good and the bad, through the healthy times and the not so healthy times and, besides me, she is my number 1 advocate when it comes to my health.

I don’t like the thought of her sitting there every treatment for 4 hrs while I dialyze, but she wouldn’t be anywhere else; believe me, I have suggested many times that she go and do something else besides just sit there and, even though she is not allowed back, she will have nothing of it. She is going to be there regardless of whether she is just keeping a chair warm in the waiting room or not.

Granted, she is the only one in my clinic that stays, most are dropped off by their spouse or drive themselves, but regardless she is not going to move from the clinic while I am there.

This being the case, and her making the choice to stay, still does not afford her the opportunity to see the Doctor when he makes his rounds, even though she is present in the clinic.

I just found it interesting that my clinic does not want anyone, support person or not, back under any circumstance while you are being treated.
[/b]
RichnStacy, we can relate to you and your wife wanting to be together strongly as we have been together constantly for 30 years. Partners,friends and family are always welcome in my clinic and I felt so much better training knowing that hubby was close, particularly in those first weeks when the brain is a mass of blubber!However some days he just needed a break.
I know that I would want to know exactly what was going on if it was my husband in the chair. I loved having friends visit also while I was training, but for some people they just don’t want to know, maybe too much going on in their own lives or they are scared or find the machine and blood too confronting.
I was so proud of my friends that made the effort to come and spend some time and watch and ask questions. I became extra close to some people that I would have just called acquaintances before and other people I would have called good friends just didn’t come and don’t visit much any more. I guess some people just have that empathy. I luv em to bits!
They have given me new insight into the way I relate to other people especially those with troubles. 8)

A while back, I saw in the news about a dialysis clinic doing something very different compared to other clinics…this clinic redesigned the environment inside…they literally made it look like a home!

Each station where patients dialyze were private, separate from other staions and the environment was like a home, not a clinic.

it was very nice looking and really made the patient feel like at home. They allowed only 3 guests, visitors in your little private station.

Isn’t that cool?

Its really sad how many clinics are feeling more like prisons than homes… :roll: