Handling Problems w/ Care & Needle Sticks BEFORE Fistula

Discussions for Patients, Family, and Friends HD For Patients
1

I called my husband’s nephrologist’s office today to complain and now I’m wondering if I did the right thing.

During early research on CKD, PKD, and dialysis I frequently found cautions against having needle sticks anywhere between possible A/V fistulas sites and the heart. While we were visiting the two dialysis centers, I asked about this and was told that my husband should be guarding all of his veins in his arms, and both suggested having blood drawn from the back of his hands.

His nephrologist has yet to mention this and out of the 7 or 8 previous draws at the nephrologist’s office only ONE was drawn from the back of his hand. Yesterday I reminded my husband not to forget again and to be sure they did not use the veins in his arms again when the blood was drawn today. Today he was distracted and before he thought about it the tech was attempting to draw out of his arm again – she did not hit the vein on the first stick and was going to stick him again, when he stopped her and told her to use his hand.

When I called the Neph’s office they were very nice, passed me to the office manager who was knowledgeable regarding the possibility of scarring and stenosis in veins causing A/V fistula problems. She said that even though the lab is a “contractor” they should be aware that any nephrology patient may be a candidate for A/V fistula and the precautions which are necessary to protect the integrity of the patient’s veins. I explained that one of my husband’s symptoms is that he has become very forgetful (I didn’t tell her, but he spent two hours last night looking for his watch – it was right next to his computer right where he put it when he took it off!) Anyway, when I mentioned him being forgetful, she said that should not be a problem because the tech should be prompting every patient at every draw regarding where the blood should be drawn and if they are a possible dialysis patient. She assured me that she would go back to the lab immediately and take care of this. She said she would also flag my husband’s chart so that all of his blood draws would be marked to be drawn from the backs of his hands only.

I know this call will benefit my husband, and possibly many other patients, but will it label me a trouble maker and cause my husband to be treated differently? I’ve already had them send a referral to another surgeon for a second opinion, asked for the vein mapping to be changed to a different hospital, and now I’ve complained about the lab.

I’ve tried to remain in the background and have been to only 2 nephrology appointments in the past year. I’ve been tactful and very nice, despite being quite apprehensive and at times angry that we are have not gotten the best medical care or sometimes even minimal education/advice. I keep thinking I ought to keep my mouth shut and save my requests and comments for bigger issues, but so far I just can’t do it.

When my husband was first diagnosed w/ advanced PKD over a year ago we decided I would be the one to handle things like this so he can concentrate on making and keeping his medical appointments, taking his meds, taking care of himself, monitoring his BP and watching his diet – he does most of his own cooking since he’s home and I’m working full time. Now I’m second guessing myself because this is awfully early in the game to become known as “difficult”. Anyone have experience with handling these kinds of problems? Any suggestions on how to make sure the staff thinks of us as being on the same team w/ the same goal – optimum care for my husband?

2

The reaction you got from the office manager doesn’t appear to indicate that she views you as a troublemaker. Instead, it appears that she heard your expressed concern, realized it was valid, and plans to use it as a “teachable moment” with the lab personnel so they understand the importance of protecting possible access sites. Believe me, I’ve seen the reaction of staff to a patient or family member that they view as a troublemaker and it is much different from what you experienced.

I’d suggest that you continue to ask questions or ask for things your husband needs. Make sure that the staff understand changes that you observe. You know your husband much better than they do and you will see the changes (like his memory changes) sooner than they will. When you advocate for him be as respectful with the staff as you’d want them to be with you. It’s when people become confrontational (aggressive, threatening) that staff get defensive, stop listening to concerns, and label someone as a troublemaker.

3

When my husband was going into CHF from 2001-5/2003 till he finally did go on hemo dialysis, he too was having diffulty remember small things just like you are noticing. I became his total advocate. I have not missed one appointment, etc. I keep track of everything his meds, surgeries, blood work values etc. These are keep on spreadsheets, and on my PDA.
I researched every thing I could possible research and have learned much on this site and the Yahoo dialysis-support site. We do nocturnal hemo at home since 6/04 and I do his canulating. When we travel I have all his medical history, I carry his needles(special buttonhole needles) etc.
No matter where we have gone both at home and when we are away I handle everything with confidence not ATTITUDE! I make it very clear that I have his hippa release and that I make all the decisions. Everyone is totally amazed at how much knowledge I have and am often questioned if I am a nurse. They are blown away when I tell them that I have just learned to be a very good advocate for my husband. I did not get married 41 years ago to be a widow.
One of the criteria I have when we travel is that I must cannulate him!
This is his life line and NO one will destroy that.
I am always treated with respect.
Knowledge is power to be used in the appropriate way.
I question everything I see that does not appear to be correct. I firmly believe that the way a question is asked will determine how it is received.
Do not ever be afraid!
If you ever feel the need to e-mail me please do
pc639@nycap.rr.com
Pat

4

Ladies you are amazing! What wonderful people you are and how fortunate your partners must feel to have you as their advocates.
More power to you.
Cheers :slight_smile:

5

You are an inspiration! I have been keeping everything in a couple of folders and a small note book. It’s time to get better organized. Thank you!

BTW, since his memory has gotten so bad I will be going to all of his appointments from now on – Neph 1/3/06, and vascular surgeon consult (for results of vein mapping) on 1/4/06.

Thanks again!

Lorelle

6

Thanks, beachy, :oops: I have soooo much to learn, but Hubby is appreciative of my efforts so far.

7

My husband went in to have blood drawn today at the hospital outpatient clinic. When he told the tech to drawn blood from his hand, she refused!! After a discussion in which she claimed expertise and experience in the hospital’s dialysis unit, my husband called me to confirm why he should not let her take it from his arm. I explained again that since he has blood drawn frequently he should not have the needle sticks in his arms which could cause scarring in the veins and make using them for dialysis difficult or impossible. He told me later that the tech was very irritated but when he told her, “It’s my hand or nothing.” she complied.

I called the hospital. After being on hold, transferred a few times and speaking w/ the director of the lab, I finally spoke w/ the person in charge of treatment guidelines and policies. According to her, the hospital policy is to use the arm veins w/ the only restriction being to avoid any A/V access area. When I asked her why they didn’t follow the guidelines recommended by the NKF, she said my doctor would have to put that question in writing to the director of the hospital. When I asked for the that person’s name she reluctantly gave it to me.

Is anyone surprised that I’m not going to ask anyone to write, and that I’m going to do it myself? :lol: :twisted:

I’ll post when I get an answer as to why they aren’t following the NKF 2000 guidelines.

8

Hi Lorelle,
I will be very interested to hear what you find out here. I was in a similar position, once, in the hospital. The nurses did not have the skill to access the vein in my hand. The hospital nephrologist came in and he said it had to be the arm despite my urgings about future access location. I was a new patient at the time and did not have all my facts straight. I was too new and did not know how to handle the situation at that juncture in my life. I have managed to totally avoid hospitalizations since, but if I did need to go in hospital, I would have a family member or friend serve as my advocate.

Hospital staff can be very rude and employ bully behaviors. I had one staff after another, on that occassion, treat me like a non-compliant patient since I dared open my mouth to make my medical wishes known. After they hurt my hand from what I believe was their own lack of skill, I let it go on that occassion. But I intend to be prepared if ever in the same situation again.

In fact, does anyone have any suggestions for how to deal with hospital staff in order to ensure one get’s a competent nurse to access one’s hand? In my case they sent very incompetent staff to do the job. They performed as if they had only had one or two sessions in a training class! I’ve had skilled nurses access my veins before and there is a very noticeable difference. But in some hospitals, just like in some dialysis units, they’ll put anything over on you unless you demand competent care. So, if anyone has any suggestions on dealing with hospital staff when it comes to this issue or any others re hospitalizations for kidney patients, just lay it on me.

9

All I can say is have confidence with the medical personnel and treat them as if they’re your friend…

Tell them a little about you, get involved to get to know them just as if meet new people.

Explain to them anything they don’t know about you and good veins you know you have that they don’t know…

P.S. One time I had to go to emergency and the needle sticker they assigned I knew…he was still in college…just a starter, but I had confidence on him and told him which was the working vein, he didn’t accept my suggestion and I warned him.

Once you was digging right into the wrong spot for few minutes I said to him…STOP IT NOW!..I DON’T WANT YOU TO DO THIS, GET SOMEONE WHO KNOWS HOW! … :twisted:

10

Gus,

I think that’s the point of the question. How do you get staff to listen to you when you know where the needle stick should be done and they just want to blow you off. You shouldn’t have had to go through the digging to prove you knew what you were talking about.

11

I know we can all read about this on various kidney websites, but does anybody know if there is any real evidence that the tiny needles used to draw blood for lab work, or those for IV’s, cause any future problems with development of an AV fistula? Lots of things get repeated year after year, but often, there is no scientific basis for it, or it’s based on badly outdated information or beliefs from an earlier time. I’m not saying this is one of them, but I’m just wondering. I was hospitalized by cardiology on the nephrology floor a couple of years ago, and they didn’t seem to worry too much about where they placed needles. One thing I do know from experience is that the back of the hand is by far the most painful site, and it also seems to be very hard to do. In all my years with chronic renal insufficiency, none of the many nephrologists I’ve had ever mentioned a word about this. The only place I’ve ever heard of this is on the internet. I did end up with a successful fistula on the first try despite this.
Pierre

12

http://www.kidney.org/professionals/kdoqi/guidelines_updates/doqiupva_i.html#doqiupva7
GUIDELINE 7

"…Preservation of Veins for AV Access

A. Arm veins suitable for placement of vascular access should be preserved, regardless of arm dominance. Arm veins, particularly the cephalic veins of the nondominant arm, should not be used for venipuncture or intravenous catheters. The dorsum of the hand should be used for intravenous lines in patients with chronic kidney disease. When venipuncture of the arm veins is necessary, sites should be rotated. (Opinion)

B. Instruct hospital staff, patients with progressive kidney disease (creatinine >3 mg/dL), and all patients with conditions likely to lead to ESRD to protect the arms from venipuncture and intravenous catheters. A Medic Alert bracelet should be worn to inform hospital staff to avoid IV cannulation of essential veins. (Opinion)

C. Subclavian vein catheterization should be avoided for temporary access in all patients with kidney failure due to the risk of central venous stenosis. (Evidence)

Rationale Venipuncture complications of veins potentially available for vascular access may render such vein sites unsuitable for construction of a primary AV fistula.

Patients and healthcare professionals should be educated about the need to preserve veins to avoid loss of potential access sites in the arms and to maximize chances for successful AV fistula placement and maturation. Subclavian vein catheterization is associated with central venous stenosis. Significant subclavian vein stenosis will generally preclude the use of the entire ipsilateral arm for vascular access. Thus, subclavian vein catheterization should be avoided for temporary access in patients with kidney failure…"

13

Hi All,
I would like to chime in on this. My hubby Ralph (dialysis patient) was driving his car on Good Friday and blacked out. He hit 2 guard rails and was taken to the hospital. First hospital was our usual one and they were really great. But we know them and they know us.
We were transfered to Albany Medical Center because he had a fractured C-7 and felt the medical center was the place to be. I had delt with the Centet a few years ago with my mom and I was really hesitant. But they were wonderful.
They listened and were very greatful I was there to fill them in as my husband’s advocate.
The first day that he had dialysis, ( I brought my own needles since we do nocturnal and use a fistula) but they said it they had the needles but I could not cannulate. :twisted: Needles to say I said to the nurse-either I canulate him or he doesn’t get done and I take him to where I can canulate him. The nurse said that they had RULES. Well I said please call who ever you need to whether it be the President, Pope or who ever to get the rules to bend. As this was his life line and NO one was going to screw it up. A little while later she came back and said they agreed to let me canulate. [She than said she would rather I do it anyway.] After that we got a long fine.
He is doing fine now. They just can not find out why he blacked out.
I have my own theory-his pressure was a little low coming off dialysis that morning 90/49 which it is sometimes. but he took his coreg heart pill earlier than he usually does and when it kicked in it dropped his presssure.
All the nurses, doctors and staff were wonderful. They are really training doctors differently now(this is a teaching hospital). What a pleasure it was
to know they LISTEN.
He is doing fine, has to wear a soft constructed collar until we see the nuerosurgeon on the 15th and he is wearing an event monitor for 30 days to see if they can pick up anything with the heart that thet could not get in the hospital.
Sorry for the long post. But as his advocate I work very hard to make sure he gets the very best of care.
Pat :lol:

14

Pat, first let me say how thankful I am that your husband didn’t end up in a worse accident than that, as bad as it is. Will he be able to continue driving?

I personally would be extremely uncomfortable and a little scared, frankly, if I came off my treatments at 90/49. One time would be enough. I would consider that not normal at all and possibly very dangerous. I’m curious about what his treatment team thinks about this. I know that I would be told to up my dry weight right away, and probably by a lot, to prevent any chance of that happening. Has he gained any real weight lately?

It’s great that he has you as his advocate and as his dialysis “nurse” to cannulate him in the hospital. I sometimes wonder what I would do in a similar situation. Since I cannulate myself and I have no trained helper, if I were sick or injured, it might be a problem. As long as I was able to do it, I don’t think the dialysis nurses at the local hospital would mind though. They are all part of the same organization as the dialysis centres and the Home Dialysis Unit.

I wish your husband a speedy recovery.

Pierre

15

Pat, Glad hubby is going to be OK. It’s also great that you are such a good advocate.

16

Maybe it’s you women that are better at that. Whenever, wherever, I just show up and do what they tell me :slight_smile:

I did bring my buttonhole needles though one day when I had to dialyze at the acute dialysis unit in the hospital. It didn’t pose any problem at all for them.

Pierre

17

Hi Pierre,
I too do not like his BP that low but it is a constant battle between the caridologist and the Nephrologist as well as care team. The Cardio man wants his bp lower as long as he is not simtamatic. That bp that morning actually was on the higher end of where the cardio guy wants it.

I tried to call hubby to tell him to stay home that day but he already left.

He can not drive until the cardio guy says ok.
Although sometimes things happen for the best. Being in the hospital for 2 weeks and being on a strict diabetic/renal diet allowed him to loose some real weight and his blood sugars have been running almost normal.
His insulin was reduced to 1/3 of what he was taking and I think he now realizes that portion control is the key.
I am just greatful he is ok.
Things could have been a lot worse.
I still have him with me.
Pat

18

Wow, that was scary!! :shock: So glad it wasn’t worse, hope he continues to do well. I know he is so grateful to have you care for him.

And thank you, Pat, for being an inspiration – I am forever grateful to you for letting me know early on that I needed to be informed and take an active part in my husband’s care. If I had not had the Internet, and all of those here so willing to share their knowledge and experience, I do believe my husband would have lived a much shorter life of much inferior quality compared to what he now has ahead of him. I can’t thank all of you enough.

Lorelle