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?