Some things you DON’T have to let go.

I’ve learned, unfortunately, it is necessary to advocate for your patient. The first two months of dialysis has been rough for my husband. The frequent blood pressure drops, the weakness, inability to walk on his own. The doctor and nurse at the dialysis center kept saying to drink more fluids. My husband did increase his fluids, but he’s not trying to flood himself or feel like a water buffalo. Most times, dialysis patients are told to restrict fluids. He’s been told to increase them, and he’s done so to no avail.

The surgeon who placed the fistula saw us in a follow-up to part one of the surgery. We mentioned my husband’s blood pressure has been dropping frequently since he began dialysis with the temporary port. The surgeon asked if the dialysis center had prescribed a medication to keep the blood pressure up. We stated they had not. However, I took down the name and spelling of the medication.

The following dialysis day, my husband asked the nurse practitioner at the dialysis center about the medication the surgeon mentioned. He texted me to verify he had the correct spelling because he had to spell it for them. Now, I don’t know about you, but I take that to mean the nurse didn’t know anything about the medication. Didn’t sound like she was familiar with it at all. It took a while, but she finally prescribed the medication. And, I say a while, because we went to the pharmacy several times with the understanding the prescription had been sent when it actually had not.

His prescription was for one 5 MG tablet daily AS NEEDED. We thought it meant to take it AS NEEDED when his blood pressure was low. There a few days when it was not low, so he didn’t take it every day. A month in the nurse practitioner told me when I asked to speak with her that he should be taking it daily. I told her we weren’t aware of that because the bottle said as needed, but that I’d have him start taking it daily. She also said he could take it up to three times per day. Now, the math ain’t mathin’, as they say. She prescribed exactly thirty tablets. Apparently, it was a thirty-day prescription. How exactly do you take up to three tablets per day while also taking at least one tablet daily for thirty days if you only have thirty tablets? I’m confused. I was in advanced math all through school growing up, so I would think something this simple would not trip me up. At any rate, he started taking it daily. It helped some, but not completely.

We started reading and found low sodium is often the cause of low blood pressure when patients are on hemo dialysis. He’s already increased his fluids per the medical professional’s instructions. He’s also decreased his sodium and limited the sodium he does intake to iodized salt only per the dialysis center’s guidelines. I never really cooked with much sodium (salt) anyway, so he’s getting very little salt because I’ve decreased what I used. At this point, we’re starting to think we need to do the opposite of what we’ve been told. We add sodium back to the recipes (not a lot, but some sodium). He continues drinking good amounts of fluids. His blood pressure was good four days straight.

After four great blood pressure days, my husband is at the hospital for cardiology appointments as part of the transplant evaluation process for a new transplant. He gets through the first two parts with no problem. His blood pressure drops and they state it’s too low for the stress test. We asked if he could take the pill to raise the blood pressure and try taking it in an hour or so. They stated we need to reschedule. They also state he can take the medication about 6 AM the day of the test. In talking with the nurse practitioner at the hospital, I mention he’s been told he can take the 5 MG tablet up to three times per day. The nurse practitioner mentioned prescriptions are normally for 10 MG. What??

I started to reconcile what I’ve just learned in speaking with the nurse practitioner at the hospital with what we’ve been told by the dialysis center. The nurse practitioner at the dialysis center has told us he can take up to three pills per day, but only prescribed enough for one per day. She has also prescribed half the normal dosage. Honestly, I’m starting to think the woman doesn’t know what she’s doing, knows nothing about the medication, and was scared to prescribe it. We contacted the dialysis clinic and told them what the nurse practitioner said. After a lot of back and forth, the nurse practitioner sent a new prescription to the pharmacy with enough tablets for my husband to take 10 MG (the normal dosage three times per day). I truly believe the change was only made because we wouldn’t let it go.

Since that day, he has taken 10 MG per dose, we have kept the sodium we had added back into his diet IN HIS DIET. He has maintained a normal blood pressure. His stands more easily, and has less troubles walking. He feels the strength coming back in his legs again. My King is heading back to the throne! I see his confidence in himself and his abilities returning.

I’m less stressed and more willing to let him leave home and/or do things on his own. I don’t have to call down the hall and ask what he is doing every time I hear a noise. I’m not as worried he will pass out, fall, and hit his head. I can actually sleep through the night without feeling the need to watch his breathing. It’s been almost a full week of relief!

Aside from his issues, he has also overheard other patient’s conversations with the staff at the dialysis center. One comment was made by a patient that he had to work, and he didn’t want to go to work with his blood pressure as low as it was. He was told to “drink more fluids”. He said he didn’t want to just keep drinking fluids. Another patient also expressed concern about his blood pressure always being low.

I sincerely hope the staff will take not of my husband’s improved blood pressure numbers and make adjustments to other patient’s instructions/prescriptions. I’m disturbed by the simple response to “increase fluids” as though it alone will fix the issue. If my husband were the only one with issues it would be one thing. However, this is not isolated to him. I hope the other patients or their caregivers will stand up for them.

Patients are different. There are lots of patients out there. There is also a lot of information out there for medical professionals to consume. It is possible professionals may not know everything. Do your research, don’t just mention issues with the facility you’re receiving treatments at, mention it with your other doctors. They may know something your treating physicians don’t know. If you find out additional information from surgeon’s, other doctor’s, etcetera, bring that info to the treating physicians.

Some things you have to let go. Some things you don’t. Don’t let it go. Don’t accept that “this just happens” as an answer. Research, talk to other physicians, bring it back to your treating physician. Continued low blood pressure could negatively impact his heart. His heart’s ability to withstand a transplant could be the only thing standing in the way of his receiving a new kidney transplant. If we had left this alone, his heart could get to a place where it couldn’t withstand a transplant.

  • Don’t help them make your patient weaker.
  • Don’t help them ignore your patient
  • Don’t let it go.
  • DO advocate for your patient.

You may get push back. Push back on them. We don’t roll over. We fight! This caregiver life is not for the weak.

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