Among patients with kidney disease, it is not uncommon for me to open a discussion on dialysis and kidney transplantation. It’s often uncomfortable, particularly for those seeing me for the first time. Some have seen other doctors, some have an idea of what is going on, while some are caught completely by surprise.
It’s a challenge even for the most experienced physicians. Most know how to diagnose and treat, but to phrase it in a way that can be easily understood, to make the daunting path ahead seem less intimidating — these are the things that I think all of us could improve on.
Patients should also be prepared for this discussion. Here are some things to know about advanced kidney disease.
First, the doctor who informs you that you may need to prepare for, or begin dialysis, is never the bad guy. In fact, this may be the first physician to have the gumption to come clean and just tell you the truth. Communication is a two-way street. Patients may not understand medical jargon, but doctors don’t read minds either. Be honest with your medical history, as well as how all this makes you feel, so that we can better understand what you need, not only from a medical perspective, but from an emotional one as well.
For the majority of patients, a kidney transplant will be your best option. Yes, the upfront costs can be expensive, but remember it’s an elective procedure and there is time to prepare. Use this time wisely to prepare not only financially, but also logistically and emotionally.
Dialysis is not your enemy. A common negative response by someone hearing about dialysis for the first time is how they know someone who died after starting dialysis. Remember that dialysis is there to save your life because your kidneys no longer function at a level that can sustain you. If none of those patients who needed dialysis actually had the benefit or capability to do so, then they would have left us much earlier.
“Can I do my dialysis twice a week or once a week instead?” There used to be a simple answer to this, and it was “no.” Now it’s a little bit more complicated, as twice a week dialysis is being studied as an option for patients who still have some kidney function left. But let’s assume the patient has really bad kidney function with signs of needing chronic dialysis. Then the answer is no, at least medically. The rule of thumb is that dialysis approximates about 20 percent kidney function (at least in terms of cleaning your blood and removing excess water, but the kidney does so much more). So, two times a week is close to 14 to 15 percent and once a week is about seven percent. This likely accounts for the difference in life expectancy when comparing dialysis patients in the Philippines (two years) and abroad (five to seven years.). What I tell patients is that I can’t tell them that two times a week is the same as three times a week, because if it were, then I wouldn’t even offer the latter. You’ll see lots of patients on dialysis two times a week for reasons outside of the medical, mainly financial and logistical.
Be open with your doctor about financial issues. There are ways we can help you save on your medical expenses, maybe even enough to get you that third regular dialysis session. Ask them to review your medicines because this can get really expensive really fast. As your kidneys shut down, you’ll need medication for your phosphorus, for the acid in your blood, iron and “epo” for your anemia, vitamin D and other drugs for bone issues that develop as patients go further down the kidney disease stages. This doesn’t even include your BP meds, your diabetes meds, for your cholesterol, etc.
In these cases, I thoroughly review the meds my patients are on. I remove the unessential and advise my patients to inquire from their other doctors if there are cheaper alternatives to their prescribed ones. You’ll find that you’re not really giving up much in the way of efficacy. Truth is, you’ll probably live longer and do better by getting that third dialysis session each week than you would by taking expensive versions of certain drugs.
So talk to your doctor. It’s a lesson in life and sociology each time I hold clinic. Both patients and physicians can still find ways to answer some of medicine’s more difficult questions. We just need to look in the right place, which is often just across from you where the other person is sitting in that clinic visit.