I’ve been struggling with s.3 CKD for about a year and a half now, and I think it’s time to turn to the community for some help. This is still entirely new to me, and though I spend HOURS online trying to find remedies and diets and ways to modify my life to be kidney friendly, I am still struggling no matter what I try.
My medication regiment has been Torsemide (a high dose) and Losartan. After another LONG struggle to figure out what was aggravating the heck out of my migraines to the point where I had to go on leave from work (I had a migraine that lasted two months, no joke, no one could figure out what it was from. Until my mother said “Maybe it’s one of your meds.” Mother knows best, even when you’re grown!) it turned out to be the Losartan that was causing the migraine exacerbation. Switched to Lisinopril maybe two months ago, and lo and behold, it’s doing the same thing. There is apparently one more medication my nephrologist wants to try me on.
The OTHER issue I’m having is with the swelling/edema. This comes along with the CKD, I know, but NOTHING seems to relieve it. Not the Torsemide, not the Losartan, not the Lisinopril. I have modified my diet where I eat very low sodium. I’ve decreased my intake of fluids (both in the foods I eat and what I drink) to the point where I go around daydreaming of a glass of water all day. Nothing. This isn’t just some swelling. This is can’t put my sneakers on, can only fit into my scrubs, can’t bend my legs, can’t see where my ankles turn into my feet, joints in pain, swelling. Now, it isn’t just my legs, it’s moving up my back. You can push your thumb into my lower back and get a significant indentation. I’m around 109lb soaking wet, and my weight has increased to 135, and has gone as high as 138. I work in an ER, and one of my ER doctors told me that this isn’t normal. I have had other tests to rule other things out- had ultrasounds of my legs, went to see a cardiologist, etc… The weird thing is, when I first went on the Lisinopril, the swelling all but vanished completely. I don’t know if it was because I was throwing up constantly from the migraines and was dehydrated and in combination with taking the meds my body was able to absorb it more or something, but it only lasted maybe two weeks before the swelling started again.
I have an appointment with my Nephrologist this friday, but I’m at the point where I think I need to go and see someone else. I have brought up this topic of the swelling again and again, but she doesn’t do anything about it. She told me “You have to accept some of this swelling.” Ok. Got it. I can accept SOME swelling, but this is not normal. It’s making my life miserable. I can’t even fit into shoes anymore, even with compression stockings. This isn’t normal and my doctor is making me feel like this is something I have to accept about my life now and I need to stop beating the issue. ALL the research I have done suggests that this isn’t normal either. The medications should be helping, but they are not. At this point I don’t know what to do, but I feel that there is SOMETHING more that can be done, something that can be tried. Only I am so new to kidney disease that I don’t know what kind of treatments to talk about with my nephrologist, or a new doctor if I go to see one.
I have other questions, also, that are going unanswered, and when I ask my doctor, she literally tells me to go do my own research. (Cool, thanks.) She told me that all diabetics will eventually need kidney transplants (??) If all the medication I take to protect my kidneys gives me debilitating migraines, and I have to go around with my legs and back so swollen that I can barely bend anything, then why can’t I get a kidney transplant right now? Why do I have to wait until I’m in kidney failure (which according to some may never happen, or take years and years) in order to get a new kidney? My blood work tips me just at the stage 3 point, there should be no reason my life is miserable like this.
So… Has anyone else had a struggle like this? What can you guys recommend I do?