I was diagnosed with CKD about 10 years ago. For the last several years my baseline GFR has fluctuated between 31 and 36. As long as I was stable The nephrologist and I were pretty happy, at least satisfied. When I saw him in March, I was at 31. This wasn’t a new number for me but he said that if it went down a notch or two the next time I saw him we’d have to talk about our options. He said realistically that is as young as I am (63) that it would be in evitable for my number to drop
Fast forward to 1 May. I was so weak and dry that I couldn’t get out of bed. I called for an ambulance and was taken to the emergency room. Since my creatinine level usually hangs around 1.5 the emergency room dr. had me admitted to the hospital because it was 3.5 and I was severely dehydrated.
No one could explain the sudden drop in GFR from 31 to 15. I was being treated in the hospital by a nephrologist from the same practice as mine, which gave me comfort. Nothing they tried for an entire week had any effect on my numbers. This nephrologist, however, wasn’t about to give up. After talking for a while I mentioned that I had had a series of UTIs since November. She asked me what kind of antibiotics I had been taking. I just told her that I took what they gave me without noticing. I couldn’t imagine my regular nephrologist doing what she then did: contacting the two pharmacies are use and getting a list of all of the medications I have taken during the course of the past six months. Her working Terry now is that it was the antibiotics that have affected my kidneys. The week after I was discharged I had more bloodwork but my GFR was still 15. The next week it had gone up to 25. This week it was 26 and I was pretty disappointed. But it’s moving in the right direction, I guess. I’m going to switch to her permanently because when I leave her office, I leave with hope. Every time I left the other doctors office, I left in tears.
Since my discharge from the hospital I’ve also seen my renal dietitian how drastically lower the amount of protein I should consume ( from an allowable 60 to 40) and obviously with these numbers need to become quite strict in other areas.
Here’s this bottom line : I am scared. At one time I know I was considered a transplant candidate. I would love to have a transplant. I have three younger brothers Who generally don’t give me the time of day. They live in three different parts of the country. I live in the southwest desert of Arizona; hence, The difficulty staying hydrated. I know I should talk to my doctor before doing or saying anything. What I fear most about this, is rejection from all three. My mom has dementia and a long disease which forces her to be on oxygen 24/7. I am her primary care giver. I feel like I’m stock between a rock and a hard place. It also doesn’t help that I have bipolar disorder – but the good thing about that is seeing a therapist once a week and a psychiatrist every four. Of course, they know nothing about kidneys but they don’t know about the situation with my family.
No friends, no family, no husband or kids. I just feel lost and alone.
(Please excuse any spelling or grammatical errors since I dictated this into my phone.)