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.)
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Crinkster
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Sorry to hear about your recent troubles. I really don’t have any words of encouragement. I’m in the same boat. What’s worse is the fact that I have no insurance. And no money. I’m extremely depressed.
I just read your two posts from yesterday. Sorry you're depressed, you should talk to someone about that because it sounds like it's due to more than your GFR being 65. I was hoping for a bit of insight, encouragement and support since I have no one in my life to provide it. Thanks at least for responding.
The good news is that your egfr has gone back up. I like you have family that don't care, my egfr is 22. 26 last time. I believe we have to stay positive and take something good out of every day. Keep drinking good clean water and cut out processed foods. I know it's not encouraging but there's always dialysis, some people on here have been on it for 15+ years and they're getting by. Good luck to you ☺
You’re right. I absolutely must look at the glass half full. I think the thing that scares me the most is being completely alone if or when I have to face dialysis. It’s pretty sad that when I crave interactions with others I go to my favorite lunch cafe or Walgreens where everyone knows me. That’s pathetic. Even when I see people at church or a Singles club I belong to everyone asks about my mom and absolutely no one asks about me.
Please try to look at the positive. I know it's hard. I am on transplant list and have a large family, which only a handful offered to be tested but never went. So I can relate to your pain. I thought I was the only one with a family like that but the more I hear, I realize I'm not! There are many advances being made in this field. The bionic kidney, kidney regeneration, new meds, new type of dialysis, wearable kidney. All these things are just on the horizon. Don't give up hope. Please reach out anytime to any of us! You are in my prayers. God can do anything!!
Thanks for your comment, although I would appreciate other words, such as ‘disappointing’ or ‘disheartening’ than your choice of word, especially on one of my threads. Thanks for understanding.
Bunkin, thanks for your encouraging words. Indeed, families can be complicated. All three brothers tell me (occasionally) that they appreciate what I do for our mom. One brother and his adult children visited in April. When I declined their offers of pizza and KFC I wanted to make sure I wasn’t simply being difficult so I told them privately that my kidneys were failing. His response (since I’m overweight) was, “We figured you were on a diet. No problem. “
You sound like a nice person looking after your mom like that on your own which by itself must be difficult. Glad your GFR went up some at least. ...about protein, I give my mom some COQ10 which I think are enzymes which help digest protein so the kidneys don't have to work so hard. You could ask your doctor if it's ok to take that...pretty sure it can't hurt. Hopefully you have some fav things to do that can make you smile. For example, I've recorded some clips from tv shows & movies on my computer so they're available when I'd like something to smile at. For example if I'm watching netfix and see something i like, I just use camtasia to add it to my clip collection...and there's always those funny pet videos on youtube...maybe that's not your thing but hopefully you have easy access to something you like to do for a little pick-me-up. Hope you can find a bit more companionship or support and hope your bipolar isn't too out of control...that's good that at least you have a therapist to talk to.
Thanks so much for your reply, Jack. You made some wonderful suggestions. There’s so much more I want to say right now but I am a little depressed and don’t know where to start Most of the time I don’t know whether to post in this kidney disease group, the Alzheimer’s group (because of my mom) or the mental illness group. My life seems to be so intertwined among the three I don’t know which way to go. It’s just a freaking mess.
Hi Crinkster. Taking care of your mom by yourself is more than enough to deal with. I get very anxious when my mom has health issues, depending on what the problem is. Luckily she is doing ok now. You definitely need to be able to take an emotional rest stop every so often and also have the knowledge that you can get to that place of relaxation and or fun. Knowing that you can get back there will help to reduce some anxiety. I think you will need to talk to someone in person to help you in that regard rather than online, although online forums can help with ideas also. If you haven't already, I think it would be a good idea to ask your therapist to help you figure out how you can add moments of relaxation, fun, and support to your everyday routine until you get to the point to where you feel you can handle your current situation without being chronically stressed...that will be something unique to every person, depending on what activities can generate feelings of fun or relaxation for yourself. I will sometimes take a break to watch a few fun video clips I've collected...or maybe a walk in bare feet thru grass somewhere you like on a sunny day...I have noticed that some people can get thru very difficult situations with a smile on their face and easy laugh. I'm not one of those people but wish I was. Hope you find something to help you out!
I can relate to your fear. I'm a registered nurse w kidney disease. My Gfr is 24 after dropping 10 pts. A serious infection was accidentally discovered during a minor procedure in one of my kidneys. I decided to return to my old nephrologist in another city bc I felt secure w him. He told me I had to stop worrying. They dont consider dialysis, etc until 15-19. That I could b fine for yrs (I'm 69). I have no relatives to ask for a kidney. I believe him. He literally saved my life 7 yrs ago. Stay strong.
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