I have everything to put up with - need some reassurance

[fartikins]

Hello - I live in the UK - I am early 70,s and have just been diagnosed with a GFR of 16. I have T2 controlled with insulin. I also have clinical depression and insomnia -controlled with Mirtazepine.and Venlafaxine. I take zopiclone at night along with diazepam for sleep. I am terrified beyond anything - I cannot keep off reading on google about this and it has become an obsession now.I am due to see the nephrologist in a months time and all this waiting is killing me - I am terrified of dialysis - I have read that you itch non stop - that you are constipated beyond reason and that you cannot drink much at all and I love my water. That sounds like a death sentence. I had the chance to go to New York with family but I do not want to go and I would not be able to get medical insurance anyway. I can't bear to see 'normal' people -its too much to bear so I keep myself isolated.Is there any kind soul out there who could give me some sort of hope - I can't stop the medication as the depression would be too much to handle - I feel so trapped and helpless.

[Bassetmommer NKF Ambassador]

Hope is there but it starts with you. Attitude is everything. First of all, we ALL have been where you are right now. There is a natural grievance period with any chronic illness. Don't feel guilty about it or let people tell you to get over it. But what you do with it will make the difference. You can give in to all the negativity and give up... or you can fight. It is hard work, but if hope is what you want, then start to fight when you feel you can. The fight is doing everything you can to keep the GFR level you have. I am not sure what caused your CKD. You say you have T2D and that may have been a contributing factor. Keep it well controlled. Do whatever you can to try to lower your A1c. Losing weight can really impact that if you are overweight.

Next, make sure that all the medications you are on are safe for the kidney. Have a pharmacist or your GP do a review. This is critical. Make sure everyone who prescribes to you is aware of your CKD. You really have to fight for this one because some doctors will say, "well, it's not that harmful." But when you have a low GFR, you get toxic much quicker, and medications build up quite easily.

Then take a look at your diet and lifestyle. This is something you really have control over. If you can get a referral to a renal dietician, it can make all the difference. I was told over four years ago to prepare for dialysis within six months. I have stayed off dialysis with diet and exercise. If you cannot see a dietician, read as much as you can about healthy foods.

I won't overload you here, but here's some basics: Lower your protein intake. Stay away from red meat, sausages and other processed meat products. Better for you would be small amounts of chicken and fish. Dairy can be harmful if you consume a lot. Processed, canned and some frozen foods have a lot of additives and are harmful for the kidney. Remember, you only have 16% of the filtering process going on so when you put a lot of additives and "garbage" in. the kidneys cannot handle it like someone who has normal kidney function. You over tax the kidney and the decline continues.

Drink water, not caffeinated drinks. Limited coffee and tea are ok. Watch what you put in it. Stay away from salty foods such as pretzels and other products that have a lot of salt in them. This is the best thing...read labels. The cleaner you eat, the better off you will be. The more you can get away from animal protein, the better. Beans, veggies, and natural is the route to go.

Read through some of the posts on here. There is a ton of information. AND you will see, there are a lot of us with Stage 4 CKD that are maintaining our numbers and having a glorious life. YOU have to put the work in.

Best to you and you are not alone.

[Room258]

I am in a different situation than you, but want to encourage you to have faith in Jesus, and take life one day at a time. Try not to worry is easier said, than done.

[pheebee]

I think Bassettmommer's advice is excellent. Making the changes she has advised will help you feel more in control and this will improve your mood.

I want to add that it's easy to fall into a negative spiral and it is likely that your GP will just keep prescribing more medication for you, personally I would ask for a medication review, you are on diazepam and zopiclone which both do the same thing, you shouldn't need both. You are also on two types of antidepressant, again you shouldn't need two if they get the dosages right.

If you have a weight problem mirtazepine can make it worse.

[WYOAnne NKF Ambassador]

I think that Bassettmommer's advice was fantastic. If you cannot see a dietician the NKF has some CKD diet help. There is a free recipe app. Go to kidney.org/myfoodcoach

My advice to you is to take one day at a time. Many on this site, Bassettmmer included, have been able to stabilize their CKD with changing their diet. Start eating a kidney friendly diet. Stay hydrated and have your primary doctor or nephrologist double check all of your medications making sure they are also kidney friendly.

I am 22+ years post transplant. I firmly believe that I am living well, at least partially, due to my positive attitude. I was diagnosed with FSGS back in 1992. I am not diabetic. My CKD was due to strep throat I had when I was 9 years old. About 2-3 months later I was in the hospital with a nephritis - an inflammation in my kidneys. 30 years later I was in kidney failure. Talk about LIFE NOT BEING FAIR! But I did not give up! I fought back and would do anything to live. I was very blessed by a deceased 16 year old donor, in October 1999. I take care of myself, at 71, do what my nephrologist tells me, take me immunosuppressant meds and do labs quarterly. Life is good!

Have you thought of a living donor transplant?

Take care and keep us posted.

[snapqueen]

There is a lot of good advice here. I was feeling down and frustrated then I had a visit with my grandchildren. They motivate me to keep fighting as well as my daily prayer life. Daily I put on my headphones with inspirational songs and get walking. You are not alone. Find what motivates you. Good luck.