I just recently found out I am in Stage 3b. I am a 71 year old female. If I hadn't pointed out my unusual lab results to my family doctor, I might still not know. I had been told for years that they were "going to keep an eye on it." Yet no one did. I had to request to see a specialist.
Now that I have, I don't know much more. I have been scheduled for a sonogram next month, prescribed Vitamin D, and told to cut our salt and red meat. I have done both. I have also read everything I can find on the internet, but there is a lot of miscommunication out there. I am also trying to watch my potassium and phosphorous intake. Since my doctor visit, I have eaten more apples and eggs than I have ever eaten before.
I feel lost, and scared. I am trying my hardest to remain positive, but it is difficult when you have been told that your lifespan has been shortened. I have a few friends I can talk to, but I fear that even they will get tired of talking about kidneys, and will start to avoid me.
Anybody else feel this way or have any suggestions?
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JESUSHASGOTTHIS
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I feel your pain. I was told also they would keep an eye on things. No one did. I'm 2 points above being on the transplant list. I would suggest an appointment with a dietician. I'm waiting for her to call me, but there are so many diet restrictions I feel like I need a professional to help me with my new diet. Good luck and God speed.
I suggest going online to you tube and type in Dad vice tv. They can help with videos and dr. RosinskyIs a kidney doctor. He's on there alot. He relieved me from being scared and confused. I hope this helps.
My first recommendation to you is switch doctors. The fact that they have not referred you to a Nephrologist is negligence. Old school was to wait until stage 4 when it is too late to do anything. If you do not need a referral, look up nephrologist in your area and make an appointment.
Whoever told you that your lifespan has been shorten is wrong. If that was the doctor, again, just another reason to run, not walk from him/her. It is not necessarily true. There are many things you can do. Diet is the main thing and you are already learning about that. If you can get to a renal dietician, all the better. Low salt, no read meat, lots of veggies is the basic plan.
You did not say if you were diabetic. Even so, there are some new medications out there that are proving to slow the decline of kidney disease. Your doctor should be aware of them. Farxiga is one and I am not sure of the names of the rest.
And...keep this in your head at all times. You can control this. YOU are in charge of your disease, not the other way around. Watch your diet carefully. Get some exercise like walking. Drink water, at least 72 ounces unless you have a heart condition. Again this is something your doctor should have told you.
They told me in 2018, (I was in stage 4) I would be on dialysis in 6 months. I did not go on dialysis for 6 YEARS. All diet and healthy living. Remember, there are treatments such as dialysis and transplant with CKD. You should find out where the local transplant center is and what their requirements are. You are not there yet because it is usually a GFR of 20 or less to start the conversation, but it helps to learn about transplant.
You need to look at the NKF website to find out info on CKD. They even have diet suggestions and recipes "kidney.org" Can go to SUPPORT and find reliable information. Even on this site a lot of information is on the right side of this page. When reading replies, click on the column on the right - EXPLORE NKF'S KIDNEY LEARNING CENTER.
Join the group, i.e. finding out about having CKD when its in GFR 3 zone. A lot of people on this forum experienced the same thing. While it can be scary and confusing, know that this news does not have to shorten your life. I was much older than you when I found out and I've been at GFR 3b for about 7 to 8 years. Educate yourself, see a nephrologist, watch your diet, exercise as much as you can, drink your water, and avoid NSAIDS and red meat and dark soft drinks. Diet menus can be confusing as they depend on your labs as well as any medical conditions you have. You will find lots of menus out there as your educate yourself, but not all will be appropriate for your situation. Remember diet to your labs AND your medical conditions. Good luck and stay in touch.
Da Vita web site has good recipes for renal diets. Was in stage 3 for many years. Really important to follow renal diet . Low salt no red meat low potassium and phosphate. It gets rather boring after a while but once you have done regular labs for a while you will be able to eat according to your labs. I have a hard time with phosphate but no problems yet with potassium. Am now stage 4 and just got a fistula in case I need dialysis soon. GFR currently 15. You can have a long life - I will be 84 next birthday so dont listen to that.
I think EVERYONE felt this way, when they were first diagnosed! I was only flagged up by a GP locum, who couldn't believe I hadn't been referred to a specialist based in my "monitor" results. You are still in shock. After 9 years on this blasted journey, I will give you my advice. First of all, have a good cry about it. You have had a huge shock and you have every right to feel upset. Then knowledge is power. You have already started reading up on diet etc, which is great. Do not rely on your medical team 100%. I am probably being quite controversial here but I followed their advice to the letter, when diagnosed. I was pumped full of high doeses of steroids and my life was hell. When I asked about a plant based diet etc, I was told not to bother. If I had my time again, I would go plant based etc. I have found talking to family and friends, ok but they just don't get it. This community does get it. No matter what you are experiencing mentally or physically, someone on here can relate. I call this my safe place. People on here get it. Some of the members on here have more knowledge than some of my health staff etc. So my advice, lick your wounds and then get on with it. Treat it like a part-time job. Do your research on everything. It will be one step forward and ten back sometimes. However I wish I was given a second chance, when I was first diagnosed. I would have done things so differently. Good luck, you have got this!
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