I've always had anxiety and it was well managed with therapy and meditation. However, I think since my last appointment with my Nephrologist and hearing of a prospective preemptive kidney transplant in the next three years, my mind really started to spiral. I'm hyper vigilant of every feeling and sensation in my body that I've ended up with various doctor visits where I ended up being totally fine, yet I went in thinking I was going to die.
I have Stage 4 CKD and GFR is 25, so I intellectually know my little beans are still functioning but knowing they're on the road to getting worse is frightening to me. It's been really frustrating, and I'm trying to be my own support system but it's been really difficult especially when I feel like other people around me think I'm overreacting.
Any advice is much appreciated ❤️ Thanks for hearing me out.
Written by
MysticAlpaca
To view profiles and participate in discussions please or .
You have every right to feel overwhelmed and scared. CKD is no joke. I do have advice as I know how you feel. There is a lack of control with this disease, but you can get control. I was told I would be on dialysis in 6 months, and it was 6 YEARS before it was necessary. I saw a renal dietician and did a very structured diet. It was the best thing I could do and I was at a much lower GFR than you. I will not prescribe a diet as they are different for each person. But I watched protein, potassium and phosphorous. I do not have a salt issue and no edema, but I still limited it. I exercised and lost some weight in the process.
I also became very educated on CKD. I read a lot of medical journals and serious papers on CKD. Be ware of scams and BS about miracle cures. There is none. There are classes you can take on line from both NKF and AAKP. Become familiar with those two organizations. They are terrific.
Talk to us here about your fears. People do not have a clue unless they are going through it. There is also a program from NKF where they hook you up with someone your age or close who is having the same issues. It was also very beneficial and have had two great mentors. Now, I mentor. kidney.org/treatment-suppor....
Hello Bassetmommer, Can you provide a reference for the dietician you utilized? I have been on a search for over a year for someone to provide me a structured meal plan. No dietician seems to be able to provide that for me. How can I manage my condition when no one offers assistance for my needs as a CKD patient? I appreciate any replies.
I am not sure if she is taking clients long distance but get of hold of her and see if she has a recommendation for someone in your area.
I want to add something here. I am just as troubled as many are. My anxiety is through the roof some days. I have been on this roller coaster now for over 20 years. Just when I think I have things in control, something else happens. If you read through other posts, you will see how common this is. When I decided to start dialysis, I went into it blind. The last year has been one of the worse ones in my life. I swear, just when I think I have it down, something else happens. The alarms are terrifying because I did not know what to do and you are trapped. I had a lot of issues with my fistula. For the last three months, things seemed to be ok, but now I am having mechanical issues with the machine, and they cannot figure out why.
On top of this, I had to lose weight, and I did, 30 pounds, but it was not sufficient. Because when I went to get measured at the doc, I lost two inched in height. I have no idea how or why other than I have Psoriatic Arthritis. But is raised my BMI too high again. So now I am scheduled for Bariatric Surgery in early January. Talk about a new set of issues. I have to manage a renal diet and a bariatric diet at the same time and they are in total conflict of each other. One is high in protien and dairy and the renal is not.
What helped me the most was having an experienced mentor who knew exactly what I am going through. NO doubt, this was the best thing. I have one now, even though I am a mentor myself, to help me with dialysis. She has been on dialysis for 27 years. She had one transplant when she was very young and if eventually failed. Talk about strength. She also knows tricks to help me with alarms. It is a great relationship. I was embarrassed the first time I used a mentor when I was first diagnosed. But it really helped me. My current mentor is a sister from a different mother.
Do not feel bad, and this is for everyone, about needing help. I am a very independent woman who had to be in control. Well, there is no real "control" with CKD. You never know what can happen. But do the work, and it could be amazing. Look at Barbara's post below. She has done such an amazing job.
I leave you with this one trick.... and it sounds funny, but it works. When you start to feel like "yikes, I'm losing it" grab your ear and gently but firmly pull down. It triggers and calms the Vagus nerve. Then massage outer ear. I know it sounds silly, but it does work. Here is a website about it. sensemassage.co.uk/blog/111...
Thank you, I am verbose if nothing else. I have now had anesthesia twice in three years. Once for the fistula and second for a endoscopy . Everyone knows that I am a stage 5 CKD patient, and they use the appropriate knock out juice. I read this
Increased risk:
Patients with ESRD have a higher risk of complications during surgery due to factors like cardiovascular instability, electrolyte abnormalities, and impaired drug metabolism.
Careful anesthetic selection:
Anesthesiologists need to choose drugs that are minimally nephrotoxic and have a shorter duration of action, often opting for agents like propofol, isoflurane, and short-acting neuromuscular blockers
I have an actual face to face pre-op with the anesthesiologist 8 days prior to the actual day of surgery. They will figure it out. Oh, and it turned out that the CPU on my Purflow (dialysis machine) is shot and now needs to be replaced. It's always something.
Hello Bassetmommer, I appreciate your kind and encouraging words, and helpful feedback that will get me on the right mindset. Right now, I’m watching my protein and sodium intake. I have type 2 diabetes that is well managed with intermittent fasting. I asked my nephrologist if I can get referred to a renal dietician because I didn’t know if I had to modify my potassium and phosphorus. But he said he would recommended one when I really needed it. So, I’m optimistic for now, and I’m grateful I stumbled upon this group for mutual support and reassurance. I’ll be looking forward to classes I can take online like you mentioned. 🙏🏽♥️
I'm with you. I'm in therapy which helps. But I give myself a set amount of time to wallow, maybe a day or so. Then I shove it away and keep moving forward. It's hard because I'm scared out of my mind too.
Support systems are great, but they don't understand how or what you are going through. I think any chronic illness affects your mental health, but more with kidney disease because those things aren't cleaning you out like they should be. Talk here, and tell us your fears. the people here are lovely!
Hi jflorax! Thank you for reaching out. I will try that the next time I start to feel anxious. That way I can keep myself from spiraling. It’s similar to the coping technique of “putting your worries on a shelf” I used to teach my students when managing their strong emotions. I definitely should practice what I preach 😅 I appreciate your time and encouragement and will look forward to coming back to this community.
We have all been where you are and you have come to the right forum to fight those fears. Listen to Bassetmommer - she gives wonderful advice and you can go back to see some of her earlier responses to others. I am sure she covers many things you are feeling right now. She was a godsend to me when I found out I would need a transplant. That said, it is not a one and done. Fears and anxieties come and go along your journey. But with others help you can push through them.
My GFR was 20 when I learned I should be reviewed by a transplant team. What I discovered on here was that food matters, but I needed a renal dietician to guide me. At your level that is the best advice I can give you. I credit my dietician with keeping me alive this far, and the use of Ozempic (to help me shed very stubborn lifelong weight issues). It took several tries to find the right one for me and we did telehealth meetings. They will not give you a meal plan, but a good renal dietician will meet with you monthly or quarterly and review your labs, then tell you adjustments to make in what you eat accordingly. As Bassetmommer said, it is keeping a balance of these components in your diet. You can find the info on your own if you cannot find a good dietician to relate to, but I highly recommend the help if you can find one.
If you have family or close friends it is important to share this with them, even though they may not take it well. You may need to educate them in small chunks and let them know specifically what you need from them to help you through this. There have been many ups and downs, anger, frustration, fear, lots of crying but lots of prayers and thankfulness too. We are here for you and wish you the best!
Hello! Thank you for taking the time to reach out and share your encouragement and experience. I asked for a nutritionist from my nephrologist and he said he'll recommend one when needed. Since my labs are looking stable it seems like my current limitations on protein and salt are working. It looks like a balanced renal diet is really important in keeping my kidney's stable so I will consider looking for a renal dietician in the future.
And you are right about fears coming and going. It's taken me a while to reconcile with what's happening to me. I felt a lot of shame and guilt when I found out, as if it was my fault and that I've failed myself for having this disease. But now I know that's not true for myself or anyone. Life happens and you have to trek through it with grace and courage. Wishing you well and the best in your journey ❤️
I have CKD, not sure what my eGFR is because my next blood test isn't until January. I am a democrat in the U.S., and trying to be optimistic but it's hard since Trump was elected. I have hives that are driving me crazy and don't sleep well.
You asked about how we control negative thoughts. I am not doing well on that front. I meditate and breath deeply and relax tensions in my body, and but that just makes me aware of how sad I am. I am optimistic that I will find a way to be happier, but I'm not there yet.
Since your anxiety is around CKD, please follow all the advice about research and diet and nutrition and weight loss. I panicked and did a lot of research when I was first diagnosed, went strict vegan, a diet I've learned to love, lost a lot of weight, got my eGFR up, and in general don't worry about it anymore. I am sure I will worry for a few days if (when) my eGFR goes lower, but knowing I'm doing all I can takes existential anxiety off the table. Also it took time, at least for me, for the full understanding that I am mortal and things will change in ways I can't control to trickle down along all my nerves and really penetrate.
Please post about your progress. Here's to optimism and happiness.
i have been 3b since 2019 and my egfr bounces around like a yoyo.im currently at 41 percent but that may change with the antibiotics im on at the moment.i take it one day at a time and dont stress out.there is someone nuch bigger than me in charge of that .
Hello from Spain.I am a classical homeopath with CKD for a few months now.
My kidneys were fine in April and now - due to urinary retention- my GFR is already 33.
After struggling this summer with many issues concerning this disease- physical and emotional- now my state of mind is pretty good since I decided to study thoroughly my own case- as I do with my patients- and I found a homeopathic remedy which is helping me a lot both mental and physically.
Homeopathy has been considered many times over its history of 200 years as quackery, but the reality is that is a noble medicine, something I witness everyday in my daily practise.
My best wishes for you in your journey to keep this - our disease - under control in all senses.
Me too , anxiety spiralled through the roof , when I discovered how it was damaging my kidneys further. Very new CKD . I'm doing everything to keep anxiety at bay as it has a knock on effect on blood pressure and heart rate , which in turn affect my kidneys. I've been doing mindful meditation , trying to relax more, I hope all gets better for you x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Been a bit...
Newbie and overwhelmed. Waiting on referrals to be finished to see a nephrologist. 
How do you manage low phosphorus diet?
Almost 23 
CKD 2 and relationship 
