Chronic kidney disease and being alone

[Flaherty741]

I am 45 years old and I have had Chronic kidney disease stage 3. I am on disability but still have to work part-time to cover my bills. I am tired all the time and have had severe itching but a few weeks ago I started getting horrible pain in the back in my ribcage. I am so depressed and I don't think my family and friends understand that this affects me everyday. I would love to have some people to talk to. Sometimes I like it's not worth going on if this is how am going to feel like this or worse! I am really scared

[Bassetmommer NKF Ambassador]

Dear Flaherty,

Please don't panic. The worse thing you can do is stress. CKD is one of the very few diseases you can control and slow down the progression through diet and life change.

Do you see a nephrologist? Have you seen a renal dietician? Have you taken any classes or learned about CKD and what you can do. All things at your disposal to help you.

No, friends do not always get it. But we are here to support you and help you.

Do you understand your labs? Did they check your phosphorous? Sometimes a buildup of that will make you itch. But by restricting high phosphorous foods might help. There are other things such as medication to help with that also.

If you read through this site you will find many people who are stage four and even stage five who are living vibrant and fulfilling lives. There is much you can do when you are ready.

Hang in there.

[Hidden in reply to Bassetmommer]

Hi and welcome

One of the things you can do is visit the davita.com website and register for a free, 90-minute Kidney Smart class in your area. Take a friend or family member with you so they can learn and better understand what you and almost 40,000,000 folks are dealing with.

You will have to make a lot of changes to slow the progression of CKD but all of it is doable,

[orangecity41 NKF Ambassador in reply to Hidden]

Mr K , want to add that the changes (diet especially) are well worth the effort. (Every once in a while and on special occasions get decadent and get off the diet. )

[Jayhawker]

Flaherty741,

I agree completely with what others have said. They have both given you excellent suggestions. So instead of sharing more suggestions with you, I’ll share a little about my own journey; it can help to hear personal stories sometimes🐶

First, I grew up in a family with a father who had chronic kidney disease. I never knew him when he didn’t have CKD. He worked full time as a band director. He also had a dance band that played for various events, eg, weddings, on most weekends. As is the case with most band directors, his teaching job was about a 50-hour a week job which included marching band performances at football games and parades, evening concerts, pep band at basketball games, music lessons and so forth. His dance band practiced on the weekends and played for various events throughout the weekend. He also tuned pianos and repaired band instruments. He did all of this with CKD.

He and my mother raised three children. They put all three through college: one with a bachelor’s degree, two master’s degrees, and one doctoral degree. He and my mother welcomed 4 grandchildren into this world.

He and my mom were an incredible team. My mom prepared renal-friendly meals that conformed to his dietary restrictions while he took his meds. They both focused on doing exactly what his doctors said. Then they lived full lives. Mom’s dinners always included several vegetable options. My dad would choose those that fit within his dietary guidelines. The rest of us chose what we wanted to eat within what was placed on the table.

We camped nearly all summer many years. Mom cooked our meals on a propane cook stove. And, yes, she devised ways to prepare renal friendly meals without a refrigerator as we camped all summer.

My dad lived many years longer than his nephrologists expected. I’ve always thought that that was because he did what his doctors said and he had a great sense of humor and attitude. He showed my siblings and me how to live well with a serious chronic condition.

In March of 2013 I was formally diagnosed with CKD after about 18 months of concerning renal panel data. This is nearly 7 years ago now. I’ve experienced several severe plummets in my renal function followed by modest improvements and then stable data for 2-3 years.

In January of 2017 my kidneys suddenly plummeted into Stage V renal failure. I’ve been in renal failure since but am still not on dialysis. I’ve recently been waitlisted for a deceased donor kidney.

Like my father, I have continued to work throughout. Unlike my father I’ve had severe anemia as a side effect of my CKD. That was initially challenging to get under effective treatment. During that phase of my journey it was difficult for me to keep working—but I managed. I, too, live alone. I’ve never married and have no children. I’m also the last person alive in my family.

I devised several systems I have used to get a handle on the renal diet, cook, and take care of myself even when experiencing severe anemia not under effective treatment, and while working. My mother actually left me her hand-written cookbook with the family recipes. In the margins of that cookbook I see the modifications she made in family recipes to meet my father’s potassium restrictions and so forth. She had no idea I would develop CKD when she left this to me. But what an amazing family treasure for me now. I’ve literally entered all her modified recipes into an app I use to track my data. Her calculations were 100% correct. And she was Old Order Mennonite so only had an eighth grade education! Incredible, just incredible!!

So yes, we can live a good life with CKD. We can work full time even when on dialysis. Attitude is critical. We need to learn as much as possible—we can’t take care of ourselves well if we don’t understand what our kidneys need. We just need to make accommodations to support our kidneys and our overall health and stamina.

I clean my house differently now; I can no longer do this all at once on Saturday mornings. Similarly I cook differently. I now cook things that are carefully planned to meet my dietary restrictions. I do nearly all my cooking on the weekends. It’s then ready for the next week. I’m often too tired to cook for myself following a day of work.

Many of my old friends more or less faded into the background as my medical problems evolved. But I continue to make new friends, and my new friends have only known me with CKD. My CKD doesn’t disturb them; they’re here for me.

And finally, I have to keep things as steady as possible. But when I’m under the weather or more tired than usual, I listen to my body and modify my schedule to let myself rest a little longer, etc.

This forum has been very supportive and helpful for me. I’ve really appreciated these people very likely in great part because I’m the last person left living in my family. So don’t hesitate to reach out. You really aren’t alone; we’re all here with you🐶🐶

Jayhawker

[Cape_Cod_Sharon in reply to Jayhawker]

BRAVO! to Jayhawker YOU are an inspiration ❤

[Jayhawker in reply to Cape_Cod_Sharon]

I actually think we’re all inspirations🐶 But, thank you for your kind words 💕

Jayhawker

[Maviayme in reply to Jayhawker]

💜💜💜

[Bunkin in reply to Jayhawker]

You are awesome!

[Eric-1996 in reply to Jayhawker]

2 years after posting your comment on here I'm hoping that you are OK and feeling great!What an incredible family you had ,what a parents ❤️

I wouldn't worry about (which sounded you are not anyway) your old friends!

What a fighter you are mate!!

I enjoyed reading your comment mate.

👍

[Jayhawker in reply to Eric-1996]

Thank you for your encouraging post. This forum has been such a wonderful source of support!

Jayhawker

[daxielovinglady]

Do you tell your consultant exactly how you feel ? Ask about seeing a renal counsellor, one helped get my head in the right place . It's your body-you know how you feel .

[Bassetmommer NKF Ambassador]

Along with this community, there is a peer mentor program designed for Kidney patients. It is a place to have a mentor assigned to you who will be there for you specifically with your questions and support. We do not replace your medical team, but are patients who are trained to listen and be supportive....because we walk the walk.

It is free and they will match you with someone who has similar issues. It is really a nice thing to do and know someone is in your corner.

Here is the number 855-653-7337 and here is the website to sign up

kidney.org/patients/peers

[HealthBuddyMelissa]

Great advice from all and I agree with Jayhawker we can live awesome lives even with a chronic disease. So many people just choose to wait for dialysis or just give up. I am with Jayhawker I intend to live my life how I want until the day I die. I have kind of always been that way but even more now that I have CKD. I continue to read and learn everyday with the hope of ulitmately figuring out how to cure my kidney but the more I learn the more I realize I am 50 and a half and my kidney is probably where it will stay hopefully with no further decline. I know that is optimistic but I am an optimist by nature. I do have to say when I initially got sick and I was very sick I thought I was going to die and never live another normal day again. Then I put my big girl pants on and went on with my life. I don't work full time not out of the home anyways. I am a nurse by trade and working full time as a nurse is extremely hard even without a chronic disease. So I work part time and am working full time instead on my online Health Coaching business. Don't ever give up and there are always people for you to reach out to. You just have to know where to find them.

[S_dillow]

Did you tell your doc about the pain?this isn't easy to begin with but don't freak out ijust got on here myself but I see lots of good advice .I just got a ton of info from the kidney foundation and I feel a little better about what's going on

[SadMad]

This site has helped me so much. I was so anxious when I hit stage 4 because I thought the doctors should have a fistula already in my arm and ready for dialysis when I hit stage 5. On here I learned that you can be Stage 4 and 5 for years without dialysis if you take care of yourself and you diet. My doctors just don't have good bedside manners. They see me about 10 minutes and go over labs and add or delete drugs depending on lab tests. The should have told me to relax and that I had plenty of time to get a fistula. I have never been referred to a renal dietitian; just told to follow DASH diet to control sodium in my diet. I live in a small area with little choice in doctors. So hang in here. I also started seeing a therapist this month to have someone to talk to about everything. I am close to 56 and work to part time jobs equaling 31 hours or so, so I am considered full time and get full time benefits. The longer I can go without dialysis or a transplant the closer I will be to retirement. I have right leg pain and have to use a crutch some days but that is getting better now that my gabapentin has built up in my system. Depression sucks and I have been hospitalized several times for it. No one can understand depression if they haven't experienced it. I guess we all just need to educate ourselves, watch our diet, exercise, and live one day at a time. Take Care and God Bless You.

[newbie1956]

Hi, Flaherty741... i'm also stage 3 & was scared silly for the first 2 years.

Almost 80 yrs old now and agree with everything everyone has told you.

Remember CKD is not a death sentence & there are many good experiences found here.

Think of life with CKD as just an interesting journey & with some effort on your part, it's unlikely that you'll ever need dialysis.

Agape

[Klove22]

I'm so sorry you feel that way. I've recently been diagnosed with Stage 3 kidney disease too. My PCP doesn't even have access to a diet that might help. To complicate thing's, I'm diabetic too. So I guess I'll try to figure out what to eat between both diets I've read on the internet. I'm depressed too. No one would understand me either. I'd give u my number, but don't want to post it. Feel better. Maybe see a psychiatrist too? I do.

[Lav1]

Hi Flaherty741,

I hope you are doing better and you have got the pain under control. I'm new on here, have stage 4/5 CKD, which was a total shock when first diagnosed a year and a half ago now. There seems to be lots of caring people and good advice on here. One of the things that I would definitely encourage is staying positive, educate yourself as much as you can with Internet, books and chatting to people. Ignorance breeds fear. You are not on your own, good luck.

[GlitterGrlz]

Please tell me you are still around? I would really like to give you major moral support.