Stage 5 Kidney Disease

[Needkidney24]

Hi,

I am new to this community. I am in my 50s, based in California. I have been living with my chronic kidney condition for over 15 years. Although I am listed on the Stanford Medical Kidney transplant list, I have been told that the chances of receiving a deceased donor are fairly slim.

A few weeks ago, I found a match (living donor). However, there is a possibility that this person might not work out. My GFR is 12%. I am performing my normal functions without any disruption so far! I was wondering if anyone had any advice or experience in finding a donor (i.e. local community outreach, advertising).

The caveat is that I am currently unemployed and am on Medi-Cal, which restricts me from applying to other kidney transplant clinics. Looking forward to hearing others' experiences.

Thanks

Sam

[honeybug]

Hi Sam 🤗🌿🌸🦋

Sorry I can’t offer any advice regarding kidney donation. I can empathize with you as I have it myself and I lost my baby brother in ‘23 and just lost my dad last month to it.

I’d like to ask questions if you don’t mind. I’m in Michigan near the U of M hospital.

If you aren’t comfortable with replying I won’t be offended. Just tell me that please and I won’t bother you anymore.

You were around 35 from your post when this started. Do you have other family members who have this too?? To my knowledge I don’t recall anyone beyond my immediate family family having this. My mother passed with lung cancer but had a long history of kidney infections which were really severe. I was diagnosed as stage 3a several years ago. My primary says that it’s not addressed until stage 2. Now knowing all 3of my family members had CKD I think it’s crazy to not be proactive In trying to stall the progression as long as possible. I watched my brother and dad suffer horrifically from this and I know this will be my fate too. I’m 74 come April. I have so many health issues that all cause suffering I don’t want to add what they went through to my experience if at all possible. What advice can you give me if you are so willing to do so ???

I just said a special prayer for you to get the kidney (s) you need. 🙏🕊️

I’m so sorry that you are so restricted by your state insurance. That’s just not right in my opinion. Every person deserves to get the healthcare they need. If I could I would expedite your case immediately.

Best wishes for getting your needs addressed asap. Also Happy New Year. May it bring you abundant blessings of happiness joy and good/better health too.

EJ 🤗🙏🕊️🌿🌸🦋

[Sapphire187 in reply to honeybug]

Hi Honeybug, Since CKD progresses slowly, at your age you may never progress to ESRD. If you eat healthy, exercise and watch your sodium that should help. You didn't say what caused your CKD. Mine was caused by uncontrolled high blood pressure, so it's important that I keep it under control. If you have diabetes, match sure you keep that under control as best as possible. I would talk with your doctor about your concerns and ask what you can do to help slow down the progression even more. If your doctor isn't helpful enough, as for a referral to a Nephrologist. All the best to you.

[honeybug in reply to Sapphire187]

Thank you so much for your most helpful reply. Bless you abundantly.

EJ 🤗🙏🕊️🌿🌸🦋🎊

[KajNybom in reply to honeybug]

I have a large family and I am the only one that has ckd, unless my parents had it and did not know. I am 74 and my parents were of the thinking that if you don't go to the doctor you won't have a problem. That said, they never demonstrated any symptoms. So strange. Was your family exposed to anything?

[honeybug in reply to KajNybom]

Hi Kaj 🌿🌸🦋

Yes my dad worked in the auto industry working with a lot of deadly chemicals. My brother was born after my dad’s exposures so the damaged genes were passed on to him directly. Dad also was a smoker. He had a lot of damaged genes he passed on to me. I don’t remember any other relatives with CKD but 98% of them died with cancer. They all came from SE Kentucky and worked in the coal mines being exposed to all dangers of mining it plus the dangers from using it to heat their homes as well.

I have many autoimmune diseases so I believe mine was mostly caused by that and some genetic factors too.

I’m so sorry that your parents were misled by their beliefs which in turn caused you problems.

I just said a special prayer for you.

Best wishes in all things.

EJ 🤗❤️🥰🙏🕊️🌿🌸🦋

[Beachgirl32]

hey if you have a living donor and that person just doesn’t match you if they pass all the test look into doing a pair exchange they would find someone who does match you and that kidney will go to someone they match if your donor us up for doing that

Hopefully you will stay at 12 percent without any problems but sometimes we don’t realize how sick we are cause we except it as our new norm I didn’t go on dialysis until 8 percent I kept telling me I didn’t feel any difference but my labs show differnt

Good luck in your journey sorry about you only being able to be on one transplant list

You can list your story on social media asking for a kidney . If you have a church family reach out to them reach out through email I have a mircosite my transplant center gave me to put my story on a webpage see if your transplant center has something like that .

[Jayhawker in reply to Beachgirl32]

great advise!

[ILMA54]

One of the things I did was to write a letter to potential donors - mostly friends from high school and college. It took almost 15 months from the time I got on the transplant list until I had the courage to write the letter. Instead of sending these folks a letter, I sent them the text of my letter through Messenger. To keep each of them anonymous, I sent each person a letter individually rather than sending a group note.

I was shocked at the number of people who volunteered to at least go through the initial blood tests to assess their compatibility. Also, do not forget relatives. My cousin who is three years older than me was a near perfect match, but they opted not to use him because it would have compromised his kidney function too much.

BTW, I am happy to share my letter with you separately if you are interested.

[Jayhawker in reply to ILMA54]

Good ideas!

[Needkidney24 in reply to ILMA54]

That would be great! Thank you ILMA54

[Jayhawker]

I have nothing to contribute beyond what you’ve already seen from others. However, my transplsnt center reminded all of us that we’re fortunate to have a treatment to sustain life, dialysis, until the donor kidney arrives. With that in mind I researched dialysis options and settled on my first and second choices. I was. 💯 ready to embrace in-home dialysis but received the call for my deceased donor kidney before I was placed on dialysis. So you just never know.

Keeping you in my thoughts and prayers.

Jayhawker

[Needkidney24 in reply to Jayhawker]

Thank you Jayhawker ! Can I ask what type of dialysis you decided on (even though, you didn't need it in the end)?

[Jayhawker in reply to Needkidney24]

Yes, my first choice was PD dialysis. My second choice as in home HD dialysis. I’m single and so would have needed some help with my second choice. However, PD would have been fine living alone. I was still working at that time and would have easily been able to make either fit into a work schedule.my nephrologust strongly tecommrnded PD for me. My job involved traveling internationally some. I remember talking with some on PD who traveled a lot and they shared tips for traveling internationally while on PD, eg, using manual PD exchanges while traveling and hanging the solution bag from the robe hook in the bathroom… It would certainly have been doable.

[viviselphie]

I share my story not to brag but to give you hope. I received a deceased donor kidney with in two month on getting on the list. The donor's antibodies only matched mine and would have not worked with anyone else.

Living donation is your best bet, but never count out a deceased donation. It might come out of left field.

[Darlenia]

Never lose hope! See Viveselphie's post about not ruling out a deceased donor kidney. My husband received a deceased donor kidney within a year of going on dialysis at age 71. He likely would have received a transplant prior to dialysis, but he was in major denial about everything. He confronted reality during dialysis and agreed to receive a "less than perfect" kidney. He's 75 now and his new kidney is working well. Because age often brings other issues, he needed a heart stent prior to the transplant. The first call came immediately after that was done. But he also had a new uti so that kidney went to someone else. The second call came immediately after the antibiotics for it ended. It was successful. Keep on keeping on...it matters.

[FelineFandom146]

Hello and welcome to the group! As someone else already said, there is a Kidney Program out there that allows kidney exchanges. If your Donor doesn't match, they match someone else and another donor may match it. program is called the National Kidney Registry’s Voucher Program found here: nyulangone.org/news/how-nat...

FYI: I am a 60 yr old with a GFR of 10.9 holding for a year now. I'm holding my own so far but that could change. I don't want dialysis or a transplant unless I really have to. No one gets better on dialysis. It is just a means to help you live, but one worsens every day on it, and that is from the experts. Of course, dialysis or a transplant is better than the alternative. That is my two cents worth. I have reached out to everyone I know and no one has stepped forward to help so I'm glad you may have a chance. I've love to find a living donor but as you find, not sure how to go about it except to just ask and that isn't working. I wish you the best.