Would love to connect with other young CKD families and spouses 💖

[LSalt87]

Hello! New face here! Would love to build a support team as my husband is currently battling CKD and is prepping to start dialysis as he awaits a transplant.

We are a young family, husband is 33, myself 35. We are parents to 7 crazy little minions and a fur baby. He has been battling CKD for most of his young adult life however with us staring end stage CKD in the face everything just seems to be happening so fast and it is incredibly overwhelming.

Hubby is quiet about it most of the time and doesn’t like to address it much but I can still see/feel how stressed and scared he is. I am scared out of my mind realizing the severity of it all with each passing day, and trying to navigate everything while keeping a strong front and take care of the fort.

Any other young families with spouses with CKD/undergoing dialysis? Would love to hear your stories on how you navigated this new life, some tips on taking care of our mental health and staying encouraged through it all, and most importantly I’d love to know from caregivers some of the best ways you’ve supported your spouse through this journey.

Many thanks!💖

[WYOAnne NKF Ambassador]

I was diagnosed with CKD when I was 39. The doctor's after a biopsy determined that I had FSGS, which meant my kidneys were getting all scared up inside. I was lucky to receive a kidney from a deceased donor about 8 years later. I am now 22 years post transplant and living the "good life." My daughter's got married and now I have some "buddies" - my grandsons.

Has he been listed at a transplant center?

Have they told you how long the wait would be for a kidney?

If possible, when he has to start dialysis see if "at home" is an option for him.

Is your husband diabetic? Or do they know the cause of his CKD?

Has he started a kidney friendly diet? You can look at the NKF site for diet suggestions. kidney.org

There is also a free app that helps with diet kidney.org/myfoodcoach

I wish you all the very best..,

Keep us posted!

You have a great looking family!! Thanks for posting the picture.

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My husband (late 40’s) is gfr 13. So we monitor his diet very closely. He’s peg fed so it’s slightly easier to maintain day to day nutrition without excessive protein or other elements going up drastically. He’s been ok with it for a year or so dropped from 35 to 13 in the last 3 years. He’s not fit for transplant or dialysis ( co morbid factors ) so we just do what we can with diet only .

You can try sengal gum as that has can slow the drop . Mix in water drink daily . Gum Arabic/ sengal .

I hope pray your husband is blessed with a long healthy body for you and your family.

[nellie237]

Hi LSalt 87,

I can't offer any advice I'm afraid, but I just had to say...............I love this photo. You and your husband must be so, so proud of your healthy looking bunch.

I was 1 of 6, and my Dad had health problems. I sincerely hope that you get some helpful advice for your situation.

[PKDpostTRANSPLANT]

Hi! I'm new here too, as of maybe 5 days ago. I am a 35 year old female who just received a kidney transplant 12 days ago. I am married with three kids (would have had more if it weren't for my kidneys!). I was born with Polycystic Kidney Disease. I also watched my mom undergo dialysis for five years from 2010-2015 before she got the call for a transplant. From my experience I would say the best things you can do to support him would be...

To encourage him with your demeanor and words, esp on tough days. Just love him and be there for him!

help him manage his diet (my mom struggled to eat how she was supposed to because she didn't have the energy to make food or think about what to eat and ended up eating a lot of ready made meals. The dialysis diet is challenging and it takes a little planning and cooking.

Do what you can to make sure you have the rest of life under control as best as possible so he can focus on getting better without feeling guilty for not being there to help you or stressed that it's not handled. Maybe this won't be as hard for you all as it was for me since you are caretaker and mom. For me being the patient and mom I felt a lot of guilt and stress when I couldn't be there to cook dinner or take my kids to the park or clean the house. If my husband was overwhelmed by his increased duties I would feel so bad. I decided that in this stage in life I need to just buy the paper plates and utensils, prep freezer meals in advance, stock the pantry and freezer so I only have to think about buying the fresh stuff, just anything you can think of that would help you with your family duties so you have more time and energy to be with your family and support your husband. I think being prepared does a lot for your mental health too because you won't be as overwhelmed.

When you get scared or overwhelmed I find the best thing I have done to help is to start thanking God for every single thing. I just tell Him everything I'm thankful for and it doesn't take long for my mind to refocus on what is important. As hard as dialysis is, it's a blessing to have that option, as not that long ago people did not have the option for dialysis or transplant. Each day is a gift, try to enjoy the season you are in and have faith that you will get through this!

The last thing I want to say, is to encourage you to seek a live donor if you haven't already. I had no one in my family that could donate to me and I never thought I would get a donor. And honestly I dreaded asking. It's humbling for sure. Awkward. Uncomfortable. Transparent. At least it was for me. But I felt more and more God asking me to trust Him. So I created a page and sent it out to whoever I could think of. And I got a match!

If you are on Instagram there is a page called teambemore and they are a kidney recipient donor pair that advocate for organ donation and they will share your husband's info and try to help if that's something your interested in.

I hope some of this helps. My heart goes out to you. It's not easy to go through this as a young family, but I can tell you, although I never would have chosen to walk this road, I have learned so much through it and I think I am better off because of it. You are welcome to reach out if you have any questions at all!