Help!!!

[JaxsDad]

My name is Jeremy and I am a single father to an amazing 3 year old boy named Jax! I was diagnosed with CKD last year and it's been a whirlwind of emotions! With a GFR of 15, I am mere moments from starting the journey of PD. I've had an evaluation and working towards a transplant. In the mean time, I am struggling. A lot. Here's some of my struggles and I'm hoping someone can help me along.

Being a parent:
I am afraid of what life will look like post dialysis and I think that might be cause it's unknown to me. Hearing of some of the modifications that I'll need to make to the life of my son and I, makes me terrified. Such as- not lifting more than 35 lbs. my son is a good 45. What does life look like without piggy backs?! Or night when he's fallen asleep in his car seat after a long drive? Who's going to carry him up stairs and tuck him in bed?! I know these fears sound petty. Dialysis is a life sustaining treatment and I am afraid of missing out of these moments.

Family and friends:
After my most recent hospital stay, word got out to friends and co-workers. Let me claify that, my close friends and family know of my CKD. After word broke, co-workers became concerned, rightfully so. What I struggle with is 2-3 people a day asking me how I am feeling and how things are going. I currently work full time and plan to continue working. Usually when people ask me how I'm feeling, they usually follow it with " you look really tired." Of course I'm tired. I don't know how to genuinely answer their questions without sounding robotic. It's usually the same answer " I'm okay. Things are going well"

Honesty:
How do I get over the pride and admit when I'm exhausted?! I feel I have this preconceived idea of what my life should look like and how much drive/energy a 29 year old male SHOULD have. Knowing that I am sick, it's hard for me to come to terms with it. I know that it's not healthy, so that's the reason for such a long cry for help.

Any advice would be much adored.

Jax's Dad.

[BethanyRae]

Hi Jeremy,

I also have a little boy, he is four years old and I can't even begin to imagine the emotions you've experienced, especially being so close to dialysis/transplant, not to mention as a single parent of a young one! Do you have some family and friends as a support group to help you with your son during the process?

I don't think that your feelings regarding your son are petty at all! From what it sounds like, you are an amazing father, who does his best to love and care for his son. I guarantee that your son will continue to think that you're as cool as ever, even if he has to go a little while without piggy back rides and being carried. My dad went through a transplant when I was five years old, I never thought too much of it, because life went on to be pretty normal, truthfully I hardly remember it at all. Now having been diagnosed with a kidney disease myself, it has given me even more love and respect for the process that he went through with the PD and the transplant. I am so thankful he made the brave choice to get treatment, he is one of the most important people in my life! It has been 23 years since his transplant with relatively no health issues, there are probably 22 years that I wouldn't have gotten with him if he hadn't chosen treatment.

I can respect wanting balance between being true and honest to how you are feeling, but also not wanting to let go of the pride. It's difficult watching people around us, similar in age, living a normal life. I am lucky enough to only be in stage 3b of CKD, while I deal with some symptoms, it isn't as nearly as bad as it could be and I am thankful for that. But I have struggled with being young and not quite as well as those around me, I definitely get tired more quickly and have difficulty sleeping. I was also told not to have more children, so I can definitely empathize with wanting to tell people that you are ok, knowing that you actually don't feel so ok. I think it's completely acceptable to say, "You know, it's been a rough day, I'm exhausted, but I am going to keep moving forward, like I always do." I can also totally understand the difficulty in coming to terms with being sick, I spent a good three and half years in denial before coming to terms with being sick, and I still bounce between denial, anger, depression and acceptance.

Thank you for sharing your story and I hope you can keep us updated on your journey!

[JaxsDad]

Thank you for your response! I think half the struggle I am experiencing is that I don’t feel people can relate. They can be sympathetic but its different when you’re sharing your story with someone that has gone through, or is going through, similar struggles. I called my Dr today to schedule my catheter placement surgery. I know it’s not going to be easy, but it’s what I need to do!

As far as support: I have a mother that lives close by. She is a huge help with my son, but she also has her own kids that she is raising. My younger sisters are 14 and 17. Between sports, performances and gatherings, she doesn’t have a whole lot of extra time. She also helps care for my uncle who is battling MS. I also have a fiancé. Due to work, he is currently stationed in Arizona and and we’ve been long distance for 3 years now. He has put in a request to transfer back to Oregon but, like anything dealing with the Government, it takes FOREVER and there is a long process.

I know there is light at the end of the tunnel. I know that there will be a new normal and we will adjust. It’s just hard.

Again, thank you so much for your response. I’ve found your words very comforting!

-Jeremy

[BethanyRae]

I am so glad your mom is close by, it is so nice to have support, even if it is just a little. I will be sending positive thoughts and good vibes your way, both for your CKD and that the transfer for your fiancé will be as smooth and quick as possible! I think it would be so helpful to have someone that important to you, near by.

[shybearsf]

Hi Jeremy,

My name Paul and I live in the Bay Area. Last year I received the diagnosis that my kidneys were failing. It felt like a punch to the gut. It was so bad I could not even repeat my diagnosis to family and friends without completely breaking down. And I do the ugly cry. I first went on HD, while I lost some weight and was able to get the catheter implanted. I cannot speak to having a child while on PD, but it has been easier to maintain some semblance of a normal life. As far as co-workers, I have chosen not to tell them, but my supervisors know, since I have my monthly team meetings and my blood tests as well. You don't seem like the type to do what I do and that is tell people off when they comment on my tired appearance. I am an eye roller and I think and have often said, UH DUH, MAYBE I LOOKED TIRED CAUSE MY HEALTH IS CRAP. THANKS FOR THE KIND WORDS AND SUPPORT. Right now your attention should be on your health and on your son. I hope you are doing better and I send you good wishes.

Good Luck,
Paul

[Loganwon]

Who told you not to lift more than 35 lbs? I dead lift 300 lbs for reps twice a week. I have a friend that is a competitive bodybuilder that does PD. He is all natural of course and just tapes the cath to his side. Only old school Drs tell people not to be physically active. He might have meant using your AV fistula arm until it matures in that arm. CKD does not mean the end of your life. People have lived 35+ years on dialysis. And as time goes by that amount of time will get longer also.

[Melissa_7]

I work with kids, have five of my own and have fostered and adopted. Kids... are adaptable. Your son will adjust to your new normal more easily than you will. As long as you have a positive point of view and focus on what you *can* do with him, he will be minimally impacted especially given what a devoted father you are.

Here’s a real story from my family, which shows kids will roll with it. My 10yo son is on dialysis. We’ve been through a lot of stress and scary moments, but Jesus always gives us reasons for joy and is present with us in grief. One afternoon after a rough caregiver week, I cracked. I was literally laying on the floor crying for an hour or so. My 4yo son sat by me, rubbed my back, and played trucks on the floor beside me. When I stopped crying he hugged me and asked if I was ok.
Me: Yeah, baby, I’m going to be ok. Will you pray for me?
4yo: Yay! *prays that God would help mommy to be happy* *ponders for a moment* Can I have a snack?
And he bops along on his day. I’m able to smile again and have a snack with him. It’s ok for kids to know life is hard. Their lives will be hard in places too. We deal with the hard moments and hard things but focus on the good and what we can do.

[erkyl77]

My name is Jeremy and I am a single father to an amazing 3 year old boy named Jax! I was diagnosed with CKD last year and it's been a whirlwind of emotions! With a GFR of 15, I am mere moments from starting the journey of PD. I've had an evaluation and working towards a transplant. In the mean time, I am struggling. A lot. Here's some of my struggles and I'm hoping someone can help me along.

Being a parent:
I am afraid of what life will look like post dialysis and I think that might be cause it's unknown to me. Hearing of some of the modifications that I'll need to make to the life of my son and I, makes me terrified. Such as- not lifting more than 35 lbs. my son is a good 45. What does life look like without piggy backs?! Or night when he's fallen asleep in his car seat after a long drive? Who's going to carry him up stairs and tuck him in bed?! I know these fears sound petty. Dialysis is a life sustaining treatment and I am afraid of missing out of these moments.

Family and friends:
After my most recent hospital stay, word got out to friends and co-workers. Let me claify that, my close friends and family know of my CKD. After word broke, co-workers became concerned, rightfully so. What I struggle with is 2-3 people a day asking me how I am feeling and how things are going. I currently work full time and plan to continue working. Usually when people ask me how I'm feeling, they usually follow it with " you look really tired." Of course I'm tired. I don't know how to genuinely answer their questions without sounding robotic. It's usually the same answer " I'm okay. Things are going well"

Honesty:
How do I get over the pride and admit when I'm exhausted?! I feel I have this preconceived idea of what my life should look like and how much drive/energy a 29 year old male SHOULD have. Knowing that I am sick, it's hard for me to come to terms with it. I know that it's not healthy, so that's the reason for such a long cry for help.

Any advice would be much adored.

Jax's Dad.

I think you took a big step in getting over the pride by posting on here. There's no shame in saying "hey this is kicking my butt today, but tomorrow I'll be kicking it's butt" There's a certain amount of pride you're entitled to when you look this in the face and say "you're not gonna beat me, I'm gonna beat you" As with any war, there are battles, some will be won, some will be lost. Just keep your head up and know one day you'll be even stronger then you are today.