I am in my early 40s and started dialysis this year. I was diagnosed with CKD 20 years ago when I was in college and have been on BP meds for the last 10 yr.
CKD affected my life since I was first diagnosed in college. There’s always an urgency to live life at fullest. It is scary with the uncertainty yet it has been a great motivator.
I want to share an experience this year. I had my catheter surgery this summer. And shortly after, I started PD dialysis training. Through the training, there is a lot of emphasis on infection prevention and proper diet. Complications from improper management of these can be deadly. In short, there were so many things to worry about. It was quite a stressful time for me and my family who was trying to provide the best care they can.
One day, at end of training, we walked out of clinic and started driving home. A car came out of the blue and T-boned us at the intersection, close to the passenger seat where I was sitting. I could have DIEd that day if it was just a fraction of a seconds later. Good thing it hit more of the front of the car then me the passenger.
That experience made me realize, that’s only so much we can control. Any day can be our last. There are too many things we cannot control and worrying about whether every day / month / year might be the last is counterproductive. You can only try to do you best with each day u have and cherish it. It might well be not the CKD that kills me but something else.
Written by
curiousmind2019
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Oh wow, this is a such a powerful story. I hope more people see it. there is a sister site here where people can share their stories. Email this person healthunlocked.com/user/lei...
And what you say is so true. Live to the best you can at all times. It is a gift no matter how beat up it may be.
But I really amazed after reading ur post that how u well maintained ur diseases for 20 years😊.
It's amazing and inspiring too.
I will be glad and thankful if u share ur struggles and tips that how u managed it so far.
As my husband had diagnosed CKD 1 year back. His recent grf is 49 which puts him in stage 3. Can u please share ur eating habits , medicines actually ur lifestyle which helped u to maintain ur health in these 20 years.
I think everyone's cause of CKD is bit different so my case might not apply. However, generally, managing blood pressure and weight are important. My nephrologist was very good at checking my blood pressure and adjusting my BP meds as needed. The doc tested various combinations of ACE and ARB at one point. My gfr stayed at around 40-50 for many years. The most scary parts are when it suddenly drops and those are good if you can catch it early, it might be a med you are taking or certain life events that aggravated it. I dropped very fast from Stage 4 to 5, in about 1 year. I have no idea why.
In my case, CKD is caused by iga nephropathy and i did 3 biopsy but most of the time, they found the inflammation was not too active (so i didn't have to be on steroids). But I think this part varies greatly between individuals.
In terms of diet, I wish I knew more. I think I could have done better there. I didn't restrict my diet but I'm also not a very big eater (that probably helps lighten the load on my kidney).
Hope your husband figures out something that works for him.
Hi, and my best wishes to you. I have a friend whose story is so like yours, I just wish his attitude was the same as yours and he would try and enjoy the life he has more than he does. You are an inspiration, thank you.
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New to the community!
Assistance required - CKD (FSGS)
I am finding life difficult at the moment
DIALYSIS...PLEASE EXPLAIN WHAT LIFE IS LIKE😟
Have to start dialysis soon
