Well, today I woke up very optimistic, but as quickly as I look at the mirror, see how much fluid has accumulated in my body, especially in my face, I feel that its features have disappeared. 😞 But I keep telling my self that I'm going through this battle for my kids, I gotta win 🙏
26 reactions •
8 comments
If you have a kidney condition, you know how challenging it can be to balance managing your condition with your other responsibilities (such as work, school, and household chores). It can even feel impossible at times, but it’s important to find time to take care of yourself.
Whether relieving stress through meditation or yoga, distracting yourself with hobbies or activities you enjoy, spending quality time with loved ones, or connecting with a mental health professional, share your self-care routine below. ⬇️
#Selfcare #RareDisease #ChronicIllness #Caregiving #KidneyDisease #KidneyHealth #kidneyawareness #KidneyStones #Dialysis #KidneyTransplant #LiverTransplant #PH1
1 reaction •
1 comment
Dialysis is one treatment option available for those diagnosed with PH1, but we know the procedure can be time-consuming and uncomfortable.
Have you or your loved one undergone dialysis? If so, what has your experience been like? If you’ve discussed dialysis as a treatment option with your doctor, what are your hopes and worries about this type of treatment? Share in the comments below. ⬇️
#RareDisease #ChronicIllness #Dialysis #KidneyDisease #KidneyStones #KidneyTransplant #LiverTransplant #PH1
So today, after about 4 months of peritoneal...it's my first time that I visited hospital for a check on my catheter. When I first started, the nurses has been briefing me about the Do's and Dont's, "what to notice" etc.. So day before yesterday, I found a little pus at the exit, freaked out a little so I had it to check for assurance.
Luckily, nothing major. No infection found, just some redness around the wound. I may accidentally pulled the tube when I was asleep or practicing yoga.
When I say it is one of those days, it means mom is feeling very sick once again.
We were up all night, trying to avoid going into the emergency room or perhaps even a simple doctors visit.
One might ask why so?
Simply, because it gets so overwhelming for mom and her body and then for my sister and I as we watch her fight off excruciating and undeserving pain with her laundry list of health issues.
So, for me it’s just not a snow day where you stay in and snuggle up with your pajamas and watch movies on Netflix.
Instead, I will standby and hope that mom recuperates at her best with her very bad breathing circumstances
And withhold any sense of fear that mom is hospitalized for the countless times and inhibits additional pain to her beautiful heart!
Indeed, the world is not a wish granting factory however one can only dream that sometimes the pain would stop.
It is so painful to watch your mom Lalo through dialysis treatment, and then drive through so many more other days of aches and pains.
However, I would only wish that I can have her with me forever but I know that is not realistic so with the days that we have presented would it be so much to ask that she is in some sense of comfort and happiness.
So many questions in this lifetime of diverse situations, but this much I know we will hold onto mom for his long as we can as she fights in against so many adversities.
I love you beyond words mom!!!!!!
#Life
❤️
Latest
