Do you have some resources for support networks for caregivers? What has been your caregiver experience, either as a caregiver or with your caregiver?

for some reason i have been trying to put all this questions into something i am just trying to figure out, would love if you can provide opinions and feelings here.

https://forms.gle/nUrDBW3FCCTc9NjeA

My name is Jaderson Grangeiro, I’m 38 years old, from Brazil, and I work remotely as a regional manager for a university in Spain. I started hemodialysis two weeks ago, and I’d like to share my story.

I’ve always had a very active life. I worked on important projects, trained regularly, traveled to many countries, and always believed I was in perfect health.

Because I was always physically strong, training and pushing myself, I lived with high blood pressure for years but assumed it was normal. I’ve always been a very intense person, so I never saw it as a real problem. I rarely went to the doctor, only in extreme situations. I truly believed I was healthy.

In October last year, I developed pneumonia. I had severe shortness of breath and went to the hospital. The pneumonia was treated quickly, but the doctors kept me hospitalized because my blood pressure wouldn’t go down. After multiple tests, they found abnormalities in my kidneys.

I was discharged and told to see a cardiologist and a nephrologist. The cardiologist diagnosed several heart issues caused by years of untreated hypertension and prescribed five medications. Then I saw a nephrologist, who ordered more blood, urine, and imaging tests.

That’s when they found a stenosis in my left renal artery, along with extremely high levels: creatinine 7.5, urea 5.2, and very high potassium.

I was hospitalized again. They placed a catheter in my neck, and now I’m on hemodialysis three times a week. My doctors are pushing me to get a fistula, but I’m still reluctant, partly out of fear and partly for aesthetic reasons.

To summarize: I’m 38 years old. I went to sleep thinking I was healthy and woke up in stage 5 chronic kidney disease. My left kidney is severely damaged, and my right kidney is functioning at around 10%. The disease was completely silent. I had no clear symptoms until it reached end stage.

Everything is still very recent, and I haven’t adapted yet. It’s extremely hard for someone who was always strong and active to suddenly become dependent on a machine and face so many limitations.

I’ve been feeling things I never felt before: fear, insecurity, and a constant sense of losing control. At times, I feel powerless and deeply frustrated.

I apologize for venting, but I really needed to talk to people who understand what I’m going through. Sometimes, the optimism from family and friends doesn’t help, because it doesn’t reflect the reality I’m living.

My wife has offered to donate a kidney, but that also brings a lot of internal conflict for me.

For the first time in my life, I feel fear. Fear of complications, fear of the future, fear of not being able to protect my family the way I used to.

I’m still trying to understand how to move forward.

Our friend and fellow community manager, Alex was recently blessed with the ♻️ Gift of Life ✅️ that he'd been waiting for since ages. He's an inspiration to us all, and an amazing (now) 2-time 🧡 kidney 🧡 warrior. Alex managed to stay positive throughout the grueling waiting period while on nasty dialysis. I wonder why his infectious smile is more prominent since 5 days ago. 🤔😊 . Alex was transplanted at NYU Langone in New York city.

Please send Alex and his loved ones lots of love, best wishes, positive vibes, and prayers for smooth and complete healing.🙏

💙 #DonateLife 💚 It saves lives.

#OrganDonation + #Transplantation = #Miracles 💯 (like Alex)

If you're on dialysis, waiting for a transplant, or supporting someone who is, this episode offers real insight and encouragement. We hope it helps others feel seen, supported, and better prepared. We would love to hear your thoughts.

Take a listen and feel free to share with anyone who could benefit. 💚 https://transplantlyfe.com/education/podcasts/lyfetalks

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had my Follow Up today and I found out I won’t be meeting with my Surgeon anymore but a Hepatologist I’m familiar with, he supervised my Abdomen getting drained

I met with the same Psychologist again afterwards and told her how I requested to speak with her again while I was admitted but was Denied

She said she heard about that later on but I was discharged…

Every heart month I find myself reflecting back on the journey that brought me here. It always stirs up some complicated feelings; grief, thankfulness, awe. If you feel yourself having the same feelings about your transplant journey, you should totally check it out!