I don't know what's worse, waiting for the phone call that they found a liver for you, or knowing there is one and waiting for the scheduled date? It is driving me nuts.

Hope everyone can enjoy the beautiful day,

Andreas

I am new to your forum. I got my kidney transplant 4 weeks ago! I am feeling amazing. I was super lucky since I was 95% antibodies before transplant and they found a diseased donor for me. My creatinine is .09 now and everything is good except they found antibodies they are currently giving me ivig and plasmaphoresis. I just wanted to know if any of you have gone through this and how are you right now also my native kidneys were still working before transplant and I had started dialysis 2 months prior to the surgery but I’m still spilling protein which I would think make sense since the old kidneys were doing that before. Has any one had an issue with this as well? Hopefully I get some answers from you guys.

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.

Thanks for any replies in advance.

Kim

March is Colorectal Cancer Awareness Month.

Colorectal cancer is no longer just a concern for older adults—1 in 5 cases now occur in people under 55. Early detection is key. We should all be protecting our digestive health as we strive to thrive with our

♻️ #GiftofLife ✅️ .

I'm sharing an informative video (recording of a webinar) by Medstar Health (I belong to this hospital system).

Stay healthy and excited for springtime!

This day honours those living with all types of rare disease, and is represented by the zebra (it comes from the expression when a doctor sees symptoms to think horses not zebras, or the most common possible complications first, and is a reminder that we 'zebras' exist)

I was transplanted for a rare disease back in 2020 (Glycogen Storage Disease) and since then have met so many rare disease families. We're greatly underrepresented in awareness, and so this day means so much to me personally as a chance to get to share my rare.

If you have a rare disease, we want to hear about it! You can also find out more about rare disease day, and find ways to participate by visiting www.rarediseaseday.org

I decided to recount my skin cancer experiences, lessons learned, and advice for other organ transplant recipients in a new blog post for TransplantLyfe:

https://www.transplantlyfe.com/education/blog/grateful-but-still-human

If anyone else has experience with this aspect of living with a transplant, feel free to share below.

Being a lucky, blessed, and grateful heart recipient, I really try to raise awareness about heart health in general. After being diagnosed with Congestive Heart Failure (CHF) in 2008, and after several procedures (including open heart surgeries, thanks to an organ donor, I was blessed with a heart (my Gift of Life) on April 20, 2015.

Heart disease is still the #1 cause of death in the 🇺🇸. So, let's all please get involved and make heart health a priority. Heart disease doesn't discriminate at all. Someone has a heart attack approximately every40 seconds! I survived a massive heart attack 2008.

Throughout the month of February, I will post materials related to heart health, including information about the risk factors etc. Uncontrolled blood pressure is one such risk factor. It is extremely important to monitor regularly and manage our blood presure to avoid strokes and other cardiac events (along with other diseases). Please download the blood pressure log and try to track/monitor. (See link)

Please feel free to comment about your experiences related to heart health.