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Genetic testing for the parents of a fanconi anemia child # fanconi anemia

Hi! I have 5 children and I’m 42. In 2006 my daughter had her stem cell (unrelated ) bone marrow transplant. She did very well long story short she is now 22 and has had skin cancer and was treated with removing the cancer. Now she was just diagnosed with thyroid cancer. Also something is going on with her liver, continuos elevated liver enzymes. We’re waiting on results from a ct at this time. February 12 she sees the doctor for a surgical consult and then will receive radiation
I’m worried since there still isn’t much research on how they are doing as adults
Also my youngest son has another inherent disease called hyperlipidemia. He sees a cardiologist annually to see when he will need medication for this. My daughter was diagnosed by geneticists. I requested a referral today to see a geneticist to see what I’m predisposed to. (I took my data from ancestry and uploaded it to genapp. And it’s loaded with all the genetics stuff. I have 9 dominant disease that I carry (not sure which will be the one that affects me)
I plan to show the geneticists. My whole family has all sorts of disorders mental and physical and quite a bit are hard to diagnosi. Especially with the auto immune area

Has anyone done this? Does anyone have an adult child after their transplant ? I would love to know how they are doing…any advice or tips?
Thank you

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I'm new here!

Hi, my name is aintgettinanydeader, AKA Jim
I was diagnosed with MDS-EB1 in 2020 and received an allo stem cell transplant in March of 2021.
Still beating the odds, and hoping everyone else is doing great as well!

#MightyTogether #MyelodysplasticSyndromesMDS

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A Thought About Mental Health Professionals

#I have been living with schizophrenia for almost 40 years. I have found that many people have the common misconception that just because someone is a mental health professional, they are able to speak with authority on any mental health condition. This is like saying that because someone is an MD he can function as a general practitioner one day, a brain surgeon the next, perform open heart surgery the following day and just for good measure do a liver transplant the next. Dealing with psychosis requires a special skill set that most mental health professionals simply don't have. In their ignorance many of them think that they are qualified to deal with psychosis simply because they are mental health professionals and psychosis is a mental health issue.#MentalHealth #Psychosis #BipolarDisorder #SchizoaffectiveDisorder #Schizophrenia #MedicalProfessionals

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New Stem Cell Trial for People with Secondary Progressive MS

Exciting news about an initial trial by an international team to transplant nerve stem cells directly into the brains of 15 people with secondary progressive MS and found that this strategy appeared safe and has the potential to stop MS progression and promote tissue regeneration. More research is needed, but exciting research. Have you participated in MS research? What type? What are your thoughts about stem cell research and trials?

Here’s some additional information about stem cells and MS.

www.youtube.com/watch

Ask an MS Expert: Stem Cells in MS

Many types of stem cells have the potential to slow MS disease activity and repair damage to the nervous system. Join Ask and MS Expert to hear from Dr. Jeff...
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What’s a health goal you set but find it challenging to implement?

Making health goals can create a roadmap for you to follow when you’re looking to make decisions about your well-being. It’s not always easy, though, to implement every goal immediately — especially when you’re met with challenges or barriers. This can be anything from health limits and demands, limiting beliefs, finances, your living situation, or even circumstances that are out of your control.

What’s a health goal you set but find it challenging to implement?

#KidneyDisease #Caregiving #Parenting #RareDisease #Transplant #PrimaryHyperoxaluriaType1 #CheckInWithMe

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How has PH1 affected your dating and love life?

From employment to body image, dating to maintaining personal relationships, we know PH1 symptoms can affect life in many different ways (both good and bad).

Whether it’s stigma, lack of public understanding, or the impact your condition has on your confidence and self-image, it can be challenging to navigate relationships of all kinds.

How has PH1 affected your ability to date and explore romantic relationships, if those are of interest to you? Let’s share and help one another in the comments below. 💌

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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Hi my name is April. I was diagnosed with Undifferentiated connective tissue disease 14 years ago. I've recently in the past 5 years have been diagnosed with interstitial lung disease and I'm being considered for the lung transplant list. I joined this group so I can learn more about invisible diseases that we all live with everyday. Thank you for accepting my request and I look forward to interacting with all of you.

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What do you find most challenging about understanding lab tests and results?

There are many lab tests your doctor can perform to diagnose and track the progression of your primary hyperoxaluria type 1 (PH1). But sometimes it can be challenging (or feel impossible!) to understand lab test results even when your doctor walks through them with you, leaving you feeling confused or frustrated.

What do you find most challenging? Share your experiences or tips with us in the comments below. ⬇️

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What information or input is important to you when starting a new PH1 treatment?

If your doctor prescribes a new-to-you primary hyperoxaluria type 1 (PH1) treatment, what’s important for you to know before you start taking it?

Maybe you receive the majority of your medical information from your doctor, and defer to their recommendations about possible treatment options. Maybe you would prefer to talk to your loved ones about your options, or perhaps you look to the experiences of other patients who have already tried the medication you are considering.

Share what’s important to you in the comments below. There’s no wrong answer!

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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What’s on your health to-do list this week?

Living with a kidney disease like primary hyperoxaluria type 1 (PH1) means that taking care of your health can often feel like a full-time job. Maybe you are making phone calls to your medical team, paying bills, requesting medical records, scheduling an appointment, or picking up medication at the pharmacy.

What do you need to get done this week?

#KidneyDisease #KidneyTransplant #LiverTransplant #Transplant #OrganTransplant #kidneyawareness #KidneyStones #KidneyPain #KidneyProblems #RareDisease #ChronicIllness #CKD #ChronicKidneyDisease #PrimaryHyperoxaluriaType1

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