Congenital Heart Defect/Disease

Hi, my name is Daryn. I'm here because I am a mother of five. My youngest child--my very first son--will be one month old tomorrow. When I was 26 weeks pregnant, his anatomy scan confirmed a congenital heart defect called AVSD, as well as two soft markers for Trisomy 21. Soon after birth, he has been in the NICU since birth due to complications from his heart defect.I am joining to begin journaling as a coping method for everything I go through on a daily basis as a medical mom, postpartum, with four children at home and one in the hospital.#MightyTogether

Hi, my name is taniaBrisley. I'm here because my daughter has a congenital heart defect, PAPVR, she will have to go for surgery, and I want to be informed, and equipped both mentally and spiritually, and want to support her in every way I can.

#MightyTogether

Last Friday, in the early hours, my pet bunny passed away. She was with me for eight years. I miss her so much. We rushed her to the emergency vet as she was struggling to breathe. We had to euthanize her because she was living with a congenital heart disease and her heart had swollen and started crushing her lungs. She had adapted slowly over the years and then suddenly she was out of time. I hope she is hopping over the rainbow bridge 💔💗🐰 and joining all my other bunnies there too. I've had pet bunnies my whole life. I really really miss her. It's been so hard to clean out her hutch and her things without her here.

To top it all off I overslept due to not sleeping well (was crying the whole night) and then I was late to work (really late).

Some colleagues had flown up from Cape Town and from Ireland for a workshop and I was late to meet them. Horrible first in person impression....

Then the following week Monday my period started. On top of this at the conference venue they served gluten, sugar and milk at almost every meal. My IBS started flaring from Tuesday onwards...

I was late again twice that week. I'm not proud of that.

Finally on Friday I was really early to the workshop. But this time the conference served peanuts inside their creamed spinach for lunch. Triggering a whole peanut poisoning episode... I left work early in a rush and a panic to get to an EpiPen at home (also not great - as it was the last day of the workshop and we had to say goodbye to our foreign colleagues). Not great for my work performance honestly.

This is why I have a remote job. I can manage my conditions remotely, even when there are many uncontrollable stressors like my bunny dying... But if you add going into an unfamiliar conference venue everyday where they just poison you nonstop...

Yeah I feel totally shit after this week... Physically and mentally...

How do I CBT this?

#prurigonodularis #AnkylosingSpondylitis #PsoriaticArthritis #Grief #MajorDepressiveDisorder #GeneralizedAnxietyDisorder @ @ @

Hi, my name is EngagingMouse6338. I'm here because we need more representation of congenital heart disease in adults.

#MightyTogether #CongenitalHeartDisease #Migraine

Hi, my name is EngagingMouse6338. I'm here because we need more representation of congenital heart disease in adults.

#MightyTogether #CongenitalHeartDisease #Migraine

Hi, my name is mlhofsd. I want to provide support and education to patients and families impacted by congenital heart disease.

#MightyTogether

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.

#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy

So apparently they did a wipe and my previous posts are gone. That’s fun

Anyways, just a little rant - not having the best time here at the moment.

Need a heart valve transplant this year from my congenital defect, and dealing with doctors again is not something I enjoy. My mom is freaking out, my sister is being clingy, and my dad is demanding I try to schedule mutiple fact finding and question based meetings with the doctors. I’ve looked at some of his questions… they go into excessive detail. Painfully graphic detail. The kind of detail that forces me to remember the info dump I was given at 5 years old about how and exactly why I’ll never be able to match anyone else.

I just want this to be over. I don’t much care if it’s a success or not any more, I just want to go back to ignoring the fact I’ve never been healthy and just deal with the side effects I’ve gotten so good at suppressing. Or not… won’t have to deal with side effects at all that way. I’d like to stick around if I can, but right now I dont much care… I just want this done. #Depression #CongenitalHeartDefectDisease