Endocarditis

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Grief, Struggles, Depression (Wash Cycle Doesn’t End)

I started my #Recovery journey in 2014 and I found a new way of life immediately. No one warned me the NEW was NEW Chapters of Life, Chapters which would not finish before the next starts….
In 2014 I had to have a #lumpectomy from my right #breast .
In the beginning of 2015 I was served #Divorce papers. By the end of the year we reconciled.
In 2016 when I should be excited my eldest is graduating from High School, simultaneously my second born had to have #OpenHeartSurgery .
In 2017 second born lost his first grandmother and I got to fly him from CA to ME to see her take her last breath.
In 2019 I was the proud #homeowner with my #husband of 10 years. We were finally making the #americandream .
In April 2020 I get a phonecall my father has had a #brainstemstroke I had to come home to Maine to assist with #lifeendingchoices .
In May 2020 my Mother is diagnosed with #OvarianCancer .
I am now temporarily living with my mother, being a #Caregiver , yet my #husband #mycaregiver #Abandoned me and then requested to take #fullcustody of #ourdaughter via the #Divorce .
In July 2021 my Mother sadly passed away. I have become an #Orphan too quickly. #Grief and #Depression is all too real now.
In March 2022, My second son has now come down sick. Doctors spend months trying to figure out why. It takes until July 2022 to diagnose him with #Sepsis #Endocarditis he spends 2 weeks #hospitalized and another 8 weeks on a #PiccLine at home.
In Dec 2022 he is given a clean bill of health and decides to come live with me in #Maine .
In Feb 2023 he starts to become tired easily, slight cough, and finally passed out in March.
March 10th he passed out at home. We called #911 and the #localer #Misdiagnosed him.
March 13th I took him to #mainemedicalcenter where he was hospitalized for 7 days with #Pneumonia and possible #Endocarditis where he was then transferred to #boston .
March 19th upon arriving to #brighamwomanhospital - #shapirocardiovascularcenter he underwent dozens more blood testing, procedures, exams, etc.
Today March 27th he is having #OpenHeartSurgery Number 2 to replace the pulmonary valve, pulmonary conduit, remove large vegetation.
In a couple of days as scheduled I am also supposed to exchange visitation with my daughter so I can visit with her for Spring Vacation. However my ex is trying to knit pick about my schedule and if I have ample time to spend with our daughter while my adult son is in ICU. Our daughter is 11 years old.
I really feel in the last multiple years I have had one catastrophic event after another without time to process.
I have other things like major moves, loss of therapists, and other medical mental health issues. I am so exhausted today scared sick for my son.
I am so annoyed how some people enjoy kicking others while they are down.
I don’t even know when I am going to sleep again right now. I have so many thoughts, concerns, to do’s in my head - I can’t sleep it is going to drive me crazy.
I am so sick of being in a chapter book that doesn’t let the chapters end.

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My Story #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #LivingWithPOTS #AutonomicDysfunction #Stroke #HemorrhagicStroke #Endocarditis

My name is Kirsten, I’m 36 years old, and I’m a wife, and mother to two amazing daughters. Our family loves to hunt, hike, fish, or just about anything outdoors!
In August 2016, I started having high fevers and shaking chills about once a week. I had been to the ER, and my family doctor had run test after test, with everything coming back normal. I had been having lots of palpitations also, but that had been pretty normal for me.
Just before opening day of archery season, I asked my doctor if it was okay for me to go 6+ miles into the backcountry. She told me yes, since everything was coming back normal that I should be fine, and if anything else came up, my husband and I were smart enough to get me out of there. So we went!
On opening morning I missed a shot at a huge bull elk! And then was hit with a fever and chills again. So I went and laid down for a bit. The fever broke, and we left for the evening hunt. My husband had told me all along that if I ever felt it was time to go, to just say something. Sitting on the edge of the meadow, I realized something didn’t feel right, so I told him I was ready to go. I stood up to grab my pack and was hit with the worst headache behind my left eye. It only lasted for a few minutes, and then we hiked to camp, grabbed some things, and started heading out of camp. It took us 4 hours to get home. I was horribly dizzy and nauseous, and soon realized that I couldn’t say the correct things, and couldn’t see well. I spent the next 12 days in the hospital due to a subarachnoid hemorrhage caused by endocarditis, that I had gotten from a tooth that I had pulled 9 months prior.
Afterwards, I started having these “episodes”, where my heart would race or palpitate, I would get dizzy, have horrible muscle aches and joint pain. They’d last for a couple weeks, and then I’d feel better for a week or two. I was diagnosed with anxiety, silent migraines, possible panic disorder and PTSD.
The beginning of 2019, I got a stomach bug, and these “episodes” were now my whole life. They never went away. Soon I realized my heart rate was doubling just when I stood up, and tripling when I did basic things like moving laundry or picking up my room. I went from hiking 15 miles a day, up and down mountains, to barely being able to stand long enough to make dinner.
I finally did the research and googled everything, and realized that the answer was POTS. I went to my family doctor and told her, she did a poor mans tilt table test, and agreed that I might be on to something. I then went on to see cardiology and cardiac electrophysiology, and had a tilt table test done, and was diagnosed with POTS!
I’m now learning to live with POTS, doing cardiac rehab to get my life back, and on some meds that help. I’ve been able to backpack shorter distances, and look forward to hunting season again this year, even if I can’t do quite as much as I used to. I’ll keep fighting. I may not live the life I used to, but I will live my best life!

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We are all fighting a hard battle ....


The older I get the more I realize that there are real injustices in this world. Young people fighting serious illness, hard working people that give it their all and still go without and kind people that can’t catch a break. Sometimes it all just seems like too much… why even bother? As someone that struggles with depression I tend to overthink and delve in much deeper than I probably should. I want to find the purpose in these injustices …. I want to know why life is sometimes so cruel and unfair.
Recently I witnessed a young man that appeared healthy and in the best shape of his life, suffer from a rare health issue that left him on life support within a matter of 24 hours. There were no warning bells or signs outside of a few minor symptoms that most of us would dismiss without thinking twice. I watched a family that appeared to have it all reduced to living minute by minute and hour by hour. Their life of friends, travel and career now replaced with scans, doctors reports and long term prognosis reports. As a parent I hurt deeply for this family and feel the helplessness that anyone with children would feel in this situation. If the truth be known… I was angry. Where is the fairness in this…
Its in these times that we see the good in humanity. Friends drop everything and travel across the country to sit by the bedside of the person they love, prayers of healing are lifted from hearts that have been broken, strangers hurt for people they have never personally met but are bonded by simply being parents. In our questioning of why do these things happen, we guilty thank God its not our family… We hold our children tight and hurt for those families that can’t do the same tonight. Its in these times that we realize the importance of giving the only thing that we have to give … Hope. We can’t fix the problems of the world but we can be kind, show love and always give hope to those hurting. Even in the darkest of days, we have the ability to speak life and healing in the hearts of those that are broken and scared. Hope can heal situations that medicine can’t begin to touch. Hope can bring back the will to fight and to hang on just a little longer. Hope is possibly the most powerful gift that we can give to those hurting. Everyone is fighting a hard battle and everyone is hurting to some degree. Show love to everyone, be kind always and when you think there is nothing that you can do – give Hope. #Depression #Hope #Kindness #Love #FamilyAndFriends #ChronicIllness #Parenting #Anxiety #Endocarditis #SubacuteBacterialEndocarditis #Love

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