picc line

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.

Hi all! A friend of mine (21 year old female) is having a really rough time with her chronic illnesses lately (more being diagnosed and in & out of ER) and her friend and I are getting together to make a care package to surprise her with. She has POTS, EDS, and more. Does anyone have any ideas that would be inexpensive? I’m currently unable to work and have no source of income 😅. #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Gifts #PiccLine #MedicalZebra

I’m looking for people who have any type of alternative nutrition. I’m struggling a lot with it. Don’t know where to post this. I have so many questions.

I got a #PiccLine three days ago for #TPN .
Any newbie advice?

I’m getting my first hickman next week, I’ve had two picc lines before for TPN but my doctor had to pull my second line yesterday. During its original placement it was put to far deep into my chest so it had to be pulled twice, a total of 5 1/2 centimeters. After all that the insertion site was bigger than the line so it couldn’t heal properly. We’ve attempted to place a hickman before but I had a panic attack so this time they’ll put me fully asleep but I’m still really scared. #ChronicIllness #HickmanLine #PiccLine #SuperiorMesentericArterySyndrome #TPN

#CysticFibrosis #hospitalstay #antibiotics #PiccLine #Breatheeasy.
just wanted to vent a little bit about how my hospital is going (not that anyone cares too much lol). so basically I’ve always been on the same meds for MRSA and Pseudemonous; vancomycin, tobramycin, and ceftazadime, and usually by now I’m feeling a bit better but I don’t??? oh yeah and I also tested positive for mycobacterium in August so they don’t know if that’s what’s causing my symptoms. I’ve just had a super bad wheeze and was coughing up blood over the weekend and ever since then I’ve sounded way way worse. also note that ventolin doesn’t work for me at all so they don’t believe it’s Asthma of any kind. I’m a little worried because I have PFTs tomorrow so I really, really hope they haven’t dropped or I’m going to be spending a few more weeks after next week here.
another thing that bugs me a bit is that I’m on another ward this time because I’m growing mycobacterium so I needed to go into a negative pressure room and I’ve just found a bunch of differences that have bothered me a bit. no one comes to clean my room anymore which is pretty odd because they did everyday when I was on the “less infectious” floor with the MRSA and pseudomonas. also I found that the nurses really aren’t as educated with cf and I always tell them that I take creon right before I eat anything and it’s not like a strict time I must take them, but they don’t really listen to me. since I’ve been here vitals and everything has been good but they still come in every hour to check of oxygen is working when I’m not even on oxygen. so kinda weird and different, also not hating on nurses AT ALL! I’m so grateful and thankful for the hard work they put in and probably wouldn’t be where I am today.
a little off topic but last night somehow all my dressing came off of my picc line? and it was just exposed cause it doesn’t have sutures or anything to keep it from falling out. luckily I realized and woke up and it didn’t fall out but I’m just worried about possible infection as i accidentally touched it when it was dark in the middle of the night and was definitely breathing on it.
anyway that was kinda a long rant but I wanted to let it out :)

No one can seem to figure out what is going on with me. My body is one huge mess. In February I was sent to #ER when my PCP had my labs drawn STAT at her office because she said I looked white as a ghost and noticed that my hair had drastically thinned.

My hemoglobin came back at 5.5 and so I ended up admitted to the #Hospital for a few days where I received a blood transfusion (2 units then). They monitored me and my hemoglobin went up to 8.3 so I was discharged & sent home.

I followed up with my #hematologist and it was decided that I would have a #PiccLine placed and would begin a series of #ironinfusions . Since February, so in the past 8 months, I've had to have a total of 7 #bloodtransfusions (for a total of 13 units transfused).

My #Endoscopy and #Colonoscopy showed no signs of a GI bleed. Even the site where I'd previously had a severe bleeding gastric ulcer is nicely scarred after having it cauterized 3 years ago. My #BoneMarrowBiopsy came back normal. My #uterinebiopsy came back normal. I even had the #capsuleendoscopy (#PillCam ) done to check further into the small bowel and apparently that came back normal as well.

I've had over 30 iron infusions (have tried both #Ferrlecit and #Injectafer ) and still my Ferritin levels, Iron levels, & Iron Saturation remain in the single digits.

They've not been able to get my hemoglobin above an 8.3 and it's only been above 8 two times (an 8.3 once & an 8.1 another time). On average, I live on a day-to-day basis with it in the 7's, but it has dropped down to 5.0-5.5 over a handful of times. It seems I've needed a #Bloodtransfusion nearly every month.

I'm so utterly exhausted all the time. I have no energy or motivation for anything. My life consists of appointment after appointment. I basically don't leave my house unless I'm having to attend an appointment. I just don't have it in me.

My depression has hit so hard. I isolate even more than before because I have absolutely no energy. And that only fuels my #Depression and #PTSD even more. It's like the life is being sucked out of me in all directions.

And the doctors seem to be following up with me less and less. Like this is no big deal. If only they were the ones having to go through this...

#IronDeficiencyAnemia #Depression #PTSD #MedicalPtsd