I’m new here!
Hi, my name is TwistedVixen909. I'm here because I have been having a rough time lately. My daughter has an illness, and will need to have a transplant to survive and has had multiple complications due to her illness. I’ve lost my job, my home, and I’m about to lose my car, and our pets.
The Art of Living
Part 1 of 2 My daughter, Laura was born with #Cystinosis . Laura went through so many struggles medically in her life. Laura was a firm believer in science, in the potential treatments to be found, in making life better for the next person, always happily being a guinea pig for any medical study that came along. She didn’t long for a cure, she longed to live the best life possible. #Cystinosis was just part of who she was, like being a 4’10 blondie.
In 2017 when Laura’s first #Transplant failed. She quickly began hemodialysis, and it was awful. Laura ended up with uncontrolled blood pressure which made her brain swell. For days, she couldn’t communicate other than to make the “Ma” sound. She was in this spastic body and you saw her fear and frustration in her eyes. She developed #Clostridiumdifficile while she was in the hospital and I quickly learned in the ICU they could not diaper her. Let me tell you it was amazingly gross; the poop literally flew. The #Spasticity that was happening added to the mess. She was scared, you could see it in her wild always open eyes, and she wanted to be touched every moment. We took turns sleeping in shifts so someone could have a hand on her 24/7. The doctors said she may need step down care, rehab type care which was so very scary. As she began regaining her mind and the swelling subsided I walked into her ICU room to see her on her knees on the bed singing “Despacito” at the top of her lungs swaying to her tune. Laura was coming back. It was decided that she would come to my house and live. She and her two dogs came to my house after this hospital stay. It was rough in the beginning. The dogs were wild and Laura was so very confused. She would wake up yelling for me not sure where she was, in some ways like a child. As she came back to herself, she told me when she couldn’t communicate she was in an episode of Modern Family, her mind took her away to another place that was safe from the pain. She could not drive at this time and I recruited people to give her rides to or from dialysis. Hemodialysis was rough. She would come home wiped out, legs cramping. She had minimal energy, sleeping tons, lots of headaches. We were taught to do peritoneal dialysis (PD). We went to classes and sat through days at clinic so SHE could take control of her healthcare. A new port put in and we found out that Dobby (her first transplanted kidney) was dead inside her and needed to come out immediately. She got through yet another surgery and she moved onto PD. She settled into the routine of 4 exchanges a day, every 6 hours, time windows for fun. She could have used the cycler machine at night but she worried how that would affect her dogs and her sleep. Laura valued her dogs and sleep way more than anything else.
Laura’s life over those few years was rough. She learned to have a clean car so she could do her exchanges as she chased adventure. And she did have adventures, she went to Miami and Los Angeles for festivals, to London and Ireland for two weeks and saw her beloved Harry Potter sets, Arizona, Philadelphia a couple of times, places that I can’t remember because she was always planning her next adventure. She adapted to her new reality which was what Laura was- adaptable. When life threw another curve ball and her foot was fractured and needed surgery. She adapted. Even as a child when she would constantly throw up, she accepted it, made it just something she did and moved on. She didn’t know the words, “You can’t do this” or maybe “you are just too sick or hurt”. Once she figured out how to make her life work around whatever obstacle she started making plans. The girl was a planner. We had so many plans, lists of places to go, people to see.
But, in October of 1999 Laura was hospitalized and this time was different. when I walked into the hospital room I knew she may not recover. This time might be the one she couldn’t overcome. As the days progressed, she could not even give a feeble thumbs up, her eyes were closed and minimally reactive. I started trying to adopt her bravery, I had to face that my girl may not be able to come home again. Laura didn’t like you to dwell in sadness, she wanted giggles and grins and that was what I needed to give her. On October 15th at 11:30am she left this world surrounded with laughter through tears and boundless love.
The best thing about Laura was she loved her people. She collected them like seashells, that, I like to think, she got from me. Once she made you part of her heart you resided there forever. And you were lucky. To be loved by Laura meant tons of laughs, singing at the top of your lungs barreling
I’m new here!
Hi, my name is Starbucks. I'm here because
I am struggling with feelings of not wanting to go on. I have gastroparesis, CIPO, short bowel, TPN dependent, on transplant list. I really struggle because I can't live a normal life. Yet no one understands. All of my friends and family still have expectations. When I can barely get out of bed. I feel hurt because I explain over and over what I need. Primarily is not worked ng in the fily business. But I keep getting reeled in. Despite how many times I say I can't work. It's way to difficult and taking energy. I desperately need to prepare for my transplant. I feel so alone.
I'm new here!
Hi, my name is BakDownThere. I'm here because I have the things tagged here, along with back spasms on my right side that wraparound to the front or sort of vice versa.
It's cause is unclear, but I have spinal stenosis from a schwannoma (growth/tumor). I also have a bunch of eastern barr virus tumors in my liver and one in my pelvic floor. That is causing me tremendous pain.
I also have a kidney transplant and take immune suppressants, hence the tumors and growths.
I was born with persistent cloaca, where my uro, genital, and....digestive? Tracts didn't finish forming. I was born with an impersonate cloaca, too.
I javelin a 7 year old boy whose school has stopped masking. My poor boy has been sick most of the week and threw up yesterday.
I feel terrible in my tummy and am praying not to vomit. It will hurt so much, it will be hard to breathe.
I'm so sick of. Every single thing.
Sorry my first post is like this. I am so miserable right this moment.
But...I did find some odansetron (anti-nausea pills). So there's hppe!
I was in good physical and mental health until 2005. My liver failed, my ammonia levels were high I was hallucinating and the outcome didn’t look goodI had to move from the state I lived back to my moms to get on the liver transplant list. I was so devastated. At that same time in 2005 my oldest brother was diagnosed with liver cancer and died within two months. The end of of 2005 my middle brother died of a heroin overdose. I lived and felt so guilty. My parents trudged forward in their 70s I was listed for a liver transplant in early 2006 at UPMC San Francisco. Over the course 3 years…I got better I jumped through every hoop there was, I was compliant. I have never been the same. Fast forward 10 yrs, I had been on Abilify and then lithium in addition. My PCP felt he couldn’t treat me as I need to be treated. I started seeing a Psychiatrist. After 2 years of trying to find a good dosage I had a psychotic break. I was terrified, I had no idea where I was who my husband dad or sons were. I got lost driving, fell regularly and my husband had no ideA what to do…it lasted a month and a half. My poor husband finally called my psychiatrist out of desperation. I have so little memory of that time except delusions hallucinations and confusion. I became incontinent, developed an essential tic in my right hand, lost a lot of memory and it took a piece of my soul by the time it was over. That was 2 years ago. Since that time I’ve had a host of health problems most have gone unfounded, I just feel like I’m crazy. It’s either in my head, it’s my anxiety. I don’t say anything to anybody anymore about how I feel, even if there’s something wrong I don’t disclose. I feel like I’m labeled a hypochondriac, I feel humiliated. My symptoms are not made up but I can’t convince anybody. I’m not crazy I know the difference between right and wrong, sick and healthy. I’m at a point now where after 3 years I feel so much worse than I started out.. I have a very miserable life. I have a PCP, a Psychiatrist , a psychoanalyst, a neurologist and a GI doctor. I feel like a fool and can’t see any hope.
That getting sucked in feeling! Having a good heart sometimes gets us in a whirlpool of disappointment.