A Tentative Diagnosis: Hemophagocytic Lymphohistiocytosis (HLH)
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- čas přidán 26. 09. 2019
- During a 3-week hospital admission, I receive a tentative diagnosis of hemophagocytic lymphohistiocytosis (HLH) and have my GJ feeding tube pulled due to repeated intussusception.
I’m sorry about your nurse. I feel the same way when my infusion nurses mess up a step of sterile protocol. I hate being a bother. But our health overrides their feelings about us. It’s not fun though, to constantly have to keep THEM in check.
That's the truth! Great perspective.
I'm glad they found diagnosis, but never easy. Cheyanne I'm so sorry you have been going through all this, so scary I'm holding on to all the positive things and knowing God is bigger than all of this. Praying you get to go home tomorrow. Continuing to pray and sending love. I love Teddy Grahams bow tie, beautiful!🤩 You are amazing sweet girl.
Thank you for the prayers. I love his bow tie too! It was a Christmas gift. :) Hope you're doing well.
You my dear are so intelligent. I love just listening to you. But wow that really made me mad hearing about the nurse. I don't know if I am happy about your new diagnosis or upset. I can't even imagine how you feel. I wish for you a "normal" life!!!!!!!! Or at least a break and a bit of an easier go at all of this! Thank you for your update. Please know we all really appreciate it and look so forward to hearing from you. Yay that Teddy Graham gets to be with you. And HAPPY BIRTHDAY to your other half!
I’m so sorry you have yet another challenge to overcome. I’m always praying for you, Cheyanne. Sending love and good thoughts your way!
Bless your heart. Praying for you!
I hope you get to go home it's exhausting being in the hospital, It's a shame people who are sick have to worry about not offending the one's who are suppose to be during their jobs correctly.Your always in my prayers.
You’re amazing Chey. I’m so sorry you have to be so strong all the time. I defo agree & can relate with hating people touching your line or TPN #TrustNoOne. Love + prayers. xoxo
Oh, girl, this HLH business scares me, considering that the paper shown says without early treatment HLH is "frequently fatal". I'm worried about you. You don't deserve to go through these constant nightmares! It makes me so angry with life. I really wish you didn't have to endure such hardship, Cheyanne. I'm so sorry. Stay strong, like you always do. You're in my thoughts. 💜
I'm sorry it's so stressful. I was told after twenty-nine years of chronic Illness I have medically induced PTSD and I actually do feel panic at certain times of admission. Anyway I'm sending virtual hugs.
I am atleast glad you received an actual answer for new symptoms.
I had weird bloodwork recently and my rheumatologist has decided to be vague. And refer me to hematologist for further bloodwork. Gotta love that. Lol
Hopefully, now that you have a diagnosed you'll be able to find a Dr. to help. I have had Autoimmune diseases since I was a teenager and now I am 70 year and Drs still think I’m crazy, 9 years ago I had colon cancer and chemo, after the 6th treatment out of 36 I had an Allergic reaction that put me on life-support and 20 days of my life I don’t remember, then I fell in the hospital and knocked my port loose which caused blood clot. The chemo caused permanent neuropathy in my extremities, I can't walk anymore but anyway it's not me. I'm worried, I am worried about you. I hope and pray that you will find a specialist somewhere that will help you and you can lead a normal life. I’m going to Research this, and find out what this disease is and keep on praying because without prayer I don't think I'd be here today. All my love, Mamaw 🙏❤️🥰
I'm sorry that you've been through so much pain and sickness. 😞 It makes me livid to be hit with constant reminders that there's so much suffering in the world. I wish there was something I could do to protect every single animal and every innocent human being. Life is heartbreaking.
Dude, I can't believe all this. It sure sounds like they are on the right path and I really hope you can get treatment that you will tolerate well and it will clear up quickly. What a raw deal. I laughed when you said "it's kinda scary. I don't want to have some rare disease no one knows about!" Because for me Ehlers-Danlos Syndrome has been a complete mystery to my doctors and I have been so sick and in and out of the ICU because they simply won't listen or take me seriously. I don't have a good team. I don't really have any team. I have a good cardiologist and that's about it. My PCP doctor's office is a comllete disorganized mess. I have Medicaid and I live in Denver where the hospitals and doctor's offices that accept Medicaid are very full, very over worked and underappreciated and it definitely has caused huge problems for me and my health. So understanding and relating to you because I have MCAS and pretty severe Dysautanomia (my POTS is nothing compared to my adrenal insufficiency and heat intolerance and my BP either bottoms out or goes through the roof, same with my pulse). I also have gastroparesis and intestinal dysmotility so being a zebra with all of this stuff from it and having followed your story I had to laugh when you said that about not wanting a rare disease. I said out loud "we ARE a rare disease!" I also have very touchy prolonged QT intervals which I get from medications and my PCP keeps putting me on meds that make it get really scary. If the numbers go above like 450 it's in the danger zone. Anything over 500 is hospital admission. It was 514 with my last EKG at rest with no symptoms and my PCP said we'd just check it again in two weeks. My cardiologist said I can't go over 500. She sent me home. When I was in the ICU in Feb my numbers were in the high 700's which caused Torsade de Points. I think I told you all this in anither comment. Sorry. So yeah, I keep dealing with meds I get on and wind up learning they cause prolonged QT intervals and I have to go off them. My PCP is trying to avoid putting me back on Klonopin which was the only thing that helped across the board. They took me off everything in the ICU and we didn't add back the Klonopin. I have tried a dozen other things that are extremely toxic and dangerous and have caused severe shortness of breath, intense yawning and needing to stretch everything which made me have dislocations. So I've been a trooper and humored her. It's time I get back on what works.
I'm really upset to hear you're dealing with something so serious. The last thing you needed was yet another complication and diagnosis that will no doubt complicate everything else that's been so touchy. I'm thinking about you. 3 weeks is insanity. I'm glad you're mom stays with you so much and brought Teddy Graham to see you. Is he your service dog? I ask because you said he hasn't jumped on anyone and you seemed surprised by how well he was behaving and how he did with the elevator.
I think the CZcams arithmetic is not on your side because I didn’t get a notification the video didn’t show up in my subscription box and when ever I watch your videos none of your other videos pop up.😔
I was wondering the same thing. I subscribe to this channel on my other Google account in order to take screenshots to promote my video on my IG story (ha). I noticed that recently when I go to the "subscriptions" tab, my videos are not popping up! Do you know how to fix this?
Do you have the bell on All? I have it on all and didn't get the notification either. Just saw it on your facebook that you posted a new video
Hospital Princess · Cheyanne Perry I have no idea how to fix it. 🤷🏼♀️
I think I (hopefully) fixed the issue because the video is showing up on my end now.
Hospital Princess · Cheyanne Perry I still can’t see it.
It's upsetting to think you have to hold your tongue about things that make you uncomfortable in the hospital.....it's your health and you should be able to point out things that you think need to be done a certain way. If you say it in a psotive way I think they should totally understand and will be more aware the next time.
Babies By the Shore Unfortunately you can say it in the most positive way in the world, but many will still be upset and/or offended that they are being “told” how to do their job. It’s just human nature.
@@HospitalPrincess I suppose so....but it's upsetting to see you and others feel stressed and uneasy with some of the health caretakers....you have enough to worry about as it is. Hugs to you!
Fevers are terrible. This landed me in the hospital for 2 weeks. I was low rbc, wbc and hemo. They had to give me a nupogen shot.
Have they tested you for Lyme Disease and all the Co-infections of Lyme? You can have colon factions of Lyme and I have Lyme disease
You can have co infections of Lyme without having Lyme, I meant, sorry, darn auto corrector and auto text, shaking my head. I'm praying for you everyday.
Does Your hospital and doctors understand how severe your mast cell activation disorder is ? Or do you have to fight hard every time ?
I know you from a Facebook groups and I have severe MCAD and a million other things . It’s always a fight a battle of the wills and educating them and still not wanting to Listen. It’s scary to your life in someone hands . I know you got your parents and a good mama who fights for you . I see the food trials as this illness criteria for long-term treatment for MCAD is not there . One of my immunglost always tells me “🙄 Starr Mast Cell Activation Disorder , POTS and
Dysautonomia are umbrella term they are in their Infancy.
I WATCH YOU because it’s nice to know your walking the same piece of dental floss .
Hugs 🤗
Starr Andrews Strong HG Activist
Cheyenne, have you ever thought about Lyme/co infections? Lyme is hard to test for and can cause a TON of GI issues.