Jacqueline: Chronic Pulmonary Aspergillosis
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- čas přidán 7. 03. 2017
- Jacqueline lives with Chronic Pulmonary Aspergillosis and this is her story, how she was diagnosed, how she was treated and her experiences while on several different antifungal drugs.
Short history: A series of chest infections that stubbornly refused to clear up led to investigation and treatment for Tuberculosis, but after starting to cough up blood Jacqueline was diagnosed with CPA at the National Aspergillosis Centre, UK.
The Global Action Fund for Fungal Infections (GAFFI) held a meeting in Liverpool in late 2016 and invited several people living with aspergillosis to tell their stories.
Thank you so much for posting this. I’m a survivor from aspergillosis in my lungs and in my sinuses. I’ve been sick most of my life from this and other auto immune problems. It’s so difficult to talk to people about your systems because they just don’t understand... 🙏🏼❤️ I’ve lost countless friends because they just don’t understand what I’m going through. I appreciate you posting this video so much... I hope you’re doing well. Sending love... ❤️
Hi Tiffany has you recovered completely from this?
I am worried as of my chest pain and black specks coming for about three months.
@@dheerajsharma5417 Hi, yes I actually did. But, I’ve suffered since. I’ve had 17 surgeries for different random things that have happened to me. When I first got sick in 1989 I had a cyst the size of a softball. It was filled with aspergillosis and candida. They took the bottom two lobes of my lung out when they removed the cyst. I’ve had a cyst on every part of my body since. Last year I had a tumor in my right lung. They were ready to remove it, but it magically disappeared? I’ve had an ovary removed because I kept having cysts. When they removed it was hard as rock. I was in the ER last night because my right leg swelled up 3x’s the size… 3 doctors came in and almost sower I had a blood clot. I was having chest pain, shoulder pain and jaw pain. But, then nothing? I have so many issues that they can’t ever find out what wrong with me? I wished I could find out so I can be healthy and move on with my life as a healthy person… I feel crazy…. 😰🙏🏼
@@dheerajsharma5417 if you would like to call me I would love to hear your story and if I can help in any way please let me know. I have been through a lot and maybe I can help you?
@@tiffanymccray9361 hi Tiffany im gonna need yout help
Hi Tiffany, Pls I need your help, How can I contact you?
Am ascultat povestea ta. Sunt bolnava de aspergiloza de 8 ani, sunt operata la plămân de 2 ori. Simptome similare am avut si eu. M-am simțit foarte rău mai mulți ani, acum sunt mai bine. E interesant sa împărtășești suferința cu cei ca tine. Dumnezeu sa ne dea sănătate la toți si viața lunga.
I know how you feel on the outside you still look good but on the inside you feel horrible and you feel like you can't do what you used to do and you want to but you can't
So nice to hear you speak about this pretty awful lung disorder.
I have the same ABPA, I'm 69 years old, on top I have Bronciastasis + asthma. I actually have an infection right now and taking Doxycycline to try to shift it... OK, there are people far worse off than me but to be honest that's no Consolation.
I've been taking Itraconozol for about 3 years but I fear it's not doing such a good job now.
We so need more research into lung disease, its not a nice way to live.
Thank you so so so much! Lots of love and stay better and feel good !
This was very helpful. Thanks or posting.
Oh my goodness , this is what my whole family has, aspergillosis is showing in our lungs, my hubby has gone down to a bag of bones, feeding tubes ! My flat is killing us. Thanks for the story get well soon x
im trying to tell my family the same, mold brings disease
The best thing I did to improve my quality of life was megadose vitamin D (with vitamin k2 and magnesium) this rocketed my energy levels and drastically improved my immune system resulting in far fewer chest infections.
God bless you ❤ I’ll pray for your healing
Hi, thankyou for sharing your unfortunate experiences,i can identify very closely with much of your symptoms.
I will be requesting my doctor to test me for Aspergillosis,which may well be making my COPD much worse than normal.
Wishing you well for the future both physically and economically job wise .
I've just had my third episode of ABPA aspergillosis. I haven't been the same since April of 2015 when it first found it's way into my body. Fatigued and achy mostly. I'm really diving into other people's stories, hearing what they have to say and accepting it as chronic. The first two times I just thought I was unlucky. ~ I agree, you look well. I am always told the same. Good luck to you! :)
Thanks Yvonne. We have a large support from on Facebook at facebook.com/groups/aspergillussupport/ - everyone is welcome and the more people we get the better we can raise awareness
I just joined thank you! :)
How are you doing nowadays?i hope you are better now and staying motivated with the condition.
So sorry to hear of your health challenges, Jacqueline. Please real AlexMW's comment below. Good health to you in the future. Best, Rick Fearn
My husband has this same thing. I find Dr.s totally unaware of how to get rid of this. My husband was in the hospital for 3 weeks, almost died, and now has been on Voriconazole for over a year. His liver is now going. I think a Rife machine could kill this body intruder, but I don’t think anyone actually has the exact machine as the instructions were destroyed years ago. I’m praying for help, but am starting to lose hope. Good luck to you!
I’m sorry about your husband, hopefully you get more answers soon! Mainstream Dr’s are useless 😒
Have you tried a Naturopath of Functional Medicine Dr?
Praying for your husband I am dealing with the same and I am terrified for him 😞
Is there a possibility that this cannot be detected on a chest CT? I’ve been told that I have some benign nodules, some airway thickening and a lot of inflammation. Other than that they can’t tell me anything, other than get another chest CT in 3-6 months…. Great, what am I supposed to do about this horrible, chronic cough all day every day?! No help whatsoever! 🤬
I have to take Delta 8 CBD just to ease some of the coughing, which doesn’t take it away completely. I also take a bedtime Delta 8 so that I can at least sleep at night.
I have heard that anti fungals really don’t do anything for Aspergillosis. I will be talking to my Naturopath next week to have him test my sputum and if I have Aspergillosis I’m going to find out what he thinks is the best option for treatment.
I cannot believe with as advanced as we are and all the “medical advances” that we can’t find real relief and healing from this! Blows my mind!
Aspergillosis is only treated with antifungals..... It's a fungal disease. It may not show up on CT but can be better detected through sputum samples or biopsy during bronchoscopy. What kind of symptoms are you having?
Im so underweight every day is like i have to try to eat enough to stay alive today. It sucks.
How are you now? Any improvement?
What’s the trial drug called? My mother is currently battling MAC lung disease and Aspergillosis. She’s Currently taking voriconazole 😢
I'm going Tuesday for a procedure to break it up. Apparently it has settled in scar tissue from lung cancer? I'm very confused by all this. I also am getting sores on my legs? So very grateful to be in remission, but sometimes feels like everything else is falling apart now lol. I also have HS, that took over a year to diagnosis, not quite sure why I am so tired. Aspergillus, or all the other stuff? I apologize feeling sorry for myself at the moment, when I should be grateful.
It’s great to see someone feeling sorry for themselves, sometimes we are all we have ,
such as my case.
Poisoned by my Landlord.
Caught him in the act w video camera on my neck, as I was recording the Mold.
The contractor was Re-covering the Mold under board under kit sink.
One day, My sis & I smelled a horrible sewage smell in kit sink. When looked under the board under sink, it was full of Mold.
I wish more than anything in the world I never would have caught them.
They chopped the Black Mold out from under the sink. it u3ft wide & 10-12” deep. Black Mold, I HAD just tried to recover from from the last house I lived in.
I was perfectly healthy when I moved here from Oregon.
They chopped up the Mold in house, spread it everywhere. All over the entire house & garage, all was covered in Mold.
I had begged them to contain the area.
The first house B4 was really really bad. I had never dealt w Mold before. I started getting ice pick pains in legs, Migraines so bad, Cognitive function decline, I started researching it & found a disease called CIRS, Chronic Inflammatory Response Syndrome.
I bought the book by Richie Shoemaker that explained an allergy to Mold. By that time I was so sick I couldn’t get up from the couch. My son was making me soup when all the sudden everything in the house became covered in a White Mold, it was very hot in the house. My son said Mom, all the silver wear is covered in Mold. The hot water pipe had exploded as it had been leaking for over 5 years under the house. The owner knew this and didn’t do what the plumber had told him to do, there was a slow hot water leak under house, a $2.99 repair. Instead they lied to me w a Mold test I never saw saying it was just surface Mold, it was all in my closet & wall facing North. All around my bed. I couldn’t figure out where it was coming from as no water source there.
My Son carried me out of house.
I started to feel better, I looked under the house on the side there was a small vent opening.
There was Toxic Mold covering the entire boards, posts and wood under the house. It was WHITE MOLD? There had been a slow hot water leak under house for 5 yrs. They knew it & didn’t tell me.
We lost everything in the world & started over in the next house
I started writing about. My Dr refused to test me for CIRS, for 10 years. I begged & begged.
She thought I just wanted pain meds. So lame. I have ABPA, CANCER NOW ALL OVER MY BODY, & 25 other autoimmune diseases. Try to get help ASAP as there is no cure that I know of? If they diagnose it right away you can be cured. If not it’s fatal. I am actively dying now, never got help from anyone. It took 25 years for me to get ONE MEDICAL STUDENT that heard my story and tested my mucus POSITIVE, I told them for 25 yrs. Begging for testing, told them what I had from each house. Advocate for yourself & get TESTED!! Sorry so long
What antifungal therapy is she getting, she doesn’t say what is working for her?
How long a people can live with abpa if it is diagnosed at the age of 30 and aspergillus ige-1.09
Total ige-1250
Is there any possibility by acquiring a good diet and and anti fungal diet and doing excercise give me at least 20 years from here.
Dear rajeev, do u have abpa also?
James Pielago hi James,my younger brother have this and I am very disappointed to know that medical science is not able to do anything
@@TheRajeevkumarjha yeah, there is no synthetic drug can cure abpa, how s ur brother now?
James Pielago I have not told him about all this.he is normal .I just know the people fight with this naturally for a 20 or more years.i will utilise there experience
@@TheRajeevkumarjha what remedy he undergo? Btw, srry for asking u, becoz my friend is suffering from this now..so can u help me
Abpa effect to convince I em married please help me