MY AUTOIMMUNE HEMOLYTIC ANEMIA RETURNED
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- Опубликовано: 6 окт 2021
- This is definitely not how I wanted to return to my channel but life happens. I wanted to update you all about my health. I hope you are well!
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My name is Samantha Wayne and I have been creating advocacy videos on RUclips since 2009. This channel was formerly known as Live Hope Lupus and was created in order to start a community for those living with chronic illnesses. In September 2019, I transitioned to a plant-based diet and I have found my body is responding well to it. Along with my lifestyle change, I am learning to alter my focus more on the positive. My current content will focus on my healing journey, what food I am eating, and everyday life. I will still be posting an occasional update about my health. I hope you all are ready to join me on this crazy journey of healing. We are all learning how to navigate this life together. If you have subscribed, thank you! I appreciate your support and look forward to talking with you all in the comments.
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DISCLAIMER: This content within this video is not medical advice. The purpose of these videos are for general education and to share my own experience. This content should not be used to self-diagnose or self-treat any health condition. Please consult a healthcare professional before attempting anything in this video.
It's nice to meet someone (online) that has my exact blood disorder! my hemoglobin numbers went down to a 2 they put me on blood transfusiosn for months, I did a lot of lifestyle changes espcially with my diet and getting more sleep. Hang in there! My hematologist is great puts me on folic acid been a life saver to reporudce the red blood cells
Feel better sam, your strength is inspiring💜
I love you Samantha and love everything you do to support fellow warriors. I got diagnosed with Lupus last year and your videos helped me a lot. I would like to thank you sincerely for that. More power to you girl, you are an angel. Wish and pray that you stay blessed, really hope your blood work comes back good and you start to feel better very very soon.
Prayers for a speedy recovery
💜 I’m so sorry, That is one of my fears. I have my finger crossed 🤞🏼 for you! Hugs from Michigan, I’m so happy you have a great husband to support you!! You’re amazing!
It is great to see you but so sorry it had to be this way. You have such a great attitude. I liked that you allowed yourself to feel all the feels. Anyway, I know you've got this. Please keep us updated.
I am sorry to hear this. I am praying for you!
Praying for you stay strong 💪👋
Thank you. Samantha for doing this👍🙏
Si dejaste tu dieta vegetariana, es momento de retomarla. Hace maravillas
Hope you feel better soon.
I’m in the same boat. Your video put a large gust of wind in my sails.
Hello fellow lupus warrior! I just came across your page looking up fibro & lupus. I also saw this video which stood out to me. I had autoimmune hemolytic anemia in 2008 at 8 years old, I had to be air lifted to UC Davis and they literally saved my life! I was in the hospital for a week and had 3 blood transfusions. I got diagnosed with SLE last year at 20. My rheumatologist thinks my AIHA was the first trigger for my lupus. I was wondering if your autoimmune hemolytic anemia is warm or cold? I know it's never easy with these kinda of health issues.. prayers you feel better soon!! 🙏💜
I’m going through the same thing. I have Lupus && it affects me bad. Plus, I just had spinal fusion surgery. Prayers for you to feel better! 💜
@Elena Vigilla thank you for your reply. I will definitely look into it. I’m just really struggling with this spinal fusion surgery. Nerve damage!
Thank you for your videos. At this time I don't have AIHA but have cold agglutinins detected in my blood with no symptoms or impact on bloodwork. But I'm worried down the road I will have issues. Your videos help me know what to look for, and help me feel I'm not alone. I hope you are doing ok!
I am glad that this condition is so manageable in people. I lost my cat to AIHA when her medicines eventually stopped working to control it.
Hey there : ) I just found your channel, congrats on your new baby! Just a quick question for ya. I have a positive ANA test, and also an abnormal hemolysis indice test. I have no idea what the second one means haha. It's gonna be quite a while before I can get in to see the rheumatologist, do you think it's a possibility that there is some sort of blood disorder here? Or autoimmune issue? You seem pretty knowledgeable on this stuff, I would just like to do some research before my appointment so I don't go in totally blind. Thanks for any advice you might have!!
Thanks!
Hi Samantha,
I just stumbled across your RUclips channel while looking for information on Autoimmune Hemolytic Anemia. Thank you for sharing your story and spreading awareness about your conditions. I too have Lupus, Costochronditis, Raynauds, years of anemia issues and more. It’s nice to meet more people on here dealing with the same conditions ❤️🩹
Sorry you are dealing with this again. Autoimmunity can be so cruel to us. Good luck to you. I hope it is able to be brought under control again very soon.
That’s is really interesting about your heels hurting as a symptom of this. I suspect I have this and my feet have been killing me.
I get the heel/foot pain too with my severe lupus anemia
Just yesterday I was wondering how you were doing and when your next video would out! You poor thing, another bump in the road but you got this 💜
I don't want to overstep but would like to offer my newly gained insight since you've spoken about this in the past. From one young woman with lupus to another if/when you would like 😊. I'm having my baby in two weeks and would love to share what this high risk pregnancy and soon to be labor was like with you.
I would love to chat! Thank you. You can email me at samanthamwayne@gmail.com.
@@HealWithSamantha I'll be in touch after baby comes!
How are your inflammation markers?
Samantha, have you tried the Wim Hof method? 🌬
I also have SLE
Mine came back after 2 1/2 years. My hematologist has me on rituxib infusion. She is hoping 4 treatments will help. Currently on 20 mg of prednisone. So sad about having to up my prednisone because after 2 years I finally was able to get down to 3 mg prednisone so who knows how long it will take me to get off that.
I was wondering if you have tried rituxib?
I have not tried rituxib. I am on cellcept for the lupus and that can help.
I am sorry to hear that. Do u think Covid vaccine may have caused it? Wish you speedy healing 💚
Samantha I have this condition. Can you tell me if your Hematologist suggested Rituximab? And how dangerous it can be to take these infusions.
I have taken retuximab, it didn't work for me though, didn't have much side effects either, I have been diagnosed with AIHA in 2021, currently on 10 mg.
Hi Samantha , can I share with you my experience with Parotitis , Salvia glands and treatment currently underway in New Zealand, can you pm me , I have some interesting Information on my experience???
Hi samantha, it has been 2 years since i have been diagnosed AIHA, had started with 60mg Prednisone now at 10 mg, but how do you deal with steroids side effects?
I have the same and the side effects are so harsh. I just push through it. I’m getting tapered down after I finish the Rituxan treatment.
Unfortunately if left undetected and or misdiagnosed it can live within your body for a great deal of time meaning years until your body slowly starts shutting down requiring emergency life-saving surgery but because I can't afford health insurance and I don't seem to meet the criteria for the free insurance I'm left without aftercare at the moment, I've lived with it long enough I can always tell when my body is having aautoimmune hemolytic anemia attack which is most of the time but I'm looking to get the proper help. If you have any of the symptoms of autoimmune hemolytic anemia stress to your doctors to be tested it could save your life. I defeated death to leave this comment!
Are you still eating high raw/smoothies?
Does prednison boost helps? In my case when hemoglobine is under 5 u need bloodtransfusion first. Also if it regularly comes back. Try to discuss about biological Enbrel. It helps in my case especially agains anemie. I pray u will gain back ur health so u and ur hubby can enjoy honeymoon phase.
Hi Ike. Is it autoimmune hemolytic anemia that you have? The type of anemia I have is rare and due to the destruction of red blood cells rather than the decreased production. Blood transfusion would not help much as the new blood cells would just be destroyed.
Thank you!
@@HealWithSamantha in my case my auto immune (very rare) can also attacks my bone marrow so the red blood cells cannot get matured and my body can't use it. When hb is about 4. It's too hard for my body to heal properly even with prednison high dose. But it's true that blood transfusion alone won't be helping cause anemia would come back. That's why I needed a lot of immune supressed like prednison, biological enbrel and others meds. In my case prednison high dose alone won't be enough. Enbrel is very expensive but in Europe it is covered by health insurance. I know that in Asia they won't advise it either because its price. But it is really good...
@@ikepambudi2609 that is great that it is covered in Europe. I have a feeling it wouldn’t be covered here in the US. It seems my other immunosuppressants are doing okay with keeping it under control. It’s definitely not a fun condition to deal with!
@@ikepambudi2609 after a week the prednisone helped me to get back to normal blood work.
@@HealWithSamantha glad to hear. I wish u health and happiness. Take good care of ur health.
hello samantha i am new to your channel i suffer from costochondritis and i have been with this disease for a year i would like to know if the backpod actually heals you i am very desperate and depressed i need help to heal myself :(
After using the Backpod I have not had costo since then. I hope it helps you the same! It is horrible.
@@HealWithSamantha incredible I have been with this disease for a long time and I am losing hope but I have not tried the backpod, it is my last option it took a long time to see results with the backpod
Mam.i am suffering from aiha (ITP) will I have a safe pregnancy and a healthy baby without this disease please tell me
I have ITP/AIHA. You should speak to your own doctors (in case your disorders are secondary to another cause), but my hematologist has assured me that my kids will not inherit these from me.
@@yehudahecht1520 thank u mam
🙏🙏🙏🙏🫶💪✨️🙌❤️
Thanks!
Thanks for your generosity. I am happy that my videos have been helpful to you. I hope you are doing well!