How I am now, 4 years after my HSCT Stem Cell Transplant - UPDATE
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- Опубликовано: 25 окт 2024
- Hey everyone, it’s been a long time since I gave an update on how I’ve been doing since my stem cell transplant 4 years ago.
Well actually it was my stem cell birthday on Monday, where this time 4 years ago I underwent a stem cell transplant and received my new stem cells back to me through a blood transfusion. This was meant to be the best treatment available that would help me in my fight to stop progression of my illness.
I always knew, the transplant was not a cure and that maybe I could be one of the unfortunate ones where it wouldn’t help me or stop my progression.
Well I’m sad to say that unfortunately for me, my illness slowly progressed over the 4 years and made my mobility worse.
In the past year I’ve had many obstacles arise which has caused me to stop using my walker (which I was previously using). It means that I now heavily rely on my wheelchair. This in turn has made it difficult to stand, transfer and even keep my balance unaided because I spend a lot of time sitting. In the wheelchair and my legs are becoming weaker.
I’ve tried to get back into walking with my physios but after trying and many discussions, we all agreed that it was going to be difficult to walk as my legs do not want to communicate with my brain to lift them. It’s most likely nerve damage that causing this.
I’m constantly reliant on my husband who is now my full time carer because I need help even getting to the bathroom, which means I’m not left at home alone for more than a few hours.
Between my husband, daughter and family, I’m very fortunate that I always have the help and support I need, both physically, mentally and emotionally.
I still continue to do my stretches and exercises, use my therapy bike, practice standing and more. I feel if I don’t do these then I will only become less mobile. You know what they say ‘if you don’t use it, you lose it!’
Anyway, I just wanted to share with you how I am, as I know lots of you have been asking and I know I always reply with ‘I’m good thank you 😊’ (it’s just my natural response like most people)
Even though I struggle with day to day life, one thing I’m grateful for is that I am still able to SOMETIMES do things for myself without asking for help. I’m grateful that I am able to eat without choking, sleep in the foetal position, go to the toilet myself on the odd occasion, lift my legs into the bath and lots more.
I may not always be able to do these things independently everyday but the days I can, makes me feel great, because it’s the small wins that count.
How do I stay positive?
Don’t get me wrong, I’m only human, I do sometimes cry and hate the life I live!! I do get frustrated and angry!! I’m so glad so say these days are few and far between. I always remind myself how lucky I am to be able to do what I can.
I’ve made many friends along the way with my 20+ years with this awful condition and have come across so many different symptoms. Some people have pain, some have been in a wheelchair soon after they have been diagnosed, some can’t eat solid food, the list is endless.
My coping mechanism is to be grateful for all that I have.
Most people go through problems, be it emotionally, mentally or physically even though they may come across as perfectly normal.
With this in mind, it’s easier to deal with your own problems when you acknowledge there is someone out there who is going through tough times a little bit more than you.
I hope you find that this insight to my life inspires you or helps you to appreciate life. I hope that it helps my fellow MSers, gives hope and comfort and to see this life we have in a different light.
Love, peace and good health to all xx
Watch other videos to get an insight on other things I have been up to.
Follow or subscribe to my channel for future updates on my multiple sclerosis and follow my journey.
If you have any questions, leave a comment and I’ll respond to you x
❤ Hi Deepa, I hope you doing well.
Thank you so much for the update Deepa. I have been following your journey and I am in the exact situation as you. I had HSCT in November 2019, so this year marks 4 years since my transplant. I am currently using an electric wheelchair to get around the home permanently, and as much as I try to exercise I am still not getting better. My husband helps with almost everything at home and I am so thankful to have him by my side. My right hand is so weak I can no longer write anything and my knees are like yours which is called knee kissing. I can no longer lift my legs too. I agree with you on getting HSCT before your condition gets worse. Let's hope a breakthrough for a cure will happen in this lifetime. Hugs to you and I ❤ you. xoxo from Singapore 🇸🇬
thank you for being so honest about your treatment I am very sorry you feel that it didn’t work for you you’re still a warrior and an inspiration to many stay positive!
Thank you for taking the time to watch and comment x
Hi Deepa, dont accept not walking. Have you tried cold therapy? You are battling well, especially seeing as you've been taking all these experimental meds. You're not alone 🙂 hugs x
I've been following your journey and videos your always in my thoughts
Oh thank you so much for following me. I still remain positive, but since having my treatment I have still deteriorated. I’m yet to do another video but I’m just going through a lot of stuff at the moment.
I do spend most of my time in a wheelchair these days, but I also have a business which keeps me busy.
All I can say is, I’m still very grateful and blessed for everything that I am able to do x
You have every right to complain! Morning my fave bit, chillaxing while everyone else is getting on tube to work 😂 Hypnotherapy for MS is really good I’ll find link now!
Thanks for sharing your update - I've been looking into HSCT Stem Cell recently and talking to my doctor. Keep on going fellow MS Warrior and much love and respect to your husband.
- Scott
Thank you Scott, there is no right or wrong answer to whether you should have hsct. I would suggest doing as much research, pros and cons. A lot of the hsct groups tell you the positives and not so much the negatives.
Good luck in your journey, and feel free to drop me a note of you have any questions.
Best of luck x
dear Deepa. God speed to u and ur familly ☀️
Hi Deepa, I’m so sorry that you’ve had a decline with your health. Thank you for providing an update. Keep being as active as you can carry on exercising and doing the daily chores which you can manage. Do you follow any kind of diet I know a lot of msers do and they find that it helps them.
Keep reaching out to people, Do you have an ms centre in your area. These centres are located nationally , I’m not sure where in the uk you’re based. Please go to one if there is one in your area. It will be a good way to socialise with others. You could even go and volunteer or get involved in their therapies or help with activities / fundraising etc.
I hope to see you post more videos. Keep pushing forward & never lose hope (I know that’s easier said than done). Take care, Grace 😊x
Thank you for your lovely words. Luckily I’m quite social already, I’ve thought about the MS clubs but am busy with hubby, working and my daughter that I just wouldn’t have the time.
I’ll keep moving forward as much as I can, these still slot I can do 😃
Me? Diagnosed in 2016. Post the Jab, I am now seeing signs of didease progression; all confirmed recently by WHO Study.
It is good see you, and i hope that you get better
Thank you x
hey! i have a small theory about why it didnt work and if its from the place i think, then the essentially use your own stem cells to do it. This sounds like a red flag only because we have developed autoimmune diseases due to our immune systems not working properly and clearing out your system with chemo and reinserting your own stem cells back in in my mind is essentially trying to fight fire with fire. Those same stem cells were apart of the original reason that this developed. However, younger/healthier cells that are still compatible might essentially reboot the immune system properly. I've seen this same problem with people who get bone marrow stem cells or adipose fat tissue derived stem cells from their own body re-injected. Sometimes they might be expanded like overseas, but you're trying to use old non-working cells to fix your old non-working cells... without getting too much into the science weeds of it, it just doesnt make sense. However, I think the potential for this therapy is the sky.
Or maybe the autoimmune disorders aren't really autoimmune disorders! Maybe there is something " antigens" or whatever that manipulate the immune system or that spread in multiple parts of the body " based on type of disease " and when immune system try to fight that foreign particles there happens the collateral damage. there are some points I thought of when trying to put that argument. 1. In 99% one is not born with the disease so the immune system was working properly then usually after the age of 20 it starts behaving strangely. 2. All autoimmune disease tend to flare up that when the damage happens it goes into remission before it hits back. My point here is that if the immune system is not functioning properly why it hits and then stops for a certain period of time before it hits again. 3. No matter how they try to suppress the immune system still there is flares! Damages continue 4. Why autoimmunity has a wide range of manifestation, some attacks the brain and CNS, some attacks the thyroid gland, some attacks the skin, some attacks blood vessels some attacks the liver etc." more than 80 autoimmune diseases ". Decades have past and no matter how they find new ways to suppress the immune system even with high chemotherapy doses like in HSCT the disease tends to relapse! I've always wondered when they are going to declare that suppression of immunity is waste of time and health of the patients and instead of that they put real effort to find the real cause and fix it? What do you think?
Yes, all very interesting comments. Opinion: Yes, I agree. Treatment, but No Cure or Progression on Improved Methods Toward Cure. Question: Why?? Answer: There Is No Money in Cures, only {Treatment}...
I am so sorry it did not work for you Deepa. Makes me wonder about the credibility of all those Facebook HSCT groups where they are constantly boasting about miraculous results that people achieve post-HSCT. For every success story, how many stories like yours exist that we are not being told about I wonder? I just wanted to ask a quick question if I may. Was your disease in SPMS phase when you decided to get the HSCT in Mexico?
Hi Abhibav,
Yes you are right, it’s not a miracle treatment and I feel these groups on Facebook don’t show the negative side of it too.
When I was diagnosed I was relapsing remitting but that was 24 years ago. I think when I decided to do hsct I was spms but was never categorised by my neurologists. I’m sure they should have changed it.
Please feel free to contact me deepadavdra@hotmail.co.uk if you have anymore questions.
Good luck and stay healthy
Hello, my sister. I want your help in giving me advice. I am sick with MS and have a problem with walking. Can I use Vampira? Can it help me? If I leave it, the situation may become worse. Sorry, my language is weak.
Hi there, thank you so much for reaching out. Fampyra can help with the doors of walking but I’ve got to warn you that it becomes addictive and I feel once your body is used to it and it doesn’t work so well, then you may need to carry on taking it as without it you may feel worse.
I actually can’t walk anymore, but I have to continue to take Fampyra because, without it, my speech becomes slurred, my hand becomes fatigued, and I’ll become jelly like.
If I was to give you any advice, I would say, join a gym and do weight-bearing exercises on your legs to keep them strong .
I hope this helps you and good luck with your MS. Please feel free to ask any more questions.
Have you tried Botox injections in your adductors to relax those muscles so you can open your legs when using the toilet etc.? I do it and it really helps me. I’m the same as you in that I can’t open my legs.
No I’ve not tried it but have heard of it. I will do some research and see how I can go about getting it done. Thank you so much for the recommendation. I hope you stay well x
ruclips.net/video/uLmgts13dUI/видео.htmlsi=cs6hvR-C9H0WGYrr
This is really good but you to do it everyday! Changed my life!