The End, for now

Posted on Updated on by veenakuttyCategories:Uncategorized

I passed! 😀

It’s hard to believe this treatment journey has come to an end! I just had my 6 month checkup and I passed(the treatment portion) according to the bone marrow transplant and neurology teams🥳


What does this mean?

1. Blood counts– they have all returned to normal. No transfusions necessary!

 2. White blood cells– my immunity is almost back!  My CD4 count is 226 (normal is 500-1200) and risk of serious infection is low. No more bactrim(or in my case pentamidine). I’m still taking acyclovir until I get the shingles vaccine. I have to get my baby shots since my system was completely wiped out! I got 4 shots (Prevnar, Hib, Dtap, and Hep A/Hep B) the other day! Poor babies 👶 I completely understand how they feel now! 

3. Weight– I am eating well and regained my weight. I lost a lot of muscle after the chemo but now I’ve gained some! Thank you peloton 😄

4. Complications– I guess time will tell, but it seems as if HSCT pushed me to menopause! So hehe I get hot flashes 🥵 But no big deal!

5.  Hair growth– I have hair now! Not exactly my style but it’ll grow!

6. Neurology– My MRIs are stable! No new lesions. You can see the demyelinated and atrophied areas but that won’t change. We just don’t want it to get worse. So right now we’re good, but we’ll see in a year.

7. Heart– My heart ❤️ is no longer running marathons. It beats usually 70-90 beats/minute. I still have to take the medication metoprolol to keep it in line. 😋

8. Incontinence: This has improved! I only wear diapers when I’m out of the house just in case, but I am hoping can get rid of those soon! 

9. Swelling– My feet 🦶 no longer look like pumpkins, but there is still some swelling 😋

10. Walking– I’m still using a Rollator around the house. I use a wheelchair for long distances when I’m out. The transplant took quite a bit out of me so I am still not at the level I was at before the transplant. I still have some ways to go but I am going to Physical therapy and hopefully I can improve this.

11. Fatigue: This is one thing I have noticed has improved! It’s been years that I’ve been able to sit down and read without falling asleep 😴

This has been a crazy journey and I have to thank my bone marrow transplant team and Dr. Majhail.

Dr. Majhail swears he is smiling under the mask! 😀

And all of this would never have happened without Dr. Bermel and Rebecca Lang!

This is us and Dr. Bermel said that I had to STAND in the picture WITHOUT my rollator – I mean, after all it is kind of like an advertisement 😋

So in conclusion:
I feel that stem cell transplant was a necessary treatment for me. I was going downhill fast. The jury is still out and only time will tell if this was worth it.

Would I recommend it?
I think it should be a case by case decision. It depends on your disease activity, your age, and your history with the other disease modifying agents. If things are going well it might be better to stick with what’s working? Stem cell transplant is a lot to go through and is not for everyone. For some, the treatment would be worse than the disease itself. For others, HSCT may be the only option that makes sense.

veenakutty

21 thoughts on “The End, for now”

  1. Wonderful news Veena. I am sure your blog is helping a lot of people not many people would be able to explain the minute details like you did. It takes about a year fir a baby to walk so you are already ahead. Also a big salute to your support system. Great job.

  2. Praise God and it’s so wonderful to know the progress Veena. Please stay positive and will keep you in prayers.

  3. Fantastic news, Veena 👏👏👏
    You are an inspiration to many.
    We are so happy and relieved to know you are the treatment worked for you.
    Love and hugs!

  4. Thank You for sharing your journey. You look so beautiful. I will continue to keep you and your family in my prayers. 🙏🏻💙

  5. So good to hear your update. Stay strong and in good humor. It’s who you are. Love you.

  6. Great news and thank you for detailed updates- Slow and steady wins the race👍Veena!
    Salute to the teams!
    Saraswathy aunty

  7. Thank you for sharing your journey; both the success and the challenges! I’ve enjoyed your sense of humor and it has served you well. Continue to be strong. Lisa King

  8. You look amazing Veena! I can’t wait to hear how much more you improve as time goes on!

  10. Congrats on seeing the finish line. Thanks for sharing your experience.
    I had my HSCT in December 2020 in Puebla Mexico. I was told that the

    Lymphocytes normal range
    (1.18-3.74
    10e3/uL)

    Is what we should be tracking to gauge recovery. Mine is still LOW
    0.61 10e3/uL.

    It seems that you are tracking other markers? Is that true?

    Thanks
    Charissa

    1. There are lots of labs that you should be tracking. It might be best to see a hematologist to make sure everything is okay. I’m sure you are fine, since everyone’s levels go up at different rates but you might need to be on different prophylactic meds if you’re cd4 count is low.

  11. Hoorey…. dear Veena, this is great news! Truly inspiring! You are the beacon of light for those MS patients who are looking for guidance and hope! You are an example of hope, aspiration, endurance and humor inspite the challenges you had to go through.
    So good to see you are gaining weight and your hair is growing back. Thank you so much for sharing your story and pictures.
    With lots of love, aunty and uncle

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