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Today Mum and I woke up at around 3 AM and stayed awake all day. The time difference is so big here that we can't usually sleep for more than 5 hours. This was our third day in India.
We had some brunch, and then got ready to meet with the international case manager of Artemis Hospital, Lis Wiberg, as well as the fellow patients who will be undergoing the same treatment.
We met everyone in the bar of the hotel. The fellow patients are very lovely people. There are patients here from Australia, Scotland, and Holland I believe. It was so nice meeting everyone, as they understood what it takes to get into this procedure and how MS can affect you. Everyone in the room understood MS, HSCT, and why we're all here. It was a heart warming moment.
MS isn't typically a disease that you can see, or one that many people are aware of. It's difficult for people to understand the brain fog, confusion, difficulty walking, and the host of other strange symptoms MS causes. Even myself, at times, have had difficulty truly understanding the fatigue and confusion my Mom has felt.
Few understand the urgency that MS patients feel when it comes to receiving treatment. For many their future is uncertain, changing on a day-to-day basis. As we discussed in our meeting today, MS patients can't help but go to bed wondering, "will I be able to walk tomorrow?"
We are all so happy and grateful to be here in India, able to receive this treatment.
Lis Wiberg is wonderful. She's a danish angel. She is so kind and does her best to explain everything to us and answer any of our questions and concerns, and she is funny too. She keeps the mood light and maintains the view that there is no use in being negative, and every time someone does not speak well words of the facility, she works even harder to improve and perfect the standard of care at Artemis. In my opinion, she really takes all of the feedback towards Artemis and tries to make the most of it.
She explained the pre-testing schedule that we will follow over the next 4 days. Mom will have an MRI, an ECG, PFT, and meet with a dietician to determine what type of food she should eat during treatment.
Lis explained that there will also be a psychologist visiting us while we're in the hospital to help with any anxiety, frustrations, home sickness, and worries that the patients may feel (she may have said psychiatrist and I am remembering incorrectly).
During the pre-testing days we are scheduled to meet with Dr. Gaurav Kharya, the head of Oncology and BMT, and Dr. Sumit Singh, the director of Neurology.
To those who are not that familiar with HSCT protocol, one celebrates their "second birthday" on the first day of transplant - the day they receive their stem cells back to re-program and remove the memory of MS from the body. This is considered a brand new version of the person, and is celebrated as being "born again" in a sense with a brand-new immune system.
During treatment, my Mom will have two birthdays - her stem cell birthday, and her actual birthday. Funnily enough, another patient here has the same birthday as her, March 1st!
After chatting with everyone we returned to our room to have some dinner, and promptly headed to bed as socializing tends to tire Mom out very quickly from the MS.
Tomorrow we being Pre-testing day 1 at Artemis. We can't wait to meet the doctors!
Since we are coming from Southern Ontario and don't see much sun around this time of year, we are loving every minute of the hot sun coming through the hotel window. It's so nice to wake up to actual direct sunlight!
We had some brunch, and then got ready to meet with the international case manager of Artemis Hospital, Lis Wiberg, as well as the fellow patients who will be undergoing the same treatment.
We met everyone in the bar of the hotel. The fellow patients are very lovely people. There are patients here from Australia, Scotland, and Holland I believe. It was so nice meeting everyone, as they understood what it takes to get into this procedure and how MS can affect you. Everyone in the room understood MS, HSCT, and why we're all here. It was a heart warming moment.
MS isn't typically a disease that you can see, or one that many people are aware of. It's difficult for people to understand the brain fog, confusion, difficulty walking, and the host of other strange symptoms MS causes. Even myself, at times, have had difficulty truly understanding the fatigue and confusion my Mom has felt.
Few understand the urgency that MS patients feel when it comes to receiving treatment. For many their future is uncertain, changing on a day-to-day basis. As we discussed in our meeting today, MS patients can't help but go to bed wondering, "will I be able to walk tomorrow?"
We are all so happy and grateful to be here in India, able to receive this treatment.
Lis Wiberg is wonderful. She's a danish angel. She is so kind and does her best to explain everything to us and answer any of our questions and concerns, and she is funny too. She keeps the mood light and maintains the view that there is no use in being negative, and every time someone does not speak well words of the facility, she works even harder to improve and perfect the standard of care at Artemis. In my opinion, she really takes all of the feedback towards Artemis and tries to make the most of it.
She explained the pre-testing schedule that we will follow over the next 4 days. Mom will have an MRI, an ECG, PFT, and meet with a dietician to determine what type of food she should eat during treatment.
Lis explained that there will also be a psychologist visiting us while we're in the hospital to help with any anxiety, frustrations, home sickness, and worries that the patients may feel (she may have said psychiatrist and I am remembering incorrectly).
During the pre-testing days we are scheduled to meet with Dr. Gaurav Kharya, the head of Oncology and BMT, and Dr. Sumit Singh, the director of Neurology.
To those who are not that familiar with HSCT protocol, one celebrates their "second birthday" on the first day of transplant - the day they receive their stem cells back to re-program and remove the memory of MS from the body. This is considered a brand new version of the person, and is celebrated as being "born again" in a sense with a brand-new immune system.
During treatment, my Mom will have two birthdays - her stem cell birthday, and her actual birthday. Funnily enough, another patient here has the same birthday as her, March 1st!
After chatting with everyone we returned to our room to have some dinner, and promptly headed to bed as socializing tends to tire Mom out very quickly from the MS.
Tomorrow we being Pre-testing day 1 at Artemis. We can't wait to meet the doctors!
Since we are coming from Southern Ontario and don't see much sun around this time of year, we are loving every minute of the hot sun coming through the hotel window. It's so nice to wake up to actual direct sunlight!
Wishing you all the best on your HSCT journey!
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