In support of Kiran's surgery and healing
Hello Everyone,
I am reaching out to all of you for help! I have been silently suffering for years with a lymphatic system condition, where my lymphatic system is unable to drain the fluids naturally.
A little background: I am a tiny person, 5ft 2”, who used to weigh 110lbs. I wanted to do a marathon for Father’s Day in 2014, so I started running, and all of a sudden, I started gaining weight waist down. Initially, doctors thought I was just gaining weight, so they asked me to maintain a healthy diet, and exercise more. I tried harder, but I was surprised, because I ate fewer than 1000 calories a day, and exercised a lot; but still it was just getting worse. Over the next 3 years I became 145lbs – with a size 0 on top, and size 8 on bottom. I knew something was not right, because my diet and exercise was great. The issue was not the size. The issue was that I was in a lot of pain. It was chronic pain 24 hours a day. My legs were always bruising. I had many sleepless nights when my legs would cramp all night long. After 3 years of starving myself and exercising, when nothing changed, I got a referral to Vascular specialist in Winnipeg. Finally, I had answers to my questions, but it was a painful discovery. They told me I have a combination of lipedema/lymphedema. Its chronic and progressive. Some people end up in a wheel chair by the time they hit stage 4. I was also told that, there is no cure as of now, only management of symptoms.
So, we started one-hour lymph drain therapy/massage every day, bandaged my full legs starting with my toes all the way up, for four weeks, and then they gave me a level 2 compression garment, which I would wear for the rest of my life. I would wake up, do my manual lymph drain for an hour, put the garment on, and by the end of the two-hour mornings, I am exhausted both mentally, and physically. Good news was the pain started reducing, swelling was going down, so was my weight. I became more mobile, as I was not in so much pain anymore. I was back to 120-125lbs. So, I was just carrying extra 20lbs of fluids. It was ironic, because I was eating way more. It was actually all the extra fluids from my swollen legs that I was losing because of manual lymph drain and compression/bandaging.
However, if I miss one day of lymph draining or don’t wear the compression garment, I feel a huge difference…the heaviness comes right back with standing, just within a few hours. The pain begins to creep up. I don’t sleep at night, if I stand for even 4-5 hours during a day, without break. I want to be able to do things I enjoy and live a life that is pain free.
When I met my vascular specialist this year, he gave me hope! He said, I could go for a surgery in Germany; and they have been successful in the past so many years. Especially, since I am still in the early stages, and young. The only issue is that, it is not covered by insurance. We just bought our house two years ago, and now here I am, applying for another line of credit. A few friends came together and they are helping me do a small fundraiser for the upcoming surgeries (Total 3 surgeries), between Jan to March 2020. It will cost me anywhere between 30-35,000, which includes cost of surgeries + flights + stay.
I really appreciate all your support. It means a lot to me. I was really shy about sharing my story and asking for help, but as I am writing I am feeling better by being able to share with you all. Thank you so much for all the love and support! I will try to keep you all posted as much as I can once the treatment begins :)
Many thanks to all of you for reading my story and your support is greatly appreciated.
-Kiran
Working away from my desk!
I am reaching out to all of you for help! I have been silently suffering for years with a lymphatic system condition, where my lymphatic system is unable to drain the fluids naturally.
A little background: I am a tiny person, 5ft 2”, who used to weigh 110lbs. I wanted to do a marathon for Father’s Day in 2014, so I started running, and all of a sudden, I started gaining weight waist down. Initially, doctors thought I was just gaining weight, so they asked me to maintain a healthy diet, and exercise more. I tried harder, but I was surprised, because I ate fewer than 1000 calories a day, and exercised a lot; but still it was just getting worse. Over the next 3 years I became 145lbs – with a size 0 on top, and size 8 on bottom. I knew something was not right, because my diet and exercise was great. The issue was not the size. The issue was that I was in a lot of pain. It was chronic pain 24 hours a day. My legs were always bruising. I had many sleepless nights when my legs would cramp all night long. After 3 years of starving myself and exercising, when nothing changed, I got a referral to Vascular specialist in Winnipeg. Finally, I had answers to my questions, but it was a painful discovery. They told me I have a combination of lipedema/lymphedema. Its chronic and progressive. Some people end up in a wheel chair by the time they hit stage 4. I was also told that, there is no cure as of now, only management of symptoms.
So, we started one-hour lymph drain therapy/massage every day, bandaged my full legs starting with my toes all the way up, for four weeks, and then they gave me a level 2 compression garment, which I would wear for the rest of my life. I would wake up, do my manual lymph drain for an hour, put the garment on, and by the end of the two-hour mornings, I am exhausted both mentally, and physically. Good news was the pain started reducing, swelling was going down, so was my weight. I became more mobile, as I was not in so much pain anymore. I was back to 120-125lbs. So, I was just carrying extra 20lbs of fluids. It was ironic, because I was eating way more. It was actually all the extra fluids from my swollen legs that I was losing because of manual lymph drain and compression/bandaging.
However, if I miss one day of lymph draining or don’t wear the compression garment, I feel a huge difference…the heaviness comes right back with standing, just within a few hours. The pain begins to creep up. I don’t sleep at night, if I stand for even 4-5 hours during a day, without break. I want to be able to do things I enjoy and live a life that is pain free.
When I met my vascular specialist this year, he gave me hope! He said, I could go for a surgery in Germany; and they have been successful in the past so many years. Especially, since I am still in the early stages, and young. The only issue is that, it is not covered by insurance. We just bought our house two years ago, and now here I am, applying for another line of credit. A few friends came together and they are helping me do a small fundraiser for the upcoming surgeries (Total 3 surgeries), between Jan to March 2020. It will cost me anywhere between 30-35,000, which includes cost of surgeries + flights + stay.
I really appreciate all your support. It means a lot to me. I was really shy about sharing my story and asking for help, but as I am writing I am feeling better by being able to share with you all. Thank you so much for all the love and support! I will try to keep you all posted as much as I can once the treatment begins :)
Many thanks to all of you for reading my story and your support is greatly appreciated.
-Kiran
Working away from my desk!
