Support Prasha for New Lungs
Donation protected
My life changed when I was 23 years old, a junior at Polytechnic Institute of NYU. I had lost my dearest cousin to motorcycle homicide. I had a seizure and next thing was I was diagnosed with a horrible disease called “Scleroderma”. I was told, I would never have kids and I loved kids. My mental consciousness were so disturbed. My grades were going down. I did not know what to do. I was so lost in sorrow and depression. Reading more about the disease, I thought there is nothing left for me. My disease was taking over me. My body was getting harder and changing. I refused to go for Chemotherapy because I was scared I would never have kids.
One day I thought, I couldn’t change what has happened and what will happen but enjoy my life till I can. I made a bucket list and I travelled. Experiences made me wiser and happier. I meet a wonderful guy who later became my husband. I told him about my disease and he did not hesistant. He was there for me in sickness and health, despair and happiness. Luckily, I got pregnant. It was happiest day of my life. We had the most complicated pregnancy in the hospital, we were told to terminate our child even at fifth month of pregnancy. My health started getting worser. I underwent preterm labor at seven month, but my doctors intervened and did a wonderful job to stop it. I was put on oxygen to prevent preterm labor. When Jolene was born, I had labor for less then 30 minutes. Our life was filled with joy and a miracle child. However, my story does not end here. My happy story ended on a bitter note when my lungs failed the very next day. My vitals were down; I flatlined. I was on the precipice of death. It felt so close that I felt no pain. Fortunately, my doctors again, saved my life.
For four blissful months, my disease was in remission. I was off oxygen, I was with my baby and husband. Then, as the seasons changed, in October 2013 I was diagnosed with Pulmonary Fibrosis. Pulmonary Fibrosis is when your lungs tissue change into scar tissue making it difficult to breathe. It is the most devastating disease at all. My prognosis of 2-5 years. I was again put on oxygen.
My only hope for full recovery was a double lung transplant. I was assessed for Lungs Transplant Evaluation. I was rejected twice. I even applied for Stem Cell Transplant, I was rejected there too because of the severeness of Scleroderma. In Feb, 2014, I was diagnosed with Pulmonary Arterial Hypertension, Even with supplementary oxygen, my body was not getting sufficient oxygen. I was put on various medications.
In April 2014, Scleroderma was in full recurrence. My skin started getting very hard like wood and stone. My hands started deforming. I couldn’t bend my body. I couldn’t comb my hair, take shower, when I was eating my spoon would fall out of my hand. I had no strength. I was simply dying. My search for treatment were limited. Doctors told me they could not help me. I had so much pain because of internal structure was changing. My respiratory, digestive, circulatory systems were failing. My lungs transplant team then sent me to another doctor, who changed my medication. It didn’t improve a lot but my skin started softening. For me it was like miracle.
Finally, in December 2014, I was listed for lungs transplant. It was the best christmas gift ever. I cried, there was still hope. I could still very well see my daughter grow up.
Currently, my DLCO of my lungs right is 9%. Lung Volume is 32 %. I use 8/15 liter of oxygen and my PAH and PF is severe.
Despite everything, I still make my appointments, I go to my therapies, I go to rehab, I run support groups for my young patients. I still have hope that I will be just fine. I will be oxygen life support free.
The best part of this disease is, I am a happier person now then ever before. This is my strength and its making me stronger and stronger. I might look like I am disabled but mentally I am not. I have learned to appreciate life as it comes.
Life is wonderful, when you accept what you are and what you have. It is sometimes hard to accept this reality because there is no direct answer to any question but you have to keep looking. There should always be hope in your heart and faith in yourself.
With this in my mind, I ask for your help. My insurance will not fully cover the costs of transplant. I don't have any cards to play other than to ask for financial help from kindred spirits like you all. It will help me to be Dual Listed in another center increasing of chance of lungs transplant to come soon.
Now, it is just a waiting game. Waiting for the call to change my life.
I may be worn out, but I will not let this disease defeat me.
Looking for a miracle,
Regards,
Prasha Tuladhar
Team Hope For Prasha
One day I thought, I couldn’t change what has happened and what will happen but enjoy my life till I can. I made a bucket list and I travelled. Experiences made me wiser and happier. I meet a wonderful guy who later became my husband. I told him about my disease and he did not hesistant. He was there for me in sickness and health, despair and happiness. Luckily, I got pregnant. It was happiest day of my life. We had the most complicated pregnancy in the hospital, we were told to terminate our child even at fifth month of pregnancy. My health started getting worser. I underwent preterm labor at seven month, but my doctors intervened and did a wonderful job to stop it. I was put on oxygen to prevent preterm labor. When Jolene was born, I had labor for less then 30 minutes. Our life was filled with joy and a miracle child. However, my story does not end here. My happy story ended on a bitter note when my lungs failed the very next day. My vitals were down; I flatlined. I was on the precipice of death. It felt so close that I felt no pain. Fortunately, my doctors again, saved my life.
For four blissful months, my disease was in remission. I was off oxygen, I was with my baby and husband. Then, as the seasons changed, in October 2013 I was diagnosed with Pulmonary Fibrosis. Pulmonary Fibrosis is when your lungs tissue change into scar tissue making it difficult to breathe. It is the most devastating disease at all. My prognosis of 2-5 years. I was again put on oxygen.
My only hope for full recovery was a double lung transplant. I was assessed for Lungs Transplant Evaluation. I was rejected twice. I even applied for Stem Cell Transplant, I was rejected there too because of the severeness of Scleroderma. In Feb, 2014, I was diagnosed with Pulmonary Arterial Hypertension, Even with supplementary oxygen, my body was not getting sufficient oxygen. I was put on various medications.
In April 2014, Scleroderma was in full recurrence. My skin started getting very hard like wood and stone. My hands started deforming. I couldn’t bend my body. I couldn’t comb my hair, take shower, when I was eating my spoon would fall out of my hand. I had no strength. I was simply dying. My search for treatment were limited. Doctors told me they could not help me. I had so much pain because of internal structure was changing. My respiratory, digestive, circulatory systems were failing. My lungs transplant team then sent me to another doctor, who changed my medication. It didn’t improve a lot but my skin started softening. For me it was like miracle.
Finally, in December 2014, I was listed for lungs transplant. It was the best christmas gift ever. I cried, there was still hope. I could still very well see my daughter grow up.
Currently, my DLCO of my lungs right is 9%. Lung Volume is 32 %. I use 8/15 liter of oxygen and my PAH and PF is severe.
Despite everything, I still make my appointments, I go to my therapies, I go to rehab, I run support groups for my young patients. I still have hope that I will be just fine. I will be oxygen life support free.
The best part of this disease is, I am a happier person now then ever before. This is my strength and its making me stronger and stronger. I might look like I am disabled but mentally I am not. I have learned to appreciate life as it comes.
Life is wonderful, when you accept what you are and what you have. It is sometimes hard to accept this reality because there is no direct answer to any question but you have to keep looking. There should always be hope in your heart and faith in yourself.
With this in my mind, I ask for your help. My insurance will not fully cover the costs of transplant. I don't have any cards to play other than to ask for financial help from kindred spirits like you all. It will help me to be Dual Listed in another center increasing of chance of lungs transplant to come soon.
Now, it is just a waiting game. Waiting for the call to change my life.
I may be worn out, but I will not let this disease defeat me.
Looking for a miracle,
Regards,
Prasha Tuladhar
Team Hope For Prasha
Organizer and beneficiary
Prasha Tuladhar
Organizer
Elmhurst, NY
Gelu Sherpa
Beneficiary
