Jenny's Home Oxygen Concentrator
Donation protected
After surviving cancer twice, the second round left a lot of damage. I was diagnosed with Invasive Breast Cancer in 2013, and had a mastectomy that September. Just four months later, after months of being confined to a wheelchair, they went back to the operating room in January of 2014. The attempt to resection the surgery and release the pressure, tightness, and damage holding back a "normal" life, failed. I was a 42 year old EMT and working on a trauma team, feeling great. Meanwhile, this cancer grew, and I didn't know or feel it. An annual mammogram found cancer taking my career and ability to do basic things, like drive or walk down stairs, away. No longer able to lift patients or preform effective CPR, after 19 years my career as a first responder ended. .
Attempts at physical therapy lead to having the fire department remove me and take me to the emergency room with a high heart rate, extreme pain, and a seriously hard time breathing. They took me back to the operating room a third time in July 2014, and did a neurectomy basically killing nerves in the rerouted muscle.
Nothing worked, and I was informed that I had post-mastectomy syndrome with rare complications causing acute hemidiaphragm and compression of the lower left lobe of my lung. Basically, it is like breathing with only one lung and half of a diaphragm; it is scary and hard when you can't talk to anyone until they can get you out of it. All of it ruined the veins in my right arm, causing a power port to be place over a year ago. We hope the veins will come back some day; we had hoped for a year, but maybe it will just take longer.
The anesthetist that does invasive nerve blocks every month or two questions involvement of my phrenic nerve. There is nothing that can be done to fix that, as it is the nerve that breaths for all of us. Without it, we would have to tell our bodies to breath in and out as the body loses the ability to cause us to breathe without having to make it happen, like opening or closing your hand requires.
At times, it takes a trip to the hospital and/or admission to get my body under control. Anything and nothing can set off a horrific spasm of the left rectus sheath muscle used in reconstructing my left side. It was removed from part of my abdomen and weaved into my chest to create a more feminine me with my body parts. It sounded perfect at the time; no one knew it would lead into a spasm that feels like 300 pounds sitting on your chest. It gets hard to breathe, and my oxygen levels can drop to high 80s to low 90s when it should be 100% for a nonsmoker.
Because my level doesn't stay down, insurance will not cover home oxygen, even though all agree it could help recover at home with the emergency medication kit instead of rushing to the hospital. It could also increase my ability to go outside the house, it is light weight and if I am out and get short of breath. I don't have to leave or find a place to hide, I would have help with me. The oxygen could open the world back up to me; never having to miss out because I can't breathe. It is a priceless thought to have and a hope for increasing everyday life closer to "normal".
My hope is to raise enough money to buy the Inogen One G3 System; it is light weight and having lymphedema in my left hand and arm, with using a cane on my right side, makes it hard to carry anything heavy. If I can raise the funds, I can call them and order the unit over the phone.
Link to information on the home oxygen unit by Inogen One
After speaking with a Inogen nurse, she explained that she would call me ever couple a weeks or so to make sure I was good and the equipment is working correctly. She said that it was true even with a hemidiaphram the insurance will not cover it.
They have medical staff that work with patients. You can't do that buying or renting pieces and the cost is higher without the medical and warranty services Inogen offers. Antoinette in the sales department explained the costs to me and gave me a direct numbr to call if I can raise the funds. [phone redacted] is her number. My primary is helping as well to try to find options if not the Inogen Unit then another like it; he agrees that oxygen could make a difference between recovery at home or inpatient at the hospital. I feels weird to ask for help with this, and I know I serve no one including myself if I let pride stand in the way of asking for help. So I am asking if you can or if you can share this for me. I appreciate the consideration.
No matter what, they all seem expensive. This one appears to come with all the tools and service providers others do not have for the same price, as ordering all the pieces from a medical supply or a place like Amazon.
There are thousands of women out there like me with this rare (less than one percent) condition. I hope to continue to work to draw attention and hope for a cure. I will turn 45 next month. It's been three years of never knowing if this is the day it will hit. Recently we hit a milestone: For the first time in over a year, I made it two months without an emergency visit and had 10 documented minutes of no pain. My hope is that having this, with the emergency medications, will increase my chances of beating it at home and not in the hospital, and to possibly decrease the recovery time and lessen the pain.
I search every day for answers or ways to get back to being able to go up and down stairs at will. I know it may not happen, but anything that increases the odds seems worth it now that everything known to modern medicine has been done. I am a Dana-Farber Brigham and Women's Patient. I have had second and third opinions and lots of trials and misses. I hope this will in the least decrease the discomfort when it hits. I average about eight attacks a month. Please help or share if you can. Thank you.
Attempts at physical therapy lead to having the fire department remove me and take me to the emergency room with a high heart rate, extreme pain, and a seriously hard time breathing. They took me back to the operating room a third time in July 2014, and did a neurectomy basically killing nerves in the rerouted muscle.
Nothing worked, and I was informed that I had post-mastectomy syndrome with rare complications causing acute hemidiaphragm and compression of the lower left lobe of my lung. Basically, it is like breathing with only one lung and half of a diaphragm; it is scary and hard when you can't talk to anyone until they can get you out of it. All of it ruined the veins in my right arm, causing a power port to be place over a year ago. We hope the veins will come back some day; we had hoped for a year, but maybe it will just take longer.
The anesthetist that does invasive nerve blocks every month or two questions involvement of my phrenic nerve. There is nothing that can be done to fix that, as it is the nerve that breaths for all of us. Without it, we would have to tell our bodies to breath in and out as the body loses the ability to cause us to breathe without having to make it happen, like opening or closing your hand requires.
At times, it takes a trip to the hospital and/or admission to get my body under control. Anything and nothing can set off a horrific spasm of the left rectus sheath muscle used in reconstructing my left side. It was removed from part of my abdomen and weaved into my chest to create a more feminine me with my body parts. It sounded perfect at the time; no one knew it would lead into a spasm that feels like 300 pounds sitting on your chest. It gets hard to breathe, and my oxygen levels can drop to high 80s to low 90s when it should be 100% for a nonsmoker.
Because my level doesn't stay down, insurance will not cover home oxygen, even though all agree it could help recover at home with the emergency medication kit instead of rushing to the hospital. It could also increase my ability to go outside the house, it is light weight and if I am out and get short of breath. I don't have to leave or find a place to hide, I would have help with me. The oxygen could open the world back up to me; never having to miss out because I can't breathe. It is a priceless thought to have and a hope for increasing everyday life closer to "normal".
My hope is to raise enough money to buy the Inogen One G3 System; it is light weight and having lymphedema in my left hand and arm, with using a cane on my right side, makes it hard to carry anything heavy. If I can raise the funds, I can call them and order the unit over the phone.
Link to information on the home oxygen unit by Inogen One
After speaking with a Inogen nurse, she explained that she would call me ever couple a weeks or so to make sure I was good and the equipment is working correctly. She said that it was true even with a hemidiaphram the insurance will not cover it.
They have medical staff that work with patients. You can't do that buying or renting pieces and the cost is higher without the medical and warranty services Inogen offers. Antoinette in the sales department explained the costs to me and gave me a direct numbr to call if I can raise the funds. [phone redacted] is her number. My primary is helping as well to try to find options if not the Inogen Unit then another like it; he agrees that oxygen could make a difference between recovery at home or inpatient at the hospital. I feels weird to ask for help with this, and I know I serve no one including myself if I let pride stand in the way of asking for help. So I am asking if you can or if you can share this for me. I appreciate the consideration.
No matter what, they all seem expensive. This one appears to come with all the tools and service providers others do not have for the same price, as ordering all the pieces from a medical supply or a place like Amazon.
There are thousands of women out there like me with this rare (less than one percent) condition. I hope to continue to work to draw attention and hope for a cure. I will turn 45 next month. It's been three years of never knowing if this is the day it will hit. Recently we hit a milestone: For the first time in over a year, I made it two months without an emergency visit and had 10 documented minutes of no pain. My hope is that having this, with the emergency medications, will increase my chances of beating it at home and not in the hospital, and to possibly decrease the recovery time and lessen the pain.
I search every day for answers or ways to get back to being able to go up and down stairs at will. I know it may not happen, but anything that increases the odds seems worth it now that everything known to modern medicine has been done. I am a Dana-Farber Brigham and Women's Patient. I have had second and third opinions and lots of trials and misses. I hope this will in the least decrease the discomfort when it hits. I average about eight attacks a month. Please help or share if you can. Thank you.
Organizer
Jenn Coffey
Organizer
Manchester, NH