Lymphedema is Forever

 

You can’t cheat lymphedema.  It can affect a famous actress, different cancer survivors, the soldier who suffered a terrible trauma, a child with a genetic or inherited issue.  It’s with you forever. Don’t follow your treatment? Serious complications will follow.

I will need to wrap my arm like this every night for the rest of my life.

Some of the supplies I need every day, these are a just a portion and these  along with the rest are not covered by my insurance, there are much more not pictured here.  I spoke with my physical therapist about why some people let their lymphedema get out of control. Came to light that perhaps they could not afford all of the supplies.  Homeless?  Have to choose between your lymphedema supplies and paying your rent or mortgage or groceries?   The truth is my insurance pays for none of the supplies I need to keep my lymphedema under control!  They pay for a portion of one sleeve and glove each year that is my daytime therapy (I’ll need at least 2 or 3 each year minimum if I am really careful).  I am not alone, another lymphedema sufferer I know is in the same boat as I am. We both have jobs so we are not going to sink but that boat next to us is sinking.

I am getting my lymphedema under control and was just measured for my first sleeve and glove that I’ll wear during the day.   My insurance is not covering all of this and the supplier called me to make sure I knew my out-of-pocket was quite hefty and not part of my deductible and I was responsible for this uninsured portion.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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12 thoughts on “Lymphedema is Forever”

  1. My mum is a sufferer too, although much improved since the year after her mastectomy (which was what caused it). For her, some very specific exercises helped, but of course here in the UK any supplies that she needs are available free from the National Health Service – how lucky we are.

    1. Thanks! I’m really getting the condition under control but the therapist warned me not to get lazy with my compression stuff or It could get out of control quickly! How are you feeling?

      1. Continue being diligent with your treatment. So glad it is working. I’m improving every day. Therapy works. Hope to be able to sit at computer for more than 10 minutes soon. Thanks. Looking forward to more from and about Henry and his siblings.

  2. Sorry to hear of your fate. Sad that our health system won’t help people like you with costs of “preventive” care (or maintenance care, maybe?) that keeps patients from developing complications that end up costing us all more in the long run. Preventive care needs to be the focus, not treatment after the problem reaches a crisis.

    Chris

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