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Lymphedema follow up.

2/28/2020

4 Comments

 
      My last blog post was 12/04/2019  and it was two days before i had lymphatic bypass and lymph node transfer done at the University of Chicago.   Many of you know the long story leading up to that but I have been getting a lot of people asking me how is it going?  

I have to say i have been a bit disappointed.   It was a hard surgery and for 4 weeks i wrapped my arm like i was a mummy and my arm was much much better in terms of volume.  I could not wait to STOP wrapping and assumed that was the end of it.    Get a sleeve and move on .    NOPE

I have become an expert in Lymphedema and it is a bear of a problem that is so not understood.   

Amazingly i have found two people here in the Grand Valley that have chosen to be experts in this field.  I did not know they existed.  At first i made a commitment to wear a compression sleeve for at least 6 months.  It does not seem to do much but I wear it.  I have spent about $1000 dollars in garments.  Two sleeves for daytime and 1 for night time.  I have been discouraged because once i stopped the enormous wrapping that did not allow me to wear clothes ( for 5 weeks). the swelling just seemed to return.  It is better than it was but it is now where i hoped it would be

This disease is a beast.  It is chronic and progressive.  I am so grateful that my case is milder than many .  Doctors do not know about it.  Insurance companies do not know about it.  

  I have returned to full on exercise and i am grateful that i have strength and flexibility.   My husband thinks it is improved but i am not convinced.  

Today i met with a massage therapist who is very well versed in lymphedema and she gave me so much hope.  Tonight it feels sooo much better.   What i realize is the surgery was not a fix .  It may help but i still have to maintain the practices of decompression and manual lymphatic massage.  ugh.   

It also is not just about fluid but about the inflammatory response that happens and I am learning the complexity of this disease.  interestingly for the first time there is a medical treatment ( medicine)  that is showing promise.  mucinex (guaifenesin)  of all things. I am not a person to take medications but i am starting it tonight because as i understand the trapped fluid becomes thick and gelatinous and will not move so this may thin it and help it move. 

I am so appreciative for those that have reached out to see how I am doing. It has been a bit discouraging but what i Know is that there is not a cure but a movement in the right direction.  I am committed now to doing this manual lymphatic massage therapy weekly for a while.   Of course it is not covered by insurance but so it goes.  

I am grateful that i have found a couple of local people who have chosen to be experts in this field.   I am also grateful that I have full range of motion and strength of my arm and that I do not have this in my trunk or legs which many do.   I am also thankful for all of the people here that have supported me and reached out asking for an update

No it was not a cure but a movement in the right direction and i realize the long term commitment i have to make , mucinex, sleeves. massage therapy and maybe future surgery, yoga and whatever may come.   we will see...

This is an art site but ...  it involves other important things too.  xo


Picture
4 Comments
Susan Wygal
2/28/2020 09:19:59 pm

Stacia, thank you. You have love and support coming to you from this corner of Maine. On a daily basis. Your art feeds you and those around you. It is inspirational.
Love and Support,
Susan

Reply
Juanita Dyer
4/26/2021 07:59:19 am

Hoping you will continue to get more results from massage therapy. So sorry you have to contend with this problem, it has been a long time.
Caring thoughts for you, Juanita dDer

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