A Brief History Of My Primary Lymphedema (Part 2)

2009 – Aged 44 – My leg was getting unmanageable and so I tried to find someone to help me sort my leg out. Our Doctor sent me to see our Practitioner Nurse because there was no Lymphedema practice in Hull. She then kept a record of the size of my leg, she bandaged my leg back up like what we were doing years ago at the lymphedema clinic at Princess Royal, Hull.

May 2009 – Aged 44 – My doctor sent me to see a Vascular Specialist at Hull Royal Infirmary.

August 2009 – Aged 45 – Intense treatment of bandages at home with partner & with the Practitioner Nurse continued daily, sometimes several times a day thanks to my partner.

November 2009 – Aged 45 – I went to see the Vascular Specialist at Hull Royal Infirmary and they signed me off as there was nothing more they could do for me as I was already having treatment, of some sorts, on my leg. (Bandages)

Throughout 2010 – Aged 45/46 – Intense treatment of bandages at home with partner & with the Practitioner Nurse continued daily, sometimes several times a day.

Aug. 2010 – Aged 46 – Once my leg had gone down considerably the Practitioner Nurse decided to measure me up for a surgical stocking. A lady had to come down all the way from Glasgow to measure me up & show our Practitioner Nurse how to measure up a Lymphedema leg for a surgical stocking as they were not trained for it.

May 2011 – I was a Lymphedema Model for a day, (Well my leg was) as I was invited to the Orchard Park Medical Centre to let all the Nurse’s watch as a lad came to measure me up & show the Nurse’s how to measure up & fit a Lymphedema leg properly for a surgical stocking as they were not trained for it.

Dec. 2011 – After months of asking and chasing things up, my Doctor arranged it for me to see a Lymphedema Nurse in Leeds. I can’t see the one in Hull as they were for Cancer Patients only which I think is a bit daft if we all have the same ailments even though I, along with a lot of others have PRIMARY lymphedema and they suffer with SECONDARY lymphedema.

Jan 2012 – I had a to go back to see the Lymphedema Nurse in Leeds to test my legs for treatment they were going to give me.

Feb. 2012 – I had a to go back to see the Lymphedema Nurse in Leeds for 2 weeks of intense Lymphatic Massage (Bandaging!) The worse thing about this is having to be sat on a bus for 2 hours to get to Leeds, have the treatment then sit for another 2 hours coming home every day for 2 weeks!!! If it isn’t nice for me, what about the elderly who have the same problem as me, making the same trip! Also during the first week of treatment this is when they noticed a mark on my left leg!

002a - 06.02.12 - Vicki's Leg d

16th Apr. 2012 – I went back to see the Lymphedema Nurse in Leeds for a follow up appointment to see how my leg was doing after the intense treatment. (As you can see in the picture below, the mark is still there!)

002b- 17.02.12 - Vicki's Leg b

All photographs on this website cannot be used without prior permission

Advertisements

2 thoughts on “A Brief History Of My Primary Lymphedema (Part 2)”

  1. My family doctor sent me to see a pain specialist at first I thought it was my heart housing me to have anemia so I had surgery on the front and backs of my legs to open up the arteries and the main valves and my leg offended check for blood clots well I didn’t have blood clots in my legs just kept getting bigger they put me in the stockings and the stockings hurt so bad with the bend of my foot was that it was leaving a crease that was turning into a horrible horrible callous so the nice to start using the wraps and wrapping them that way but I still have the same results my skin feels scaly I broke out in blisters and they had a yellow ring around them and it looks like scams I had 4 on 1 leg and 3 on the other they’re gone now but I have little tiny brown spots all over my legs and like I said my legs swell I’m had to go up and shoe size, I am scared and I do not know what to do I’m seeing pictures of lymphedema in the picture scare me to death I don’t want to lose my legs I am 6 foot tall and I am mostly all legs and its my entire leg if I set with my elbows too long or even five minutes with my elbows on my upper part of my legs I get indentations I get invitations all the way down my lower extremities of my legs and my feet I also noticed I have some type of fungus growing under my toe nails which I do believe has to do with lymphodemia. My doctor can not tell me how I got this I don’t know how I got this he said the only thing he could recommend for me is to go to the Mayo Clinic or the Cleveland Clinic I am on disability with limited income I can’t get to either of those clinics I’m scared and I don’t know what to do I’m a 42 year old woman I have two grandchildren three children my youngest is 17 years old and due to have her first baby in December there are days I can’t walk and I just wonder why am I here if I’m just going to be disabled for the rest of my life is just supposed to be some of the best years of my life my children are grown only for me to get this disease that they do nothing about I’ve never even heard of lymphodemia until I got it why is there not an awareness about it why are there not a scientist trying to come up with medications or ways to fix it and because of my insurance being so bad being Medicare and Medicaid I’m waiting forever for my pump to come in I have not seen a massage therapist at all all I do is put A&D ointment burts bees pointment on my leg and wrap them I’ll never be able to I’ll never be able to wear capris I’ll never be able to address it to my ankles please if you know of anything I can do to stop this or slowing down and let me know when I greatly appreciate it and God bless you sincerely Debra Poe Michigan

    • Hi Deborah so sorry to hear about the suffering you are going through…. I really have no answers for you of where to go for help as i’m in the UK. If you would like to have a talk e-mail me direct, my email is on the left hand side just click it.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s