exciting news :)

Hello everyone, I have the most exciting news someone with Lymphedema could possibly have!! After a long & tedious 2 year battle with a pressure sore on my left heel I am pleased to announce that... It has finally healed. The nurses & Dr's kept telling me that I was going to loose my foot/leg. I was so distrort. So for them to actually be happy with my progress it's fantastic. have a great day/night all. Amanda <3

busy week!

Hey Everyone, This weeks been a busy one! First I had an appointment with my Urologist on Wednesday afternoon. He has sent me off to get a CT scan of my Kidneys & Bladder. Those damn kidney stones have been giving me hell for the past few months!! I've had said stones in for 3.5 years now, they hasn't grown much so nothing was done. But I've been getting a lot of UTI's and my SPC [will explain in next post] has been changed more frequently Grr... Thursday was World Spina Bifida & Hydrocephalous Awareness Day!! In the afternoon we had dance lessons! Friday the community nurses came to change my bandage on my left foot. I have had a wound on my heal for almost 2 years now. It's great now because its very close to healing. Can I get a "hallalulia!!!!" [more about it later] Saturday [today!] we went to a local fair/show. It was SO much fun!! Even Hailee went on one of the rides, the Feriss Wheel!! If you know her she HATES anything like that! We go her a show bag [Dora of course] and we got Daddy one too! hehe. I shall put some photos up tomorrow! I won myself one of those "over the top-huge" plush animals, Giraffe. I am totally in love with him [whom has no name]. Well that's my week! How was yours? I have an appointment on Tursday for CT so will let you know how that goes! Amanda <3 Oh yah almost forgot...we have some pretty exciting news about miss Hailee. Will let you in on it next week ;)

my struggles with lymphedema [info.]

Hello Everyone,

today I thought I might tell you all the story of how I came to live with Lymphedema. But first I thought I should explain what Lymphedema actually is:

Lymphedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. Some of that tissue can turn "nasty" and become infected. Lymphedema affects around 140 MILLION people worldwide.

There are quite a few "stages/grades" which I will talk. Lymphedema can be inherited (know as primary) lymphedema OR like myself it can be caused by an accident or injury to the vessels (known as secondary). It happens when lymph nodes are dissected via surgery or something like radiation therapy.

In my case I think (yes still not 100% sure) that after I had major surgery on my spine, to place a rod and screws onto my spine to correct the scoliosis. The doctors actually took out or "snipped" one(1) or more of my lymph nodes. Which in turn caused as you read before damaged to them and I now have to live with lymphedema.

To diagnose or to detect lymphedema early is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". But unfortunately I was unable to tell as my legs are effected and the worst one being my left leg I have no feeling in at all.

Stages

Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.

Grades

Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.

Treatment available

Treatment for lymphedema varies depending on the severity of the edema in the effected limb. Most people with lymphedema follow a daily routine of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of lymphatic massage, compression/bandaging. Complex decongestive physiotherapy is system realistic of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.

Surgical treatments for lymphedema.

Lymphatic vessel grafting. With the possibilities of advanced microsurgical techniques lymph vessels can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The method is proved to be effective. Follow up studies showed significant reduction of volume of the extremities even 10 years after.

Next time I post (which I am hoping with be Friday) I will be talking about my own experience with Lymphedema. Hope you all enjoy the rest of your week!!

Amanda <3.

things are finally looking up!

I'm happy to report that things are finally looking up in regards to my left foot!. I was diagnosed with Lymphedemia back in 1999(?) when I had surgery on my spine to help my scoliosis, by inserting a rod and 6 screws. At first my face blew up and doctors said it was normal to have that much fluid after an huge operation like that. Aproximatly about 12 months after my operation when I finally could sit In my chair with out pain & my brace my mum noticed my legs starting to get bigger. The Lymphedemia had spread yao my legs. I could no longer wear shoes :(. At the birth of my daughter in 2008 a family member asked if I had an Epi, because my legs were HUGE!! I of course said no, not really realizing how big they had gotten I started to get preasure sores on mt leg (left prominently) I had never had pressure sores before, even when laying for 3 months after my spine surgery. Not until about 12 months ago was I concerened about the fluid in my legs. I had quite a huge hole in the soul of my foot, this not only is dangerous because well lets face it, our body's are not meant to have things like this BUT because it was/is on my left leg I can not feel it!! Only by my husband or community nurses checking my leg can they find such things. While in hospital in Nov(?) they talked to me about the possibility of my left leg being amputated! What are these people serious? I used to joke about it when I was younger because I was in my wheelchair full time was there a reason to have my legs?. I came to the conclusion that YES! I needed it!!! If I am sitting on something (like the floor or couch) I need it to balance me. If my leg was to be amputated just below the knee I would always fall over (hehe yeah I'm laughing too). Not only that but having an amputated limb you run this risk of infection. I didn't want to go through that! So I decided to finally let the severity of the situation get to me, I pulled my finger out and actually started to care. It's funny how things like the possibility of loosing a limb can get your butt into gear. It's been over 12 months now since I first got the sore, I have been seeing (3 times in the last 5 months) the wound clinic at one of our local hospitals. What they have been doing has really helped! I'm not 100% sure on the dimensions of the hole (I don't ask or want to see a pic...it's gross!) but I think it was about the size of a Madeleine (or even orange) now its about the size of a 10c piece...YAY!!! I can finally wear stocking to help with the fluid. Oh!! I forgot to mention once you have lymphedemia you live it for the rest of your life. There is no cure. You can massage, bandage, or use stockings and that's it! I have been having a 3 layer bandage put on my leg 3 times a week for aprox 3 moths. You should see the results..it's amazing!!! (one day I will share the pics) Anyway I had my 3rd appointment at the clinic. They were very impressed with my results so far... but the discovered a problem :( (AWW! It was quite the word I used but I'm sure you can imagine). When they were looking at my ties she noticedmy big toe was a little red and there was a small amount of fluid coming out. Doctor wanted mr to goon antibiotics but I'm allergic to 99.99% of them so it means I can't go on any so we just have to clean it everyday and put cream on it. Why oh why does this happen to me??! Things finally start looking like they are getting better and something has to go wrong :( I'm pretty sick of it now!. Well that's my "news" for now! Something exciting is happening to our little family next week that I will be VERY happy to report..so until next time. have fun, find joy the little things and celebrate them!! Amanda <3

I'm out but not myself

Hello Everyone,

I'm out of hospital (I have been for almost a week). Though I am out I'm not myself :(

I felt fine in there.

I came home took my pills/ felt worse than ever.

I went to my GP to change them.

That was 2 days ago.

These new ones haven't kicked in yet.

I just want to be back to 100%.

I hate feeling like this!.

I guess my body is trying to tell me it's time to slow down.

To slow down after the horrid month I had last month.

Ok time to lay down and get some rest...blog again soon.
<3