Follow up with Liz.. 8 months post LNT

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It is a while since we heard from Liz as to how she is going after her Lymph Node Transfer with Dr Chang, but she is now back and ready to share her journey and answer questions that anyone may have. The thing that helps so much is to learn from others experiences, be they good or bad. More people are now having surgery for lymphedema and more doctors are performing LNT, LVA (joining lymphatic vessels to veins) and SAPL (lymphatic liposuction). Nothing in this blog replaces advice from your doctor, but it often helps to connect with someone who has had the surgery and ask questions that you feel unable to ask others. I always say that it is very important when looking for a doctor that they have good pre and post operative protocols, as this is not just about the day of surgery. Being prepared for surgery and having your limb as good as it can be may help. Post surgery the care is important too. What do’s and don’ts does your doctor have… Unfortunately they are all different in this area, so it can get confusing, but always follow the protocol your surgeon has requested for you.

Here is the latest update from Liz

“I had a LNT in June 2015 with Dr Chang. My LE started in 2012, 6 years after having a stage 1 cancer of the uterus in 2006. I would love to help anyone who needs questions answered. It is a VERY long journey and not a second of the day goes by that my left leg is not on my mind. I continue wearing the Elvarex one legged panty with the 30-40 mm of hg compression. I sleep with the quilted compression garment with the sleeve that goes over the top of the quilted garment. My surgery was almost 8 months ago and I have not gone back for a follow-up visit yet. It doesn’t seem necessary for me to fly from Connecticut to Chicago in order to have Dr. Chang measure my left leg…. I will go back to Dr. Chang maybe next month… I think there is a reduction in my left thigh, my ankle and calf have not really reduced much… Dr Chang said that LNT was good, he  also did a lymphovenous bypass in my left calf, he was able to find 1 big vessel to anastomose to a smaller vessel to promote drainage from the calf and foot. That is what seems to be taking a lot more time to show results. I remember asking Dr. Chang about the chance of stem cells being used in the treatment of LE but he said there was not enough research that had been done for stem cells to be placed in the groin. OH well I guess we just have to wait and I have to become more patient …let’s all keep the faith.

I will be submitting my whole story soon, it takes a lot of emotional strength to retell this long and painful journey. I am so very grateful for this incredible blog, in my darkest hour, this blog site and all of the wonderful inspiring people helped me thru the LE despair….We are not defined by our lymphedema; that is something we do to ourselves, we are defined by who we are as people. However, the LE is always present and every step I take reminds me of the restrictive, constrictive, thick flat knit garment against my left leg. I long to feel the fabric of my clothes against my skin. I suppose time will tell and I have to learn more patience.” Liz

Thank you Liz for sharing, it can take a long time to see results, it is not a magic cure but hopefully it will eventually help..

These are some links to Liz’s previous updates…

https://lymphnodetransplant.wordpress.com/2015/06/09/elizabeth-shares-her-lead-up-to-surgery-on-19th-june/

https://lymphnodetransplant.wordpress.com/2015/07/01/surgery-with-dr-chang-liz-

https://lymphnodetransplant.wordpress.com/2015/07/07/liz-two-weeks-post-surgery-dr-chang/

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Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog. https://lifeinawheelchairblog.wordpress.com
Thanks

 

 

 

Liz… Five weeks post op…..

imageGood morning everyone,
This is week 5 post op from Dr. Chang– I will be going for re-measurement of my left leg this week and I was told that prior to going for re-measurement, I should make the leg be as small as possible, so that I can get the max amount of support from the new Elvarex for which they are measuring me. The therapist told me to make sure the night before going I use the flexi-touch, then put on the quilted night-time garment on and on top of the quilted garment, wrap the comprilan wrap around the quilted garment…..I should go to her the first thing the next morning while I still have the comprilan wrap on so that I get measured at my lowest possible measurement and in this way, give full support to those new lymph nodes which are growing…..Wow–I guess they know what they are talking about..I even passed that by Dr. Chang’s therapist, Betsy.
By the way, I got my estimation of benefits, (EOB) 2 days ago for the cost of the surgery…anyone have any guesses on the cost of this surgery??? Thank God for insurance…
That is my plan for this week–the hottest days of the summer -in the mid 90’s..AND I have jury duty on Thursday—lol–keep on keeping on….Liz

Thanks for your latest update Liz.. It is great to hear your step by step progress… Thanks Helen

How to protect yourself after lymph node removal during surgery

Nearly thirteen years ago I had surgery for Uterine Cancer, included the removal of 22 lymph nodes from the groin area. Follow up treatment was a month of daily radiation which damaged more of the lymphatic vessels. On leaving hospital I was given a bookmark which told me how to protect myself from Lymphoedema. It was given as a bit of a sideline and not much emphasis given to the importance of protecting my legs, or even what Lymphoedema actually was!!! The other day I was having a bit of a tidy and found this bookmark. Oh how I wish had read it more and realised how important it was to keep my limbs safe!! I think I had managed to break all the rules within the first few weeks including flying with no compression garment and taking a sauna!! No wonder my Lymphoedema started quite soon after treatment. I wish someone had told me how very important that bookmark was, how lymphoedema is a lifelong problem that you have 24/7….

Please share this with others so that they may not have to deal with this problem, or at least have some time before it starts, or are able to protect their limb from getting worse. Any time lymph nodes are removed during surgery there is a risk of Lymphoedema. Below is the bookmark I was given that seemed so unimportant, when in fact it was the most important piece of information I was leaving the hospital with!!

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This is a previous post I wrote with a link to the American Cancer society on Protecting yourself from the risk of lymphoedema post cancer surgery. I have Lymphoedema in my left leg but I must also remember that my right leg is at risk so I must always be very vigilant in caring for both of my legs.

https://lymphnodetransplant.wordpress.com/2013/07/23/precautions-to-lower-the-risk-of-lymphedema-after-cancer-treatment/

Feel free to share with others. It can be distributed via social media, reblogged or added to websites. Please do not change the original content and provide appropriate credit by including the author’s name and a link to this blog.
https://lymphnodetransplant.wordpress.com/ Thanks

Reflecting! Am I Crazy!!!

I thought that I would reblog this, as due to the nature of blogs, which work newest to oldest many followers have missed the start of the journey.. For those who have been there from the start you can skip this one!!… Am I crazy doing this??? Still do not know the answer to that but ask me in another year!!! Well I could know more when I have new scans etc in September.. .. I love your comments and the emails and have “met” so many wonderful people since starting this blog.. A bonus I did not expect…

My Lymph Node Transplant

imageJust over two weeks till I have my Lymph node transplant, on the 14th March, so now starts the count down!! Today I have found myself reflecting on what has led me to this. Why would I choose to have major surgery which is still in its infancy? I have been remembering the last time I had major surgery, that time a choice was not given.

I was told over the phone that I had Cancer of the Uterus, on October 19th 2001, an appointment had been made for me with a surgeon at Royal Women’s Hospital in Sydney. This diagnosis came like a bolt from the blue, totally unexpected. I had been having problems but the word Cancer had never been mentioned prior to this. Suddenly I was in hospital having a Radical Hysterectomy including the removal of Lymph Nodes. Cancer was found in one node so there followed…

View original post 330 more words

How is Sue going in the USA?

I thought you may like the latest update from Sue in the USA.. I have copied from the email she has sent so the words are her own… Thanks Sue glad you are progressing well.

English: Seal of the city of ,

English: Seal of the city of , (Photo credit: Wikipedia)

Well the drains were taken out on Friday — one two three, breath in, blow out and bam-o they are out! The feeling of freedom is beyond description! My pain level is really like a one on a ten scale. I get some tinges of pain in the incision sites. I have about a five inch incision on my left side, under my arm pit, a few inches below that, and one on my left upper thigh. There is no flap visible. The skin is glued together on the thigh and I have steri-strips, no cloth stitches, on the left side incision. The left leg is the affected one. As I think you know, I developed lymphedema almost one year to the day following my total radical hysterectomy as a result of uterine cancer. My surgeon had not warned me of this condition, and I knew of no precautions to take to avoid it. I believe I bumped my leg getting into the shower one morning, and that is when shortly thereafter I noticed a slight swelling in my left leg. I was able to manage it well with initial bandaging, manual lymphedema drainage therapy and the daily use of the compression pump. However, a bout of cellulitis (my only one) in August of 2012 did a number on it and my leg swelling never returned to its pre-cellulitis condition.

I am now feeling some tingling in my leg, which I don’t know is just the nerves waking up or maybe some action happening with the transferred lymph nodes. I had two difficulties to bring to your attention. First, when I tried to put on my compression hose (I was just measured the day before the surgery so I know I have the correct size — extra large), I found that they caused immediate swelling and collection of fluid so I threw those off as soon as I could pull them up. Oh what a joy that is. Then I tried to use my compression pump and really felt it caused more swelling. I find that doing nothing but elevating the leg and moisturizing it is the best thing for me.

Do you use a pump? I know you are using your compression hose but did not remember any info on your blog about the pump. Some doctors are against them. I have to tell you my surgeon, Dr. Kanchwala at the University of Pennsylvania Hospital in Philadelphia, Pennsylvania, is not real knowledgeable about lymphedema. On the day of surgery before they took me into the operating room, I asked him about the compression hose and pump usage. He said, oh we can put you in your compression hose right after surgery and you can start the pump on Monday (two days post surgery). Well I guess he forgot that it would be a little hard to get those darn thigh highs up over the drain sticking out of my thigh and to wrap the compression sleeve around the drain. I see him on Thursday, 4/25, and I will have to give him a little education. Being a surgeon, he is not that up on lymphedema, he just knows how to transfer the nodes!

I had some depression following my use of the pump. Only because I was scared that I did something to mess up the surgery. But it appears everything is okay. I have a nurse who comes in – last week every day and this week just three times and I will be done with her — and she is measuring my leg. Last Monday, my knee area was 17 inches and now one week later, it is 15-3/4 inches in circumference. The ankle swelling is a lot slower, going from 11 to 10-3/4 inches in a week. But Helen, I will take any reduction in size.

This morning I woke up and heard a little reminder in my head — Be patient. This is not going to happen overnight. So I am learning to be more patient with results.

Now that the drains are out, I have only a bandaid on both sites. I have thankfully not experienced any infections at either site. I am taking an anti-biotic twice a day.

Before I had my surgery, I asked Dr. Kanchwala about the possibility of acquiring lymphedema at the site of the node removal. He said it would not happen; that I may have swelling for about six months. So far no swelling. In six months, if this surgery is successful, he will consider liposuction to remove all of the accumulated fat and protein in the leg. I hope this can happen but right now don’t want to get my hopes up too high.

I will report on my doctor’s visit. I am hoping he will order manual lymphedema drainage therapy for me. That should also help. I also may wrap my leg with bandages to see if that will help between now and hopefully getting therapy.

Please make sure everyone knows, as you have been doing — this is a slow, slow progress type of surgery. The results may not be apparent for months or even years. So you and I are hanging in there!.. Sue

Thanks Sue and we await your next update after your doctors visit.

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Bondi to Bronte walk… Photo Helensamia

Lymph Node Transfer… USA

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Sunshine.. Photo Helensamia

One of the reasons that I started this blog was due to the lack of information I could find from patients who had Lymph Node Transplants/ Transfers to the leg. There also seemed to be a lack of post surgical info, what I found seemed to read as if the patient had the surgery, the limb was all good straight away and they went home!!! (All references seemed to be for arms only too). I first thought to keep a diary of my progress, I then thought about a blog so others could share my journey, in the hope it would help another patient having this surgery or thinking about having it.

I launched my blog at the end of February 2013, prior to my surgery in March 2013, almost immediately a lady wrote a comment that she was due to have surgery in Philadelphia USA, she had found my blog while searching the internet for information. Like me she had Lymphoedema in her left leg due to the treatment of Uterine Cancer. She wrote “I have left leg Lymphoedema following the removal of 15 lymph nodes during a radical Hysterectomy for Uterine Cancer. I am interested to follow your journey since I am really worried about this surgery but I am also sick to death of the lymphedema, the pump, the compression hose, the deformity and the depression!” I will call this lady Sue for ease of writing and to protect her identity, though she has given me permission to share her story in the hope of helping other

Sue, as I did, first say the Lymph node transplant surgery on the television, a lady had lymph nodes removed from the groin and placed in the arm pit to relieve the Lymphoedema after breast cancer surgery. The program said she was progressing well and the surgery had been performed at the University of Pennsylvania Hospital. Sue contacted the hospital and made an appointment to see the micro surgeon who had performed the operation. After seeing the surgeon her operation was arranged for 12th April, she was to have lymph nodes removed form below the arm pit in the thorax and placed into her groin.

“A Vascularized Lymph Node Tranfer (VLNTx) is microsurgical procedure where normal lymph nodes and their associated adipose tissue is transferred to a region of the body that suffers from lymphedema as a means to i.) decrease limb size; ii.) alleviate subjective symptoms of “heaviness”, “achiness” and early fatigue; iii.) potentially reduce daily compression requirements; and iv.) slow progression of the disease.

VLNTx were initially introduced in Paris by Dr. Corinne Becker and her associated group of surgeons in 1991. Since that time, Dr. Becker reportedly has performed more than 1500 of these transfers in France, Brazil, Korea and Egypt based on the premise of lymphangiogensis; namely, “like reconstructs like”. This “French School” of lymph node transfer suggests that normal lymph nodes and perinodal fat containing essential stem cells, adipocytes, and macrophages transplanted on their native blood supply, effect a normal repair process in the direct region of prior injury (i.e. the axilla after axillary lymph node dissection and/or irradiation). Key aspects of this approach include thoughtful patient selection, a no-touch, atraumatic harvesting technique, aggressive adhesionolysis in the area of injury and meticulous microsurgical skill securing effective revascularization of the transferred flap. Dr. Becker and her associates have published limited numbers of reports outlining this technique with a focus on the upper extremity, primarily at the level of the axilla and fewer reports at the antecubital fossa.” (Ann Surg 243: 313, 2006; Breast 17: 472, 2008).

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

Sue and I, since her initial contact, have remained in touch  so we are able to share our experience and progress. This has been a help to both of us as we understand why we would have such new surgery…..to be the pioneers of the leg surgery!! For Sue living in the USA there was to be a huge shock, a few days before her surgery she had a phone call from the surgeons office, her private health fund had refused to pay for the operation and she needed to pay $10,000 up front for the surgery to go ahead. In the USA the Lymph node transfer surgery is seen as “investigational” and not covered by health funds. Those of you in the USA who have Lymphoedema or the potential to have Lymphoedema should take a look at this website in the hope of making changes re the health coverage for Lymphoedema care.

Please click on the link below it will take you to the Lymphedema treatment Act website for more information….

<>Welcome to the Lymphedema Treatment Act website.

The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the diagnosis and treatment of lymphedema from any cause. Untreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death. Thus, prognosis for the patient is far worse and treatment more costly when the disease is not identified and treated in the earlier stages.

WE NEED YOUR HELP! We have no paid lobbyists; our cause is entirely grassroots and patient driven. Please explore the site to learn more, then complete as many of the simple steps under the “How You Can Help” menu as you can. The single most important thing you can do is take just a couple of minutes to
Contact your members of Congress using our simple submission form.

PLEASE NOTE THAT BILLS DO NOT CARRY OVER FROM ONE CONGRESS TO THE NEXT. THE LYMPHEDEMA TREATMENT ACT IS CURRENTLY BEING PREPARED FOR REINTRODUCTION IN THE 113th CONGRESS. THE LINK IN THE “Current Status” BOX TO YOUR LEFT WILL TAKE YOU TO THE BILL FROM THE 112th CONGRESS. THE LINK WILL BE UPDATED AS SOON AS THE BILL IS REINTRODUCED.

Although this legislation relates specifically to a change in Medicare law, it would almost certainly result in all private insurance policies following suit. Specific goals of the Act are:

Comprehensive treatment coverage, according to current medical treatment standards,
for individuals with and at risk for lymphedema;
The ability to add new treatment modalities to coverage as they become available and are approved;
Preoperative measurements for cancer patients to aid in early detection and diagnosis;
To provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from the clinical to the home setting;
To enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (compression garments, compression bandages, other compression devices, pneumatic compression pumps, etc);
Reduction in total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.

Sue made the decision to go ahead and pay for her surgery, she felt she had come this far and could now not turn back. Five days after her surgery I had the much awaited email to hear how she was going. Sue was back at home after a two day stay in hospital. She has a community nurse coming everyday to change the dressings and to check her drains. She has an incision on her left side about three inches down from the arm pit, this is where the nodes were harvested, the transfer site is in the top of her thigh on the left leg, rather than the groin. She has a drain in each of these sites and hopefully by now these have been removed, Sue says she has minimal pain. She has been told no baths, swimming or gym  etc for 6to 8 weeks, walking is very slow but she feels ok and unlike me she has no infection which is great. I intend sharing updates from Sue along with my own as every surgery is different with different progress and outcomes. If anyone has any questions please use the comments to make contact and I will answer as best I can. Thank you so much “Sue” for allowing me to share your story as well.

If  you are wondering about the spelling of Lymphoedema / Lymphedema the first is our spelling in Australia and the second is the American spelling… Both are acceptable!!!

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Fire.. Photo Helensamia

Lymph node Transfers and Transplants are the same surgery.

 

Reflecting! Am I Crazy!!!

imageJust over two weeks till I have my Lymph node transplant, on the 14th March, so now starts the count down!! Today I have found myself reflecting on what has led me to this. Why would I choose to have major surgery which is still in its infancy? I have been remembering the last time I had major surgery, that time a choice was not given.

I was told over the phone that I had Cancer of the Uterus, on October 19th 2001, an appointment had been made for me with a surgeon at Royal Women’s Hospital in Sydney. This diagnosis came like a bolt from the blue, totally unexpected. I had been having problems but the word Cancer had never been mentioned prior to this. Suddenly I was in hospital having a Radical Hysterectomy including the removal of Lymph Nodes. Cancer was found in one node so there followed a month of radiation which would have destroyed more of the lymphatic system.

For the past 11 years i have had no relapse of the cancer, regular check ups have all gone well. I finished my radiation on the 4th February 2002 and by the end of February I started to see a slightly raised area from the groin outwards. At first I did not realize what it was but in a few weeks this swelling had spread down to my toes on the left leg and down the inner thigh on the right leg and even my tummy and groin area were effected. This for me was the start of living with Lymphoedema and the daily battle to manage it. This takes a toll both physically and mentally far greater than many would realise. I remember arriving at my doctor’s office one day and slamming down a whole pile of referrals that I needed and breaking down in tears. It was so hard to get help and the internet was a scary place where lymphoedema was concerned eleven years ago. I imagined my legs getting bigger and bigger. It was a nightmare that I did not need.

Fortunately I found out about an awareness day at Westmead Hospital and there at last I found some help. I had Complex Bandaging at Mt Wilga Hospital in Horsby with Dr Helen Mackie for five weeks and was fitted for my first compression garment. A real set of passion killers!! I had a black and a beige pair custom-made waist to foot on left side and to the knee on the right side… Complete with a lace trim!!! Whoo Hoooo!!!

Over the next few posts I thought I would continue to tell you what it is like to live with Lymphoedema, both good and bad. I think by the 14th March you will understand why I would agree to major surgery and at the same time convince myself I am not crazy!!