Kimber’s third LNT… And Update

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Kimber has been updating us regularly since her original Lymph Node Transfers last year in New York. Kimber has Primary Lymphedema in her legs and has lived with this since a child. The lymph nodes in Kimber’s entire body have been mapped by the use of a specialist MRI and are normal in the upper body but the nodes are missing in her legs. It is very important with Primary LE that these test are done so that nodes are not removed from an area that is short of nodes. Therefore only surgeons who have access to these tests should perform this surgery on someone with Primary LE.. This will be Kimber’s 3rd LNT.. Below is Kimber’s latest update before she heads of to New York for surgery..

“It’s been over a year since my last update from having two LNT’s back in September 2013 with Dr. Becker and Dr. Vasile in NYC. A couple of positive and interesting things have taken place since those surgeries. The most positive is that I’ve had no hospitalizations due to those God awful staph/cellulitis infections. I should have been in the hospital six or seven times by now. I can’t even begin to tell you how life changing this has been. The benefit of me not living in and out of the hospital and not just for me but for my husband and our three kids as well…kids have their mother, husband gets his wife, and I finally get myself. Not only have I managed to avoid the hospital but I was also able to start working part-time. I haven’t been able to work in over sixteen years because of having chronic infections pausing my life and those around me. After I complete the next two LNT’s that are needed, my next goal will be to eventually transition to working full-time. Another positive aspect, although a minor one, is that I am able to ski again. I had to stop skiing about twelve years ago due to the LE as it truly had taken over my legs. Along with all the extreme swelling they also felt like tree trunks and I couldn’t fit into my ski boots no matter how hard I tried. Skiing last winter with my family felt so exhilarating that at one point when I reached the bottom of the mountain tears streamed down my face. I truly couldn’t believe I was able to do this with my family. I also noticed this past summer it was a little easier with the heat. My legs are definitely still swollen but I was surprised how they responded better as long as I was wearing my compression stockings. I will never be able to go with out compression but the legs didn’t get as large in the heat and humidity like they have in the past.

The interesting aspect during all of this was having to switch surgeons. Unfortunately, Dr. Becker no longer has her license to practice medicine in the United States. Not because of her own doing but the laws are completely different in the U.S. and Europe. From what I understand, when she went to reapply for her medical license wasn’t approved. It was upsetting and shocking how things turned out and took place. However, because of Helen and the wonderful women who I’ve met through her that are near and dear to my heart (you know who you are), they helped me to keep my head up and to remain focused on the goal. These women gave me wonderful advice and encouraged me to set up an appointment with two surgeons who also perform LNTs. Dr. Smith and Dr. Dayan are top surgeons in their field, come from respective hospitals in NYC, and they’re both extremely involved with LE and LNT’s. I can’t thank Helen and our friends enough. When I thought all hope was lost they stood beside me and lifted my spirits and helped me move forward so that I could continue my quest for better health as I still needed two more LNT’s.

I’m about to have my third LNT this Monday, December 15th, in NYC with Dr. Mark Smith. I’m having lymph nodes removed from the neck and transplanted to below my right knee. He’s also going to try to “clean up” the top of my right thigh from botched surgeries that I had when I was a teenager. So, tomorrow I leave for NYC and surgery on Monday morning and be a temporary resident for three weeks before I’m able to return home :) Just like last year, I’m a BUNDLE of nerves and will be happy when it’s over. I know I’m in extremely good hands with Dr. Smith and believe things will turn out very well.

I feel extremely blessed and never take for granted about my lack of hospital stays. LNT’s are still extremely new and cutting edge in the medical world, but there isn’t a doubt in my mind that it’s due to this as to why my health has improved, greatly…fingers crossed that things can only keep improving in this battle called Lymphedema.” From Kimber

Thank you Kimber for sharing this with us…I will be thinking of you on Monday and wishing you well xxxx

These are some links to Kimber’s previous updates

http://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/

http://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

http://lymphnodetransplant.wordpress.com/2013/10/30/kimber-five-weeks-post-surgery-for-primary-lymphedema/

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

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.
http://lymphnodetransplant.wordpress.com/ Thanks

Singapore Lymph Node Transfer

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One of the things I have enjoyed since starting this blog is “meeting” others via cyber space and social media. I receive many emails from those thinking of surgery, or those having surgery, many ask questions and others tell me of their experience. In November I had an email from Thomas who was due to have a LNT and LVA in Singapore. The Lymph node Transfer was from the neck to the knee and the Lymphatic Venous Anastomosis was to be used where needed. LVA is a procedure where the Lymphatic vessels are joined to a vein to drain the lymphatic fluid. Thomas has kindly allowed me to share his emails in the hope that it may help others who are either going through or thinking of going through this surgery. There is very limited documentation especially from patients and every story helps in the search to cure Lymphoedema.

Thomas’s story starts 22nd November 2014

Thanks, I am glad that my wife found your blog it gives me hope. I initially thought I would be living with an enlarge left leg for rest of my life. I am open to sharing my experience to encourage lymphedema patients. I know there is so little known, treatment information is not readily available. I was living with this condition for pass 15 yrs! I did not know about treatment until my 3rd bout of cellulitis. I had to be admitted for antibiotics IV, I wish I had known earlier about the surgery.

My operation is to be done by two surgeons. Prof BK Tan and Terence Goh. The Prof will do my neck while Terence the groin. I understand that they did 15-20 such cases over the past 2 years. There is this lady in her 60s or 70s had it done on both legs. They wanted me to meet her prior to my decision, she said there was considerable improvement. That gave me confidence. I am having my operation in Singapore General Hospital. There will also be a guest surgeon from Okinawa, Japan here to observe the surgery.

I think that the physiotherapists play an important role here for me too. They are very well train by the Austrian school (Vodder School)…. the “mother of all lymphedema treatment”. I already see results from the compression bandage.

Please continue your blog for as long as you can , as I think it provides us with support. I am confident that I have little fibrosis, but since my operation that removed my pelvic nodes, more than 15 yrs ago,  I am concern about the effectiveness of LNT and the success of finding good lymphatic vessels for LVA. It is an anxious time!!

23rd November

The doctors will be doing LNT from my neck to groin area, so it will be a long journey for the lymphatics to grow! As far as I know the Dr will be using dye to trace my lymphatic system, so keeping my fingers all crossed that everything will go well for me.

I am currently having bed rest in the hospital to prepare for the operation. I do the massages that the physio taught me. I hope to be in good condition for the operation on Tuesday. Only small problem is the rash on my outer thigh caused by bandaging last week. I am using tubi grip for my calf and leaving it to heal before the surgery. The aim is to reduce the fluid in the leg pre surgery to give the best chance of success.

29th November

Today is the 4th day after my operation. I am getting stronger by the day. I have been ordered to continued bed rested.

I only had one LVA done near the groin. According to the doctor they wanted to see if the LNT is working properly before they do further LVA, which I think kind of makes sense. Anyway they told me that LVA near the ankle may not be effective due to the pressure caused by gravity, it could dislodge the connection, but another doctor advise me that the Japanese surgeons swear by LVA, but to be effective there needs to be a few done on the limb.

The doctor told me that there was a lot of lymphatic leakage when they cut my groin and they had wanted to use some muscles to patch the area. However after a LVA to one of the lymphatic vessels and connection of transferred nodes the leakage started to dry out, but they are not sure if this will be permanent. The whole procedure took 6 hours.

On the second day my calf to mid-thigh was wrapped to gain maximum drainage effect. There was a small concern from the professor, who join in during the operation, that bandaging too early may cause the operated groin to flood. My main doctor then delayed the bandaging for a day, after which the physio only bandaged lightly. At the same time my leg has been elevated continuously. A collection tube was inserted in the upper and lower groin after surgery. Interesting thing was the lower groin drain was always empty, which kind of puzzle them. Over the weekend my calf will not be bandage, for airing, as there were rashes developing before the operation and the physio does not want to risk it coming back. Looks like my skin is quite sensitive.

The neck area is recovering better. The drainage tube will be removed later today.(day 4)

The time for removing drainage tubes will be when less than 20ml is discharge for 24hrs. It has been in the 30s on first day and then some days empty. This morning was 20ml+. Probably due to some movement the previous days, to prevent me from lying on my bed in same position for a long period.

As for my groin, the upper discharge was 100ml for first two days. Then 30+ml and about 20ml today. No sign of it being removed soon as the doctor wants the leaking fluid to be collected as much as possible.

I hope the recovery will go smoothly and well. I am trying to reduce my food intake to less than normal amount so I will not need to have a bowel motion till I can sit up!!!

3rd December

I am allowed to shower since yesterday with my leg elevated straight, a week after my operation. Makes me feel so much better!! The only problem is the dressing gets moist after the shower despite being waterproof and we uses a plastic bag to cover it, so it needs changing after each shower. Nurses have been sponging bathing me for 7 days and hair was only washed once!!

The drains in my leg have been removed, there was bloody discharge in the lower groin drain still, but manageable with a few dressing changes through the day when it is soaked. As for the upper groin drain there was yellow, clear liquid discharge, which the doctor says is the liquid the body produces to repair the wound. All looks good so far…

I am allowed to sit in a chair now, but didn’t sit up as much as I wanted to for fear of squashing new nodes. Yesterday they gave me wheelchair training!!

The doctor wants to go slow on the walking part since we aren’t able to monitor the lymph nodes. He wants to make sure they are not injured. Unfortunately they have no way to find out if the transferred nodes are intact, which is a little worrying.

The physio is here daily to put compression bandages on my leg to just before the wound site. I also hope to catch the compression garment vendor here in time for when I start my walking practice. This way the vendor can take measurements and tailor the garment. It takes two weeks and as I understand there are not many vendors in Singapore due to low demand, there is limited manufacture of garments in Singapore they usually have to come from overseas.

I feel great now, although I am not mobile, my leg has gone down quite a lot with the rest and leg elevated from the first day I arrived at the hospital. Certainly we do not know if or when the lymph nodes will starting work but at least I know most of the fluid in the leg has been removed which gives the nodes and the LVA the best chance of working… Thomas

Thank you Thomas for sharing your experience with us, I hope you will allow us to follow you, as you progress at home and have follow-up appointments with the doctors. Wishing you well soon and able to get out and about again. Much patience is needed now but it is all heading in a good direction…

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

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.
http://lymphnodetransplant.wordpress.com/ Thanks

One year on- still searching.

helensamia:

Sadly the stem cells did not work at this time … But there is always hope for the future of this treatment and others… Never give up the fight for the future treatment of Lymphoedema… Thanks Val for allowing us to share your Journey with this …

Originally posted on lymphodemalifeinkorea:

Well, it is now one year since the start of this diary. This will be the last entry, as there is little more to tell you, I’m afraid.

I have given the stem cells one year to work some magic and in theory, they should have rebuilt some lymph vessels for me, if not all. I don’t know who is more disappointed, me or Dr Shim! He is a very compassionate man and has helped many people who are suffering venous leg ulcers and prevented amputations by applying his knowledge to their illnesses and injuries

My injury was just that- an injury- not a catastrophic failure of my lymphatic system. In theory, then- a small area to repair. It didn’t materialise, and maybe I should organise a top up with Dr Shim, but there are no further ‘repaired’ people to see, to report on, to feel convinced that the method…

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August 2009…… I was only 17, when it all started.

helensamia:

Reblogging this post from a new Blog called Lymph Me… Remembering being disgnosed and not knowing what Lymphedema was… We have all been there so please support and share.. Thanks

Originally posted on LymphMe :

I can still remember the day as though it was yesterday,when I was diagnosed

It was in the year 2009 when I was involved in a school production. The theme was Moulin Rouge and my friend and I Meggan Shiels and a few other girls were a part of the dancing crew.

I got home from school,after the production, on one of the compulsory weekend outs that the school encouraged for scholars who were in boarding school.Production excitement was still buzzing and just wanted to share the buzz with my mom.

Next day, while doing house chores, I noticed that the painless swelling has begun again. And so I did what every teenage girl would do (well some girls), I told my mom about it. She took one look at feet and said ,” Nana, you’ll be fine. You must have hurt yourself during the production and didn’t notice.”

I…

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The leg is getting smaller!!

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On Friday I went for my 18 month post Lymph Node Transfer surgery check up. I am part of a research program here in Sydney. I will have follow-up for at least two years so that the doctors here can make decisions on future LNT surgery. There is a definite opinion that LNT surgery does not work if there is fibrous tissue present, as the new nodes cannot break this down, but can clear fluid and protect against infections. Therefore it is very important for the doctors to decided who is suited for LNT and who is best suited for Lymphatic Liposuction surgery. From this view point, at this time, at Macquarie Uni Hospital they are performing more Lymphatic Liposuction than LNT surgery. There is talk of maybe doing a LNT on these liposuction patients in the future, but so far this has not happened. The hope would be that the LNT would help post Liposuction and stop the limb swelling again. At this time after Lymphatic liposuction compression garments need to be worn 24/7 otherwise the arm or leg will swell. Lymphatic Liposuction is different to the liposuction for weight loss as care is taken to preserve  the existing lymphatics. http://www.ilfconference.org/fibro-lipo-lympho-aspiration-flla-a-lymph-vessel-sparing-procedure-lvsp-for-advanced-stages-of-lymphedema/

So back to my appointment and measurements which have reduced since my visit in March 2014. One of the measurements that is used is the L-Dex reading. http://international.l-dex.com/what-is-l-dex/ This compares the good and bad leg and shows how much fluid is present in the LE leg in comparison to the good leg. In March my reading was 7.1 then June 5.1 and now it is down to 4.5 which is within normal range. This is very exciting as there seems to be a gradual improvement each visit. The doctor also felt the area at the back of my lower thigh had softened a lot, with the help of three weeks compression bandaging, MLD and Compression Garments. I have also had no infections since the surgery 18 months ago so that is a huge plus for me. I am back in a pool without fear if infection which I am very happy about. If this surgery keeps my leg in the best state possible then that is a big improvement, as my fear was always that it could get worse and worse.

I have not been writing so many updates on my own progress as there has been little to say!!! It is a slow and steady reduction which takes lots of patience!!  Will I ever not wear compression?? Only time will tell… Next appointment will be March 2015, my two-year anniversary. I will be having an MRI and Ultrasound done then but I declined another Lymphasyntagraph!! No more injections between toes needed!!

If anyone else has an update to share then send this news via email to helenbrd@bigpond.net.au and I will create a post… As always sharing helps everyone… Helen

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Daring to Bare

helensamia:

Thanks to The Lymphie Life for reminding us that Lymphedema should not define us or stop us from doing anything we want to do.. . Reblogging this as a reminder to all.. Thanks

Originally posted on The Lymphie Life:

Yesterday, I posted a photo to the Lymphie Life Facebook page of my bare ankles—a very big deal, as fellow lymphies can attest to—and the supportive feedback I received was overwhelming. You all are awesome, and because of all the comments, I wanted to address a couple things:

For those who are struggling to bare their lymphie limbs: It takes time! And lots of positive self-talk to gear yourself up. Something that helps me is to start small: I begin by wearing shorts around the house, then graduate to running errands with them, and then—finally—going to an event or social gathering. Exposing our swollen limbs and compression garments feels like a big deal, but it doesn’t have to be. It just takes a little time and practice to get comfortable doing it. Most people don’t even notice, and even if they do—so what?! Our health and happiness is more important than a stranger’s thoughts or comments. There’s no…

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Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time – NaturalNews.com

helensamia:

Always ensure if you have Lymphoedema that you have no broken skin before doing this but is a great way to stimulate the lymphatics

Originally posted on Breast Cancer Authority :

Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time - NaturalNews.com

Dry skin brushing can strengthen immunity, spark detoxification and reverse the hands of time via NaturalNews.com .

via NaturalNews.com.

Long used in Ayurveda, dry skin brushing is a powerful — yet exceptionally economical — healing therapy. Upon first glance, the practice may not seem like much. We may question how a quick session of brushing the skin can provide such impressive results as heightened immunity, reduction of cellulite and overall detoxification. As unlikely as it may seen, dry skin brushing delivers all of the above and more.

With this straightforward technique, you are on your way to glowing health, smooth skin and a happy lymphatic system — this last perk is especially important to keep immunity buzzing and your constitution robust. But how does it work?

When we brush the skin in an upward motion, not only are we removing surface toxins and dead skin…

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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.

http://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.
http://lymphnodetransplant.wordpress.com/ Thanks

An update from Jeanie.. LNT with Dr Chang

imageThis is a link to Jeanie’s post on her surgery with Dr Chang which was in May this year.
https://lymphnodetransplant.wordpress.com/2014/05/22/a-personal-account-of-surgery-with-dr-chang/

Via a comment on this blog Jeanie has written about her latest news, but I thought I would create a post out of it so you could all read it. Love to hear of people’s progress post surgery as this helps others. It is also a way of finding out about various doctors for surgery or therapy.

“Hi Helen! It has been 4 1/2 months since my surgery. I am feeling great and have started exercising and building my strength and stamina back. My initial impressions are favorable about having this surgery – for any people considering whether it is worth it or not. I recently met with Dr. Hutchinson, a lymphedema specialist in Minneapolis. I had never heard of her, and here she was, geographically close to me, considering I have travelled to San Francisco, Chicago, and Santa Monica, to find the most Informed researchers in lymphedema! She is helping me with the next step of physical therapy and will be my ‘go-to’ person for all further decisions related to additional surgeries, etc. (she has been – and maybe still is – on the Board for the national lymphedema network.) Her personal opinion is that Dr. Granzow, in Santa Monica has a more preferred approach to the surgeries involved with reducing and managing lymphedema. I was a little disappointed to hear that as I had obviously chosen to go with the LNT and bypass approach first, …vs the lymphatic liposuction direction first, followed by the LNT. But, as she said, no harm done, and we will now continue to manage the outcome of the surgery to help get the best results. The best news is that my leg is not getting worse! I can see small improvements in my lower leg, and with exercise and a healthy diet, I do see more positive results in my entire leg. Ironically, if I have too any extra sugar or salt, my leg seems to instantly retain fluids …. 8] ….seriously! it feels instantaneous. S, again the good news, is that my keg is not getting worse. There are small improvements…and I remain hopeful for better results in the future! So excited to see the news on lymfactin….I would so love to be a part of that study! Thank you again for all you do to keep the information flowing to all of us out here who are pioneers in the world of lymphedema surgeries! Many hugs!”

Thanks Jeanie for this latest update and glad you are going well. This is a slow process and we do need lots of patience to see real results. It really helps to have the support of others who are going through the same process as it is sometimes difficult to find the information that you need. If anyone would like to share their  experience of living with Lymphedema please leave a comment and I will get in touch with you… By sharing we help each other.. Helen

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Copyright © 2013-2014 by Helensamia. All rights Reserved.

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.
http://lymphnodetransplant.wordpress.com/ Thanks