Stronger Together – An open letter to the lymphedema community

Originally posted on Life With Lymphedema:

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together.

It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up a different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED…

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Lymphedema Awareness Day

helensamia:

Joining together to build awareness of Lymphoedema. Thanks for this post that brings together those giving Lymphoedema a voice.

Originally posted on The Lymphie Life:

Happy Lymphedema Awareness Day!

Today is a day for us to join together and use our voices not only to spread awareness about lymphedema, but to celebrate our amazing community. I am constantly in awe of the lymphie spirit, which is so persistent and positive in the face of something that can, at times, feel so hopeless. It’s true that there is no cure for lymphedema, but there is hope through spreading awareness—and that’s what today is all about!

Established by the National Lymphedema Network in 1994, Lymphedema Awareness Day is specially designated to honor lymphedema patients and our health care providers. It’s also a day for us to raise our voices and let the world know that we’re here and that we deserve treatment, insurance coverage, and support for this condition.

Lymphedema affects millions of people worldwide and can be caused by injury, trauma, or congenital defects in the…

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Surgery with Dr Chang for arm Lymphoedema

imageKim shared her surgery story via a comment so once again I have created a post so everyone can see it… Sharing our stories helps others with their own journey. Thanks Kim

“My transplant story started when I saw an episode of grey’s anatomy. The has a breast cancer survivor with lymphedema that was having surgery to alleviate the symptoms.

I had stage 3a breast cancer. Right breast and a large amount of lymph-nodes removed. I went through chemo and radiation, but it was during my reconstruction that my right arm started to look like it belonged to Popeye. I went to my oncologist and after a few tests was told I had lymphedema. Months of therapy and wrapping at night, compression sleeve during the day and extreme low sodium diet. I managed for 4 years, carrying my wrappings and compressor all over the world I travel a lot as an engineer.

I started researching Dr Chang about 2 years ago. He was in Houston at that time and the work was experimental. When I checked back last May, 2014 he had moved to the university of Chicago and the were getting more approvals than ever to perform the surgery. I made the appointment and my family and I went to Chicago. I met with Dr Chang. Nice man. He explained I was a good candidate for the bypass and transfer. I was told each state is different for the coverage on this surgery and that they would submit and let me know. I got approved quickly. I scheduled for December 2014-during my winter break. James-my patient advocate was very nice, the only stress I had was discontinuing the tamoxifen for the two weeks prior to surgery. Dr. Chang indicate it makes the blood thicker and could interfere with the surgery.

We arrived the day prior to the surgery and went to the university of Chicago for pre-surgery stuff. I was able to have my arm measured in Texas to bring with me. Dr. Chang took before pics and other details. We went back to the hotel and went to bed early. Had a 5.30am surgery so we were up at 3 am. Family packed up and went by cab, you do not use cars unless you live there. We were first into pre-surgery and got a bed quickly. I went in about 7.30am and stayed way longer than expected. I went into recovery at 2pm. My recovery was supposed to be 30 minutes but I stayed in there until 9pm. I had breathing complications I wanted to hold my breath:). My family finally saw me at about 7 pm and left for the hotel. I was moved to a room and told that I was on bed rest until they determined if I needed further surgery. Therefore the catheter had to stay in and a no food order was given. I was miserable. I had not be told to take a laxative prior to surgery and I wish I would have. I had a machine hooked up to my arm to determine flow, a Doppler. It sounded like a heart beat. I also had a machine for pain medication. I did not use at all and pain was not bad. I was told my bypasses, I had 3, were working well. I also had the node transplant from my neck. Very long scar, just another badge.

I had to stay in the hospital Friday through Monday and stay in town until Wednesday. They wanted to make sure there was no complications. We flew United into Chicago. No cuts in fees.

Many doctors came in daily to listen. I had a complication, the drainage from my neck was not clear and it was determined that I could no longer eat fat until the drain was removed. I am currently low sodium, under 1000 mgs a day. They took fat away from me and I lost 12 lbs in 3 days. When my diet was changed, I got no explanation why. I had to find out on the Internet. In fact they cancelled all of my food orders and I got no dinner one evening. The nutritionist popped by but did not understand lymphedema so I sent her on her way!! I finally got to see the arm when the physical therapist stopped by. It is smaller, I am happy to report. Oddly the docs that came by never checked it. It was a bit depressing to take a wrapped arm home.

I was finally released. I had two drains to come with me. One under my right arm and one in my neck. I was able to get around but tired easily. Our Travel day was Christmas Eve. I called tsa cares the day prior to leaving. They were not great but they connected with the tsa at the Chicago airport-who was amazing. I was so concerned they would try to unwrap me or try to pat me down. They did not. They met us and escorted us through, they even walked us to our gate. I cried in relief

We got home… tubes dried up over a few days and my husband removed them, Dr. Chang showed him how. About two weeks later my husband removed my sutures. I did have a deep suture that created a bump but is going down. No driving, lifting or sex for 4 weeks. I am past 4 weeks now. Arm is still wrapped. I unwrap an hour a day for showers. I will be measured for a new sleeve in another 3 weeks. I am told the transplants could take up to 1 year to work.

My arm is looking good. I am still low sodium.

Learnings: take a laxative prior to surgery, ask about required bed rest, stay on your diet and wrapping prior to surgery.” By Kim

Thanks Kim for sharing this with us.. Could not agree more re the laxative as would have been much more comfortable post surgery!!! It is great for everyone that we share our experiences… Helen

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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://lymphnodetransplant.wordpress.com/ Thanks

Update California LNT

imageLatest update from Cindy after LNT in California

“I wanted to update my original post now that I returned to work.

Just wanted to say that I am very tired by the end of the day. After work I come straight home and hope my energy level will soon improve. I don’t think my leg is swelling. I will get volume measurements tomorrow. Original measurements were taken from PT in California, which is a problem because different people come up with different numbers. Out of state (out of country surgery is difficult), the communication part is hard to keep up.

I am also having problems with my custom garment. I believe it is too big, as it bunches behind my knee. Prior to surgery I wore off the shelf compression hose. Custom compression garments are new to me.I’m waiting for my 3rd custom garment to come in, they are expensive. In the states my insurance will pay for them if I go through proper procedure. In California, my PT orders them (using doctors credit card), I receive them from Germany and then pay doctor directly and he sends me receipt. My insurance will not pay when it is ordered like that. I need an RX from Doctor, find an in-network person to measure and order has to be placed by an in-network medical supply company. Constant jumping through hoops 😁The other concern I have with the custom garment is how long it takes to dry after washing it!!! Very frustrating!!!!

Lastly, my biggest problem is psychological. I am still very fearful of doing anything that will impact my leg negatively. I am afraid to overuse it. I know that sounds strange, but it impacts my every movement and thought.” Cindy

Thanks Cindy for the update, the psychological aspect of this surgery is something no doctor tells you about, how ever it is very real for those of us who have gone through a LNT… The waiting for the nodes to start to make a difference and the fear of damaging them, is very real and takes time to pass. I hope it helps Cindy that you are not alone in this.. Helen

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Copyright © 2013-2015 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.
https://lymphnodetransplant.wordpress.com/ Thanks

Lipedema Liposuction Surgery – Month 4 Recovery Update with Photos!

Originally posted on Lipedema Lady Fashion, Health, & Beauty!:

10898150_10152927122161397_2175869711591574879_n 3 Months Post Op – Lipedema Liposuction of Arms (I can fit my favorite Anne Klein blazer!)

Hi Everyone!

Happy New Year, and I’m so glad so many of you have decided to join me and follow my story! I hope to bring you more fun and fashion tips this year! I know many of you are anxious to hear how I’m doing! Be sure to follow the blog and like LipLady Fab on Facebook!

3-4 Month Update!

Well, I finished physical therapy (complete decongestive therapy). I completed about 3 months worth following my surgery (Sept. 18th). My lymphedema therapist reports that I lost around 15 Liters of volume since I first began therapy prior to surgery! That is huge! What’s even more exciting is that since surgery my pain levels have decreased significantly, from about a consistent 4 or 5 on a good day (7 on a bad day), to a…

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California Lymph Node Transfer..

imageThis is a post from Cindy, who wrote this via a comment but I felt there was so much useful information it needed to be shared as a post, so everyone would see it.

“December 11th 2014 I had the lymph node transplant which was the surgery my doctor thought would be most beneficial. It was a nightmare getting insurance approval. I have lymphedema in my right leg. My case is a little unusual in that I did not have cancer (though I had a radical hysterectomy because I was thought to have cancer), so there was no chemo or radiation. Unfortunately, 7 weeks post hysterectomy I had emergency surgery for an evisceration (small bowel prolapsed). Lymphedema in both legs started shortly after. My left leg responded well to treatment but not my right leg. I First met with my Lymphedema surgeon in 2012 but at that time was not ready to try a surgical approach. I felt overwhelmed with wearing compression and still having my leg swell at the end if the day. My leg consumed my ever waking moment. I was unwillingly to do anything that could possibly increase the size of my leg. I wore a 40-50 compression and slept with a Jovi at night. The emotional impact of lymphedema for me was huge. Not the cosmetic part, I learned to accept that. It was the constant fear of doing anything to make the swelling worse.

Eventually I decided to go ahead with surgery which was not as bad as expected. Pre surgery I had a lymphascintograph to show placement of nodes. I had been so fearful that the surgery would trigger the lymphedema to become out of control again. During the surgery the doctors took nodes from the left axilla and placed them in the thigh of the right leg (inner thigh not groin). Immediately after the surgery a Physiotherapist lightly wrapped my lower leg in bandages. I did not have any swelling in my lower leg. The bandages could not go higher than my knee because there couldn’t be any direct pressure on the incision, and of course there was the drain. I did have post op swelling in my right thigh and my left torso/hip area, from the donor site. I was supposed to stay in the hospital one or two nights but I developed a hematoma at the donor site (totally unpredictable) and became anaemic because of the blood loss. I spent 5 nights in the hospital while this was treated. On leaving hospital I stayed in California, in a hotel, and rented a wheelchair. For the first two weeks I was not allowed to weight bear on my right leg. Please remember I only had the LNT done. Before I left California, the two drains were removed and I was put in a compression garment (that was loose enough in the thigh…which allowed me to put a surgical pad over the incision). I started MLD on returning home and will go into a better fitting custom garment at a later stage. On 5th January I return to work (I am nervous about being on my feet all day) and wonder how this will affect my leg post surgery. My physio has to wait until 4 weeks post surgery to perform MLD directly over the incision. My leg has no bruising, post-op swelling appears to be gone. It’s hard going out-of-state for surgery, thankfully my doctor is readily available via email or phone call which helps. My California PT and my local PT will need to stay in touch to monitor my progress. Hope this answers people’s questions. Feel free to keep questions coming. I seriously mean that, I know I had a million questions and thoughts running through my head (still do!!). It is too soon to see what type of improvement I get from the surgery. The fact that my leg didn’t blow up is a very good sign and when I left California the doctor said the node already started to vascularise. I am feeling very positive about this procedure. As I have said before, leg lymphedema and arm lymphedema are different. My PT was saying (most of the time) arm lymphedema is easier to stabilise. Gravity and leg lymphedema are constantly working against each other. I look forward to hearing from anyone else who has questions or just wants to compare symptoms they might have”…… Cindy

Thanks so much for this Cindy, gives us a really good picture of the process you have been through.. I hope you will keep us posted on your progress…,Sharing really does help others.. As you say so many questions which Cindy is happy to answer.. Please leave any questions as a comment..

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Copyright © 2013-2015 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.
https://lymphnodetransplant.wordpress.com/ Thanks

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Thanks to everyone who has supported me this year, from readers to contributors, without you this blog would not exist..these are some interesting stats…. .Thank you from Helen xx

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 39,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 14 sold-out performances for that many people to see it.

Click here to see the complete report.

Latest update from Singapore LNT & LVA

imageThis is the latest update from Thomas who had a Lymph Node transfer a few weeks ago in Singapore.. This is a link to first instalment..

https://lymphnodetransplant.wordpress.com/2014/12/13/singapore-lymph-node-transfer/

7th December 2014

I was discharged yesterday. Feels good to be back home.

I have had my measurements for compression garments taken. I am lucky that I may be able to fit into an off the shelf size. Will be back to the hospital tomorrow to try them.

I was ordered to be partial weight-bearing on my operated leg. I try to not walk too much at home, elevate the leg and continue my bed rest. I intend to so till I have my stitches removed. I didn’t dare to really bend my groin too much fearing I may squash the nodes there! Do others have the same feeling?

As far as I know that the garment needs to be re made when it gets loose. The physio here also discourage circle knit garments. I used tubigrip for many years, it does control the size a little but needs to be changed regularly.

I guess it is a long and slow process from now on to see any real results, but I do see my leg coming down as the skin is sagging from the rest. I hope with the garment it will help the skin to contract. I guess my leg is like a deflated balloon!!

11th December 2014

I just received my compression stocking yesterday from my physio, the vendor flew them in from Germany. It is a class two stocking, I was told it was not flat knit as it is not a custom-made one, but would still do the job. This is not the final garment at this stage. My stitches are still not removed so I can only wear them 3/4 up my thigh, leaving some not pulled up. I tried wearing it today again but I experience some pain and took it off. I will probably use a tubigrip or bandage instead for the time being. What brand of compression garments do others use?The physio says the size will increase when I start full daily activities and does not want me to feel disappointed, at this point they would start taking measurements on the progress.

I will have my first review with the doctor on Monday, I am eager to know what his plan is and I have lots of questions to ask! Eg. When to start full weight-bearing, start massages, etc.

26th December 2014

Merry Xmas!!!

I am glad I could get out for a Christmas gathering. I had my stitches removed on Monday. My physio told me to start full weight-bearing on my leg so that I could have my muscle working again. The overall size is smaller, compared to my first visit two weeks ago just after my discharge from hospital! However it was slightly bigger than the previous week due to increased activity. The physio told me to start increasing my activities so that they can get a realistic measurement for the final compression garments that Will be ordered next week. I hope I will be getting flat knit. Dr Terence also ordered toe caps as my current stocking is an open toe compression garment.

After a day of Christmas activities my toes swelled up, as expected, I bet my legs did too. I was reminded that my legs would swell still by the physio, so I am prepared, but I will bed rest during boxing day. The size is coming down but with some walking activities has started to increase again, all I can hope is that my transferred nodes start to improve my lymphatics.

I hope the nodes survive, I do worry about this! I intend to swim when I get better in about 6 months time, my physio says that the pool is good. I am doing deep breathing a few times a day. Dr Terence told me that the MLD can be started in a months time. So far I have been walking well without much pain but I am not doing big movements or squatting.

Indeed it is a roller coaster of emotions.

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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.
https://lymphnodetransplant.wordpress.com/ Thanks