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

 

 

 

Update for Sometimes Lymphedema just feels Awful

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The previous post “Sometimes Lymphedema Just Feels Awful” was originally posted in September 2013. Jennifer has now sent an update and it is great to see that life can improve due to the new surgical procedures.

Jennifer says…

“I’ve since had 2 lymph node transfers, one to the groin area, then 2 years later area a 2nd one to the inside thigh area. My progress since that last writing has been measurable. I am so much better off than I was before. I don’t feel pain and pressure any more, I’ve lost a few centimeters in circumstance as measured against the ‘good’ leg, and I have no limitations in terms of physical activity.
I ride my bike in the heat and humidity of summer and have no worsening of my edema. I can get through a long day, at the office, running errands, working out, etc., and still be okay at the end of the day. I can take trips, even longer flights with minimal issues of extra swelling. In fact, we got stranded in Chicago on a return from a getaway to Arizona, and sat in the plane for 4 hours, cramped in our what seems like ever shrinking seats and leg room, and had no problems. I am not ‘cured’ by any stretch of the imagination. I still have to wear compression stockings, still the same strength 30/40 and wear a night wrap. I’ve not been able to go without them even for a day so far. It’s been over 4 years since the 1st surgery and 2 years since the 2nd surgery.
I am talking to Dr. David Chang at the University of Chicago about a LVA Lymph-Venous Anastomosis to see about relieving the fluid in the calf and knee area, that are still problematic . He said I was a good candidate.
The procedure would take 4 hours, where a total of 4 incisions would be made to make those connections along the leg. They are very small incisions, less than an 1 inch, and connect a lymph vessel branch to a vein. Though I’ve read that patients have been able to get rid of their compression stockings after this procedure, Dr. Chang stayed neutral on the subject. It really does depend on the individual’s situation. Dr. Chang is only 1 of a handful of surgeons in the U.S. that do this type of procedure. He learned the technique from Dr. Isao Koshima in Japan.
So, I am very near a decision to go ahead with this procedure. I will keep you all posted!”

Thanks Jennifer for your latest update and I look forward to on going news.. Helen

Other posts from Jennifer

https://lymphnodetransplant.wordpress.com/2013/06/04/exciting-news-from-new-york-nodes-are-growing/

https://lymphnodetransplant.wordpress.com/2014/03/20/news-from-jennifer-march-2014/

https://lymphnodetransplant.wordpress.com/2013/05/07/two-years-after-lymph-node-transfer-in-new-york/

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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

 

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

Liz, four weeks and counting down to the first year!!

imageAn update from Liz… Love to read about her progress…

“We are now into the very end of week 3–This Friday makes it 4 weeks since the surgery for LNT and LVB with Dr. Chang. The good news is the ‘wraps are off’–YAH–now I am back to wearing the Elvarex during the daytime and under my workout tights to the gym. I will also wear the Elvarex to work under my scrub pants. I have seen the LE therapist here in CT and she did the MLD (also called the Complete Decongestion Therapy) on Tuesday of this week. That felt wonderful.Tomorrow with will be my first day back to the gym in 4 weeks.

I have been in touch with Lisa, RN at Dr. Chang’s office to ask a few questions and I have also sent emails to the LE therapist who works with Dr. Chang. I just needed a few things clarified. They did get back to me quickly. I should not be expecting a miracle overnight-within the year there will be changes and a reduction in volume. At least I have something to look forward to. All incisions have healed-I use the flexi touch apparatus at night and then I wear the quilted night-time garment to bed. When I wake up in the morning, the leg is soft. I then apply the Elvarex again and go about my day. I know I can not obsess about this. I have to let my body just do “it’s thing”–whatever that may be. I know in my heart I have done all there is to do for the LE and now it’s time to let my body take over and grow the ‘long roots of the lymph nodes’–lol-You have to have fun with this once in a while…On the discharge instructions it is stated that in a couple of weeks, I should get re-measured for new elvarex but I really don’t think I need to–the same size Elvarex I wore before my surgery are the same ones I am wearing now–they are still as difficult to get on now as they were then. I sit on the floor with my purple Playtex gloves/turn on the fan/ and sweat as I struggle to pull them up and fit them into the groin crevice!! OMG that was descriptive!!LOL. I’ll figure it out as I go and I always know I have a fabulous back up system when I need one. Someone out there from this blog will have an answer if I need one. You are all very warm, sharing, caring, people with a wealth of knowledge to share.
Tomorrow, I’m hoping the gym feels wonderful ….. My husband tells me to come to the pool with him (a community pool) but I’m not comfortable yet–eventually I will. Here is my one question–what brand of compression panty hose do you wear that can supply you with the same compression as the Elvarex? When I do wear panty hose, Jobst, which I seldom do because they eventually bunch around my ankle/knee/ groin, and I think they are doing more harm than good. I was wondering if anyone else had any ideas about a different brand other than JOBST medical compression?? Thank you-hope to hear soon–Liz”

Thanks for keeping us in the loop, great patience is needed now till there are signs of change… A softening of the leg seems to be the first change… Helen

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Liz.. Two weeks post surgery … Dr Chang

The latest update from Liz….

“I am now 2 weeks and 2 days post surgery and Dr. Chang denied my email request to go to the gym!!!—Oh well-I had to try—I am allowed to go for a 2 mile walk and “build up to a 4 mile walk” but no gym yet–I have told him that the day I was discharged from the hospital my husband and I went into Chicago and walked at least 5 miles (I wore a pedometer)–it was a casual 5 miles but it was still 5 miles. Hey, I have to listen to him. I really respect his professionalism/ability and I believe I can be and want to be the poster child for LE. I pray every day for the best possible outcome for all of us and LE relief for all of my new-found friends on this blog.
The golf ball size swelling I had at the base of my neck where lymph nodes were removed has decreased in size and for that I am very grateful. It was a small accumulation of fluid which was reabsorbed into my own blood stream without any intervention at all– just patience. Every day is a new beginning for all of us including my lymph nodes–lol–Just like I talk to my beautiful blue hydrangea which have decided to bloom this year because we have had some rain, I also talk to my new lymph nodes which I hope are growing big and strong in my groin….God, I sound crazy but I’m just really excited!! I am hoping to generate excitement and proactive behavior in everyone who has LE–we are at the dawning of a new frontier for LE care..More providers are hearing of the procedures being performed–More insurance companies are approving of the procedures. We are a voice–I know this will happen in our lifetime! God bless everyone and keep hanging on.” Liz

Thanks Liz as always for keeping us updated and your resonses to others questions.. It is a great resource for others.. Helen…

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Surgery with Dr Chang…. Liz… Chicago

imageThis is an update from Liz about her surgery with Dr Chang… It sounds like it has gone very well..

“My Surgery is completed!!! My surgical date with Dr. Chang was on June 19 and I am back home now and the waiting game begins. I will start at the beginning of my surgical journey and hope I can answer any questions anyone may have.

My husband and I arrived in Chicago on 6/17- on 6/18 I was scheduled for 2 appointments-one with the Lymphedema Therapist to measure my left leg as compared to the good leg; the second apt. with Dr. Chang. Both appointments were short and to the point and then we went back to the hotel room which was right on campus-the Quadrangle club. We were within walking distance to the hospital. I did not want to stay in downtown Chicago because the trip up to the medical center was a distance by cab and I was afraid of arriving late for appointments or better yet, I did not want to arrive late on the OR date!!. Furthermore, the Chicago Blackhawks won the Stanley Cup that weekend and it would have been chaos cabbing it up to the medical center.

All day on 6/18 I ate light because I was nervous; my last bite of food ending ay 8pm. On 6/19, at 5 am my husband and I walked to the hospital (about 3 blocks). Everyone was helpful and courteous-a new modern facility-courteous, professional service-everyone was very helpful and calming. I was escorted to the pre-op area where I changed into the OR gown, had an IV inserted into my arm and answered questions, while my husband stayed in the skylab area (7th floor). The gave him a “ringer” like they give you in “Outbacks” (to let you know when the table is ready) it is given so that the hospital staff can let the family know the progress of the patient. Once my pre-op tasks were completed, they allowed my husband to come to my floor to be with me. He was escorted by a patient representative-they were all so thoughtful and professional.

Finally, at about 7 am the anesthesiologist and residents came over and eventually took me into the OR. I said the Lords prayer in Greek as they were wheeling me into the OR!!! Next thing I knew I was in the recovery room- the surgery took about 4 1/2 hours-Dr. Chang did a LNT, and 2 lympho-venous bypasses below my knee. I had no incisional pain at all- I had 1 Jackson Pratt (JP) drain in my right neck and 1 JP drain in my left groin hooked up to a Doppler so we could hear perfusion of the lymph nodes. The only pain I had post operative was a severe anesthesia headache and some nausea. I was treated for the nausea with an IV antiemetic, Zofran. The headache persisted from 1 pm till 8am the next day-they could not give me anything for the H/A (not even Tylenol) because they did not want me to have anything in my stomach in the event I had to go back to the OR. Finally, morning came (6/20), and I was beyond hungry -it had been 36 hours without any food or water-LOL -I ‘room serviced’ almost everything on the menu-(not really)-all I can say is they did finally give me some Tylenol and about 12 hours later the world was a better place-my husband googled anesthesia and the first side effect is headache- so then I understood. I did not have any incisional pain at all. From the first touch of my calf, it felt soft to touch–that was such an emotional lift!! it brought tears to my eyes. The leg was wrapped with the comprilan dressings and the Doppler continued making swishing sounds all night long. The doppler was connected to my left groin. By morning, the foley catheter (which collected my urine) was removed and I was allowed to get out of bed and walk to the bathroom- I would disconnect the Doppler and walk to the bathroom. When I returned to bed, I would reconnect the Doppler. Now it was Saturday morning, 6/20. I was getting antibiotics through the IV for prophylaxis, and IV fluid but within 12 hours, the IV’s were discontinued because I was eating and drinking. On 6/21, the PA came in to see the leg and unwrapped it- when I saw my leg for the first time, I was really thrilled at the decrease in the measurement from the knee down to the ankle. Dr. Chang said I was a prime candidate because I had been wearing compression garments for the last 3 years and also using a nighttime garment and the LE was controlled. I have worked very hard in all aspects of this chronic disorder and all I want is my life back to some sort of normalcy. While in the hospital, I would disconnect myself each hour from the doppler and walk up and down the entire corridor- I figured the corridor length was approx. 1/8 of a mile and shaped like a horseshoe; it was not difficult.

From the groin to the knee it will take from 6 months to a year or maybe longer to see a difference. Depositing a lymph node into a new spot is like putting a seed in the ground-flowers don’t spring up immediately it takes a year or two to see growth from that seed–the lymph node is the seed and it grows over time to become a channel of roots and stems. On 6/22 I was Discharged from the hospital-one drain was removed that day. I still had one drain pinned to my t-shirt but I didn’t care. We took a bus into Chicago and walked a good distance. We even went up to the top of the Trump Tower and had cocktails! On a pedometer I brought with me from home, the distance we walked was about 7 miles each day-not speed walking but casual walking. We stayed at the hotel on campus until 6/25. My last appointment with Dr. Chang was on 6/25. He checked the drain sites and removed sutures in the groin-by now both drains had been removed.

It was an uneventful experience-Thank God. Meaning, what had to get done, got done without complications-now, all I have to do is wait for the results. I feel I have done all there is to do for this disorder and it is time to get on with my life.

I am thanking God for His guidance and standing by my side through this long journey- I know that I would not even know Dr. Chang’s name if it were not for this fabulous blog site-I believe God led me to this blog site and allowed me to gain knowledge and humility from all of the fabulous and heartfelt stories I have read over the last 2-3 years. Thank you all for your prayers during my surgery. I am praying for you all as well.” Liz

Thanks Liz it is good to hear that you are going so well… It sounds like a very positive experience.. Thanks for sharing with everyone ..Helen

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Elizabeth shares her lead up to Surgery on 19th June

imageThis is the latest update from Elizabeth who will be having surgery with Dr Chang on 19th June… I am sure that we all wish her well and thank her for sharing with us her progress…

“I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
I want to share my experience as I go along so I don’t forget anything.

I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening.”

Thank you- Elizabeth

We wish you all the very best on the 19th June… Rest and heal after… We look forward to hearing your progress. Take care Helen

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

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.
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A personal account of surgery with Dr Chang

imageOne of the joys of writing this blog is bringing people together, being able to support them while they go through the process of surgery for Lymphedema, both before and after. I love getting emails and comments with questions plus news of decisions made to have a Lymph node transfer, lymphovenous bypass surgery or liposuction or a mixture of all! Two weeks ago Jeanie contacted me with news that she would be having surgery with Dr Chang the next day..(http://www.uchospitals.edu/specialties/cancer/lymphedema-surgery/) She was feeling a mix of nervousness and excitement, which is quite normal given the surgery is elective and a huge decision to make. She had also wanted to share her story to help others in the future.

Jeanie wrote before surgery…..
“I’ve been reading your blog about your experience with the Lymph node transplant. I, too, am having the surgery (my LE is right leg and basically from the waist down) on Tuesday, May 6th with Dr. Chang!! I’m so nervous, and hopeful, ….yet scared beyond belief!
I had uterine cancer in december 1999 and the lymphedema started about 5 years later. I have done everything. Everything!
I hope you get this message – I just found your Facebook page….https://www.facebook.com/Mylymphnodetransplant?ref=hl
Thank you for your informative sites and pioneering soul!!”

“I am so happy that I was able to connect with you. You have been such a pioneer – and I am so grateful for your experience and your wonderful way of putting ‘words’ to all the complex emotions that go with lymphedema and now the lymph node transplant decisions. I am feeling very very nervous…and a little excited about the surgery. Dr. Chang is taking the lymph nodes from the neck area on my left side. I don’t know how many places they put the nodes into my leg. I will find that out this morning, I think. I believe he mentioned 6 or 7 areas?…..I’m not quite sure of that right now. He’s also doing a lymphovenous bypass at the same time.(https://lymphnodetransplant.wordpress.com/2014/04/10/dr-chang-improvements-in-microsurgery/)He said the surgery can take 7-9 hours. That part probably makes me the most nervous! I’m a little scared of anaesthesia for that long. ….So, all prayers are most appreciated! 🙂

I would love to put my information on your blog. Please feel free to add any of my I formation if you think it could be helpful to anyone else. The decision of whether to do the LNT or not was difficult, but ultimately I decided to pursue the surgery when the reality of my leg continually getting worse was harder to face than the surgery. The entire right side (waist and abdomen) has started to get larger over the past couple years. My right side is approximately 1-3 inches larger than my left side..it gets worse at the top of my leg. …And I have been the most compliant wrapper, daily compression wearer and in the last 6 months – pump user! I have mixed emotions about the pump, but from what I understood, insurance is more likely to help out, if they feel we have gone through all the proper – insurance recognised – channels. I have been told that my insurance will pay half. I have received pre-approval, so I am hopeful they will come through for me. Insurance is always one of the most anxiety riddled areas for new technology…so, cross your fingers! I have blue cross/blue shield of Minnesota.”

Jeanie wrote two weeks post surgery….
“Thank you for touching base! It has been two weeks (yesterday) since my surgery. My stitches are still in and there is still a little discomfort at the incision sites, but over all – the pain isn’t too bad.

I think I can see a little difference in the lower part of my leg. Dr Chang did two Lymphovenous bypass surgeries in my lower calf and the transplant/transfer from my neck to the groin on my right side. They took the nodes from my neck, so I’ve got a 6-7 inch scar on my neck and at my groin! Adorable – not! The bypass areas each have about a two inch scar with stitches.

I can’t remember what it’s like from others who have had this procedure….but, after 2 weeks, I have to admit, at times I wonder if all the discomfort and inconvenience is worth it. I think it is….and I do know that all the results won’t be available until a year from now…….maybe longer. So,I have to remind myself to be patient. I am supposed to keep my leg elevated as much as possible (70-90%of the time) for the first 4 weeks…..And for the next couple weeks after that, just minimal activity….i.e. light walking and golf….no strenuous activity i.e. No swimming until at least 8 weeks out. Im trying to stay immobile and give the lymph nodes a gentle, non-gravity bearing environment to establish themselves. 🙂 ….even though I’m getting bored, I try to stay positive that this is the first stage of the journey.

Also, there is such interesting research occurring right now, with lymphactin….I think the future looks better and better. I would have loved to be able to have the lymphactin with the transfer….but, it isn’t approved for the U.S. yet. It is currently in clinical human trials. Do you know anyone who has had lymphactin with the transfer?

At this time I only have a little pain at my neck incision and at the area below the groin incision.
Thanks for staying in touch!!
If you hear anything new in the world of research (especially with lymphactin with patients who’ve had a transfer) …..please let me know.” Jeanie

Thank you so much Jeanie for sharing the start of your journey after a LNT and Lymphovenous bypass. These surgeries are so new but no one need be alone and there are now others to ask questions of .. One thing for sure is that it brings a roller coaster of emotions along the way!!! Plus much patience is needed for results… I hope that you will allow us to follow your progress over the next few months and years as it does so help those who follow behind!! Thank you so much..

If any one would like to contact me my email is helenbrd@bigpond.net.au

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