5 months post surgery update and MRL results

One node growing… But wish and hope there are more… Good luck xxx

My lymph node transfer journey UK

Hi all,

So I had my MRL on the 3rd july and just received some preliminary results this week. The surgeon says it is good news, that they saw one functioning lymph node on the MRL and this means that the flap is alive and working. I was a little disappointed that they didn’t see any more nodes as surely one node can not do what I need it to do. I know it is still really early days and there may be others there that were just not seen but it is so hard to be patient. I am hoping to have another MRL near to xmas time where hopefully they will see more growth from the free flap and the channels forming more pathways. Has anyone else had an MRL before and if so what did they see? I know i should feel so happy that the flap is…

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Liz hits the pool.. Great Lymphoedema exercise

imageHey Everyone,
Last evening was another milestone–my first time in our community pool in 2 years!!!–It felt wonderful–Very ‘freeing’–no need for compression garment just pure freedom. My affected leg felt exactly like the unaffected leg…and guess what?–no one even noticed my leg. I had this misconception for the last 3 years that the whole world was looking at my leg but that is not reality. I had the feeling that my leg was so important to everyone and people would be staring at my leg but the truth is …it was only important to me which is still huge but it can not rule your life (It ruled mine for 3 years and I’m so sorry I allowed that to happen)….The mild compression the water provides is gently messaging your extremity and encouraging lymphatic drainage.

We have been having a miserable heat wave here in CT. for the past few days and the water in the pool was cool, clean, and invigorating. I paid for a new membership so that I could remain motivated to go to the pool at least 3 times per week and get that ‘feeling’ again. Hopefully, it is encouraging those new lymph nodes in my groin to grow big and strong.

Someone had written at one time that she wore compression garments in the pool. After discussing this point with Dr. Chang’s LE therapist and my therapist here in CT. I wanted to clear up the fact that compression garments in the pool are not needed. The water pressure provides that service to us. Thank God!! Liz

Previously I have written about Aquatic exercise and how good it is for Lymphoedema.. This link also includes videos of water exercises… Water is a natural compression and just walking up and down the pool is great for the legs as there is more compression at the feet and less going up the body… Just like a garment!! Freedom… Helen

https://lymphnodetransplant.wordpress.com/2013/07/21/aquatic-exercise-for-lymphoedema-includes-video/

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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