Kimber.. Five weeks post surgery for Primary Lymphedema

imageThis is the latest update from Kimber who has Primary Lymphedema, she had surgery in New York five weeks ago with Dr Corinne Becker and Dr Vasile this is a link to her previous post just before the surgery and this also has a link to her story of having LE since she was six years old https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

Up date…

Well, it’s been exactly five weeks since I had the second surgery and it’s night and day as to how I feel now. Having two surgeries in a 24-hour period was one of the hardest things I’ve ever done. It’s not the worst but extremely hard. The first surgery, which took place September 23rd, was the hardest out of the two. Not only did I have the transplant to my right groin area but I also had my right thigh that Dr. Becker and Dr. Vasile tried to revise the best they could. The surgery was supposed to last about five hours and it ended up being eight. I was in recovery for another four hours before they allowed me to go back to my room. The day was extremely long as I left for the O.R. at 7:30am and didn’t get back to my room until 8pm. There was definitely a lot of pain but majority of it was from the donor site and my arms were killing me and I had no idea why? What I didn’t know was that I was starting to have Thrombosis settle into my arms. Thrombosis is a very rare side effect and naturally I had to get it…LOL It’s the formation of a blood clot obstructing the flow of blood, which can result in bad swelling and pain. However, when I look back on it now it doesn’t surprise me that I ended up with Thrombosis. The veins in my arms have been completely wiped out and very weak since I was twenty years old due to all the cellulitis infections. It’s why I have a port-a-cath in my chest. I was also told that because the surgery was so long that laying in one position with my arms strapped down and no movement also helped cause the Thrombosis. As far as my groin and the revision to my thigh, that didn’t hurt much at all. However, I was up all through the night because my arms and donor site were just too painful. Than, what comfort it was as through the night I would look over at my husband sound asleep on the couch along with hearing him snore…haha Please excuse my dry sense of humor but I have to laugh because laughter plays a huge part in seeing me through this disease 🙂

The next morning, at 7:30am I was wheeled down to the O.R. to have the second transplant. This time the donor site was my right side with the transfer taking place in my left groin. The original plan was to have the transplant to my left knee. After talking to the doctors in the O.R. it was decided it would be best to put the lymph nodes in my left groin area. Things went very smoothly with that surgery as it lasted just four hours, exactly what my doctor’s thought it would be. When I was able to go back to my room I felt completely out of it and was a bit confused (too much anesthesia). When I woke up my husband asked if I wanted something to eat and I told him I couldn’t as I needed to wait until after surgery. That’s when I found out the second surgery had already taken place and I was out of recovery and back in my room. I had four drains in altogether and immediately felt an enormous amount of pain in both of my sides (donor sites) and both my arms. My arms and hands were so swollen, weak, and heavy that it hurt like hell and I could barely move them. All I could do was constantly watch the clock so I could call the nurse for pain medicine every chance I could. I honestly was just that miserable. I was in the hospital for a total of five days and when I was released I stayed in NYC at the Miracle House for another six days. I had to stay a few days longer because I developed a pocket of fluid at the left donor site that had to be drained. Both doctors wanted to keep a close eye on me to make sure there wasn’t anything else that could potentially develop. I was allowed to return home to Maryland after 11 days. Oh, on a side note, the second night in the hospital, Scott stayed up with me through the night as I made sure to point out how refreshed he looked because of all the sleep he got the night before (once again I just can’t help myself) LOL

Once I returned home a week later I started MLD therapy. I go five days a week and also wear ready wraps (another type of compression garment) on both legs from my feet to my groin. I don’t wear anything at night but will eventually. I’m to do this for three months and then will transition to a compression stocking. I’ve been eating LOTS of protein, vegetables, drink lots of water, take daily vitamins, and walk every day. I just want to do everything I can to try and achieve the best results possible. I honestly don’t want to ever look back on any of this and wonder if I could have done something different. So, I’m willing to do WHAT EVER it takes!

I go back to see Dr. Becker and Dr. Vasile in November. It will be interesting to see what they have to say about the results so far. I am seeing an improvement but it’s hard to decipher if it’s from the transplants, the MLD therapy, or maybe a little bit of both? I’ll also find out how Dr. Becker wants to proceed with the other transplants. I will need them in my knees and more than likely my ankles as well. Even though I had a rough time with the surgeries I want to point out that my situation is very much different. My case is so severe with being Primary and in two limbs. For me, I don’t mind being aggressive only because I know what I’m dealing with and what I’ve been through since I was six years old. My disease is so incredibly aggressive and forceful that I’m willing to go the extra mile to try to combat it. With out a doubt I have absolutely NO regrets and will do it over again with my knees when my doctors feel I’m ready. For anyone who might be considering lymph node transplant I don’t want my story/experience to alter your decision. Having two transplants done in a 24-hour span is a very rare occurrence.

Helen has told me this requires lots of patience along with it being an emotional roller coaster and I couldn’t agree with her more. Even though this will be a long process I do believe from the bottom of my heart it will all be worth it in the end. While this isn’t a cure I feel for the first time I could really get some much-needed relief from all the swelling and hope it slows the infections down and maybe eliminate them entirely. However, if God forbid it doesn’t work out the way I wanted at least I know I tried and gave it EVERYTHING I possibly had. Once again….keeping my fingers crossed!!!

Once again thank you Kimber for sharing your story and keeping us up to date with your progress… I should add that Kimber’s arms were back to normal after three weeks and are now fine.

This blog does not replace medical advice and everyone is an individual in their needs. In creating these posts it is to share mine and others experience, of the surgical journey, on a personal level rather than a medical one.. If you would like to share your story please email me on helenbrd@bigpond.net.au

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Helping to fund Research

Just though I would share with you a small piece I wrote, to be used in letter, as part of a fund-raising program for research into Lymphoedema at Macquarie University Hospital. There maybe some editing and cutting, as there is limited space. I had not been happy with the original so I asked if I could do it myself!!!! It is difficult to write about LE, when you do not have it, as it is very difficult to understand… This will be included with a letter from Prof. Boyages who explains the research. Well let’s hope this will help to bring in much-needed funds so that this program can continue with the equipment they need..

Case Study
Helen was diagnosed with Uterine Cancer twelve years ago, treatment was a Radical Hysterectomy, including the removal of 22 lymph nodes from the groin, followed up by a month of Radiation. This impacted on the Lymphatic System and by the end of the radiation treatment Helen noticed the first signs of Lymphoedema in her left leg.

She described the cancer as a terrible shock, but is grateful there has been no re occurrence. Sadly though the Lymphoedema is a constant reminder of what she has been through. With a diagnosis of Lymphoedema came the daily regime of Manual Lymph Drainage, exercises and the wearing of compression stockings. Along the way there have been weeks of Complex Bandaging treatment, to reduce the Lymphoedema, but no matter the treatment it never goes away, there is no cure. One of the more difficult aspects for Helen has been the number of episodes of Cellulitis, due to the compromised Lymphatic System, which entails a stay in hospital for IV antibiotics. On one occasion the infection spread and she was diagnosed with Pericarditus, an infection around the heart.

After this frightening development Helen started to investigate more effective treatments for Lymphoedema. This brought her to the Macquarie University Hospital Cancer Institute, where in March 2013 she became the first recipient of a Lymph Node Transfer to the leg. Lymph nodes were taken from her neck and placed in the knee of the affected leg.

Helen’s journey is ongoing, as it can take up to two years and longer for the nodes to grow and develop new Lymphatic Vessels. It is her hope however that being part of this research program, she will light the way for others to be treated in the future.

She says, “We need to find better ways of treating Lymphoedema to give people back their quality of life.”

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If you believe in it…. Fight for it…

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If you believe in it and it makes you happy never stop fighting for it

Last week I was invited to tell my story as part of a fund-raiser for Lymphoedema research at Macquarie University Hospital. I am very excited about this as it has always been my aim to build awareness, education and understanding of Lymphoedema. Yesterday I was interviewed by a writer who will put my story, of the last 12 years, together. This will be added to an article from Prof. Boyages, who is overseeing the research program. It will then be sent out to all the alumni and connections of Macquarie University in the hope of raising much-needed funds for equipment required for this research program..  I will never give up the fight to have Lymphoedema recognised and understood, both primary and secondary LE.

The Thrill is Gone – Journey With Lymphedema Continues

Reblogging this as it shows the frustration of coming to terms with the fact you have Lymphoedema 24/7…. It needs constant care and attention or it gets worse… Not sure if it is ever possible to totally come to terms with this!!!!!! Thanks your posts are always heart felt but amusing too….

Breast Cancer Authority

Lymphedema Journey With Lesley Ronson-BrownBy Lesley Ronson Brown, 500 Hour Yoga Teacher

As my journey with lymphedema continues, I find I am tiring of it. It is no longer something new or something to get used to. The thrill is gone. Not that it was ever too thrilling, mind you; but it was interesting to learn about and begin to navigate my way through the lymphedema maze. I think, however, I had an underlying hope that if I did everything I was supposed to, that somehow it would go away or lessen substantially. But it hasn’t. It hasn’t gotten too much worse, but some days my arm is definitely bigger and some days a bit smaller. But it seems to be bigger more often than smaller. I feel resigned. This is one long-term relationship I would rather do without.

So what’s a girl to do? Sometimes when I’m stuck and not in the flow…

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Letting go of the past

Since going ahead with my Lymph node transfer/transplant surgery my mind has often travelled backwards, I realise that this is unhelpful, that I cannot change the fact I had Uterine Cancer. I cannot change the fact the surgery took away 22 lymph nodes and the radiation destroyed more of the Lymphatic vessels… I cannot change the fact I was given so little information on this side effect of treatment. The Lymphoedema started almost as soon as I finished treatment, I can remember it very clearly. I had flown with a friend to Adelaide to stay at a health retreat on Kangaroo Island to detox and recuperate from my treatment. I flew with no compression stockings on and at the retreat part of our daily routine was a sauna. (Two big no no’s when you have an at risk limb!!) A few days into the retreat I noticed a raised area at the top of each thigh which gradually spread down my leg causing swelling. This was Lympheodema!!! The story continued for 11 years till I heard about a new surgery called Lymph Node transfer, so this is where I am today.

I saw this quote today and it made me think about how important it is to let go of the past, the why’s and the what if’s, to be grateful that I have never had a reoccurrence of the cancer, that I am healthy in every other way.  Today I reclaim my peace….  And I hope that others will join me in this ….

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How are the scars healing???

One of the things I have heard others say is that they are worried about scars on the neck, if the nodes are removed from there, to use in the transfer. I must say when the doctor first told me this I too was a bit concerned and started to grow my hair before the procedure!! However seven months down the track the scar is just a fine line along my collar-bone. There is a slight hollow behind the collar-bone where the tissue was removed but probably only noticeable to me! This is the latest photo taken before I go for a swim.. Yesterday in Australia it was 39C in October, which is crazy weather for this time of year. Heat is always a challenge for those with Lymphedema so this summer could be very difficult if yesterday was anything to go by… The hotter it gets the more Lymph our body produces and the more our Lymphatics are put under stress… So swimming can be a great help as it cools the body as well as allowing exercise without over heating and the water is a natural compression.

Neck scar  7 months after Lymph node transfer

Neck scar 7 months after Lymph node transfer

The scar on my knee is not quite so pretty, but I do not think many people will be bending down to check out the inside of my knee!! What I have noticed over the last few weeks is the swelling has gone down and the scar sits flat against my knee. I thought after surgery I had added a lump at the side of the knee as well as LE!! It shows how patient you have to be as it takes a long time for the body to heal and settle and then for the nodes to grow.

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

Knee scar 7 months after Lymph node transfer

The overall results at this stage are difficult to calculate due to a loss of pre surgery data. I am to see the doctor again on 25th October so will be able to compare results from three months after surgery. I feel my lower leg responds better but I don’t see much improvement in the thigh at this stage. A plus is that I have had no infections since surgery, which was one of the main reasons for the LNT. Many of you who experience Cellulitus know how debilitating this is, it would entail me having IV antibiotics on a regular basis either in hospital or at home. The main down side since surgery is the numbness I am still experiencing from the inside of the knee down to the foot. This affects my balance and the leg is weaker, so I have to be careful especially going up and down stairs or walking on bumpy ground. However I am told this will improve in time… I sure hope so!! I am wearing a 30-40 compression stocking during the day but no compression at night, just elevate the bottom of bed a little. After surgery I used the Ready Wraps from Solaris instead of bandaging and I have them if needed, which has been very little of late. I have MLD at least once a fortnight with Lisa Higgins in Balgowlah who also uses a hand-held laser on the knee area to help the scaring and to stimulate the cells in the newly transferred nodes. If you live in the Sydney area she is a qualified Vodder Therapist and worth a visit.

Left leg 7 months after Lymph node Transfer..

Left leg 7 months after Lymph node Transfer..

I will post another update after the 25th October when I see the doctor.

I also wish to send a get well message to Kimber who is recovering after her major surgery in New York.. Hope you start to feel better soon.. Remember slow and steady wins the race!! Also a friend who had liposuction here in Sydney.. Get well soon girls…
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Welcome to my life

One women’s story of learning to live with Lymphedema of the arm… Thank you for sharing so that others may understand..

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lymphedemalife

Lymphedema.  Wasn’t cancer enough?  I thought I was home free, but now what’s this arm that aches and swells and just won’t get well?  And so it begins, this wierd saga of life with a chronic condition that ebbs and flows, changes and is never static.  New rules for living and constant balancing between doing what you want to do and keeping your limb as stable as possible.  Making new fashion statements with compression garments.  Making new friends with lymphedema therapists who are on the front line trying to keep you from swelling up and further damaging your lymph system.  Finding out how to “Walk Like an Egyptian” while swathed in short-stretch bandages, foam and artiflex.  How tight can you wrap?  You find out when your hand swells up like a latex glove balloon.  (A little too tight there.)

If you are traveling this road, I am your sister.  I…

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