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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25 thoughts on “Kimber.. Five weeks post surgery for Primary Lymphedema

  1. I know that horrible pain Kimber had in her arms! Reading this it brought me right back to waking up after being under for over 9 hrs my first surgery. I too felt the pain was more in the donor site. I am glad she is feeling better now because I remember saying to my husband “will this pain ever stop in my arms?” I couldn’t even move them to eat Jello lol!! All my best to Kimber!!

  2. Dear Kimber, I am touched again by your courage! I could never do this, I think, and I have lots of respect. It is touching to read the comfort you get by watching your husband snore. But I guess in the end this is what it is all about: the small things that give joy 😉 . I understand you when you say, ‘trombosis is a rare thing and off course I got to have it ‘… After my diagnose with this disease which is very rare, i felt very unlucky (why me). When I had my first infection, the doctor proscribed me peniciline and he said to take this always during summer.
    Only thing is: I am allergic to nothing, except to … yes peniciline… The doctors answer: ‘oh that is a pitty, that is the only thing …’. Can’t have it , as a kid I almost choke of a reaction to this.
    ( Maybe there are ‘experts’ here who know if there are alternatives for this cus the doctor did not have one )…
    But I am sure things will work out and this surgery will help ! I do wonder: where would they take nodes from for next surgeries? I had the impression that there weren’t many donor site options…. Take care Kimber!

    • Hi K,
      Thank you for your kind words. It truly means a lot! For the next surgery which will be my knees, the lymph nodes will come from both sides of my neck. I’m still not sure if one or both knees will be done at the same time like my groin was? I will find out more next month when I go back to see Dr. Becker and Dr. Vasile 🙂 I’m so sorry to hear that you’re allergic to penicillin. I would think there has to at least be another option.

  3. Again we hear how courage, a sense of humour and perseverance are a winning combination in living with lymphoedema. Well done, everybody! Keep it up!

  4. Sometimes the real value of our individual stories is to build strength and demonstrates the immeasurable courage it takes to find our true character. Here in the States it is the personal side of what medical professionals cannot touch. Thanks for the story…JBC 🙂

  5. Good to hear there is progress being made and you are right, being physically prepared by eating the right foods and taking plenty of exercise means it is easier to deal with being in the hospital environment as well as ensuring the best start for recovery and beyond.

    Good luck!

  6. Pingback: Kimber’s third LNT… And Update | My Lymph Node Transplant

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