How is Sue going in the USA?

I thought you may like the latest update from Sue in the USA.. I have copied from the email she has sent so the words are her own… Thanks Sue glad you are progressing well.

English: Seal of the city of ,

English: Seal of the city of , (Photo credit: Wikipedia)

Well the drains were taken out on Friday — one two three, breath in, blow out and bam-o they are out! The feeling of freedom is beyond description! My pain level is really like a one on a ten scale. I get some tinges of pain in the incision sites. I have about a five inch incision on my left side, under my arm pit, a few inches below that, and one on my left upper thigh. There is no flap visible. The skin is glued together on the thigh and I have steri-strips, no cloth stitches, on the left side incision. The left leg is the affected one. As I think you know, I developed lymphedema almost one year to the day following my total radical hysterectomy as a result of uterine cancer. My surgeon had not warned me of this condition, and I knew of no precautions to take to avoid it. I believe I bumped my leg getting into the shower one morning, and that is when shortly thereafter I noticed a slight swelling in my left leg. I was able to manage it well with initial bandaging, manual lymphedema drainage therapy and the daily use of the compression pump. However, a bout of cellulitis (my only one) in August of 2012 did a number on it and my leg swelling never returned to its pre-cellulitis condition.

I am now feeling some tingling in my leg, which I don’t know is just the nerves waking up or maybe some action happening with the transferred lymph nodes. I had two difficulties to bring to your attention. First, when I tried to put on my compression hose (I was just measured the day before the surgery so I know I have the correct size — extra large), I found that they caused immediate swelling and collection of fluid so I threw those off as soon as I could pull them up. Oh what a joy that is. Then I tried to use my compression pump and really felt it caused more swelling. I find that doing nothing but elevating the leg and moisturizing it is the best thing for me.

Do you use a pump? I know you are using your compression hose but did not remember any info on your blog about the pump. Some doctors are against them. I have to tell you my surgeon, Dr. Kanchwala at the University of Pennsylvania Hospital in Philadelphia, Pennsylvania, is not real knowledgeable about lymphedema. On the day of surgery before they took me into the operating room, I asked him about the compression hose and pump usage. He said, oh we can put you in your compression hose right after surgery and you can start the pump on Monday (two days post surgery). Well I guess he forgot that it would be a little hard to get those darn thigh highs up over the drain sticking out of my thigh and to wrap the compression sleeve around the drain. I see him on Thursday, 4/25, and I will have to give him a little education. Being a surgeon, he is not that up on lymphedema, he just knows how to transfer the nodes!

I had some depression following my use of the pump. Only because I was scared that I did something to mess up the surgery. But it appears everything is okay. I have a nurse who comes in – last week every day and this week just three times and I will be done with her — and she is measuring my leg. Last Monday, my knee area was 17 inches and now one week later, it is 15-3/4 inches in circumference. The ankle swelling is a lot slower, going from 11 to 10-3/4 inches in a week. But Helen, I will take any reduction in size.

This morning I woke up and heard a little reminder in my head — Be patient. This is not going to happen overnight. So I am learning to be more patient with results.

Now that the drains are out, I have only a bandaid on both sites. I have thankfully not experienced any infections at either site. I am taking an anti-biotic twice a day.

Before I had my surgery, I asked Dr. Kanchwala about the possibility of acquiring lymphedema at the site of the node removal. He said it would not happen; that I may have swelling for about six months. So far no swelling. In six months, if this surgery is successful, he will consider liposuction to remove all of the accumulated fat and protein in the leg. I hope this can happen but right now don’t want to get my hopes up too high.

I will report on my doctor’s visit. I am hoping he will order manual lymphedema drainage therapy for me. That should also help. I also may wrap my leg with bandages to see if that will help between now and hopefully getting therapy.

Please make sure everyone knows, as you have been doing — this is a slow, slow progress type of surgery. The results may not be apparent for months or even years. So you and I are hanging in there!.. Sue

Thanks Sue and we await your next update after your doctors visit.

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Bondi to Bronte walk… Photo Helensamia

5 thoughts on “How is Sue going in the USA?

  1. I was reading a lot on this surgery, had several doctor visits and also to the doctor who pioneered it. All of them told me that after the surgery I really have to do like 3 months everyday MLD lymph drainage, bandaging and wearing stocking (not too strong ones but one leg – and not just up to knee). Most of the doctors are against the lymph pump (with are without surgery) cus it is too aggressive. Swimming and MLD is much softer. So I would really let nature do its job, and stay away from the pump (my opinion)….

    • Hi – I will see a lymphedema specialist on Thursday, May 2, and will inquire about using the pump. The plastic surgeon who performed the lymph node transfer surgery recommended I use the pump, which I have been doing and it seems to be helping. I used my pump every day for the past five years, but believe me, if I can get away without using it, I will be more than happy to place it in a closet or donate it!! I will keep you all posted. I am still seeing small improvements every day, but like Helen, I worry about the transferred nodes not working.

  2. Pingback: How is Sue? At last some news… | My Lymph Node Transplant

  3. Pingback: Sue… 16 months post LNT | My Lymph Node Transplant

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