This week has been pretty uneventful. I’ve been in the hospital for just about two weeks now. My hospital stay was only supposed to be 7 to 10 days, but the skin grafts didn’t take so I have been waiting for an opening in surgery to replace the skin grafts. My surgeon said it would be best if I let myself heal by keeping off my feet while I waited so I’ve been on bed rest the whole time. I go in for the next surgery tomorrow at 11am. They said this surgery will be a lot shorter and definitely not as complicated so there is nothing to be worried about.
Spending the past two weeks here I have learned a few things which I was not aware of beforehand. When they transferred the soft tissue (which contained the lymph nodes) from my neck to my ankle it was a lot of tissue. The tissue now in my ankle creating a lump, as it was supposed to, but I didn’t know there was going to be a lump so as you can imagine when I woke up and realized this big bump on my leg wasn’t going away I was a little disappointed and under prepared to deal with it. I do have to admit I did shed a tear or two over the matter, but I also learned that I would need another surgery next year which would make that bump on my ankle a little less noticeable. I was glad to hear that the lump would go down someday, but I was a little upset that they didn’t tell me there was going to be a lump on my ankle and that I would have to have another surgery next year until after I had already had the initial surgery. I was expecting this to be it. With that being said, I have tried really hard to stay positive. I know with time everything will be fine and I will be better off for doing it, it has just been a little difficult getting there. I know there are so many people out there looking for relief and I know many of those people have looked into surgical options and they are scared to go through with it, but I really think this is going to work and I hope I’m right not just for me but for all of us. One more success is one step closer. I'll let you know how tomorrow goes as soon as I can! It's been a week since I had my surgery, and I'm finally feeling up to writing about how it's going. The first couple of days after surgery went by super fast because I was well medicated, and I slept whenever the nurses would leave me alone long enough to, but I thought I might go over what happened the day of the surgery. First, I got to the hospital at 5:45, and they called me back to change into my gown and get a urine sample.Then they had me lay down in my bed and the nurses started to prepare me by getting all my information, getting my IV started, and attaching a whole bunch of stuff to me. When they were done my parents were allowed to come wait with me, one at a time, for about 45 minutes while the operating room was being prepared. When those 45 minutes were up they took me to the operating room where I was given anesthesia. The next thing I knew I was waking up a little more than 11 hours later. During those 11 hours my surgical team cut open the right side of my neck where they took tissue that contained about 10 lymph nodes and transferred it to my right ankle. My ankle was too swollen to close up so they ended up having to take a skin graft from the left side of my groin in order to stitch everything back together.
When I woke up everything was sore except for the parts they worked on which I thought was weird, and I do have to say I'm pretty hilarious waking up from anesthesia. I might have to post it, but I'm not quite sure if I want to yet... As of now things are going alright, but I do have to admit it hasn't been as easy as I thought it was going to be. The first time I looked at my ankle I felt like I had just made the worse mistake of my life. It was super swollen and the stitches and the color, everything hit me all at once, and it was not what I was expecting. The doctor told me not to freak out because it will get better with time, and it will take time! As for the incision on my neck and groin, They look like they are going to heal very nicely, and now I can tell cool stories about how I got a huge scar across my neck. I feel pretty good, but it seems as though things are taking a little pause. The plan was originally to start dangling my leg over the side of the bed on Sunday- 5 minutes every 4 hours and increase the dangling time by 5 minutes everyday, but the surgeon said my ankle doesn't look ready for it and the skin from the skin graft isn't adapting very well. With these set backs everything it kind of moving very slow, but we will see what happens in the next couple days. Just a quick update, the doctors all said that the surgery went very well, but it did take longer than expected. I was on the operating table for about 11 hours. They ended up having to take a small skin graft from my left groin to close the hole on my ankle, and I'm just really sore at this point, but the pain isn't horrible.
I've been sleeping a lot and they just gave me more pain medicine so I probably won't be up for too much longer, but the nurses and doctors come and wake me up about every hour. I have to keep my leg elevated for the next 4 days and then I can start dangling over the side of the bed for a couple minutes every few hours. Overall I think the worse part about this is not being able to eat! I'll let you guys know how everything is going in the next couple days. Today's the big day! I'm excited to see what is to come in the near future and I know everything will work out how it's supposed to. Wish me luck!
Wednesday I had my pre-op appointment and I just have to say, I love my surgeon! She is so nice and does her best to let me know what's going on, and to answers all the little questions.
Getting to the appointment was a little nerve racking because it was pouring rain all day and driving in the rain is not my favorite thing to do, but my mom and I made it there safe and sound. When I got all checked in, my nerves had calmed and the nurse did all her routine things: temperature, weight, blood pressure, etc. Then I waited in the room for a few minutes until my surgeon came in. The first thing she did was ask me if I had any question, and I did. I had been making a list of questions I wanted to know coming out of the pre-op appointment so I could mentally prepare myself as best as possible. So we went through my list which went as follows: 1. How many lymph nodes will you be taking from my neck? Answer: 8-10 from the right side of my neck. 2. What are the chances I will get lymphedema in my chest or arm? Answer:The chances are small. My surgeon said she would be very surprised if I developed lymphedema in the donor sight, but I will see some swelling right after surgery so I shouldn't be alarmed. 3. About how long will recovery take? Answer: I will most likely be in the hospital 7 to 10 days and at the most 2 weeks, and even when I am able to go home I need to stay off my leg for a couple weeks. 4. Should I wrap or pump my leg after surgery? Answer: No, not until further notice if at all. 5. How many VLNT surgeries have you done? Answer: This will be my surgeon's first VLNT because it is a new operation for Kaiser Permanente. When she told me this I do have to admit it did make me a little nervous, but she assured me that she does surgeries very similar on a daily basis, and she will have another surgeon in there as well. Someone has to be the first, right?! 6. Where and how big will the scars be? Answer: I will have a 2 to 3 inch, horizontal scar on the outside of my right ankle and from right side of my neck to my collarbone. After I was done asking my questions the surgeon went on to tell me how surgery day was going to go: I have to be at the hospital by 5:45 Tuesday morning. They will then prep me for surgery and take me to the anesthesiologist. The surgery will take pretty much all day, and when I wake up I will be stitched up with drains in both my ankle and neck, and I will have to do without food for two days following the surgery in case they have to take me back into surgery. My surgeon said she would tell me more about what's going to happen after the surgery after the surgery so that was about all we discussed. I'm am excited to see what this next week brings. Although I know I'm going to be so bored in the hospital for a week or more. Luckily, my mom will be staying with me for the first few days! Let me just start off by saying this is going to be one big year for me! But I think you guys will be most interested in what is coming up this very month. I'm am having surgery. "And why would you be interested in this?" you may be asking. Well that because I am having a Vascularized Lymph Node Transfer (VLNT). It has taken me a long time to get in contact with the right doctors and surgeon to do this operation, but I did it! I'm going in for my pre-op appointment on the 6th of January, and surgery is scheduled for the 12th.
As these dates approach I can not lie, I am a little bit nervous, One reason for that is not many people have had this operation done.. to my knowledge at least, so I have no one to talk to who has been through it. This is the reason I have created this blog. I want to let people learn from my experience especially, if this provides any kind of relief. Now you may be asking, "What exactly is a VLNT?" And here is your answer, VLNT is an operation where lymph nodes are taken from one part of your body, such as the groin, stomach, or neck, and are transplanted into the extremity with Lymphedema. In my case, the surgeons will be taking some of the lymph nodes from the left side my neck/collarbone area and transplanting them into my right ankle, attaching them to my artery. They said that they are very optimistic about the whole thing and are expecting to see at least a 50% increase of circulation. When they told me I could possibly see a 50% increase in circulation I was so surprised because all of the other doctors I had seen and talked to always said I would just have to deal with it, and the only thing I could do for it was "manage" it. I didn't believe them, and I didn't want to so I took it upon myself to find some other way. I started out only talking to my physical therapist, but I could tell that that wasn't going to get me far because she only wanted to talk about the standard care which is compression and manual drainage. I was already doing those things and the swelling still seemed to be uncontrollable so I went to see a vascular surgeon who was a little more open to the idea of surgical treatment but was not sure of anything he could do personally for my situation. At this point I went home and started to conduct my own research on possible treatments, surgeries, and cures. This is when I found these links and everything changed: http://www.lymph.org/lymph-node-transfer/ and https://www.youtube.com/watch?v=c4qEs86aiXU This was it! The next day I sent an email to my vascular surgeon and told him about the VLNT surgery and asked him to get me in contact with someone who would be willing to talk to me about it and if it was even an option for me. He got back to me a week or two later saying there was a plastic surgeon who would like to see me and that is how I got to where I am today. I know that so many people suffer from lymphedema, and I feel it is my responsibility to let people know how this surgery goes, so that maybe one day we can all move on from it and not live with the everyday discomforts it brings. If you would like to get in contact with me feel free to email me. You can do that from the Contact page, and I will try my best to get back to you as soon as possible! |
AuthorHi, my name is Sydney, and I have Primary Lymphedema. I created this blog to share my journey, and I hope that by sharing my story I can help those who are on a similar path. Archives
April 2017
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