This week has been a lot better! There still isn't much difference in the size of my leg, but having a positive attitude about it really makes a huge difference.
It's been about 2 months since the surgery and the skin graft is almost healed which I feel will be a great mile stone to pass. I went to appointment with my doctor yesterday to talk about finding a better form of compression. She said it would be fine if I started to wear an off-the-shelf thigh high garment for now because I still need some support, but it won't be too tight. It is nice to have that compression again. I've kind of missed it which might sound weird, but after you've been wearing a compression garment everyday for the past two and a half years it feels more weird not to be wearing one. At this point my real concerns lay with the fact that I'm going up to school in April which is almost 1000 miles away from home and my doctors. I wouldn't be so nervous if I had started to see more improvement by now. Everything is all still so new so being away from my family, my mom especially, who knows just about everything that I know about all of this will be hard. I know it's probably an irrational fear that something crazy will happen, and I know I need to move forward. I can't put my whole life on hold that is why I have decided to go for it. I'm excited to see the outcome in all of this. I know everything will be okay in the end. The biggest thing in all of this is patience which I need to remind myself every day. If you guys hadn't noticed I’ve been procrastinating posting a picture of my ankle. To be honest I’ve been struggle the past week or so. This is a very hard situation for me because I had just started to get use to controlling and managing my leg when I finally decided to get this surgery and now I feel like everything is new, and I’m not exactly sure how to handle it all. My ankle is far from pretty. I think the best way to describe it is.. interesting. I know that I would have really appreciated pictures of what it would look like so I would have been better prepared to handle it. That is why I feel like I need to share this even though it does put me outside my comfort zone. ... but then again maybe it’s better they didn't show me pictures because I don’t know if I would have went through with it if I had seen them.
It's only been a month and 3 weeks since my surgery so I haven’t seen much difference in my leg yet. It has been getting to me quite a bit because I’m not a very patient person, and I love my family and friends but it’s hard to go to them for comfort in this situation. With that being said I would just like to say how thankful I am for my parents for being my rock through all of this. Through all my doubts and bad days they are always there to listen and reassure me that there is still a lot of time to see improvements and changes and to tell me if there is any time in my life that I need to think positive it’s now. My goal for this next week is to be more positive and not worry so much that I’m not see big changes yet! Wish me luck. I'm up and walking around now, and my skin graft is continuing to heal. I do have to remember to take it easy which is really hard for me because I'm kind of an all or nothing type of person. I'm suppose to increase my activity slowly until I get back to normal, but I keep having to remind myself to slow down because I forget that I still have to tend to my leg. It looks really good most of the time, but if I overdo it by walking or standing on it for too long it does swell a little. What is different now is that the swelling does go down when I elevate my leg unlike before I had the surgery so I take that as a really good sign. I know this is going to take time and I am hopefully that the result in the end will make it all worth it.
I will be posting pictures shortly. I just wanted to let the graft heal some more so it would look a little more pleasant for you guys, but I know I would have liked to see how my scars and ankle would look before all of this, and that is why I am more than willing to share them with you! What a journey this has been, and it's only halfway down. It's been more than I expected as I expressed in my last post, but it is definitely going to be worth it in the end. As more time passes I continue to heal. I was overwhelmed at the beginning, but as the days go by I can tell that my leg is not the same as it was the first week of this year.
I had my post op appointment yesterday and it went well. My surgeon was happy with the progress that has been made in the grafted areas and was impressed with how much my tight stretched skin has softened already. She believes that it will continue to get better as the months pass, but I'm not going to lie.. it's hard to fully trust it. I have lived for so long being scared to go more than a few hours without any compression and having to work every day to try to loosen up my tight and aching leg. I haven't worn a compression garment since the surgery and every day I am up walking around on it more and more. The craziest part is my leg isn't any more swollen than it has been since the surgery, and my leg isn't being weighed down by the stiff soreness I would expect to feel after a day of doctors appointments and grocery shopping. I'm feeling the most pain at the bottom of my feet because I'm still getting use to walking again after 3 weeks of strict bedrest. At this point the doctor has told me to just keep working up to my normal activity, and that's what I intend to do! Things are looking up, and I'm glad I get to share my experience with the lymphedema community as well as family and friends. The second surgery went well. They didn't end up having to take another skin graft. The swelling had gone down enough that they were able to just cut the bad skin off and pulled the rest of the skin together to stitch. The surgery only lasted a couple hours so it really was no big deal.
I started dangling my leg the day after the second surgery, which was Thursday last week, for 5 minutes every 4 hours. Everyday since then I have increased the dangling time by 5 minutes, and yesterday I was able to stand up and hobble around my room for a minute (Baby steps, right?). Today is my 30 minute mark which means I get to go home finally! I'm so excited! It's been a hard few weeks I'm not going to lie. I have been bedridden for pretty much the past 3 weeks which means I haven't been able to get up to go to use the bathroom or take a shower or do anything except watch tv and play card games on the bedside table. This hospital bed and I have gotten well acquainted. I have also gotten to know a lot of the nurses who have taken good care of me, and I am very grateful for them as well as all the people who have come to visit and/or stay with me. With that that being said, today it is officially 1 month since I started this blog and 3 week since my initial surgery. I have to say this experience has been a lot more than I was expecting. I came into this not knowing exactly what it was going to be like or what was going to happen to me (even though I tried preparing myself as best as I could) which was really scary, and I thought the scary part would be over by now but it's really not. I still have a long ways to go. The doctors say I won't know if the surgery worked for at least 3 months, and I still have to have another surgery next year when everything has healed and the swelling has gone down. I wish I would have had a better understanding of what I was getting myself into, but that is not to say I wish I hadn't gone through with it. I'm sure once I can get up on my feet again I will be happy I was strong enough to have done it. 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! |
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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