Let's catch up!
So I got the reduction kit mess figured out. Since I wasn't going to be able to meet with a therapist to help fit the reduction kit to my lymphie leg, my garment people back in California decided the best option was going to be talking me through the steps over FaceTime, as I did it myself. I’m sure someone with training would have done a better job, but I would like to think I did a pretty good job. I wore the reduction kit as much as I could for the next week and a half, and the swelling did go down a bit, but of course not as much as I would have liked. After a week and a half of wearing the reduction wrap it was time for me to make my way home to California to get measured for new compression garments, and with all the traveling (you can probably guess if you are a fellow lymphedema friend) my leg started to swell up again even with the reduction wraps on. I knew this would probably happen as traveling is always hard on my leg so, I wasn't too upset, but I do wish that didn't happen. The day after I got home I went to my appointment with, as my physical therapist would call her, the "compression garment queen." I was measured for new garments, finally! I'm super excited to get them! After all my surgeries and the added years since I was last measured my calf is about the same size as it was when I was first measured for custom garments, and my thigh is much smaller. The "compression garment queen" was very pleased that I’ve been able to maintain and improve the condition of my leg, so I guess I have to be doing something sort of right, right? We decided together that I will be staying in the Juzo- one-legged, stocking type of garment but instead of a covered toe I will get the ones cut off at the toes with a toe cap sock. With this garment each of my toes will have their own compression. Hopefully I can finally say goodbye to my sausage toes. She (the queen) mentioned I could even where flip flops/sandals with this kind of toe cap if I wanted to. That might be fun for summer, but it has been a while since the last time I wore them so we’ll see. The garments come from Germany so it takes a little while for them to get here. I haven't gotten them yet, but they should be here any day and it couldn't be a better time as my best garment finally gave in to the hole-in-toe trend that all the others started to follow a while ago. Since I was measured, I have to admit I have not been the best at keeping to my management routine and let me tell you... I can definitely tell. My fourth semester of college just ended on the 7th of April, and I did quite a bit of weekend traveling the last few weeks of school. With all that mind and body stress I should have been taking better care of myself. It's hard sometimes always having to remember my limits. Of course I can't live with limits all the time because... your girl has to have fun.. but when I do decide to "have no limits" I need to prepare to do damage control afterwards. I always think life is going to get less crazy and I will finally have time to do things like take care of my leg, but I am learning that that is not the case. Life keeps moving faster and faster. Living in the fast life can take its toll on anyone, but it can be a little extra straining on someone with a chronic illness like lymphedema. Today was the first day of the new semester. Semester 5 for me. <-- That's wild. As I was sitting through classes and walking around campus, I was so uncomfortable! Does this happen to anyone else? I felt like my leg was suffocating in my compression garments. It felt like my leg was trying to escape from them. I swear the garment was going to burst at the seams just so that my leg could find relief from the pressure. The weird part is that my leg wasn't unusually more swollen today. I wanted to drive home and rip my garment off to free it from the prison of compression, but the thing is that wouldn't help me. It might have felt relieving in the moment, but if I decided to take off my compression for the rest of the day I would regret it. Taking compression off for comfort just gives your leg time to swell more with no restraints. One day with no compression can mean up to two weeks of trying to get the swelling back down. It's not worth it. Compression is everything. Without it there is no hope in having a sort of normal looking limb. As I have learned and grown the past few years with lymphedema I have come to understand and firmly believe in the power of compression. You know, I never thought I would have to deal with something like this in my life. I don't think anyone would. It was about 4 years ago that my leg first started swelling. I thought I might have just twisted my ankle a little weird while walking or something. Little did I know my whole life was changing. I am not saying that I am glad I have lymphedema in any way because let's be honest, it sucks, but I have learned a lot of lessons I wouldn’t have had the opportunity to learn without it. I have learned how to be more independent as I made all my doctors’ appointments and found someone who would consider and perform surgery for it, I have learned I can't be perfect and that is okay, I have learned to be less judgmental, and so much more. I think it may have been God's funny way of helping me to be more humble, and I'm okay with that. I didn't think my life could get any busier than it was last semester... I was wrong! I missed a lot of important posting days last month so I apologize for that, but I have everything locked down in my head ready to be shared with you. Here we go..
My post op appointment was on December 30th. It went well, except for that fact that I had a little bit of an infection scare. If you don't know much about lymphedema, infection is a big deal. We can contract infections easier than most through open wounds in the affected limb. In simple terms, the lymph system helps clean the body and gets the fluid circulating to prevent infection. Because this process is slowed down for someone with lymphedema, we can't always fight off the infection like others. The skin around some of my incisions were looking red and irritated, and it was also quite itchy. My surgeon decided to put me on some antibiotics just in case, and to be honest, I was surprised that she didn't have me on antibiotics right after surgery anyway. I kept a close eye on my leg, watching for more signs of infection such as red streaks or feverish skin, for the next couple weeks especially because I was already back at school in Idaho. January 3rd, I got an appointment with my old physical therapist. It was a miracle that she had time to see me before I had to leave later that night. My surgeon doesn't know much about the compression garment side of lymphedema so she referred me back over to physical therapy to get that all figured out. At this point I haven't had new compression garments for over a year and a half. I'm supposed to get new one every 6 months so if you can't tell how important it is for me to get new garments at this point (having been through two surgeries as well as my garment just being old) let me just let you know now, IT IS VERY IMPORTANT! I discussed what my options were with my therapist at that appointment, and she had the great idea of trying to get my leg even smaller. I always like to hear that! She suggested the Medi Circ Aid reduction system kit, but she would have to talk to my surgeon and others to see if it was a real possibility for me. That was as far as we got at that appointment, and later that night I was off for Idaho. I left California a week and a half after surgery to start up at my next semester of school and get back to work. We were working under a really short time frame with all of this so it was all a little nerve racking. Luckily the surgery went well and recovery wasn't as bad as I was expecting. As soon as I made my way back up to school I was on the move. I had to go right back to work and school started a few days after I arrived. This probably was not the most ideal situation for me to be in but life goes on. One thing I learned from the start of my journey with lymphedema is that the world doesn't stop for you to figure things out. Life continues and you have to learn how to manage and get things under control as everything is still moving. I finished all my antibiotics and the signs of possible infection disappeared a few days into the semester. That in itself took a huge weight off my shoulders. Since then we have hit the 1 year anniversary of my lymph node transfer. January 12, 2016 I went into a surgery not knowing what the results would be. It was a 12 hour surgery that my surgeon had never performed before. I felt prepared, but looking back on it now I was going into it blind. It is crazy to think that it was only a year ago that I was barely starting to walk and shower on my own after having been on strict bed rest for almost a month. I honestly don't know how I did it, but it has been so worth it. I know not that much has changed and I am still in the fight against lymphedema but I know I could have been so much worse off if I hadn't gone through with it. Today marks 2 months out from my second surgery. This surgery was a breeze in comparison. I had the surgery on the 23rd of December. Right after the surgery and for a few weeks, even a month probably, after surgery my leg was looking really good!! The bruising was there but the size had me in amazement. I felt the most confident I had in a long time, but the swelling did set back in after going back to work and throughout this semester. You can totally still see a big difference, but it hasn't stayed as small as it got and that is probably because I still don't have new compression garments. I finally got the reduction kit about a week ago. The problem is there is no one in southeastern Idaho qualified to fit the reduction pieces to me. I was supposed to be reducing my leg for the past week through March 9th. March 8th I am flying home to be seen by a compression garment specialist, and I was supposed to be measured for new garments, but I don't know if that is going to happen anymore. They thought they could get someone to do the reduction process with me, but that didn't really work out so I don't really know what is next at this point. Life keeps moving on so I'll let you know what happening as soon I know what’s happening! It's the day after surgery, and I'm doing really well! I can't thank everyone enough for all the support and well wishes. I went into this surgery having no expectations so that I couldn't be disappointed if reality didn't live up to what I pictured in my head and I think that is the best thing I could have done. I put everything I had into the last surgery. I hoped that it would fix me... I hoped for a miracle. The lymph node transfer has definitely helped and I'm glad I did it but going into it I expected a lot more so when it came up short I was a little devastated. I have not had the same experience this time and I don't think I could be happier with the results.
We arrived at the hospital at 6:30. They took me back to the pre-op area and got me ready. I had the same nurse from my last surgery so that was kind of cool. She remembered me and we got to talk and reminisce a little as she prepared me for the surgeons. My favorite part of having surgeries is the time between being wheeled into the surgical room and slowly drifting off to sleep. When I wake up I always try my hardest to think back to the last thing I can remember before falling asleep. This time I remember being wheeling into the room, they helped me switch over to the surgical table, they stretched my arms out on the arm boards, and all the doctors were standing by my feet. My surgeon called in the time and then I was gone. The surgery lasted about 3 hours. I woke up around noon in some pain, but they quickly helped to get that under control. As soon as the pain settled my mom came back to see me. I woke up not completely out of it so sadly no funny videos this time. I did talk to my sister Jessica on the phone when my mom came back. She said it was funny because I just wanted to tell her everything, but other than that I was good to go. My doctor came to check on me real quick before they discharged me, and then they wheeled me out. The nurse that wheeled me to the car was very "impressed" with my coordination so soon after waking up from surgery. He was very nice. My surgeon talked to my parents before I woke up and let them know the surgery went very well. They were able to get a liter and a half of whatever they take out with liposuction from my calf and thigh. They made 4 incisions which gave them access to do the liposuction, and they took quite a bit off of the bump on my ankle in the scar revision. The goal for the scar revision was to make it look more uniform by taking off as much of the skin graft as possible so eventually only the piece of my neck skin will be there. This will make it look less patchy which will make me happier. I am still in some pain, but I do have medicine for that. As long as I remember to take the drugs on time the pain stays under control. I have to keep it wrapped up to prevent further swelling which has been kind of hard because my leg has been leaking fluid so my bandages keep getting dirty. I've already rewrapped it about 5 times. Good thing lymphedema has trained me to be a professional wrapper. As long as my leg is wrapped and I'm properly impaired I can walk around a little bit which I like because I'm pretty independent. I am happy with the results so far and can't wait to see what it looks like when it is all healed up. I will be posting some before and after picture later down the line for you guys after everything has settled down and I’ve had time to heal a bit more. Thanks for being awesome, everyone! Today is another big day in my lymphedema journey. My surgery is set to take place at 8:30 this morning and should only take a few hours so I probably won't be getting too crazy afterwards like after my first surgery. This surgery shouldn't be too bad and most likely will not be my last.
I'll update you guys a little later when the drugs wear off. Sorry, I know I've been awful about writing. This last semester was crazy busy. I have attempted to write several times but got interrupted and never finished a post, but the semester is over and I'm home for the break now. I will start by giving a rundown of the past few months to catch you guys up on my life with lymphedema. The semester definitely had its ups and downs but overall I think it had more ups. I liked being busy because it didn't leave me much time to have my bad days were I ultimately just pity myself and the cards I was dealt. I stayed a lot happier which is always a good thing, but with being busy all the time it left me little time to set aside to care for my leg. As we all know living with lymphedema is a full time job on its own between the compression garments, elevating, wrapping days, pumping, and manual drainage. After the past few months in the fast life I should be fired. Sadly, it is not a job I can be fired from. With that being said my leg is probably the biggest it’s ever been, but I'm sure if I had not had the surgery earlier this year it would be way worse. It really hasn't grown that much, and with not being on top of my management routine I am pleasantly surprised. I would also like to add that my leg still stays pretty soft which by itself almost makes the surgery and everything that came with it worth it. So fast forward to the present, today I had my pre-op. It went really well. I love my doctor. It is a little difficult at times because I am the first patient in the Southern California Kaiser area, to receive surgical treatment for lymphedema so my doctors are still learning. That means they don't always have the answers to the questions I have. I'm not going to lie, I feel a little honored at being the gineapig. I get to help pave the way for others in my similar situation. I am excited to see how the treatment of lymphedema continues to progress. Now I will share what was discussed at my appointment: 1. What is going to be done in the surgery? - Lower leg and thigh liposuction with a side of scar revision. The scar revision is for the bump of tissue on my ankle which houses that transferred lymph nodes, which I recieved in January of this year. 2. How long is the anticipated recovery? - For a normal person it would only take about 2 week but because my lovely lymphedema leg is not normal we don't really know. We are just going to have to wait and see. (Hopefully not too much longer than that because I have to go back to work and school in 2 weeks.) 3. There is another surgical technique called Multiple Lymphatic Venous Anastomoses (MLVA.) Will that still be an option for me? - Currently Kaiser does not have the instruments needed to perform this surgery, but my doctor is working to get them. When she does get them she will let me know and we can look into that further. None of my surgeries should prevent me from getting a MLVA which looks to me like the most promising treatment at this point. That's about it. I'm not really expecting much out of this surgery. I'm trying not to get my hopes up so I won't be disappointed with the results. I'm going in will the idea that the appearance of my leg won't change so if it does I can be happy about it. I go in for the surgery Friday the 23rd of December so I will keep you posted on how it goes! Thanks for reading my posts and for your support it really means a lot to me.
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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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