This recent stint in the hospital has caused my surgery to be postponed to March 31. I was supposed to go under the knife in 2 days. I've awaited this surgery for months and months and was so happy the time was almost here...and now I sit...waiting, yet again. I have mixed emotions about this, I'm bummed, and I'm at peace. I know that doesn't make much sense, but I believe everything happens for a reason.
This infection was literally out of the blue, overnight thing, which is pretty rare...normally the infections take days to grow, and I have warning signs, I know my body and my disease...but this literally just popped up. I know you all saw me bitch and complain that I had 23 IVs in the hospital and they finally put a PICC line in. Well the reason I had to get so many IVs is because within minutes the vein would clot. Sadly the same thing happened with the PICC line, which is apparently rare...when they went to pull blood, it had clotted and they couldn't get anything. When I had my blood drawn at my MCV visit last week, it took 3 IVs because they would start drawing blood, then stop. They had 3 nurses/techs working on my IV...finally they got one, they drew one tube of blood and one of the nurses looked at the others and said "do you see this" as she is holding my tube of blood. One of them responded "shes clotting fast..looks like mud" this was within secs of them pulling it. They then stated no wonder I couldn't keep and IV. This is something I'm currently reviewing with my doctor, but it looks like I have a clotting disorder which is definitely new. The revelation of this explains a lot about how my hidradenitis suppurativa has been affecting me lately as well. My point in this long story is, I honestly feel this current infection was God's intervention to not have the surgery on Feb 3. I believe there are still some underlying medical conditions that could possibly be fatal to me on the operating table at this time. I will be undergoing a lot of blood work and test to find out why I'm still not healing, and why my WBC (white blood count) is still high, and why I am clotting so fast. I want to feel safe on March 31 when I have the surgery.
For those of you who are tired of hearing about my surgery, I'm sorry. I know my explanation of the surgery to every one is simply, I'm having my skin removed. I don't know how else to explain it simply. This surgery is very serious, and will literally consume my life for a very long time. I will try now and explain it in a little more detail. The actual surgery name is Radical Wide Excision Surgery. The first surgery they will be removing the skin under my arms, torso area, down to the muscle. They will also be cutting the "chicken flap" of my arm off, removing the diseased skin and stapling it back together. The torso area will be left open to heal, a large open wound. They are also going to try and do my breast in the same surgery, but they said it depends on how much they remove from the torso area, if they will be able to do it in the first surgery or not. If they are able to do my breast, there are two options. A. they can cut off the bottom half of my breast and staple it back together which will heal as "cones" (I'll have to pad bra's to look normal, and my breast will completely be deformed) B. I can have my breast removed. (This decision as a woman is very hard). They don't know how long I will be in the hospital but they said I should be able to come home quickly. I will then have a home care nurse to help with wound care. The doctor told me "You will be in pain, a lot of pain, there is nothing I can do or give you to make you comfortable" of course they will give me plenty of pain meds, but he was just letting me know if I decide to do this surgery, there is no easy way out. I'm going to post a couple pics, one pic is day 3 after surgery, the other is day 32...these are very small considered to what I'm having done...I'm having the entire torso on both sides removed, but they will give you an idea of what I'm up against. They are very graphic, please be advised.
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