Friday, January 14, 2011

Meet Donald

I can't explain to you how my children came up with this name, but after much debate they have named my port Donald. So from here on out when ever I refer to Donald I am talking about my port. Let me start by saying disability does not have an answer. I wish I hadn't even called today. Telling myself I wouldn't know until the 24th was actually keeping me somewhat calm about the issue but calling today got me all upset again. My rep did get the final physicians report but hasn't finished up her part. She said they do work on Monday and don't worry she will have an answer before the 24th which is the initial 45 day period. I had to remind her that the 24th would be the end of 90 days and I had to have an answer. Oh yes that's right. Anyways, I am going to try and not call until the 24th. I am hoping the rep will do as she has indicated and call me but I won't hold my breath. Moving on...
Donald certainly isn't as sore as he was Tuesday but he still hurts when you push on him. Here is a little recap of what has gone on the last two days. Not very exciting and I don't have a video for you but that should come next week. Yesterday (Thursday) we went in to the doctors to have my first IV treatment. The office was crazy and things took a little longer than expected but that was okay. Ryan and I were called back and put in a room right next to the IV lounge as I call it. There are 6 or 8 recliners with pillows on them and cables hanging from the ceiling to hang the IV bags from. If I remember next week maybe I can get a picture. There is an IV nurse there 3 days a week and believe me she is busy. My doctor has a very integrative practice and does all sorts of things there. IV ozone and vitamin C plus a practitioner who does colon hydrotherapy are only some of the things that go on there. We waited for the doctor to come in and get us started. We decided that yesterday and today we were going to do all my medicine in 1 infusion (if I am using that word correctly). So we did 4 grams of Rocephin yesterday morning and this morning instead of 2 in morning and 2 at night each day. That allowed Ryan to practice doing everything he needs to do at home including taking the needle out. From here on out I will go in every Tuesday and have the nurse or doctor "access" Donald and give me my first does. We will then take all of the supplies home for the week and Ryan will give me my 7 other treatments and "deaccess" Donald on Friday night after my last treatment. Unfortunately when my port is accessed it is not as low profile as we thought but that is just something I will have to deal with. My biggest fear by far was the actual needle stick. It wasn't to bad. I would still probably prefer to use the numbing cream but the doctor doesn't think I will need it. So the doctor had Ryan jump right in and start mixing my meds with the saline and putting it all in the bag. It only took about 15 to 20 minutes to infuse. I tolerated the full dose fine yesterday. I was just tired. Same thing today really. Only when we done Ryan had to deaccess Donald which just means pull the needle out. Not fun but bearable. I think Ryan has it down and will do just fine with everything. I could probably even do it myself but I don't want to take any chances I will have brain fog and forget something. I have tolerated today's dose okay. We will see how things go over the next week. I am due in about a week to start my bug killing cycle so the timing couldn't be better. Next week may be very interesting. I was joking about Ryan's debut on youtube. Maybe we should call it Dr. Ryan's in the House. I am actually not sure if I will put the video of what this process is like on youtube. I guess what ever is the easiest way to share it.
All of sudden I am kind of running out of things to say. I guess I just wanted to let you know a little bit about how these two days went. I am starting on Actigall as a preventative measure for gallstones. Right now nothing else is changing. When I am done with this bottle of Mepron I can stop that but I believe everything else will continue. Not really getting a break but whatever needs to be done. My husbands honeydo for the weekend is to install two hooks for my IV bad. One above our bed and one by the couch. I joked about him installing a whole wire track so I can just walk around with my IV. He just says maybe I need to learn to sit still for 15 minutes. Other than the hooks and getting a container for all my supplies that should be it. I guess that is it for now. Talk at you soon.

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