Monday, March 4, 2013

Clinic And Arm Update

Today was supposed to be the day I got my PICC pulled or was given a new set of meds, but of course with the PICC pulling itself out and my skin falling off I went in PICC free and extremely nervous. My arm is looking worse, I didn't get to finish my IVs and I had no idea how my lungs were doing. I also had to go with my zombiesque arm out on the open. I tried to cover it last night for family dinner at my parents house since I didn't think people would want to look at it while eating. I will spare you the gory details, but it was so not a good idea.

Within five minutes my appointment was already looking grim. Somehow I lost 4lbs between last Monday and today. How is it even possible to lose 4lbs in 7 days? I don't usually have an issue gaining or maintaining weight so this baffled my mind. I was eating a lot all week as I was trying to gain weight which makes it so much more frustrating. I am down to a skeletal 114lbs from 125. I knew my doctor would try to convince me to stop nursing, but I really believe that in a few weeks I can gain most of the weight back. Nursing is too important for me not to succeed!

My PFTs were making me the most nervous since I had to stop my IV course five days early. With my left arm covered in open sores and my right arm too much scarred to access I knew a PICC was out and I just didn't know what we would do if my PFTs hadn't improved. Luckily, my PFTs were just 2% under my baseline. Once I can swim again (when my arm heals) I think I can get back to baseline.

Pretty much everyone that saw my arm made the most horrendous face and said something along the lines of, "Oh, that looks horrible!" One of the nurses said, "I can't even look at it!!", but then kept sneaking peeks at it. Thank goodness the doctor knew exactly what it was. He even had another CF doc come in to get a second opinion and they both said the same thing. I was given a prescription for topical and oral steroids. I am already on Bactrim so that will take care of any infection that may be brewing. I go back in two weeks and if it isn't better they are sending me to a wound specialist. How scary is that!? I seriously hope that it improves with the steroids because nursing, sleeping, even carrying my baby is so much more difficult when I can't use my left arm.

So it looks like I am over the worst of my sickness. I now have the aftermath to clean up (get my weight back and heal my arm), but I can finally see the light at the end of the tunnel.

6 comments:

  1. WOW!!! I am so glad you are close to your baseline PFT. To be honest I have been very worried about you cyster! I hope your arm is improving everyday.

    Maria would be right there on the breast feeding. She loves that more than anything with Alayna. That is something I will truly never understand :)

    Keep on kicking some butt my friend :)

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    1. Thanks I was worried too! I thought this might have been one of the times that my PFTs would never fully bounce back.

      I know not all women feel this way, but breast feeding is one of my favorite parts of being Kay's mother. I think having that quiet snuggle time to reconnect (and the endorphins don't hurt) just makes it the favorite part of my day.

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  2. So sorry to hear about the weight loss - that is so frustrating!!! But HOORAY!!! on the PFTs. I am so impressed! I know it doesn't feel like it but trust me, the flu is a real stinker and you are making an impressively quick recovery all things considered. Sending love & prayers your way!

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    1. You are not kidding that the flu is a stinker. I actually thought that this might have been the sickness that would forever effect my PFTs. I wasn't totally sure i could make a full recovery. So glad to be feeling much more normal

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  3. So glad to hear your PFTs are not down too much! Hopefully that will make recovery all that much quicker. Your comment about loosing 4lbs in a week made me smile. I'm so on the other end of things. I can gain 5lbs in two days while trying to loose weight!
    I really hope the steriods help your arm and you can get back to proper cuddles with your super cutie!

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    1. It is funny how different CFers can be especially when it comes to weight gain. I know some adults that have feeding tubes and then some like you are more like "normal" people.

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