Monday, February 8, 2010


Short of breath, NOT son of a bitch!  :)

Yep, that’s right.  I am very short of breath.  Little things are taking so much more out of me than they should.  Even just sitting around is painful.  The ache in my back is back which means I am hunching over and trying to breathe more than normal.  I always have a dull ache in my upper back, but when it gets painful to where I need to take Motrin I know I am brewing an infection. 

I was talking with a fellow Cyster over the weekend and she was telling me she has a checklist for infections.  One that lets her see if she is brewing an infection or if it is just an off day.  What a brilliant idea!  So mad I never thought of that before.  Each checklist will be different for each patient, but the idea behind it is the same.  What makes you realize what you are doing is no longer working?  Is it harder to clean?  Is it requiring more treatments a day?  Is it requiring longer treatments a day?  Is it sleeping more?  I am going to sit down and write one up for me.  I love the idea!

Getting back to my shortness of breath dilemma.  I am going to move my appointment with Dr H up and make an appointment at both Children’s in Boston and MGH.  I need to find a doctor up here no matter how I feel about Dr H.  Being sob has made me realize this.  I tried calling for appointments today but I was too late for both clinics.  I’m used to mine closing at 5 and I called at 4:00 and both were already closed.  Bummer.  So tomorrow I will be calling and finding out what all I need to do for the consult meeting.  I signed a form at Presby already to let them send my records to whatever clinic I chose, so that is taken care of.  I will just have to call and give them the numbers and contact info so they can be sent off.  Once I make the appointments of course.

So that is pretty much it on my front.  Hoping I won’t need some IVs but since the Cipro doesn’t seem to be keeping the infection at bay and there are no more inhaled antibiotics I can start immediately, its looking like it might be my only option…phooey.  


  1. UGH!! I know what you are talking about with the dealing with the same thing. Things that I can usually do with no problem are taking me forever to do because I can't breath!! So annoying! Hopefully you get to feeling better soon. :)

  2. Hey Amy, Know what you mean l have spent the last 3 months in particular having to watch my daughter do things for herself such as shower etc (SHE IS ONLY 3) or watch my mum do it as l cannot anylonger even with oxygen on. I thought you might be interested in seeing my blog it is weybsworld its not as good as yours but you have certainly given me many idea's.

  3. So sorry Amy. I had shortness of breath a few weeks ago... I had an infection. Luckily they were able to give me something oral. I am still crossing my fingers and toes that it will be enough.

  4. ROFL I love the inclusion of the secondary definition of SOB. Having an exacerbation at the moment myself so had a good chuckle. Hope you're on the mend soon.

  5. SOB really sucks. This last infection/pneumonia I had knocked the breath..literally out of me...the worst it has ever been since my transplant. I hope you get some relief SOON! Hopefully you were able to schedule the appointments today...and praying the doc(s) can give you something oral to knock this thing out (or calm it down).

    Oh...and I love the idea of an "infection checklist"...very clever. Like you, why didn't I think of that a LONG LONG time ago. Because you do end up seeing trends or common things with each infection that starts to brew!

  6. Eff. Cipro never did fuck all for me. I hope you don't need IVs tho. The list sounds like a fab idea! It's always so hard to determine if you have an infection or not sometimes!Are you coughing up more crap than usual? is it darker? does it taste kinda like metal? ugh...infections...

  7. Bad timing huh?! I get confused sometimes too about 'how bad am I', when infection is lurking. I hope you're able to get it under control without IVs.