Thursday, July 29, 2010

Clinic Appointment

I had my follow up clinic appointment yesterday along with a bone density scan.  The results came back normal for the scan.  Guess all that calcium I take paid off!! I go to clinic again next Tuesday and then we will discuss when the PICC can come out.

Clinic itself went well.  My PFTs were up to 46% or 1.33L.  Which, I found out yesterday is kinda false.  How you ask?  Well.....I noticed that the actual level for FEV1 is 2.96L at Children's and Penn used 3.12L.  So, my 46% is really 43% by the standards I am used to.  It also means that when I was at 38% a few weeks ago I was really at 34%.  Luckily SSA uses Liters and not percentages to determine disability.

Here are some sites I found about lung functions.  I am trying to see what is considered "normal" L for someone my size.  Age, height and gender are the main factors and none of these has changed since moving from Penn to Children's.  I'm also going to email my old study coordinator at CHOP and see what she says about it all.


One thing I noticed and think it may be from the IVs are my joints hurt like hell!  This is the first time this has happened to me.  My knees and hands ache and its hard to do much with achy elbows and shoulders.

Other than that, things seem to be going well.  I got all my prescriptions written out so I can get them all re-filled finally and take everything I am supposed to.  My weight is the same thankfully and all my bloodwork came back fine too.  I am coughing slightly less, however, it is a dry cough and not mucus filled like it was before.  My SOB has decreased some too.  Looks like this tune up worked well.  Only a week and a half left on IVs and I will be done, hopefully until the winter.


  1. I started exeriencing painful joints before my transplant. I was never sure what caused it. My bone density was normal as well. I was told once that we can develope a type of CF arthritis or something. . .but I am sure it is a side effect of the massive usage of IV antibiotics. I was on IBprofin 800 for it and it helped. Good Luck and congrats on the improvment!

  2. I get the joint pain too and it sucks!! 800mg Ibuprofen doesn't even help. My doctor usually ends up putting me on Prednisone and then the pain goes away. But boy does it hurt...I definitely feel your pain! :(

  3. Thanks ladies. It just keeps getting worse. I am going to take Motrin tonight and see if that helps. I can't even bend down my knees hurt that bad :(

  4. I'm 5'4" and 3.14 Liters is my predicted FEV1. That's good you're paying attention to liters! I love numbers. :)