My Journey with Pulmonary Fibrosis

First an update:  The right heart cath procedure went as planned...no problems.  I was in and out of there within four hours and promptly was treated to a wonderful, steak dinner by my even more wonderful husband, John :)   He amazes me...no matter what I look like, or how I feel, he seems to always see and look at me with the same twinkle in his eyes and smile as he did on everyone of our special days....1st dance....wedding...birthdays, etc. etc. :)  He never sees the huge bandage on my neck, like with the cath, or the oxygen tubes around my neck, etc.  He also never notices, or at least never lets on that he notices, all the stares from other tables, that I see.  Oh well, that is for another addition here at another time!

The results of the cath are so/so.  The doctors findings were that the Pulm. Hypertension numbers were actually a lot less than the inital findings had them rated at...so the Pulm Hypertension, at present is just alittle high.  The problem turned out to be Dyastolic Dysfunction.  My heart, not at rest, is pumping too hard, causing the blood pressure to run very high.  If I just walk across a room my pulse rate bounces up to 115 or so and the shortness of breath escalates quickly.  The Pulmonologist said she stopped the test because of the high numbers and wanted me to see a Cardiologist who would be able to just give me a pill and that would help me keep my pulse rate down and breathe easier...No problems the doc said, easy fix!   I was glad and looked forward to seeing a cardiologist to get that magic pill.

I saw the heart doctor last week and guess what....NO MAGIC PILL.  The fifth physician to look me in the eye and say "There is nothing we can do for you"  'There is no cure yet for this problem'.  He said just to turn up my oxygen when I feel the pulse rate pounding and sit down and let it resolve itself at rest.  He did say this goes along with Pulmonary diseases and also with the Vasculitis I also have.  It didn't make my day, to say the least.  No, Virginia, there is no Santa Claus and there is no magic pills or cures for every ill....Soooo....it is time for a long, good vacation.  The docs all say go now....they don't have to tell me twice!

We are taking a two week road trip, my hubby and I.  We've never had two wks, totally alone, to just wander, so we are grabbing the time and packing the Jeep and away we go, starting tomorrow!  Our goal is Yellowstone National Park.  It is supposed to be snowing there by Thursday...we hope to be there by then!  I will post a beautiful picture from the mountains as soon as we get back, which we think will be around November 9th or so. 

Gotta go and help fill the Jeep with Oxygen tanks that we will refill along the way at various suppliers.  Have a great couple weeks, and I will write again as soon as I can.  Maybe I will be able to take my laptop along and write along the way! 

Yellowstone or Bust!   C'ya soon....

|  Add to del.icio.us |  digg this

• #6 Comment from princesssaurora 
  10/30/06 3:35 PM | Permalink

  I hope your trip is wonderful magical fun.  I can't wait to hear all about it!
  
  be well,
  Dawn
  
  http://journals.aol.com/princesssaurora/CarpeDiem/
• #5 Comment from rebuketheworld 
  10/25/06 2:34 AM | Permalink

  Hello Jan....found your blog from Northern Lights....I know nothing about this Pulmonary Fibrosis....shall spend some time here...I am sorry for what your going through....it was wonderful to hear your hubby is supportive and you two could spend some time together...will be praying...have you on alerts
  
  ~Raven
  http://journals.aol.com/rebuketheworld/RandomThoughtsConnected/
• #4 Comment from am4039 
  10/24/06 8:50 PM | Permalink

  you have a great time on vacation. It sounds like a well needed one.  Your husband sounds like a very special wonderful man. SO happy for both of you.
  
  http://journals.aol.com/am4039/life/
• #3 Comment from lovabledianne 
  10/24/06 2:16 PM | Permalink

  You've got a wonderful man there.  He's from the heart, that one.
  
  Pulm. Fibrosis sucks.  Heart dease runs in both sides of my family, so I kinda know what you are going through, having seen it in my relatives.
  
  Yellowstone looks like a fantastic place.  INHD runs a high-definition program on it quite frequently.  We are off to Bodie, Montazuma's Castle, and the Grand Canyon next week in our Jeep.  What model Jeep do you have?
• #2 Comment from pharmolo 
  10/24/06 9:31 AM | Permalink

  Hi Jan,
  Good to hear from you. I'm most pleased that your hubby is spoiling you to bits, and that you still keep such a positive attitude. Go wild in Yellowstone (never been myself, but read many stories), and have a fantastic time. We'll hear from you some time after November 9th.
  
  Go well
  
  Guido
  http://journals.aol.co.uk/pharmolo/NorthernTrip