June 28, 2013

My friend said, "where's an update?"

I can't agree more with her - time sure flies by when one is having so much fun, LOL. 

I will begin with my results of Cardiopulmonary Stress Test:  
     I saw my cardiologist on April 16th,  I was told I have an Interstitial lung disease called Bronchietasis, which is restricting my airways and causing exercise induced PH (mild), I was to make an appt. with a Pulmonary specialist for more testing.  I already knew this from a year ago from my trip to Mayo Clinic.

     I finally got into my new Pulmonary Doctor on June 5th.  He confirmed everything and said at the present time since the PH is caused by the Bronchietasis he needs to deal with that so I do not progress to a higher level of PH.  I was told that there is no cure for Bronchietasis just treatment so that is what we will work on.

     He further said that I need a percussion vest to help in breaking up what is in my lungs.  But with my insurance they are saying I must meet all 7 criteria before they let me have one.  I meet all but one - the need for 3 different kinds of antibiotics for the lungs within a year at 3 different times.  Due to all my antibiotic allergies I have been able to only take 2 kinds, so now it's fighting with the insurance company.  I will see the Pulmonary Doctor in September for a follow up.  He said if I can't get the vest he'll have to go into the lungs directly to help clear it out.  I am praying the insurance allows me the vest.

Okay now unto the intestines:  A  problem that will be fixed soon.

     Changed my diet drastically but  no changes in bowel habits occurred even after my 10 days of antibiotics so my GI doc said it was time to go see the colon surgeon again to see if she had any suggestions.  I saw her on May 30th.  She ordered another defecography to confirm her thoughts.  which it did.  Rectal prolapse with rectal damage to the muscle, Pelvic floor dysfunction.  Nothing was working right.   She called me on Friday, June 21st and said to come in on the 25th to discuss my options, really there was only one. 

     On July 10th I will be having an Ileostomy done.  It is similar to a colostomy but only using my intestines for the Stoma because I do not have much of a colon left. 

     I am not upset with this at all as I have been in so much pain and my stomach so distended I look like I am 5 months with child.  Hospital stay is based on my body and how it responds, I will be going for  Stoma training prior to surgery but that still needs to be set up.  I will try to post more often as my friend says she checks my blog for updates on a regular basis. Talk to you soon, Deb.