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Monday, October 31, 2016

UPDATE 2


I have now completed every test, Xray, scan, and procedure for my transplant evaluation, except the colonoscopy......oh how I hate that one!  I went to Florida last week to tell my mom about the possibility of a transplant.  I told her I might not be down there again for another year or more.  Fortunately her dementia kept that bit of info from sinking in.  While in Florida I had a  oxygen concentrator delivered to the room I was staying in.  I was moving it over to an outlet and it tipped over and I fell on top of it.  I felt one of my ribs move and afterwards had a lot of pain.  An Xray didn't show much because my lungs are cloudy so the ribs do not show up well.  No obvious fracture, but most likely a cracked rib. Those things really hurt!  Taking a deep breath is a challenge!  I was told it will take about 6 weeks to heal.
 My need for full time oxygen has arrived which is one more thing to keep track of.  Trying to be positive here, but finding it harder than usual this week.

Thursday, October 13, 2016

UPDATE

The heart cath went ok, except for the fact that a resident left a bruise on my arm that is of  humongous size. Got more info from my transplant coordinator after spending two hours learning about all that happens before during and after a transplant.  I will be on immunosupresent drugs for the rest of my life, also Prednisone...the drug I love and hate.  Love because it diminishes my joint pain, hate because it makes me so hungry.  Patients do gain weight post surgery, so I need to lose 15 lbs to give me some leeway.  Some of the other restrictions are as follows,  no beadmaking post surgery, ever again.  Now that makes me sad, but I like breathing more than making beads so I will just suck it up.  I cannot be in rooms with any kind of fans, no flowers or plants inside the house, ever again.  That's another sad one because I LOVE flowers.  HB will just have to plant lots of flowers outside so I can enjoy looking at them.  No alcohol,  which isn't a big deal except that I love a Cosmo every once and awhile. No cats and when my dog goes to the Rainbow Bridge we can't get another one.
I have more lab work and X-rays next Tues and have to have a colonoscopy ASAP.  If all goes well I should know if I have been accepted into the program within a couple of weeks.  Once accepted you must stay within 2 hours of the hospital.  That means no more Florida trips to see my 94 year old mom, no trips to St Louis to see two of our grandchildren.  My mom knows I have pulmonary fibrosis but she doesn't know about the transplant plans so my sister and I will be making a quick trip down there in the next two weeks.  This will probably be the last time I will be able to see my mom....that's a really hard one.  My mom has dementia so I hope she doesn't realize this.
This is monumental in so many ways. Sometimes I feel really good about it and other times it scares the hell out of me.

Tuesday, October 4, 2016

HEART CATH

Tomorrow is heart cath day.....scary!  I have a friend that had one and she says it's a piece of cake because the drugs they give you make it so you don't care.......hoping this is true.  Having it at 3 pm.