Determination letter received

I received my letter of determination from my lung transplant evaluation….

  • “This letter is in regards to your recent lung transplant evaluation at Barnes-Jewish Hospital in St. Louis, MO.  Based on the results of you evaluation, we feel like you may be a suitable candidate for lung transplant in our program.  However, there are some program requirements that must be met before you can be listed with the United Network of Organ Sharing at our hospital.  Therefore, you have not been listed with the UNOS at this time.  Attached is a letter from your Nurse Coordinator outlining the requirements that must be successfully completed prior to listing for lung transplant.”

All of that above means that I am a candidate for transplant at Barnes BUT I have a list of things I have to complete before I will be listed.  It kind of feels like I have a research paper to do so of course I feel like I have a deadline to meet.  hahaha  The list of things I need to complete are the following:

  • Vaccinations: Hepatitis A & B, Tetanus, Pneumonia (up to date on that one since I just got it last year), yearly Flu shot
  • Testing:  Stay up-to-date on the following;
    • Yearly dental exam  (partially checked that one-off today with finally getting the small filling done that has needed to be done for 4 months or so but I kept getting sick)
    • Yearly Eye Exam  (checked that one-off today!)
    • Bone Density scan
    • Yearly gynecological exam (PAP test) and mammogram (if appropriate, age wise)
    • Any other age-related or family history directed testing required.
  • Communication:  Notify transplant coordinator of any changes in insurance, address, and telephone number.  Forward any necessary medical notes (like when vaccines are given and testing are done, etc) from doctor visits and hospitalizations so they are up-to-date on what is going on with me 8 hours away.
  • Pulmonary Rehab:  The one I loath the most but I know it will help me.  I know I need to do it and I will.  I will complain the whole time because I hate exercise but I will do it. hahaha

Now that we have all of that out-of-the-way. haha  I have been having some good days in most regards.  There is always something that’s just “not right” about me every day, whether it is lung pain, back pain, coughing a lot, coughing up a lot, worn out, etc.  I take the good with the bad and try to focus only on the good when I can.

I had more injections in my back yesterday.  They were the usual annoying and now my back is sore.  They haven’t kicked in yet which I hope they do very soon because my ribs on my right side are hurting a lot again.  The last intercostal block lasted about 3 weeks, I think.  The hope is that they will last longer and longer every time to the point that my ribs will heal and I won’t need the injections.  I’ll just say fractured ribs when you are a professional cougher is for the birds.  Not a fan, not a fan at all.

I have had more energy the last few days so of course i have been “running” with it (running in quotes because we all know I am not running anywhere….hahaha).  I have done some cleaning that I haven’t been able to do in a while, of course with taking breaks, lots of breaks.  My sats have been decent so I haven’t needed my oxygen all that much so that’s another plus.  I don’t want to jinx myself by saying the good news because I am always waiting for the other shoe to drop.  I will enjoy the energy while I have it and rest and do nothing when it is gone, because it will be gone at some point.  haha  It also helps when I have good emotional days.

SHANNONIGAN STRONG GEAR UPDATE:  The shirts should have been printed today which means they should be shipping out very soon!  Thank you to all of you that were able to order!  There were 117 items ordered and that’s not including my items that I ordered for my family and the extras to have on hand for those that missed the sale and for the raffle at the cornhole tournament.

CORNHOLE TOURNAMENT UPDATE:  Don’t forget to mark your calendar for Saturday September 17th for the tournament.  We have received many donations from local small businesses for the raffle which we are very excited about.  Plus we have the BIG raffle item…custom cornhole boards!!  Raffle tickets are 1 for $1, 6 for $5 and 12 for $10.  All donations need to be in by the end of August so I will be posting pictures of the baskets so everyone can see what awesome things we received and they can then start planning which baskets they want to put their raffle tickets in for.  PLEASE GO TO THE SHANNONIGANS CORNHOLE TOURNAMENT FACEBOOK PAGE…. LIKE IT AND SHARE IT, the word needs spread!!!   (www.facebook.com/CFShannonigans)

Until next time…

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