Pre transplant check up

I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.

The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha

Until next time…

Transplant Talk: Sinking in

Now that I am actually getting to the point of listing it is sinking in how sick I really am.  I am sleeping about 12-15 hours a day and even more if I take a nap.  You may say how is that possible or wonder why I am sleeping so much.  My body is very worn out just from working to breathe and then there is the coughing on top of that.  My body is sore from all the coughing I do. Continue reading

(Pre) Transplant Appointments

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. Continue reading

I Remember When

I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading

CF Clinic Day

The first bit of news is that my dad is here to visit for a week…yay!!!  He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them.  Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha

Today was a good clinic day.  First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick.  I have been having good days and bad days as per my normal so I was curious how my appointment would go today.   Continue reading

Transplant Evaluation week is coming

We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.   Continue reading

CF Awareness Month: Cure? and transplant

There is no cure for CF. There has been leaps and bounds in research for medicines to help treat CF. They have made headway in research for a cure but nothing solid. The saying, “the cure is right around the corner!” has been around for many many years. My parents heard it when I was diagnosed 34 years ago and “they” (CFF, docs, etc.) are still saying it today. With that said, we are closer to a cure than we were 34 years ago. I don’t think I will see a cure in my lifetime but who knows, someone may surprise me with that. If I can live my life as an example and do my part for research then that is all that matters for the generations behind me. They are doing research with stem cells in hopes of helping correct the defective CF gene, which is promising. Continue reading