Today was clinic day and a short one at that, in terms of normal clinic days. No complaints here. It seemed like everyone was on vacation. My question is, why didn’t they take me with them? haha
Clinic wasn’t good or bad really. It was pretty much down the middle. My lung functions were ‘up’ to 33% from the 30% they were last time. I don’t really call that ‘up,’ I call that marginal. It’s as if I squeezed my chest while doing them and squeezed out a hidden ounce of air to get that extra 3%. haha
The only real issue to address today was this rib/muscle pain that has been here for well over 6 weeks. If I remember correctly it started after I had the bronchoscopy on February 3rd. That means the pain has been here for 8 weeks. Holy cow Batman, that’s a long time. Nothing has helped it. Not Motrin, Tylenol, Aleve, Lidocaine patches, pain patches, Lyrica, muscle relaxers and more. Narcotics like Norco and Percocet only seem to take some of the sharpness off which is at least something. They are referring me to the pain management folks for a possible intercostal injection which is the space between the ribs where the pain is. This is going to hurt but if it helps I’m willing to endure the pain because this everyday stabbing pain that is worse with coughing and sneezing, both of which I can’t not do, is for the birds.
Next order of business is that I asked to be referred to the vascular doctors to have my almost 10 year old chest port replaced with a Power Port. A Power Port is a type of port the IV contrast can go through at the high velocity that it needs to for scans and such. My veins are so bad that my vein they put my peripheral IV in for my CT with contrast at my admission is still rock hard from where it was blown. My port will need to be replaced at some point and I want it done when I have a say and when I am “healthy-ish.” So I am waiting to hear about that as well.
The final order of business was that we decided on a lung transplant center to have my records sent to for review. After much research and agonizing over the fear of making the wrong choice I chose Barnes-Jewish in St. Louis, MO. My records along with a letter of recommendation were sent on Monday. Now we wait to hear from them after they have reviewed everything and the transplant team and pulmonary docs have met and discussed my case. We will most likely receive a letter stating when an initial appointment has been made for me or to call and set one up. Our first appointment will be a lot of us asking questions about the logistics of us living in east TN and being 8-8.5 hours from Barnes. However my family in KC is only about 4 hours away. We will have to find out all the ins and outs of their centers rules, as all of them are different. I will update more about this when I know more. It could be 3-6 weeks before we even hear from them.
I think that covers about everything from todays appointment. Oh I am still using oxygen, especially when out and about. If my sats are decent while sitting at home doing nothing I will take spurts of no oxygen. That’s all folks!
Until next time…