Surprisingly enough, it\u2019s already been 3 months since my last transplant checkup. We were up bright and early\u2026ok maybe not so bright, but it was very early.<\/p>\n\n\n\n
First stop was for an echocardiogram. They did the echo without contrast and then with contrast. Thankfully it was an RN that came in to start an IV for the contrast. I mentioned that I have a port. He said, \u201cyou have a port? Well then we\u2019re using your port!\u201d Hallelujah! Haha<\/p>\n\n\n\n
Next stop\u2026labs and chest X-ray. All is good with my blood work. There were no changes in my chest X-ray as well. We grabbed some breakfast and wasted time until my next appointment.<\/p>\n\n\n\n
Next up\u20266 minute walk. Today I walked 1,087 feet. The goal is to walk at least 1,000 feet. My oxygen saturation was fine during the walk so I didn\u2019t need any oxygen. I also didn\u2019t need to take any breaks during the walk. During my walk in September, I walked 1,116 feet with no breaks and no oxygen needed. So it\u2019s not a big difference between the two.<\/p>\n\n\n\n
After a gap in appointments that allowed for time to rest, it was onto the next one\u2026chest CT without contrast. There were no big changes in my CT.<\/p>\n\n\n\n
Second to last stop was for lung functions. My FEV1 was 0.72L\/28%. They are down from the last time I was here. The last time I did home spirometry on December 4th for my follow up after IVs, they were 29%. <\/p>\n\n\n\n
Final stop on today\u2019s, very long appointment schedule, was with the transplant doctor. She said that my X-ray and CT showed the same damage in my upper lobes that it\u2019s been and most likely some left over stuff in my lower right lobe from my recent exacerbation. I need to get my butt in gear and actually start exercising. I have to work through the fear of not being able to breathe when I exercise. The really bad asthma attack I had in March solidified my fear of not being able to breathe. <\/p>\n\n\n\n
Many people ask me, with my lung function this low, why am I not listed for transplant yet. The low lung function number does NOT<\/strong> automatically mean it\u2019s time for me to be listed. There are A LOT<\/strong> of factors that come into play when making the decision to be listed. Yes, my lung function is really low but I\u2019m still able to do a lot of things. I do need A LOT of breaks to catch my breath while doing things but I push myself to do as much as I can. I know that someday I won\u2019t be able to do those things, so I will do them until I am unable to. If the frequency of my CF exacerbations increase, then that will be another factor to consider along with other things. So to answer your question, no 28% lung function does NOT<\/strong> automatically mean I\u2019ll be listed for lung transplant. <\/p>\n\n\n\n I understand that if you aren\u2019t familiar with CF or lung transplant, this seems stupid. There is a reason though. The goal is to use up the lungs I was born with for everything they have to give. Post transplant is a whole new ballgame in many ways. So I am \u201cA OK<\/em>\u201d with holding off as long as I am able to.<\/p>\n\n\n\n I\u2019m set to come back in 3 months which will be March.<\/p>\n\n\n\n Until next time\u2026<\/p>\n","protected":false},"excerpt":{"rendered":" Surprisingly enough, it\u2019s already been 3 months since my last transplant checkup. We were up bright and early\u2026ok maybe not so bright, but it was very early. First stop was for an echocardiogram. They did the echo without contrast and then with contrast. Thankfully it was an RN that came in to start an IV […]<\/p>\n","protected":false},"author":1859,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-83","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/posts\/83","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/users\/1859"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/comments?post=83"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/posts\/83\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforshannonm\/wp-json\/wp\/v2\/media?parent=83"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}