I have a lot of feelings going on, for many, many, many reasons. It all centers around my health and family.On August 4th we received 3 Foster kiddos, let's call them "Cajun, Barbie, and Shoes" (that is what I refer to them by on FB). It was a very big Roller Coaster ride for the last 3 months.
If that isn't enough worry and emotions to have going on, we can throw my hospital stay and lower lung function into the mix. I knew my lower lung function was not a result of the kids (even though many believe it was)... Yes, I was run down from pulling all the "all nighters" with the kiddos- they are adjusting to a new home and its hard on them. BUT, I have been struggling with lung function for the last year now. I was 60% August 2016. I started Orkambi in Sept and 5 weeks later I was in the 20s.. I was admitted (my family did thanksgiving with me at the hospital last year). When I went home I was between 38-45 for months that followed. Not even getting to 50 was a huge heartbreak for me. I was worried the 38-43 range would be my new baseline. I have nothing against transplants, but I REALLY do not want one (although I won't refuse if the time comes). I didn't understand why I dropped, no new bacteria, no change in anything... then in June of this year I was taken off Orkambi for a different med trial... during that time I popped up to 58. As soon as the period was over and I started back on Orkambi I declined down to 36 and ended up being admitted again.
My two weeks in the hospital and 3 weeks total of IVs did little to nothing for my lung function. 36 to 38 %. However, Doc and I agreed it was time to go off Orkambi and see if I jump up again. I really pushed to stay on it, nowing it is a "Miracle Drug" for many and I hoped it would help me. So 4 days post-hospital I went off Orkambi. A lot has happened since the hospital stay. Tons of stress over losing 2 of our 3 kiddos, I caught some virus/cold for a few days, then my therapy machine broke (had no nebs for over 5 days- thanks to weekend). So I didn't have much hope walking into my doctor office on Wed.
My weight went up from 110 to 113 in the two weeks, which I was impressed by. And then time for my PFTs. I couldn't believe I blew a 48%. No, it is not in the 50s, but considering everything I had going on in those two weeks... I was amazed I went up 10% since hospital. We definitely think Orkambi was the culprit in my lower lung function and we hope as I continue to not take it, I will climb up into 50s and even hit my 60% again! Please know, I am Pro-Orkambi for others and realize I am one of the very, very few it didn't help. (This post is not anti-Orkambi)
60% lung function is my goal!!!!! Not to add in more exercise, etc.
60% is basically the highest lung function I can ever have, due to scarring and irreversible damage. 20% (for example) is the lower range for transplant. Which means I do not have 100 percentage points to "play with." I have 40 Percentage points in between my healthiest and "game over (for my lungs)." THAT is realistic. Going from 20% to 40% isn't a normal 20% increase... on my scale of life it is a 50%. This means I should congratulate even my little increases and take caution with small decreases.
Means one cold, one flu, one virus dropping us 10% (is more like 25% of our "life"). It gets tougher to combat these illnesses. My psuedo flares whenever I'm ill and I'm becoming more and more resistant to the meds. I'm not unable to take Tobi daily (due to intermediate resistance). It can be overwhelming if you focus on the negative and scary side of things. I try to remain focused on my future. Getting my function up to 60% and keeping stable, and honestly "holding out" for My "miracle drug." New ones are always in the works, so thank you everyone who has EVER donated, fundraised, or helped!!!!! <3
What a story. I found it fascinating as a mom of a CF son, who died many years ago. It is astounding all the research & advancements. We didn’t have understanding of much...just did therapy, hospitalizations, prayed & hoped. This inspires me to raise even more when I walk in Great Strides
ReplyDeleteHope the two older children get the right kind of professional help. And that despite whatever problems they have. That they have good memories of the time both of them were with you. No one knows what is going to happen next. Bur whatever happens always try to find something positive about it. I believe that things will always work out how they were meant to be. Which may not be the way you wanted. And may seem like your going uphill all the time. But going down is easy. Not everyone makes it to the top. Only those who are determined to persevere can overcome any obstacles there may be. So whatever happens you will make it through if you are willing.
ReplyDeleteIt is pretty amazing what has been learned and developed in the CF Community. I always say that I (and other CFers my age) were born in the "caveman" CF era (didn't even have the gene discovered) and then we saw "pyramids being built" (Tobi, Pulmozyme, etc), and we will be lucky enough to see the "space age" and witness a cure (or gene-targeting drugs that are close to the same thing). and thank you for attending Great Strides. I think often of my (passed) CF friends and pray for their families. My laura, Casey, Andrea, Kevin, Danny, Monia, Abby, Shauna, and Rod. <3 Big hugs friend!
ReplyDeleteAndrew and I are staying in the kiddos lives as long as we can. We hope to be mentors and visit the older two as much as we can. We already have on visit planned (going Bowling with them). I do believe things will work out, but it is scary not knowing what will happen to the older two. Our little guy is returning home, which is great for him (and I can't imagine how much his Dad has missed him), but as far as the older two, we take it a day at a time. We miss them, but do believe it was the right step. And thank you for the kind words Doug! Hope you are well! :-)
ReplyDeleteLoved them too. My goal for Great Strides $1000
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