It's been a while...
SaltySouthpaw.com
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2y ago
Sorry about the absence ,but cf hasn't been the only thing that I’ve been battling for the past few months. Starting in the pandemic the mental strain that was thrown at me was something I had never experienced before. I’ve always been able to take whatever surgerys, picc lines, and tough bacterias that were thrown my way, but nothing prepared me for what I would experience coming out of the pandemic. On top of what seemed like the never ending hospitalizations and being accused of not taking care of myself throughout the pandemic, I had baseball, friends, and any kind of social interaction ..read more
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Discharged
SaltySouthpaw.com
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2y ago
Azer's PFT yesterday was the same as Monday, it hasn't gotten any higher or lower. The doctor thinks that perhaps with exercise, he could get it back. He gained over 20lbs during this admission. He will be on two oral antibiotics and one inhaled for the next month to continue to treat the achromobacter and pseudomonas.  He was so glad to get home and be with his kitty!  ..read more
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Compliance, Virus and Admission
SaltySouthpaw.com
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2y ago
This has been quite the difficult month. Azer ended up getting a virus which made him pretty sick with fevers. He went to clinic to get checked out. Unfortunately, he hasn't been doing breathing treatments as much as he should. It is difficult to make time for treatments when he wants to be out with friends and when he comes home from work late at night, especially when he says he doesn't feel that bad. The clinic has been trying to work with him on ideas on how to fit it all in, and what can be cut out as long as he tries to stay compliant. His lung function has been steadily declining be ..read more
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18 Years Old
SaltySouthpaw.com
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2y ago
It seems like a long time ago, and at the same time it seems like only days ago that I had a tiny, medically fragile baby that was my whole world. Although it was the biggest responsibility and challenge I have ever had in my life, I wouldn't have changed it for anything. You changed my life in an instant, and I vowed to always be there for you, even though I was terrified of losing you. I grew up with you, we became a team fighting CF. We have shared so many good times and the bad times. Even though you are 18 now, and legally independent, I will always be here for you in any way you need m ..read more
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Clinic Visit
SaltySouthpaw.com
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2y ago
Yesterday was Azer's follow up visit. As is common for any one, even without CF, Azer has struggled through the summer with keeping a schedule. Now that school started again, he's been trying to figure out how to balance school, work and CF at the same time. This is an issue for adolescents with a CF, gaining independence and managing life and CF throughout highschool and college. Unfortunately, his weight has fallen quite a bit over the last month as he's hasn't been doing his overnight feeds consistently. His lung function also fell again, so they want to see him back in a few weeks. The cl ..read more
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Last First Day!
SaltySouthpaw.com
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2y ago
Azer starts his senior year of High School today ..read more
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CF Clinic
SaltySouthpaw.com
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2y ago
Today, Azer's PFT was quite a bit higher than two weeks ago. This is despite being off of Tobramycin for several weeks due to pharmacy issues.  He lost several pounds over the past two weeks, mostly due to not being consistent with his overnight feeds, but he plans to start getting them ready before he goes to work so he doesn't have to push himself to do it late at night.  Azer was invited to do another study, this one being for breathing treatment compliance, if he qualifies.  ..read more
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Bone Density Test and CF Clinic
SaltySouthpaw.com
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3y ago
Today Azer had a bone density test to test for osteoporosis that can affect people with CF. We'll find out the results later this week. Azer has been working hard and taking a lot of shifts at work, sometimes working up to 40 hours a week. His pulmonologist is a little concerned about how many hours he's working as at times he's too tired to wake up on time and do his complete treatment. He is still working on trying to adjust his schedule and work out a routine to help remember his medications, and give himself enough time to do his breathing treatments.   Azer has been been more ..read more
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ENT
SaltySouthpaw.com
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3y ago
Today was a follow up to March's ENT appointment. Azer was a few pounds heavier than be was at CF clinic a few weeks ago. He's been better about doing his night feeds. He hasn't been doing his nasal rinses that frequently, but the ENT doctor said there weren't any polyps and that things looked pretty good. She wasn't aware that he's been on Dupixent for a few years, and she said she wished that more kids she sees could get insurance approval to be on it, since it really helps slow the growth of polyps, even to the point of delaying the need for surgery.  Azer has been having drainage i ..read more
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CF Clinic and Sweat Test
SaltySouthpaw.com
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3y ago
For about two weeks, Azer has been experiencing symptoms of either a virus or allergies, with worsening CF symptoms. He called his doctor on Monday and she told him to take a high dose of OTC allergy pills. It has helped some, but most of his symptoms are related to his sinuses. He felt well enough to wait for a clinic visit for today. Today Azer was 10 pounds less than he was when he was discharged from the hospital. He hasn't been able to do all of his night feeds as he his stomach has been filling up with mucus. There weren't too many changes in his routine so far. They are running ..read more
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