Looking back on this hospital experience, I would say this was a CF clean-out to judge all others by. Being on a dedicated CF specific wing of the hospital had a lot of advantages. Your CF teams are taking care of you during your hospital stay! Sounds like a weird thing to need to say, but it is the first time it has ever happened. There were physical therapists available who came by the room a few times a week. They helped Kristen with stretching and strength training exercises geared to CF patients, opening up airways etc. The best part is its stuff she can do at home on a regular basis. Kristen has asked for physical therapy in the hospital for the last five or so years, with absolutely no luck. She was so excited about getting this service!
Kristen was able to start on some new daily stomach medications in the hospital. They really seem to help her nausea, vomiting and heartburn. Her stomach is THE best it has been in 2 years. The pacer didn't seem to be helping; so, these medications are amazing to have on board. She is still requiring some by mouth nausea and pain medication; but nothing close to what she was previously requiring and she no longer goes in to the home care place for IV hydration and nausea medication.
Kristen finished her IV medications at the hospital in about two weeks. These were the IV antibiotics used to treat all of the types of Pseudomonas infection that they found growing. Also it was the first time I've seen her receive IV hydration regularly in conjunction with her antibiotics. This is something we've been trying to advocate for her for a really long time. Another thing you really shouldn't have to fight to get.
About 5 days before discharge the team started Kristen on the oral antibiotics for the MAC infection. The treatment for MAC is three antibiotics at the same time for at the least a year but can take much longer. These medications all have risks and side effects. If the side effects become an issue the treatment regimen will be re-assessed and tweaked as appropriate. At first, Kristen was feeling so crummy and tired and was having major stomach issues that they thought she may not be able to continue the treatment. But time has improved her symptoms and she now only has minimal stomach-related side effects. Some days are worse than others with most being good days. They will be checking her sputum and blood every month to monitor infection, liver function, etc and will make changes as necessary. Throw another monthly doctor appointment on the calendar. Keep your fingers crossed because some people have to stop the treatment because of side effects. These medications can be hard on a persons body.
Kristen left with a weeks worth of prescriptions. When we got home she had to get her long term prescriptions filled. Some scripts were easier to get filled than others. Kristen had to wait three weeks for her new enzymes to be approved and delivered. She still hasn't received one more new stomach medication. Of course she really needs those medications. So, loads of phone call have to be made to ensure she will eventually get them. Getting her much-needed-prescribed,-in-the-hospital-medications shouldn't be an issue. But it is, and not only is it dangerous, it is a total time suck. I cannot convey to you all how much time and energy this takes for Kristen. It is like a part-time job. Seriously!
Thank you to all who continue to support us and read our story. We love you. And we can hardly believe that this rough patch might actually be coming to an end. And a much happier and healthier one no less!!! WHAT A RELIEF!!