The day started out with going to our dentist to get Izzy's tooth pulled. I can't believe that I miss the days when my own dad would just make me let him pull them out, but that's just not a battle I want to fight with Izzy, because it WOULD be a very dramatic battle. So off to the dentist we went. I don't think she realized it would hurt, which is weird because it isn't the first tooth we've had pulled, but maybe this is the first one that actually hurt. She cried gentle tears all the way home, and then for the next half hour, and NOTHING I did/said could console here. I was a little taken aback at the emotional outburst...I think I did a poor job of handling her sensitive nature. I just think sometimes that I'm so ill-equipped for all of the emotional outburst that are headed my way in the very near future. The last week has been full of them, and I honestly can't tell if it's hormonal things starting or if it's just her feeling a lack of attention. Somedays I'm so checked-out that I don't hear half of what she says...I'm just trying to get through the end of the day so I can go to bed, but that's also a terrible feeling with the amount of guilt that goes along with it. I sure hope the tooth fairy doesn't forget to visit like she did the last time ;)
She's fine now and sleeping in my bed because Joacim moved to the spare bedroom again to get a good nights sleep. Those are hard to come by for us lately due to the intense coughing, and on dialysis nights it's even worse because of the incessant beeping. Nearly every time, through the middle of the 8-hour run, it starts pinging with an alarm from a kinked tubing that's nearly impossible to find initially in a sleepy stupor. It seems unavoidable due do my current setup, which means I'm going to have to change it in order to increase the chance that it won't keep happening..
I'm coughing all the time now....sometimes it's productive and there's mucous I can cough out, which helps (but is gross in a million ways and unacceptable/impossible in certain social situations). Other times it's dry and related to a tickle somewhere in my throat and chest. The mucous that I have (and will always have due to bronchiectasis) changes daily too. Some days it's loose but there's a lot of it, and other days its hard and sticky and very difficult to cough up. I call this mucous plugging, and I can feel it with every breath...probably one of the most annoying things that happen because it's in my ear all the time. It's probably caused by dehydration, but I'm pretty limited on how much fluid I can take it because, at the end of the day, the only way that fluid comes our is through a 15 gauge (i.e. HUGE) needle. And now, on dialysis days, I've been waking up 2 hours or so from when the run is actually over, so I just have to lie here and think about all this crappy stuff floating around in my head until it's over. Winter will be better because it'll still be dark, but I really need some light blocking curtains in my bedroom. I have the blackout blinds, but they don't fit perfectly and there are still some gaps that I need to address, but that means I have to pick curtains. It took me 6 years to find curtains for our loft so I'm not holding out a lot of hope that I'll get this done in the next decade.
I realize Im rambling a little....it's just there were a lot of unrelated things today and I haven't updated in while and it's all just dripping from my brain.
So, onto my most pressing issue right now. A little timeline on all of the appointments/procedures/hospitilizations due to bronchiectasis since the beginning of the year:
1/19 - hospitalization for pneumonia
1/30 - office visit for follow-up to pneumonia
4/30 - office visit for lower-respiratory infection (pneumonia)
5/15 - outpatient bronchoscopy
6/4 - office visit for pneumonia
6/11 - hospitalization for pneumonia
6/13 - inpatient bronchoscopy
6/29 - outpatient bronchoscopy
As you can see, there have been a LOT of issues with my lungs and a LOT of visits to Methodist hospital to try to remedy them. This most recent episode started on 7/6 with the beginning of some pain in my upper right back, right next to my rib cage. It was mild at first....honestly I thought it was a kink in my back or a muscle spasm, but not a big deal. My breathing was better than it had been in weeks, and I was entertaining the idea of FINALLY returning to yoga after a hiatus since Izzy got out of school. I started taking Tylenol, did a little foam rolling and stretching, but it just kept getting more painful, and it started to affect my ability to cough, which is crucial to bronchiectasis management for mucous removal. So by the following Wednesday, I was in so much pain that I went to Urgent Care. It was starting to feel like more of a lung issue, but getting into my pulmonologist isn't easy so I went there instead. Good doctor, listened to my history and symptoms and did a chest X-ray that still showed pneumonia (but in my left lung which is where it was found on 6/4, but after several weeks of antibiotics and a hospitalization). Worse, the Xray showed nothing of note in the area where my pain was. The urgent care doc prescribed a muscle relaxer because he thought my acute pain was muscle spasms and some lidocaine patches, but suggested I update my pulmonologist, which I did that evening when I got home. I didn't get a call back until Thursday because my pulmonologist was in hospital that week and it's always hard to get a quick response because she's so busy, but we got an appointment with her for today and they were able to squeeze a CT scan in for me so we could have some better pictures than an x-ray can provide for these kind of things.
So all this past weekend long I'm dealing with some pretty intense pain....breathtaking as I've described to anyone who'll listen. No position is comfortable, nothing works to dull the pain, bras are excruciating and I feel this with every breath. Bending over is THE WORST. Nothing I've tried has helped at all, and it's starting to wear on me. But I've also tried to maintain a drop of hope because the radiologist reviewing my urgent care x-ray from last saw the pneumonia, but also thought he saw a pleural effusion in my area of pain, so I was hopeful that the CT scan would confirm the same thing and then we'd figure out next steps.
But dammit all to hell, nothing showed up of significance related to my pain. And worse yet, my pneumonia is worse and in both lungs now. I don't seem to grow any specific bacteria in my cultures that they get from the bronchoscopies....it just shows their's anerobic microbes in there, which indicates aspiration while sleeping due to GI issues. She asked a lot of questions to try to rule things out, and we've tested my immuoglobulines (which are completely normal), but honestly, nothing seems different. There's no obvious explanations as to why I keep getting these bilateral lower lobe infiltrates....it's not normal, which means there are no answers today. She suggested I get a full-body wedge for the bed, even though I have an adjustable bed, because even the bend at the waist from my bed could cause some abdominal pressure that could cause GERD-like symptoms. I've got an esophagram scheduled for 2 weeks to see how my body swallows and if there's anything that could be causing food or acid to be getting back up throat that could mimic the aspiration typical of that anaerobic culture. It all feels like an incredible long shot, but I'll go down whatever rabbit hole is necessary in order to get the bottom of it. And also a follow-up x-ray in 4 weeks to see if the pneumonia is resolved with 14 more days of antibiotics and some percocet to help with the pain. Antibiotics are dosed differently for dialysis patients...we get them every 2 days as opposed to every day for other people. I'm not sure if that means that they work slower in dialysis patients or what....it was something I forgot to ask when I went in. And Dr. Google was really not helpful today and I"m feeling a bit defeated, I can handle a lot, but this level of pain for this length of time is starting to wear on me. What I feel, in the long run, is that I'm going to be adding a GI doctor to my list of specialists that so far include nephrology, ENT and pulmonology.
My pulmonologist called in the percocet prescription in while I was in the room with her, and when she stepped out my pharmacy called to say that the requested dosage they didn't have and was abnormal, so I asked my doctor's nurse if she's make sure to get the message to my doctor. Since it's a narcotic, I know she's the only one who can fix this, but OF COURSE, when I went to pick up the prescription after Izzy's gymnastics practice tonight, it wasn't there. The amount of shit that I have to do just to pick up the medical pieces that other people are missing is staggering, exhausting and infuriating. It's all the fucking time now. A similar thing happened at Urgent care with lidocaine patches needing some prior authorization from a doctor. Again, pharmacy called for a follow-up to the doctor, but he never got back to them, which means I didn't get them. And honestly, I'm sick to death of trying to get a hold of doctors through their office staff....it's just taking too damn much emotional effort right now. Can't they just hold up their end of the bargain and FIX things without me ALWAYS having get a few follow-up calls from me????? Please? Luckily I had some leftover oxycodone to try to help with pain management, but that also means I'm going to be fighting some pretty severe constipation soon.
My life isn't easy. Here's my daily regimen JUST to maintain my current state of shitty health:
- dialysis 4 nights a week
- sinus rinse 2-4 times a day, which includes an antibiotic component that has to be refrigerated and thus not easy to remember to add
- 2 inhalers twice a day
- compression vest therapy 2x/day for 20 minutes
I just feel it all spiraling...there's no relief.....no health security to even make a loosely-planned drive to Indiana right now because I"m scared something will happen while I"m there and I won't have my care team.
The only good thing today was the beautiful weather and I completed 2 applications to be a dog/cat foster.
The irony is not lost on me that I thought FSGS and dialysis would be the worst obstacles I have to face. This lung disease is so much worse right now.