One more week to go on Ceftaz...yaaaaaay *sarcasm* I can deaccess on Monday. I'll be down there anyway for a derm appointment so I am going to go in after to do PFTs.
My numbers are up some 1.05L, up from .85L. 33, almost 34%. Still not up to my usual 1.11-1.13L but its an improvement. I don't expect much more since its only Ceftaz I'm on and 2 orals. Which really sucks because next infection will drop me low again.
She wants me to get a hearing test next time I come in since I haven't ever had one. Glad. I don't think my hearing is horrible but I know certain pitches I can't hear. Whether its age or TOBRA related who knows.
That's all for now.
Tuesday, December 17, 2013
Friday, December 13, 2013
Home from the Hospital
I am home from the hospital. I actually got out on Monday but I have been so busy finishing up my paper, that I turned in Wednesday, and appointments, that I haven't been able to update.
I was admitted last Wednesday night and for some reason on Thursday afternoon I spiked a fever. 102.3 at its highest. No flu, no blood infection. Nothing out of the ordinary except that fever. Tylenol brought it down and by Friday night I was back to normal.
The doctors started me on Q36 for the Tobra this time since we always end up at that point anyway. Seemed to work well. Then I came home. I had 3 doses total when the nurse drew my labs Wednesday morning and I was told yesterday to stop taking it. Kidneys are not happy. WTF!? So now I am on oral Bactrim, oral Cipro and IV Ceftaz, aka. cat piss. Hoping my FEV1 came up a bit so that I can stop the IV Ceftaz before Christmas. I have clinic on Tuesday. My body never responds to orals. This is just wonderful.
Yesterday, Thursday, I had my follow up appointment to my colonoscopy. It was a little disconcerting. My colon polyp was adenoma as usual. That wasn't concerning. But, like I mentioned before they were finally able to biopsy that pesky cyst on my pancreas. Turns out it isn't CF related at all. Its a precancerous cyst related to my Lynch Syndrome. Like the adenoma in my colon, if left untreated it has the potential to turn to a cancerous tumor. "Biopsy of your pancreatic cyst revealed benign cells and CEA level 825 with amylase less than 3. This may be consistent with a mucincous type of precancerous pancreatic cancer." Fabulous. We didn't' discuss removing the cyst. Honestly I was a bit in shock that it WAS something that I forgot to ask about surgery. She wants to monitor it every 6 months with MRI/MRCP's again, and if it grows, I can talk to a pancreatic surgeon then. I am going to email her about just having it removed. I don't want that shit growing. On the bright side, I don't need mammograms just yet...
That is all for me. School is over and I am doing lots of crocheting and sleeping. I will post an update next week after my clinic appointment.
I was admitted last Wednesday night and for some reason on Thursday afternoon I spiked a fever. 102.3 at its highest. No flu, no blood infection. Nothing out of the ordinary except that fever. Tylenol brought it down and by Friday night I was back to normal.
The doctors started me on Q36 for the Tobra this time since we always end up at that point anyway. Seemed to work well. Then I came home. I had 3 doses total when the nurse drew my labs Wednesday morning and I was told yesterday to stop taking it. Kidneys are not happy. WTF!? So now I am on oral Bactrim, oral Cipro and IV Ceftaz, aka. cat piss. Hoping my FEV1 came up a bit so that I can stop the IV Ceftaz before Christmas. I have clinic on Tuesday. My body never responds to orals. This is just wonderful.
Yesterday, Thursday, I had my follow up appointment to my colonoscopy. It was a little disconcerting. My colon polyp was adenoma as usual. That wasn't concerning. But, like I mentioned before they were finally able to biopsy that pesky cyst on my pancreas. Turns out it isn't CF related at all. Its a precancerous cyst related to my Lynch Syndrome. Like the adenoma in my colon, if left untreated it has the potential to turn to a cancerous tumor. "Biopsy of your pancreatic cyst revealed benign cells and CEA level 825 with amylase less than 3. This may be consistent with a mucincous type of precancerous pancreatic cancer." Fabulous. We didn't' discuss removing the cyst. Honestly I was a bit in shock that it WAS something that I forgot to ask about surgery. She wants to monitor it every 6 months with MRI/MRCP's again, and if it grows, I can talk to a pancreatic surgeon then. I am going to email her about just having it removed. I don't want that shit growing. On the bright side, I don't need mammograms just yet...
That is all for me. School is over and I am doing lots of crocheting and sleeping. I will post an update next week after my clinic appointment.
Tuesday, December 3, 2013
It's That Time Again
Yup it is time for IVs!!! This way I will feel fabulous (or as fabulous as someone with my lung function can lol) for Christmas and visiting my family.
I blew some really shitty numbers today. FEV1 of 28%, .85L ha! Last time, Sept 17, I blew 1.11L, 36%!!! Holy drop batman!!! I haven't seen numbers like that since I did the Vertex study in Jan 2011. I was glad to see them so low because then she wouldn't suggest Cipro and Prednisone first. She did get an Xray done to make sure I didn't have a collapsed lung or anything like that. And I don't think I do or I would have heard back by now.
BCH and BWH made some changes and all CF patients up to age 35 have to be admitted to BCH unless they are listed for transplant or already transplanted. Luckily for me, I am technically listed for transplant even though I am inactive on the list. Seems weird to say that. But that means I can stay at BWH and not get used to another new hospital. Yayyyyyyy!!!
So it looks like tomorrow night I will be admitted and then I can be home on Monday, just in time to finish up my grad class. Lots of editing of my paper and crocheting will get done! Plus I starting getting a new magazine so I have 2 of them to bring with me. I won't be bored that is for sure!
Sunday, December 1, 2013
Time again for IVs I think
I had to bump my clinic appointment up to this Tuesday from December 17th. Its only a 2 week bump but with Thanksgiving there was no way I could get in any earlier.
Anyway, my lungs have been really horrible lately. I am super SOB, super tight, and in a good amount of pain 24/7. Since my doctor took me off of maintenance Motrin a few months back I deal with minor pain constantly. But nothing I can't handle. However, the last few weeks I have been popping it like candy again. I try really hard to avoid taking it but the pain gets so bad and I get so uncomfortable I have to take it.
I am also back up to 4 treatments a day and sometimes 5. I barely make it 4 hours before I am sucking back the meds. Sometimes, particularly at night, I don't even wait that long. I just can't breathe at all. I could barely make it up the flight of stairs, going super slow, at the library today and that was only 1.5 hours after my morning treatment, when I am supposed to be in my "best shape."
And the junkiness. Can't forget the increase in the wonderful mucus. Not much, but for me it is.
I really hope she just goes straight to IVs and does not want to try Cipro and prednisone first. I go to PA right after Christmas and I don't want to feel like shit when I am there. I always do and now I have a chance to be in better shape BEFORE I go down. I don't know how it will all work anyway since we are no longer inpatient at Brigham and Women's but instead admitted to Children's. This should be fun... I'm also worried she will want to start IVs but only at home and not admit me since we are in Flu season. I like starting my course inpatient. Its nice to have those few days to relax and not do household work, or cook.
The good news is if I do go inpatient I can finish up my final paper and some crochet projects that I have. My last day of class is December 11th and then I am off for almost 6 whole weeks. Being inpatient will give me some time to finishing editing my 38 page paper (ha its supposed to be 20ish opps). Seriously I am really looking forward to a few days to rest. I don't do that at home, that's for sure.
My appointment is on Tuesday and if I am lucky I will go in on Wednesday or Thursday. This way too, if I have to do 3 weeks I will be done by Christmas, just ha!
Anyway, my lungs have been really horrible lately. I am super SOB, super tight, and in a good amount of pain 24/7. Since my doctor took me off of maintenance Motrin a few months back I deal with minor pain constantly. But nothing I can't handle. However, the last few weeks I have been popping it like candy again. I try really hard to avoid taking it but the pain gets so bad and I get so uncomfortable I have to take it.
I am also back up to 4 treatments a day and sometimes 5. I barely make it 4 hours before I am sucking back the meds. Sometimes, particularly at night, I don't even wait that long. I just can't breathe at all. I could barely make it up the flight of stairs, going super slow, at the library today and that was only 1.5 hours after my morning treatment, when I am supposed to be in my "best shape."
And the junkiness. Can't forget the increase in the wonderful mucus. Not much, but for me it is.
I really hope she just goes straight to IVs and does not want to try Cipro and prednisone first. I go to PA right after Christmas and I don't want to feel like shit when I am there. I always do and now I have a chance to be in better shape BEFORE I go down. I don't know how it will all work anyway since we are no longer inpatient at Brigham and Women's but instead admitted to Children's. This should be fun... I'm also worried she will want to start IVs but only at home and not admit me since we are in Flu season. I like starting my course inpatient. Its nice to have those few days to relax and not do household work, or cook.
The good news is if I do go inpatient I can finish up my final paper and some crochet projects that I have. My last day of class is December 11th and then I am off for almost 6 whole weeks. Being inpatient will give me some time to finishing editing my 38 page paper (ha its supposed to be 20ish opps). Seriously I am really looking forward to a few days to rest. I don't do that at home, that's for sure.
My appointment is on Tuesday and if I am lucky I will go in on Wednesday or Thursday. This way too, if I have to do 3 weeks I will be done by Christmas, just ha!
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