I had a sick visit clinic appointment today. Recently I have been more short of breath and have been having some lung pain. And since I am supposed to be starting the new drug Orkambi soon, I wanted to be sure I was in tip top shape. The first few weeks on it people can be more short of breath and tight and since that is normal for me, I don't want to make it any worse.
So Wednesday I will be going inpatient at MGH for the first time, for two weeks. Then when I get out I can start Orkambi and see if it works on me!
Also, I did a 24 hour urine collection last month to see how my kidneys are functioning. Well the place we used screwed everything up so I need to do it again. Clinic tried so hard to understand the results with no luck. And for some reason the place put down I only had 500 mLs of urine which is nothing when I know I had at least 2100 mLs since I looked before I dropped it off. So I get to do that again tomorrow so I can bring it with me when I am admitted and then MGH can handle it. He also mentioned that I might need to see a renal doctor after we get the results. But we are going to give Tobra another try which I like because my lungs always respond very well to it.
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Monday, August 24, 2015
Wednesday, April 29, 2015
Clinic Update
So clinic went better than I had expected. The past few weeks I have been waking up at night coughing my face off. I feel like I have a tickle in my lungs that just won't go away. I prop myself up some more and fall back to sleep once the fit is over. So I was kind of expecting my numbers to be the same or even down some. However, they were up!!! I went to a whopping 37%!!! 1.11L, I haven't been that high since November right after that clean out. So the cold weather leaving definitely helped.
There is a good chance I have bad allergies so she suggested I see an allergist. Adding it to my to-do list. She recommended I try benedryl if my eyes are too much for me. Right now I have raw marks under my eyes from itching. First thing she said to me when she saw me (after hellos of course) was "what happened to your eyes!?"
She introduced me to one of the pulmonary resident's at BWH who was making his rounds with her. So I got to speak with him first. He said from my chart and what I told him that I probably have undiagnosed and untreated asthma. Something I have been saying for a few years now but no one listened. So he mentions Spiriva, and I am getting an rx for it!!! Kind of excited about that. I have heard great things about it and cannot wait to see if it helps my inflammation issues. I am also doing a week of Prednisone to see if that helps my allergies.
And finally, I did it. I made the choice to leave my clinic and start new at MGH. I have an appointment for June 2nd tentatively set up. I was a little hesitant at first because of the changes they want to make with my care, but then when I went to check out and make a new appointment, they couldn't do it because the summer schedule was up. So I am supposed to call back in June to make an appointment. But I will just have to call to get some things sent to MGH and then tell them I am leaving. No need to cancel any appointments huh?
Oh and OMG!!! I head back from Dr. H!!! From Philly. OMG I was so excited to see his email pop up!!! He told me to stop in any time I am down there and he will make time for me. I cannot wait to see him!
There is a good chance I have bad allergies so she suggested I see an allergist. Adding it to my to-do list. She recommended I try benedryl if my eyes are too much for me. Right now I have raw marks under my eyes from itching. First thing she said to me when she saw me (after hellos of course) was "what happened to your eyes!?"
She introduced me to one of the pulmonary resident's at BWH who was making his rounds with her. So I got to speak with him first. He said from my chart and what I told him that I probably have undiagnosed and untreated asthma. Something I have been saying for a few years now but no one listened. So he mentions Spiriva, and I am getting an rx for it!!! Kind of excited about that. I have heard great things about it and cannot wait to see if it helps my inflammation issues. I am also doing a week of Prednisone to see if that helps my allergies.
And finally, I did it. I made the choice to leave my clinic and start new at MGH. I have an appointment for June 2nd tentatively set up. I was a little hesitant at first because of the changes they want to make with my care, but then when I went to check out and make a new appointment, they couldn't do it because the summer schedule was up. So I am supposed to call back in June to make an appointment. But I will just have to call to get some things sent to MGH and then tell them I am leaving. No need to cancel any appointments huh?
Oh and OMG!!! I head back from Dr. H!!! From Philly. OMG I was so excited to see his email pop up!!! He told me to stop in any time I am down there and he will make time for me. I cannot wait to see him!
Tuesday, April 14, 2015
Making Great Strides in CF
Holy Shit! I can't believe how long it has been since I last blogged. Life has been super busy for me.
On April 8th I was fortunate to take part in a guidelines meeting at the CFF in Bethesda. I felt truly honored to be a part of something so important. Plus I got to see an old nurse from 1990-1996 and see the CF director of my old clinic in Philly. To be involved was very gratifying. I try to do my part, I raise awareness, I make fun crochet goodies for CF fundraisers, I do Great Strides and I blog (well maybe not so much anymore lol). But this, this was different. This is something that will affect all of us CF adults in the future. And it was amazing. So much so I filled out an application to be a part of the patient advisory council!!!
Currently I am looking into organizing two paint night fundraisers for my walk team. One will be in the Philly area and the other in the Boston area. As soon as I get dates and details nailed down I will be sure to post.
I was inpatient in both November and January/February. The January admission was much needed. I started pulmonary rehab and I was on 3L of O2 with exercise!!! I am back to not needing it now that I am out thankfully. But I was super low, the lowest I have been since I moved up here. I didn't even get a chance to prepare for my admission. I went to see her on Tuesday and I wanted to go visit my family for "Christmas" that weekend and I had to cancel. I talked her into letting me wait one night so I could get my things together etc. Yeah it was that bad. But I started to feel better in a week or so. Unfortunately I didn't bounce back like I thought I would. I was down to 27% and I only bounced up to 31%. Down from 34% in December. I go back April 28th and we will see if I jumped anymore now that the cold weather is gone.
Now for clinic update. I have been considering switching my CF clinic. Currently I am seen at the Children's hospital. Now while I love my doctor, I am not keen on the whole children's thing. Plus there is a disconnect between the clinic and inpatient. And there is a lot of pressure to do home cleanouts vs inpatient because of the cost of CF care inpatient to the hospital. So I met with the NP over at MGH today and I really liked it. I have to decide what to do soon. Like I said before, I have clinic on the 28th and I told the NP I would make a decision after that. My pro con list has been read and re-read hundreds of times. It is not a choice I can make lightly. But on the easier side, I can keep all my cancer care and transplant appointments at BWH for the foreseeable future. I asked both about switching CF centers and that has no bearing on either thankfully.
So there you have it. Six months of updates in a few paragraphs. I will be sure to update after my appointment. And on anything else that may arise in the meantime. I would like to get back to blogging so bear with me while I get in the habit again <3
On April 8th I was fortunate to take part in a guidelines meeting at the CFF in Bethesda. I felt truly honored to be a part of something so important. Plus I got to see an old nurse from 1990-1996 and see the CF director of my old clinic in Philly. To be involved was very gratifying. I try to do my part, I raise awareness, I make fun crochet goodies for CF fundraisers, I do Great Strides and I blog (well maybe not so much anymore lol). But this, this was different. This is something that will affect all of us CF adults in the future. And it was amazing. So much so I filled out an application to be a part of the patient advisory council!!!
Currently I am looking into organizing two paint night fundraisers for my walk team. One will be in the Philly area and the other in the Boston area. As soon as I get dates and details nailed down I will be sure to post.
I was inpatient in both November and January/February. The January admission was much needed. I started pulmonary rehab and I was on 3L of O2 with exercise!!! I am back to not needing it now that I am out thankfully. But I was super low, the lowest I have been since I moved up here. I didn't even get a chance to prepare for my admission. I went to see her on Tuesday and I wanted to go visit my family for "Christmas" that weekend and I had to cancel. I talked her into letting me wait one night so I could get my things together etc. Yeah it was that bad. But I started to feel better in a week or so. Unfortunately I didn't bounce back like I thought I would. I was down to 27% and I only bounced up to 31%. Down from 34% in December. I go back April 28th and we will see if I jumped anymore now that the cold weather is gone.
Now for clinic update. I have been considering switching my CF clinic. Currently I am seen at the Children's hospital. Now while I love my doctor, I am not keen on the whole children's thing. Plus there is a disconnect between the clinic and inpatient. And there is a lot of pressure to do home cleanouts vs inpatient because of the cost of CF care inpatient to the hospital. So I met with the NP over at MGH today and I really liked it. I have to decide what to do soon. Like I said before, I have clinic on the 28th and I told the NP I would make a decision after that. My pro con list has been read and re-read hundreds of times. It is not a choice I can make lightly. But on the easier side, I can keep all my cancer care and transplant appointments at BWH for the foreseeable future. I asked both about switching CF centers and that has no bearing on either thankfully.
So there you have it. Six months of updates in a few paragraphs. I will be sure to update after my appointment. And on anything else that may arise in the meantime. I would like to get back to blogging so bear with me while I get in the habit again <3
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!
Tuesday, June 25, 2013
Hospital Time!!!
I was SO glad to see my numbers were horrible today!!! It confirmed what I KNEW and also made it so I didn't have to beg and plead for a round of IVs!
Last time I was 1.11L 38% this time my highest was .95L 33%. But my other 2 were .90L and .89L so that .95L was way up there!!! Since I have started using the correct predicted values on myself, I am really at 30% with my highest and 28% with the lowest. (The NHANES is the one used by most CF centers and I believe is the accepted one for the CFF). Anyhow, we are looking at Thursday afternoon/evening to go in...hopefully. The coordinator was out today so she will have to set it all up tomorrow. If I can't go in Thursday then it is Monday and that I will not be happy with. Thursday next week is the 4th of July and I don't want to miss the fireworks and parade!
Last time I was 1.11L 38% this time my highest was .95L 33%. But my other 2 were .90L and .89L so that .95L was way up there!!! Since I have started using the correct predicted values on myself, I am really at 30% with my highest and 28% with the lowest. (The NHANES is the one used by most CF centers and I believe is the accepted one for the CFF). Anyhow, we are looking at Thursday afternoon/evening to go in...hopefully. The coordinator was out today so she will have to set it all up tomorrow. If I can't go in Thursday then it is Monday and that I will not be happy with. Thursday next week is the 4th of July and I don't want to miss the fireworks and parade!
Friday, June 21, 2013
The Fevers That Just Won't Quit
Wow 9 days?!?! Sorry folks. Been hectic around here.
My lungs have not been cooperating with me at all. Nothing ER visit worthy but definitely looking forward to Tuesdays clinic visit. If she doesn't think I need to be admitted I will have a HISSY FIT and a half.
My O2 with exercise is absolute shit. Normally I walk at 3.5 with bursts at 3.8. Right now I am GASPING at 2.7. And my O2 is hovering at 90%. Heart rate has been as high as 171. Wednesday I started with fevers. Tonight again, its 101. Hasn't been that high since the flu of April. Hoping I am pushing myself too hard and my body is just tired and fighting something. If I hit 102, no worries I will haul my butt to the ER I promise. I finished my prednisone and Cipro on Tuesday. No difference, and really, I think I am slightly worse. Fevers say that at least.
Thursday I still did my personal training session, but we modified it a lot. Some days I do walking lunges and other exercises that require me to walk while holding weights. On a good day they make me SOB, so I requested we cut all walking exercises out. I tried one squatting exercise and made it through one set before I said no more on that one. I couldn't do it. She even commented that I was breathing MUCH heavier than normal. And I only completed about 2/3 of what I normally do. Still not too bad all things considering though. Of course, I watch other people with their trainers and I see the amount of things they do and it just exhausts me ha! They complete at least 1.5 if not 2 times the amount of exercises that I do. Granted I am functioning at less than 40% lung function so I need to pat myself on my back for that. And I am seeing results physically so that is excellent.
Thursday I also had my follow up with the GI docs. My MRI looked good, nothing concerning and no need to see the Pancreas surgeon yet. I am to schedule my colonoscopy, endoscopy, and endoscopic ultrasound for mid-November. Then schedule a follow up with her in December to go over the results. Once we get those tests again, we will have come full circle in a year and we can go from there. If everything looks good then we can just monitor the pesky cysts.
Anyway, I wanted to give a small update. I will be sure to post after Tuesday's appointment.
My lungs have not been cooperating with me at all. Nothing ER visit worthy but definitely looking forward to Tuesdays clinic visit. If she doesn't think I need to be admitted I will have a HISSY FIT and a half.
My O2 with exercise is absolute shit. Normally I walk at 3.5 with bursts at 3.8. Right now I am GASPING at 2.7. And my O2 is hovering at 90%. Heart rate has been as high as 171. Wednesday I started with fevers. Tonight again, its 101. Hasn't been that high since the flu of April. Hoping I am pushing myself too hard and my body is just tired and fighting something. If I hit 102, no worries I will haul my butt to the ER I promise. I finished my prednisone and Cipro on Tuesday. No difference, and really, I think I am slightly worse. Fevers say that at least.
Thursday I still did my personal training session, but we modified it a lot. Some days I do walking lunges and other exercises that require me to walk while holding weights. On a good day they make me SOB, so I requested we cut all walking exercises out. I tried one squatting exercise and made it through one set before I said no more on that one. I couldn't do it. She even commented that I was breathing MUCH heavier than normal. And I only completed about 2/3 of what I normally do. Still not too bad all things considering though. Of course, I watch other people with their trainers and I see the amount of things they do and it just exhausts me ha! They complete at least 1.5 if not 2 times the amount of exercises that I do. Granted I am functioning at less than 40% lung function so I need to pat myself on my back for that. And I am seeing results physically so that is excellent.
Thursday I also had my follow up with the GI docs. My MRI looked good, nothing concerning and no need to see the Pancreas surgeon yet. I am to schedule my colonoscopy, endoscopy, and endoscopic ultrasound for mid-November. Then schedule a follow up with her in December to go over the results. Once we get those tests again, we will have come full circle in a year and we can go from there. If everything looks good then we can just monitor the pesky cysts.
Anyway, I wanted to give a small update. I will be sure to post after Tuesday's appointment.
Sunday, April 28, 2013
Bitten by the Flu Bug!!!
Yup, it got me, a little late in the season but it got me. It started with Peter last weekend and I picked it up this weekend. My CF doctor told me to come to the ER if my fever spiked again and since it was 103 this morning, we decided to take a trip. Some fluids, a nose swab and a chest x-ray later and it was determined I have Flu B.
They are keeping me over night to monitor me and make sure my breathing doesn't get any worse. Its very hard to cough since it feels like I have glass shards in my chest, but hopefully the TamiFlu and fluids will help with that. Looking forward to being back to normal and getting my paper done this week. I finished one yesterday and printed it out so I am going to make use of my time in here and get the other one done as well as the assistantship stuff and practice for my presentation on Thursday. I have so much to do this week it really sucks the flu had to hit NOW!!!
I have an appointment with my CF doctor next Tuesday, the 7th, so we will see if this flu did anything to my numbers. I was expecting to be put on IV antibiotics next week, but who knows now. Right now I am just getting IV fluids, no antibiotics. But that could change tomorrow depending on what my culture comes back with.
I might as well update on everything while I am here right....Thursday I started working out with my personal trainer. LOVE IT! I was so sore on Friday but a good sore. I am looking forward to being in shape and toned up. I cannot wait. Thursday I also had transplant clinic and I got another clean bill of health and a "see you in 6 months" as I walked out the door. Love that too! I go back in 6 months and that will be right when I am finished with the PT so maybe my numbers will have improved some. She was excited for me when I told her I want to look into going back to work. She thought that was a great idea, as long as I figured all the SSDI and disability issues out. I've got a year to do it...I had seen them right before the honeymoon from hell so I was telling her all about that and she was so shocked my lungs crapped out as much as they did on the plane. She said they would have had to make an emergency landing had I not been wearing my O2 for sure. She said some people just respond totally different to flying than others....yeah ya think lol.
So that is all. Hopefully I am out of here tomorrow and back home curled up in my bed. It took me forever to get out of the house today because I didn't want to move. 103* fevers will do that to you...
They are keeping me over night to monitor me and make sure my breathing doesn't get any worse. Its very hard to cough since it feels like I have glass shards in my chest, but hopefully the TamiFlu and fluids will help with that. Looking forward to being back to normal and getting my paper done this week. I finished one yesterday and printed it out so I am going to make use of my time in here and get the other one done as well as the assistantship stuff and practice for my presentation on Thursday. I have so much to do this week it really sucks the flu had to hit NOW!!!
I have an appointment with my CF doctor next Tuesday, the 7th, so we will see if this flu did anything to my numbers. I was expecting to be put on IV antibiotics next week, but who knows now. Right now I am just getting IV fluids, no antibiotics. But that could change tomorrow depending on what my culture comes back with.
I might as well update on everything while I am here right....Thursday I started working out with my personal trainer. LOVE IT! I was so sore on Friday but a good sore. I am looking forward to being in shape and toned up. I cannot wait. Thursday I also had transplant clinic and I got another clean bill of health and a "see you in 6 months" as I walked out the door. Love that too! I go back in 6 months and that will be right when I am finished with the PT so maybe my numbers will have improved some. She was excited for me when I told her I want to look into going back to work. She thought that was a great idea, as long as I figured all the SSDI and disability issues out. I've got a year to do it...I had seen them right before the honeymoon from hell so I was telling her all about that and she was so shocked my lungs crapped out as much as they did on the plane. She said they would have had to make an emergency landing had I not been wearing my O2 for sure. She said some people just respond totally different to flying than others....yeah ya think lol.
So that is all. Hopefully I am out of here tomorrow and back home curled up in my bed. It took me forever to get out of the house today because I didn't want to move. 103* fevers will do that to you...
Thursday, January 3, 2013
Port-A-Cath
Well its done! I finally got my port! I think I shall name her Betty, after Betty White. After all, that broad is still kicking hard core at 90 something....or is it 80 something? Either way, meet Betty:
Betty and I are learning to get along. She is a bit sore right now, but so far she is loving her new home. I found out today Betty is a power port! So I can get contrast dye injected through her. She is a Dignity CT Implantable Port. I have a little card to carry around with me so Drs etc can know what she is.
I have been sleeping pretty much all day today so far. The meds are kicking my ass. Last night I was totally out of it for quite a while from the procedure. At first I thought the Versed was making me nauseous but turns out its more than likely the IV antibiotics I am on. So looks like I have 2 weeks of feeling cruddy ahead of me. Luckily tonight I am feeling more like myself. I was able to walk on the treadmill this afternoon for 23 minutes, then napped for 2 hours lol. Hoping that the dinner I ordered tastes better than the breakfast and lunch I had early. Both are things I normally eat but with the nausea I had no appetite. Right now I am starving so fingers crossed I eat it ALL! OK, dinner came as I was blogging and I ate all that I could. The potatoes tasted like ass so I skipped those but everything else is gone. I even ordered a sandwich for a late night snack lol.
Since the flu is running rampant in the hospital I will be out of here by Monday at the latest. I might even see about Sunday, if everything stays on course and I have no issues with Betty. And tomorrow I am getting the MRI of my pancreas done with lots of Ativan so I don't freak out. I kinda wanna be knocked out but we will see. If i freak out while in there they may have to ;)
I am also sad to say that my friend Kelly passed away on the 1st. I had no idea she was gone when I posted the blog yesterday. I am heart broken. Kel deserved SO MUCH more than she got. But don't we think that for everyone that passes. Her organs were able to be donated to others and her lungs are going to research. So in the end, Kel was able to help a few people out. That makes me smile to know she will live on as well.
Betty and I are learning to get along. She is a bit sore right now, but so far she is loving her new home. I found out today Betty is a power port! So I can get contrast dye injected through her. She is a Dignity CT Implantable Port. I have a little card to carry around with me so Drs etc can know what she is.
I have been sleeping pretty much all day today so far. The meds are kicking my ass. Last night I was totally out of it for quite a while from the procedure. At first I thought the Versed was making me nauseous but turns out its more than likely the IV antibiotics I am on. So looks like I have 2 weeks of feeling cruddy ahead of me. Luckily tonight I am feeling more like myself. I was able to walk on the treadmill this afternoon for 23 minutes, then napped for 2 hours lol. Hoping that the dinner I ordered tastes better than the breakfast and lunch I had early. Both are things I normally eat but with the nausea I had no appetite. Right now I am starving so fingers crossed I eat it ALL! OK, dinner came as I was blogging and I ate all that I could. The potatoes tasted like ass so I skipped those but everything else is gone. I even ordered a sandwich for a late night snack lol.
Since the flu is running rampant in the hospital I will be out of here by Monday at the latest. I might even see about Sunday, if everything stays on course and I have no issues with Betty. And tomorrow I am getting the MRI of my pancreas done with lots of Ativan so I don't freak out. I kinda wanna be knocked out but we will see. If i freak out while in there they may have to ;)
I am also sad to say that my friend Kelly passed away on the 1st. I had no idea she was gone when I posted the blog yesterday. I am heart broken. Kel deserved SO MUCH more than she got. But don't we think that for everyone that passes. Her organs were able to be donated to others and her lungs are going to research. So in the end, Kel was able to help a few people out. That makes me smile to know she will live on as well.
Tuesday, December 4, 2012
Avoided Hospital...For Now
Today was clinic again. Just to check and see if I responded to the Levofloxicin I was on for 14 days. And surprise! I didn't really. I went from 1.09L to 1.14L. So yes I did go UP but not much.
Dr D gave me sole say in hospitalizing me now or waiting until after the new year. I opted for January 2nd. I missed way too much school with the honeymoon and wedding to miss the last couple classes. Plus we need to schedule the port placement, and if that can't be done immediately then we are looking at me being on IVs at Christmas and then not being able to go to PA to visit my family after. So it is much easier to wait a month. If something were to happen and I needed to go in now, I would call her. But for now I am IV free for a little less than a month!!
Dr D gave me sole say in hospitalizing me now or waiting until after the new year. I opted for January 2nd. I missed way too much school with the honeymoon and wedding to miss the last couple classes. Plus we need to schedule the port placement, and if that can't be done immediately then we are looking at me being on IVs at Christmas and then not being able to go to PA to visit my family after. So it is much easier to wait a month. If something were to happen and I needed to go in now, I would call her. But for now I am IV free for a little less than a month!!
Friday, September 21, 2012
Insert funny title here
I haven't had a chance to update since I was discharged from the hospital. It has been one thing after another. So glad I am busy but I need some rest ha!
I got out on Monday night but didn't get to see the home nurse until Thursday morning. My kidney's were not processing the Tobra well enough so we had to switch from dosing every 24 hours to every 36 hours. Seems that has worked. But because of this, I had to wait to have the nurse come out right before the dose to draw my trough level. Hence the Thursday morning visit.
I spoke with the docs again about the port placement. They said my next admission we will schedule it for the morning of it so that I can come in that morning, get it placed and get put in a room and start the clean out then.
Other than that I feel OK. I had to stop volunteering though, and I am bummed about that. Thursday was my normal day and I didn't think I was going to make it through. I was dragging next to the ponies and they are slow to begin with! I told the coordinator that if I feel better in a few months I would love to come back. Right now with school, the wedding and the assistantship I am pressed for time and those 4 hours were wearing me down more than they should have been. I am going to miss the ponies and my volunteer buddies :(
This coming Wednesday I have a clinic appointment so we will see just where I am health wise. I should be back to base by now I would think. I was going to do 20 days of IVs but I kinda want to be done on Wednesday. Guess that will all depend on my numbers!
I got out on Monday night but didn't get to see the home nurse until Thursday morning. My kidney's were not processing the Tobra well enough so we had to switch from dosing every 24 hours to every 36 hours. Seems that has worked. But because of this, I had to wait to have the nurse come out right before the dose to draw my trough level. Hence the Thursday morning visit.
I spoke with the docs again about the port placement. They said my next admission we will schedule it for the morning of it so that I can come in that morning, get it placed and get put in a room and start the clean out then.
Other than that I feel OK. I had to stop volunteering though, and I am bummed about that. Thursday was my normal day and I didn't think I was going to make it through. I was dragging next to the ponies and they are slow to begin with! I told the coordinator that if I feel better in a few months I would love to come back. Right now with school, the wedding and the assistantship I am pressed for time and those 4 hours were wearing me down more than they should have been. I am going to miss the ponies and my volunteer buddies :(
This coming Wednesday I have a clinic appointment so we will see just where I am health wise. I should be back to base by now I would think. I was going to do 20 days of IVs but I kinda want to be done on Wednesday. Guess that will all depend on my numbers!
Thursday, September 13, 2012
Admission day 1...or is it now 2?
I was finally let into my room around 10pm last night! The guy who was in here before me had to wait for his ride. First he was leaving at 4, then 6 then 8 and finally at 8:45 he was picked up. It was nice to be able to eat at home and be totally packed but it still sucked. I had P drop me off at 8pm because he has work today and E was home waiting for Nana to get there.
I spent 2 hours in the waiting area of admitting but they were very accommodating. More than once I was asked if I was hungry and if I wanted some meal tickets. I was not so I declined them. But it was nice not feeling totally forgotten and left in the dark!
When I was finally in and all settled they placed my IV. It went in well but the nurse commented it was difficult. Then later on (read 1:30am) they came to draw some labs and that took almost 20 minutes to get all they needed. The first 2 vials went smooth and after that they dripped in. My left arm is not what it used to be.
Fast forward to today and my PICC placement. The Ativan and Benadryl just aren't cutting it anymore. I am still 100% fully aware. It took the PICC nurse 3 tries to place it. She could get it in but it would not thread. The third time she said "oh finally!" I commented that I want a port but my doc won't let me and she replied "if I see him in the food store I will run him over with a shopping cart"! HAHA! She told me I need a port that my veins are too scarred for anymore PICCs. I agree with her wholeheartedly. I asked her to write that in my chart so its documented.
A few minutes later the team visited and when they asked about the PICC I recounted what happened and pleaded for a port. And would you believe it they agree with me!!! They told me they will take care of Dr. D and her hesitancy to give me. So looks like after this admission, and the wedding I will be getting my first port. I am super nervous, but super excited to never have PICCs again. OK I know I will probably still get PICCs at some point but at least it won't be 3-4 times a year.
Everything is going as normal. I am getting Zoysn and Tobra again, and right now, as I type, I am getting some Magnesium pumped into me. Apparently my numbers were slightly lower than they would like. 1.7 is the lowest and I am there, but they would like to see 2.0. Okie Dokie.
That is about all there is right now. I am sure my stay will be as uneventful as it usually is lol.
I spent 2 hours in the waiting area of admitting but they were very accommodating. More than once I was asked if I was hungry and if I wanted some meal tickets. I was not so I declined them. But it was nice not feeling totally forgotten and left in the dark!
When I was finally in and all settled they placed my IV. It went in well but the nurse commented it was difficult. Then later on (read 1:30am) they came to draw some labs and that took almost 20 minutes to get all they needed. The first 2 vials went smooth and after that they dripped in. My left arm is not what it used to be.
Fast forward to today and my PICC placement. The Ativan and Benadryl just aren't cutting it anymore. I am still 100% fully aware. It took the PICC nurse 3 tries to place it. She could get it in but it would not thread. The third time she said "oh finally!" I commented that I want a port but my doc won't let me and she replied "if I see him in the food store I will run him over with a shopping cart"! HAHA! She told me I need a port that my veins are too scarred for anymore PICCs. I agree with her wholeheartedly. I asked her to write that in my chart so its documented.
A few minutes later the team visited and when they asked about the PICC I recounted what happened and pleaded for a port. And would you believe it they agree with me!!! They told me they will take care of Dr. D and her hesitancy to give me. So looks like after this admission, and the wedding I will be getting my first port. I am super nervous, but super excited to never have PICCs again. OK I know I will probably still get PICCs at some point but at least it won't be 3-4 times a year.
Everything is going as normal. I am getting Zoysn and Tobra again, and right now, as I type, I am getting some Magnesium pumped into me. Apparently my numbers were slightly lower than they would like. 1.7 is the lowest and I am there, but they would like to see 2.0. Okie Dokie.
That is about all there is right now. I am sure my stay will be as uneventful as it usually is lol.
Saturday, May 12, 2012
Home Again
I got home around 8:30 last night. The hospital stay was pretty uneventful.
I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them pulling it out haha! At least I know I won't die or have a heart attack from it now. The thing I don't like is now it sits out really far from the insertion site. That makes me nervous with cleaning it and all. I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.
Health wise I feel the same. My cough is less but as far as the lungs go....still hurt....still SOB....still tight. IVs don't combat that though. Last night I had a coughing fit and I turned the same color as my bright red tank top. P said "hmmm you sound great babe, sure you were in the hospital?" Pretty much sums it up. It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks. Also, they have me on a different IV this time. Usually I am on Tobra and Ceftaz. This time it is Tobra and Zoysn. I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!
Also while I was in I had an overnight O2 study done. Wait what? Didn't I just have one like 2 weeks ago? Yes that is right. I DID have one done. But guess who has NO record whatsoever of having it done? Apria. Yeah bastards. Not too big of a deal getting it redone but still. How can you have NO RECORD of it AT ALL? Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night. Its a smaller concentrator than I had last time and now I have funky green tubing! No tripping over it in the middle of the night now! I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again. Running, jogging, and inclines make my O2 plummet.
Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back. The lower back, right around where the back indents just slightly about the butt, it hurts. And I mean HURTS. I didn't even have this much pain with my hysterectomy! I could hardly move Thursday and Friday. Tylenol does diddly for me. I took 4 Motrin when I got home last night and I felt much better. But I woke up around 7am (to do my IV) and again could barely move. So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own. And hopefully that is soon!
That is my update for now. I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all. AND I am done school for the semester! Classes start again the 21st, but I have 2 weeks of blissfully nothing to do! YAY!
I had the PICC placed on Tuesday, and Wednesday they had to pull it out 4cm. Apparently the home health company has a requirement and though the PICC team was OK with the placement, the home health would not see me unless it was pulled out a bit. I was honestly expecting way more than what it was with the pull out. I never had them do it before. She basically did a dressing change and just pulled it out some. How ironic that THAT is my biggest fear with dressing changes. Them pulling it out haha! At least I know I won't die or have a heart attack from it now. The thing I don't like is now it sits out really far from the insertion site. That makes me nervous with cleaning it and all. I might have to ask if they can tape it, just for my own sanity, when they change the stat-lock.
Health wise I feel the same. My cough is less but as far as the lungs go....still hurt....still SOB....still tight. IVs don't combat that though. Last night I had a coughing fit and I turned the same color as my bright red tank top. P said "hmmm you sound great babe, sure you were in the hospital?" Pretty much sums it up. It's only been 5 days of IVs though so I am expecting me to feel much better by the end of the 3 weeks. Also, they have me on a different IV this time. Usually I am on Tobra and Ceftaz. This time it is Tobra and Zoysn. I haven't had any real side effects from the Zoysn except alternating liquid poo with no poo!
Also while I was in I had an overnight O2 study done. Wait what? Didn't I just have one like 2 weeks ago? Yes that is right. I DID have one done. But guess who has NO record whatsoever of having it done? Apria. Yeah bastards. Not too big of a deal getting it redone but still. How can you have NO RECORD of it AT ALL? Anyway, I de-satted below 88% a bunch of times so I had O2 delivered last night. Its a smaller concentrator than I had last time and now I have funky green tubing! No tripping over it in the middle of the night now! I am back to using 1L with sleep and still none with exercise unless I decide to start the couch to 5k plan again. Running, jogging, and inclines make my O2 plummet.
Sometime overnight while having the sleep study done, I must have slept wrong and pulled a muscle in my back. The lower back, right around where the back indents just slightly about the butt, it hurts. And I mean HURTS. I didn't even have this much pain with my hysterectomy! I could hardly move Thursday and Friday. Tylenol does diddly for me. I took 4 Motrin when I got home last night and I felt much better. But I woke up around 7am (to do my IV) and again could barely move. So I think I might be taking Motrin 3-4 times a day to keep this pain away until it works out on its own. And hopefully that is soon!
That is my update for now. I have a clinic appointment this upcoming Wednesday to see if the IVs have started to work at all. AND I am done school for the semester! Classes start again the 21st, but I have 2 weeks of blissfully nothing to do! YAY!
Friday, May 4, 2012
Hospital Shopping
I haven't been out shopping for new things for hospital stays in a long time. So after I dropped my step daughter off at the train station I drove myself to Target.
I needed some new tank tops and some under garments. Luckily all were on sale. I also hit up the clearance rack and got a couple of cute, non hospital shirts. I don't know about you all but I hate wearing small under wear when locked up. I feel like I get so many more wedgies lol. So I got myself some new boy shorts and a comfy bandeau bra that I can sleep in. Right now I have been wearing a bandeau bathing suit top as my bra daily. Sad I know....but straps on the bras and the under wire just constrict me too much.
And the other must get necessity was head bands. I usually pull my hair back but it gets greasy fast and looks gross. So I got a couple of head bands to hide the grease on the days I can't/don't want to shower.
Now just have to make it through the weekend and its off to club med for 5 or so days!!!
I needed some new tank tops and some under garments. Luckily all were on sale. I also hit up the clearance rack and got a couple of cute, non hospital shirts. I don't know about you all but I hate wearing small under wear when locked up. I feel like I get so many more wedgies lol. So I got myself some new boy shorts and a comfy bandeau bra that I can sleep in. Right now I have been wearing a bandeau bathing suit top as my bra daily. Sad I know....but straps on the bras and the under wire just constrict me too much.
And the other must get necessity was head bands. I usually pull my hair back but it gets greasy fast and looks gross. So I got a couple of head bands to hide the grease on the days I can't/don't want to shower.
Now just have to make it through the weekend and its off to club med for 5 or so days!!!
Tuesday, May 1, 2012
Clinic Results
Clinic was pretty much what I was expecting.
I went from 1.08L to .95L (37%-32%). So it is definitely an admission for me. Luckily we are waiting till Monday so I can be home this weekend in case P gets a call. But if my O2 sats dip low or I feel worse I need to just go right to the ER and be admitted that way. I don't foresee any issues though.
I am actually worse now than I was back in January of 2011 right after the Colistin incident. And those numbers were before my Albuterol treatments! And the first one I did I stopped within a few seconds because it triggered a coughing spell. Never had that happen before. My airways are definitely not happy campers right now!
My weight is still high for me but it is still in range of where I have been before (56.7kg or 124.7lbs). So I am not worried a whole bunch about that anymore.
I do need to call and reschedule my transplant clinic appointment. I have been putting it off but I need to get back on track with that. And also getting all the info sent to Lahey Clinic again so I can restart the pulmonary rehab program. I am really hoping that because I am working out 4 days a week on my own they will let the rehab slide....but I doubt it.
My O2 study results had not been sent to her yet as of today either. So I am hoping by Monday they will be in. I kinda sorta do want my O2 back, but at the same time, its been cheaper not running that thing every night!
I went from 1.08L to .95L (37%-32%). So it is definitely an admission for me. Luckily we are waiting till Monday so I can be home this weekend in case P gets a call. But if my O2 sats dip low or I feel worse I need to just go right to the ER and be admitted that way. I don't foresee any issues though.
I am actually worse now than I was back in January of 2011 right after the Colistin incident. And those numbers were before my Albuterol treatments! And the first one I did I stopped within a few seconds because it triggered a coughing spell. Never had that happen before. My airways are definitely not happy campers right now!
My weight is still high for me but it is still in range of where I have been before (56.7kg or 124.7lbs). So I am not worried a whole bunch about that anymore.
I do need to call and reschedule my transplant clinic appointment. I have been putting it off but I need to get back on track with that. And also getting all the info sent to Lahey Clinic again so I can restart the pulmonary rehab program. I am really hoping that because I am working out 4 days a week on my own they will let the rehab slide....but I doubt it.
My O2 study results had not been sent to her yet as of today either. So I am hoping by Monday they will be in. I kinda sorta do want my O2 back, but at the same time, its been cheaper not running that thing every night!
Friday, January 13, 2012
Hospital Update
This hospital admission is turning out to be quite eventful, though short. I came in Thursday morning for my endoscopic ultrasound - cysts on my pancreas look normal and just need to be monitored by MRI every 6 months - and was admitted afterwards. I got to hang out in endoscopy all day until 4pm when my room was finally ready.
I got my PICC placed today, luckily that was uneventful! I got my nice dose of Benadryl prior and was nice and high for it. Worked for me! I would rather not be totally with it when I get it done.
Unfortunately my heart rate has been really high all day today and my blood pressure really low. I have been drinking water and got 500cc of saline to try to help but its not doing much. I got an EKG done to check my heart and it showed tachycardia....nothing new. Resting my heart rate has been in the 120s and when exercising with PT it went up to 168. I am usually around 100-110 resting. This is new since I was not having this issue on Wednesday before I came in. Hopefully it is just from the Benadryl and "excitement" of the PICC placement.
The results of my OGTT I had done on Monday came back positive for CFRD (Cystic Fibrosis Related Diabetes). My A1C was 6.3 (not too bad) and my 2 hours post sugar level was 215. Anything over 200 is considered positive. So I am right there over the line. I can get started on regulating my insulin and maybe I won't be so ridiculously tired anymore! I am not surprised by this result in the least. I knew it was gonna happen at some point and I am glad to get it over with prior to transplant. I don't want to have to learn 2 new major life changes at once!
It is looking like I will be getting out on Sunday which is great. Since I am not really sick and just getting IVs started so I can make it through the semester, there is no real reason for me to stay. Unless of course I feel shitty all day tomorrow and Sunday. But as long as my HR goes down to normal and these low grade fevers stop I should be good to go!
I got my PICC placed today, luckily that was uneventful! I got my nice dose of Benadryl prior and was nice and high for it. Worked for me! I would rather not be totally with it when I get it done.
Unfortunately my heart rate has been really high all day today and my blood pressure really low. I have been drinking water and got 500cc of saline to try to help but its not doing much. I got an EKG done to check my heart and it showed tachycardia....nothing new. Resting my heart rate has been in the 120s and when exercising with PT it went up to 168. I am usually around 100-110 resting. This is new since I was not having this issue on Wednesday before I came in. Hopefully it is just from the Benadryl and "excitement" of the PICC placement.
The results of my OGTT I had done on Monday came back positive for CFRD (Cystic Fibrosis Related Diabetes). My A1C was 6.3 (not too bad) and my 2 hours post sugar level was 215. Anything over 200 is considered positive. So I am right there over the line. I can get started on regulating my insulin and maybe I won't be so ridiculously tired anymore! I am not surprised by this result in the least. I knew it was gonna happen at some point and I am glad to get it over with prior to transplant. I don't want to have to learn 2 new major life changes at once!
It is looking like I will be getting out on Sunday which is great. Since I am not really sick and just getting IVs started so I can make it through the semester, there is no real reason for me to stay. Unless of course I feel shitty all day tomorrow and Sunday. But as long as my HR goes down to normal and these low grade fevers stop I should be good to go!
Wednesday, September 28, 2011
Monday, September 26, 2011
You Know you Need a Transplant when...
The x-ray tech says "wow you are sick aren't you?"
Then he proceeds to show you your scans and explain things. I was thrilled! I haven't seen my lungs in years! Holy whiteness! A bunch of spiderwebs all over and a big pocket of air in my tummy. He said I probably need a good burp (or a fart ha!). He was also very excited that I am here for the evaluation work up. He told me best of luck and he hopes I get many years out of this (you and me both!!!).
I had my right heart catherization this morning. I was expecting to be sedated at least slightly, but I got nothing. Only some meds to calm my lungs down so I didn't cough. In all honesty the procedure is not that bad, in hindsight of course. They numb your neck, drape it and put your legs up. You feel pressure, much like a picc insertion and I could hear the threading of the monitor. As soon as they stuck me to start, the water works started. I felt no pain but emotionally I must have been holding it in. Its the first time I have really cried since being told about the evaluation. I remember them calling out numbers and then I would have to breathe in, exhale and pause. So I can see why you can't be sedated at all, now. If they had told me that from the get go I would not have been so "ahhh" about it all.
That is the only test I had done today (besides chest x-ray and sinus ct scan), but tomorrow I will get everything else out of the way. I have started my IV meds already and hopefully will be home by Friday so I can get back to my fiance!
Then he proceeds to show you your scans and explain things. I was thrilled! I haven't seen my lungs in years! Holy whiteness! A bunch of spiderwebs all over and a big pocket of air in my tummy. He said I probably need a good burp (or a fart ha!). He was also very excited that I am here for the evaluation work up. He told me best of luck and he hopes I get many years out of this (you and me both!!!).
I had my right heart catherization this morning. I was expecting to be sedated at least slightly, but I got nothing. Only some meds to calm my lungs down so I didn't cough. In all honesty the procedure is not that bad, in hindsight of course. They numb your neck, drape it and put your legs up. You feel pressure, much like a picc insertion and I could hear the threading of the monitor. As soon as they stuck me to start, the water works started. I felt no pain but emotionally I must have been holding it in. Its the first time I have really cried since being told about the evaluation. I remember them calling out numbers and then I would have to breathe in, exhale and pause. So I can see why you can't be sedated at all, now. If they had told me that from the get go I would not have been so "ahhh" about it all.
That is the only test I had done today (besides chest x-ray and sinus ct scan), but tomorrow I will get everything else out of the way. I have started my IV meds already and hopefully will be home by Friday so I can get back to my fiance!
Thursday, September 15, 2011
Doubling up my Transplant Stay
Wednesday I had my follow up clinic appointment to see how the Levaquin worked on me. I went in all excited because I felt great! My SOB was down slightly, I knew I had gained a pound or two, I had a bit more energy. So I was expecting to see 40% at least! Imagine my surprise when my first blow was 34%, 1.01L!!! I was floored! My second attempt was 33% .98L. I was able to get 1.05L 36% on my 3rd try so I was just below where I was the visit before.
We decided to couple my transplant evaluation on the 26th-27th with the beginning of a clean out. So I will stay a few extra days to start the IVs then come home on them. I was already going to miss my 3rd grad class so I am not too put out by this. And when I show up with IVs in my arm, she won't be able to get mad ;)
So that is about it here. Nothing to really report. I do plan on doing a video from the hospital about the transplant tests and the stay so stay tuned in 2 weeks for some new YouTube postings.
We decided to couple my transplant evaluation on the 26th-27th with the beginning of a clean out. So I will stay a few extra days to start the IVs then come home on them. I was already going to miss my 3rd grad class so I am not too put out by this. And when I show up with IVs in my arm, she won't be able to get mad ;)
So that is about it here. Nothing to really report. I do plan on doing a video from the hospital about the transplant tests and the stay so stay tuned in 2 weeks for some new YouTube postings.
Saturday, May 14, 2011
Hospital Stay
This will be a long post so settle in a comfy seat, put your feet up and be prepared to read...
I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday. My biggest worry was the picc placement given the reaction my body had last time to it. Turned out to be the least of my worries...
Thursday night they wanted to get an O2 reading done on me again. I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep. Of course my lungs were in great shape so I didn't need it. Thankfully they did another. However, it was different than the first one I had. They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers. Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it. Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up. Finally she came in and put the O2 on me since it kept beeping. Slept like a rock the rest of the night!
Friday morning bright and early I was wheeled down to have my scan done. I didn't have my morning meds yet so inhaling and holding my breath was not happening. Of course they ask to do so and I try but I failed. Such is the CF life. By the time I got back to my room the picc nurse was ready to poke me. Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious. It worked. I was pretty much dead to the world for the rest of the day!
PT came to my room to do a 6 minute walk test on me. I did well considering I am in the throws of an exacerbation. I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking. We were going to attempt no O2 but my sats just standing there were 89%. The Benadryl really messed my lungs up that day.
Saturday was to be the start of my colonoscopy prep. Just clear liquids all day which meant jello and chicken broth. Yum! Sunday I started the clean out part. By the time I went to bed that night I was pretty sure I was ready for the next day. My CF gut had other plans however.
I was able to do the upper but not the lower. I was too full to get any ideas of what was going on in there. When she told me this I got upset. I was frustrated, annoyed, angry and depressed. I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge. When I met Dr BE in my room later I was crying. The nurses were great and really tried to cheer me up. Poor Dr BE. Last time I was in I was crying with him and again this time. The guy must think I am a mess! I could see the sympathy in his eyes and it made me feel better. So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out. But what was the question.
At first Golytely was the choice. But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again. I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way. That didn't happen. We tried the placement and I think I had an anxiety attack during. I could feel it scraping my chest and then I was gasping for air. A cyster had told me getting the tube through the sinuses was painful. Ironically I barely felt that part. They pulled it and we decided to give the Mag Citrate a go. It was not as bad as I had remembered it from when I was 18. I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.
Colonoscopy take 2 was a success. I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy. So lets review this. Friday night I took 2 ducolax to start the process. Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday. Saturday was just clears. Sunday the same thing, but I took 15 one dose packets of Mira-lax. Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out). All in all I did more than 2 full clean out regimens and was still not clear. WTF?!?!?!? Talk about a slooooow system! I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results. Last time I had a few benign polyps and one that was pre-cancerous. Hopefully these are all benign.
Today I got the results of my CT scan. Well I should say today I was lucid and sane enough to hear the results. It was quite the informative scan I received! My lungs show obvious signs of CF. There was a pocket of infection which of course, was why I was there in the first place. It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH! not far off either). My thyroid is working properly though. They ordered blood work to be sure there were no issues there. They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history. So in 3 months I will get another CT scan done. And finally they saw an air pocket below my heart that is undamaged but inaccessible. It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off. So basically the lower lobe of my lung is shut off, yet unharmed. It could explain the low lung functions even as a child. That was it for the CT scan. I told you it was informative!
My culture showed that the Steno Malt is still there. Seems to me it hides when I am "healthy" then rears its head when it feels like it. I have a feeling this is what is going to send me to transplant land much sooner than I had thought. Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.
Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit. Now every time I see the team it is mentioned. So I guess it really is something they feel I need to pursue now to be safe. I've wrapped my head around the idea even if I am still unsure why me. Though I know the answer, I just wonder why me sometimes. And not in the "woe is me" way. But more along the lines of "but I'm not THAT sick, am I?" way.
Thank you for reading this jumbled mess of a blog post. I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...
(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)
I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday. My biggest worry was the picc placement given the reaction my body had last time to it. Turned out to be the least of my worries...
Thursday night they wanted to get an O2 reading done on me again. I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep. Of course my lungs were in great shape so I didn't need it. Thankfully they did another. However, it was different than the first one I had. They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers. Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it. Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up. Finally she came in and put the O2 on me since it kept beeping. Slept like a rock the rest of the night!
Friday morning bright and early I was wheeled down to have my scan done. I didn't have my morning meds yet so inhaling and holding my breath was not happening. Of course they ask to do so and I try but I failed. Such is the CF life. By the time I got back to my room the picc nurse was ready to poke me. Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious. It worked. I was pretty much dead to the world for the rest of the day!
PT came to my room to do a 6 minute walk test on me. I did well considering I am in the throws of an exacerbation. I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking. We were going to attempt no O2 but my sats just standing there were 89%. The Benadryl really messed my lungs up that day.
Saturday was to be the start of my colonoscopy prep. Just clear liquids all day which meant jello and chicken broth. Yum! Sunday I started the clean out part. By the time I went to bed that night I was pretty sure I was ready for the next day. My CF gut had other plans however.
I was able to do the upper but not the lower. I was too full to get any ideas of what was going on in there. When she told me this I got upset. I was frustrated, annoyed, angry and depressed. I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge. When I met Dr BE in my room later I was crying. The nurses were great and really tried to cheer me up. Poor Dr BE. Last time I was in I was crying with him and again this time. The guy must think I am a mess! I could see the sympathy in his eyes and it made me feel better. So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out. But what was the question.
At first Golytely was the choice. But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again. I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way. That didn't happen. We tried the placement and I think I had an anxiety attack during. I could feel it scraping my chest and then I was gasping for air. A cyster had told me getting the tube through the sinuses was painful. Ironically I barely felt that part. They pulled it and we decided to give the Mag Citrate a go. It was not as bad as I had remembered it from when I was 18. I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.
Colonoscopy take 2 was a success. I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy. So lets review this. Friday night I took 2 ducolax to start the process. Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday. Saturday was just clears. Sunday the same thing, but I took 15 one dose packets of Mira-lax. Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out). All in all I did more than 2 full clean out regimens and was still not clear. WTF?!?!?!? Talk about a slooooow system! I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results. Last time I had a few benign polyps and one that was pre-cancerous. Hopefully these are all benign.
Today I got the results of my CT scan. Well I should say today I was lucid and sane enough to hear the results. It was quite the informative scan I received! My lungs show obvious signs of CF. There was a pocket of infection which of course, was why I was there in the first place. It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH! not far off either). My thyroid is working properly though. They ordered blood work to be sure there were no issues there. They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history. So in 3 months I will get another CT scan done. And finally they saw an air pocket below my heart that is undamaged but inaccessible. It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off. So basically the lower lobe of my lung is shut off, yet unharmed. It could explain the low lung functions even as a child. That was it for the CT scan. I told you it was informative!
My culture showed that the Steno Malt is still there. Seems to me it hides when I am "healthy" then rears its head when it feels like it. I have a feeling this is what is going to send me to transplant land much sooner than I had thought. Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.
Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit. Now every time I see the team it is mentioned. So I guess it really is something they feel I need to pursue now to be safe. I've wrapped my head around the idea even if I am still unsure why me. Though I know the answer, I just wonder why me sometimes. And not in the "woe is me" way. But more along the lines of "but I'm not THAT sick, am I?" way.
Thank you for reading this jumbled mess of a blog post. I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...
(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)
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