I had my 3 month clinic appointment yesterday. I can't believe I survived 3 months without a call in there somewhere.
All my numbers are the same. I was 1.09L on October 1st and yesterday I was 1.08L. 37% and holding. I will take it. My weight was down another 1.5lbs but I am OK with that. I am still 116 and that isn't a bad weight to be. I'll worry if I hit 110 or lower.
I got the all clear to star full dose Orkambi in Tuesday. I go away this weekend so I am waiting till I get back to start. I should be fine but hey you never know.
Still no need to start insulin. I had a few weeks where I was running high, even my fasting numbers, but then other weeks where my fasting was normal. One day they were 66 when I got up! Kinda low! So long acting is out. And my over 200s are not consistent enough to need insulin before meals. So its keep monitoring and see how they are in 3 months again. Easy enough.
That is all. Boring life here lol. But at least there are no crazy health issues in my life right now.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Friday, January 15, 2016
Monday, August 24, 2015
Hospital Time!
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.
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.
Monday, August 3, 2015
Game Changer
I have discussed this before, but now that reality is happening. Orkambi has been approved and is available to those with DDF508 mutations. ME.
Vertex' drug has been approved and my life could change. Dramatically or barely noticeably.
So as I sit here thinking about what could happen I find myself floating in a sea of endless emotions. I am excited I may be able to go back to work. Excited I may be able to earn money again, and not just collect SSDI. I may get the chance to grow old with my husband. To see my niece and nephews graduate and get married and have babies of their own. To watch my own step kids do these things. I may get to experience all the things that old people experience. The good and the bad.
So why am I feeling this barrage of emotions? And why are there some not so happy ones mixed in there?
Because I have lived almost 35 years with this disease. I have come to know my body, my progression, my health. I know when I am a little out of sorts or a lot. I know what to expect of it, most of the time. I am pretty vanilla.
I have also lived my whole life expecting to die at any point. That my life has a early expiration date that is gaining momentum as I age. I have put aside thoughts of ever having to bury family members and never having to bury a husband. Never seeing anyone get old and never having to worry about it for myself.
But this medication could change all that. I don't know what to expect. I do know to expect the unexpected. I know I have to think about retirement, real retirement. I have to think about old people diseases and aging. I have to think about watching my parents age. All these scary things that most people don't even consider because they are a part of a long life. But I never thought about a long life. Hell I thought I would be dead by 26 but here I am almost 35 and alive and kicking.
So what do I do now? The answer is complicated. I know I have to sit back and relax and see if I even get any help from Orkambi when I can get it. And then I can start to think about the rest. About growing old....with my husband.
Maybe I will be able to sit on the porch on rocking chairs and watch our grand-kids play in the yard...maybe, just maybe....
Vertex' drug has been approved and my life could change. Dramatically or barely noticeably.
So as I sit here thinking about what could happen I find myself floating in a sea of endless emotions. I am excited I may be able to go back to work. Excited I may be able to earn money again, and not just collect SSDI. I may get the chance to grow old with my husband. To see my niece and nephews graduate and get married and have babies of their own. To watch my own step kids do these things. I may get to experience all the things that old people experience. The good and the bad.
So why am I feeling this barrage of emotions? And why are there some not so happy ones mixed in there?
Because I have lived almost 35 years with this disease. I have come to know my body, my progression, my health. I know when I am a little out of sorts or a lot. I know what to expect of it, most of the time. I am pretty vanilla.
I have also lived my whole life expecting to die at any point. That my life has a early expiration date that is gaining momentum as I age. I have put aside thoughts of ever having to bury family members and never having to bury a husband. Never seeing anyone get old and never having to worry about it for myself.
But this medication could change all that. I don't know what to expect. I do know to expect the unexpected. I know I have to think about retirement, real retirement. I have to think about old people diseases and aging. I have to think about watching my parents age. All these scary things that most people don't even consider because they are a part of a long life. But I never thought about a long life. Hell I thought I would be dead by 26 but here I am almost 35 and alive and kicking.
So what do I do now? The answer is complicated. I know I have to sit back and relax and see if I even get any help from Orkambi when I can get it. And then I can start to think about the rest. About growing old....with my husband.
Maybe I will be able to sit on the porch on rocking chairs and watch our grand-kids play in the yard...maybe, just maybe....
Tuesday, July 28, 2015
One Year Post- Whipple
Today marks my one year since having the whipple done on my pancreas.
Last night I re-read all my previous blog posts prior to surgery. I re-read how scared I was of not bouncing back. How worried I was that it was cancer. How necessary the surgery was if I were to ever have a transplant. I re-lived all those emotions last night. It was quite the roller coaster even on this side of the ending.
Not much has changed in a year, besides my weight and the long scar I now have on my torso. I am at my ideal weight (Mine not anyone else's) at 116 lbs. But I had put on quite a few pounds before surgery to be sure I wouldn't fall too low. I was 132 lbs going into the operating room. Way more than I ever wanted to be or want to be again.
My health is doing great. I still do not require insulin although my OGTT I had done recently still put me in the abnormal range. So I am monitoring sugars for my appointment in October. But I am not diabetic like we thought might happen.
I did not have any serious complications after surgery which to me is a miracle in itself! The stats for complications were ridiculous! Besides some lingering nausea into the new year, I was complication and side effect free. I have my appetite back and I can eat large meals again, which only took about 9 months to sort out. My bowels have returned to normal too.
It is almost like surgery didn't happen.
Here are some photos to prove that it in fact did happen:
Last night I re-read all my previous blog posts prior to surgery. I re-read how scared I was of not bouncing back. How worried I was that it was cancer. How necessary the surgery was if I were to ever have a transplant. I re-lived all those emotions last night. It was quite the roller coaster even on this side of the ending.
Not much has changed in a year, besides my weight and the long scar I now have on my torso. I am at my ideal weight (Mine not anyone else's) at 116 lbs. But I had put on quite a few pounds before surgery to be sure I wouldn't fall too low. I was 132 lbs going into the operating room. Way more than I ever wanted to be or want to be again.
My health is doing great. I still do not require insulin although my OGTT I had done recently still put me in the abnormal range. So I am monitoring sugars for my appointment in October. But I am not diabetic like we thought might happen.
I did not have any serious complications after surgery which to me is a miracle in itself! The stats for complications were ridiculous! Besides some lingering nausea into the new year, I was complication and side effect free. I have my appetite back and I can eat large meals again, which only took about 9 months to sort out. My bowels have returned to normal too.
It is almost like surgery didn't happen.
Here are some photos to prove that it in fact did happen:
Getting changed into my gowns.
Putting the IV in. I can't look when it is inserted or I pass out!
after the epidural. Those things are awful but man do they take the pain away after!
post surgery when I was still out cold. You can see my collection tubes on the left with liquid in them. They were more annoying than anything. I had to carry them every time I got up after I was mobile. And they were sore. And pulling them so I could go home was HORRIBLE. I almost broke my mom's hand when they pulled them. Fuckers were like 4 feet long (I have no idea how long they actually were but let me tell you they felt like they were a mile long)!
1 week after surgery. Scar looks pretty good here! I was still bloated from everything. You can see the vampire bite on the side of my abdomen. That is where the two tubes were.
You can really see the difference in my face with the weight I lost. This was 11 days post surgery. I had a really good day and felt great this day! I remember it well. It was a rare feeling those first few weeks.
This is my 6 weeks comparison photo I posted on Facebook.
And this is me today. My scar looks awesome. I am not embarrassed by it at all. In fact I love showing it off. Its something to be proud of. I can say I survived the whipple. Not that I wear skimpy clothes but I have a bikini I bought that I love to wear!!!
Some previous Whipple posts:
Tuesday, June 2, 2015
First Appointment at MGH
Today was a very long day. But it was worth it. I really like the clinic at MGH and I am going to stay there.
I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30. It has been raining for 3 days and I knew traffic would be a mess. It was. PFTs went well, I have not changed since April which is good. They did a post as well and I shot up 3% from 37% to 40%. It doesn't seem like much but it is a 9% increase which is huge! I got a little panicky in the booth when they blocked the air for the test. But I only had to stop once. The woman was very nice and didn't get annoyed thankfully!!! I never had that happen before. Good old anxiety haha!!!
At 10:30 I had my clinic visit. I saw the nurse and we went over everything. It was probably close to an hour we chatted. I had to give a history and medications etc since I am new. I talked about some of the issues I have and things I would like to focus on. We are going to do another OGTT to see how my sugars are. I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at. I scheduled an appointment with her for September. I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan. I am going to see a gynoendocrinologist who focuses on hormones etc after menopause. I never knew someone like that existed and I think it will be great to meet with them. We are going to do an overnight O2 study to see how my numbers are when I sleep. I haven't been using O2 when I sleep the past month or so and I have been feeling OK. But I want to be sure I am not hurting myself by doing this. I got a prescription for Ativan which I loooooove. So thankful they gave me one for my anxiety.
After the nurse, I met with my new CF doctor. He was great. Very personable and open and I felt very comfortable with him. We talked about everything, my history, action plan etc. One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning. Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra. I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work. So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests. His main concern is that I am treated by the same family of antibiotics instead of getting two families in there. So if we can add Tobra back in that would be good.
Overall I was there for 3.5 hours and I feel like I got so much accomplished. I felt very comfortable there, not like I was out of place at all. At BCH you get shoved in a room and I always feel like I am a caged animal. AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out. I chatted with the woman at the desk and it was nice. I felt like they cared and like I wasn't just another patient on the list. I missed that from my old clinic in PA. I am so glad to have it back.
So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!! You ladies rock!!!
Now to send a good bye letter to BCH...
I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30. It has been raining for 3 days and I knew traffic would be a mess. It was. PFTs went well, I have not changed since April which is good. They did a post as well and I shot up 3% from 37% to 40%. It doesn't seem like much but it is a 9% increase which is huge! I got a little panicky in the booth when they blocked the air for the test. But I only had to stop once. The woman was very nice and didn't get annoyed thankfully!!! I never had that happen before. Good old anxiety haha!!!
At 10:30 I had my clinic visit. I saw the nurse and we went over everything. It was probably close to an hour we chatted. I had to give a history and medications etc since I am new. I talked about some of the issues I have and things I would like to focus on. We are going to do another OGTT to see how my sugars are. I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at. I scheduled an appointment with her for September. I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan. I am going to see a gynoendocrinologist who focuses on hormones etc after menopause. I never knew someone like that existed and I think it will be great to meet with them. We are going to do an overnight O2 study to see how my numbers are when I sleep. I haven't been using O2 when I sleep the past month or so and I have been feeling OK. But I want to be sure I am not hurting myself by doing this. I got a prescription for Ativan which I loooooove. So thankful they gave me one for my anxiety.
After the nurse, I met with my new CF doctor. He was great. Very personable and open and I felt very comfortable with him. We talked about everything, my history, action plan etc. One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning. Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra. I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work. So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests. His main concern is that I am treated by the same family of antibiotics instead of getting two families in there. So if we can add Tobra back in that would be good.
Overall I was there for 3.5 hours and I feel like I got so much accomplished. I felt very comfortable there, not like I was out of place at all. At BCH you get shoved in a room and I always feel like I am a caged animal. AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out. I chatted with the woman at the desk and it was nice. I felt like they cared and like I wasn't just another patient on the list. I missed that from my old clinic in PA. I am so glad to have it back.
So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!! You ladies rock!!!
Now to send a good bye letter to BCH...
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!
Monday, October 6, 2014
10 Weeks Post Whipple
It's about time that I update this thing. I have been really busy and that is great!
Things are pretty much back to normal here. There is still some pain in my lower ab area but only when I cough. I think my muscles are recovering and the trauma of coughing every few minutes is not helping. It will go away in time I am sure. The skin around my incision is now peeling. I started using Mederma on it to make it less red and that's when I started peeling. Related? Maybe. Not too worried though.
As far as what I was expecting post things are different. I do not need insulin thankfully and I do still need enzymes of course. My body does not seem to have changed much missing a piece of my pancreas. One thing that changed is my need for Miralax daily. I no longer need it every day. I am still working on when to take it though and it could be a few months till I am back to knowing and on a schedule.
The results of the surgery showed that the cyst was entirely related to CF. There were no signs of cancer at all. Great news!!! It does mean this surgery was technically not needed but I am glad to have had it done. Now any other cysts that grow large like this one and read the way this one did we can chalk up to CF and not Lynch. Transplant was pleased with the results of course and are happy to have me as a candidate again.
Here is a picture of my torso. Its a little outdated now but nothing has changed on the recent picture. Except maybe a few more pounds added to me ;)
Things are pretty much back to normal here. There is still some pain in my lower ab area but only when I cough. I think my muscles are recovering and the trauma of coughing every few minutes is not helping. It will go away in time I am sure. The skin around my incision is now peeling. I started using Mederma on it to make it less red and that's when I started peeling. Related? Maybe. Not too worried though.
As far as what I was expecting post things are different. I do not need insulin thankfully and I do still need enzymes of course. My body does not seem to have changed much missing a piece of my pancreas. One thing that changed is my need for Miralax daily. I no longer need it every day. I am still working on when to take it though and it could be a few months till I am back to knowing and on a schedule.
The results of the surgery showed that the cyst was entirely related to CF. There were no signs of cancer at all. Great news!!! It does mean this surgery was technically not needed but I am glad to have had it done. Now any other cysts that grow large like this one and read the way this one did we can chalk up to CF and not Lynch. Transplant was pleased with the results of course and are happy to have me as a candidate again.
Here is a picture of my torso. Its a little outdated now but nothing has changed on the recent picture. Except maybe a few more pounds added to me ;)
Overall I feel pretty good. My lung function was down a good amount at my clinic visit 2 weeks ago so we started oral cipro to see if it gives me a boost. I didn't feel as low as I was but it makes sense I am down. For the first few weeks after surgery I could not cough like I usually do. So things have been sitting and brewing in there. The past 7 or so weeks I have been able to cough better and to get stuff up. My FEV1 was at .89L (29%) down from 1.15L (38%) in July before surgery. So yeah a significant drop.
My dilemma is this though. Why is my FEV1 so low, yet I feel like I am functioning at a much higher one? I know I know, everyone is different, it just seems so strange to me to have an FEV1 of 29% and yet still be able to carry boxes up and down steps (slowly and immediately after my nebulized treatments and only a couple with breaks and coughing fits - but I do it!). Why is it that I can jog on the treadmill (even if only for less than 60 seconds at a time) if my numbers are such shit? It is this aspect of CF I just never understand. I see 29% and I think that I should be home bound and on O2, yet I am not. I use it to sleep and I need it if I plan on taking my running any farther. Quality of life ey? LOL
So that is it for me for now. I am sure that the Cipro will do nothing for me and I will end up in patient the beginning of November. But at least I will be feeling great for the upcoming holidays!!!
Wednesday, February 12, 2014
Evaluation Date Set
I was surprised when transplant clinic called me the other day to set up my appointments...for February 19th. Holy soon batman! Its going to be a very long day with not much time to rest. But I will sleep good on Thursday...no wait I can't because I have to pick the SD up from the airport. Great. Maybe the flight will be delayed in like it was delayed out.
Anyway...I meet with everyone but the doctors. First appointment is at 9am and the last is at 4pm with a double CT scan of my lungs and sinuses.
After all those tests and meetings are done I only need to get a TB test done and bone density scan and I will be completely up to date on my testing. That reminds me, I need to call my PCP and set up the TB test appointments.
I assume on May 2nd when I have my clinic appointment they will go over everything with me, and let me know the reasoning for the rush to get this done. I am assuming right now there is worry I won't do well after the pancreas surgery. I mean really, with an FEV1 at 32%, if I were to handle the surgery poorly, I don't have much wiggle room do I? Any small bump is likely to put me in danger and need of a transplant. Let's hope that I don't get there and that if I do I know what I want....I am still so unsure of it all................................................
Anyway...I meet with everyone but the doctors. First appointment is at 9am and the last is at 4pm with a double CT scan of my lungs and sinuses.
After all those tests and meetings are done I only need to get a TB test done and bone density scan and I will be completely up to date on my testing. That reminds me, I need to call my PCP and set up the TB test appointments.
I assume on May 2nd when I have my clinic appointment they will go over everything with me, and let me know the reasoning for the rush to get this done. I am assuming right now there is worry I won't do well after the pancreas surgery. I mean really, with an FEV1 at 32%, if I were to handle the surgery poorly, I don't have much wiggle room do I? Any small bump is likely to put me in danger and need of a transplant. Let's hope that I don't get there and that if I do I know what I want....I am still so unsure of it all................................................
Thursday, February 6, 2014
Finished Processing
OK so the long awaited, or not, update.
I have had over a week to process all my information and I think I am at a good point.
The thing is I HAVE to get this cyst from my pancreas removed. The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it. The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery. Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas. My low lung function means I could never come off the vent or I could die. But not having it removed means I may never get a transplant and I may get cancer. Neither risks I am willing to take. I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.
The stats on this surgery are crazy. 30-60% of patients experience post-surgical complications. 5% of patients die during surgery. Roughly 5% die from complications after surgery. Scary to me, but I also didn't ask about the stats when I had the hysterectomy. It seemed simple and easy. Though when you Google the stats it seems just as scary. So maybe I have nothing to fret about.
My cyst right now is on the head of the pancreas and the whole head will need to be removed. The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm. 3cm and the surgeon told me they remove it. But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.
After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc. I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed. Tx was asking a bunch of questions, as I would expect. Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible. Luckily I see the transplant doc early May, before the MRI and surgeon again.
As far as CF clinic went...I was down a bit lunch function. At 32% again, 1.00L exactly. She wants to see me monthly until the surgery to be sure I am ready. As she said, I am stable, I dip here and there but nothing drastic. I am not on O2 full time and only require a small amount with sleep. Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery. But I am still scared. I will be scared until the surgery is over.
The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again. So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully. I can deal with CT scans, echos, PFTs, labs and meetings with docs. I don't know what this means for me. Do they want to reconsider my case and list me? Or disqualify me? I won't find out until May 2nd.......................................
Love to you all...
I have had over a week to process all my information and I think I am at a good point.
The thing is I HAVE to get this cyst from my pancreas removed. The thing is pancreas surgery is a BEAR and I may or may not be in good enough health to deal with it. The surgeon is worried, and rightly so, about my lung function and bacteria growth in my lungs, and recovery. Bacteria from my lungs can cause all sorts of issues with the healing of a sliced up pancreas. My low lung function means I could never come off the vent or I could die. But not having it removed means I may never get a transplant and I may get cancer. Neither risks I am willing to take. I may not be 100% sure I WANT a transplant, but I know I don't want the option taken off the table.
The stats on this surgery are crazy. 30-60% of patients experience post-surgical complications. 5% of patients die during surgery. Roughly 5% die from complications after surgery. Scary to me, but I also didn't ask about the stats when I had the hysterectomy. It seemed simple and easy. Though when you Google the stats it seems just as scary. So maybe I have nothing to fret about.
My cyst right now is on the head of the pancreas and the whole head will need to be removed. The size is 2.6cm right now and we will see in May if it has grown to the magic number of 3cm. 3cm and the surgeon told me they remove it. But because I have Lynch Syndrome and they are recently learning the affects of LS on the pancreas, they would recommend it coming off, if I did not have CF or transplant to think of.
After the appointment on Tuesday, the surgeon began a chain email with my GI doc, genetics doc, tx team and CF doc. I was pleasantly surprised he started it that day and did not expect to see my CF doc on Wednesday and hear what had been discussed. Tx was asking a bunch of questions, as I would expect. Dr. D. does not see any serious risks (besides the vent thing) to me having the surgery and vowed they would do all they could to be sure my lungs were in the best shape possible. Luckily I see the transplant doc early May, before the MRI and surgeon again.
As far as CF clinic went...I was down a bit lunch function. At 32% again, 1.00L exactly. She wants to see me monthly until the surgery to be sure I am ready. As she said, I am stable, I dip here and there but nothing drastic. I am not on O2 full time and only require a small amount with sleep. Thanks to exercise my resting heart rate and O2 have gotten better so I am in good shape for surgery. But I am still scared. I will be scared until the surgery is over.
The transplant coordinator called me earlier this week to let me know that due to all of this, they want me to get up to date on all of my transplant tests again. So back to the dentist I went, back to the PCP I go for those tests and I get to spend a day or two wandering around BWH getting all my tests done again...except the cardiac cath and pH probe thankfully. I can deal with CT scans, echos, PFTs, labs and meetings with docs. I don't know what this means for me. Do they want to reconsider my case and list me? Or disqualify me? I won't find out until May 2nd.......................................
Love to you all...
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.
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!
Sunday, September 15, 2013
Surviving
When you have CF you spend your life waiting for the ball to drop on your health. You live life as best as you can: you go to college, you get a job in your field, you stop when you need to and in between you fit in hospital stays, IVs and therapies daily.
But what happens when you hit your 30s, you can't work because your health is too precarious, and you have been evaluated for a double lung transplant, and then you learn that you MIGHT get a new drug that could push that expiration date to over 60?!
It sounds so exciting and amazing and just plan AWESOME.
But it also sounds scary and emotional and weird.
WHY???
Well that's because you spent your whole life up until this point thinking that you would never ever see 40. That making it to almost 33 is a miracle in itself. And that the thought of living to 60+ is just impossible. I know to someone who hasn't had to deal with this it probably sounds ridiculous. But let me explain.
I don't remember when I became fully aware of CF and its consequences. I always knew my life was going to be shorter but I don't think I ever truly THOUGHT about it. Not until 15 or so years ago anyway. Then I began to think about my life expectancy. I went to college right after high school and I got a job in my field right after college in the fall of 2001. I worked in my field for 8 years, almost to the month (November 2001 to December 2009). I participated in the 401k offered by all my employers but I don't have one anymore. I took the penalties when I moved up to Boston and took that money to survive on until I was approved for SSDI. When we would have meetings in work with the 401k company I would tell them I was not going to live to retirement age so what were my options? Just get it anyway.
I have never thought about burying my parents or living without them. I have always assumed I would be buried first. I have never thought about old age and spending 30 years with my husband. I always assumed I would be dead by 40. I never expected to see my niece and nephew graduate high school, college, or get married. I haven't worried much about things because I was expecting to be dead by 40.
Now I am faced with the possibility of ALL of those things. I might have to bury my parents. I might spend the next 30 years with Peter. I might see my niece and nephew grow up and get married. I might make it to retirement age and I might not be prepared.
When you expect to die early you live your life completely different than someone who expects to retire some day. And not just in "living" life, but in preparing for old age. Why prepare if there is no need for it? I wanted to keep my 401k in a 401k when I "retired" in 2009 so that my family wouldn't have to be burdened with my funeral costs. I was told by them not to worry about it, to take the money to survive on then. You think differently.
How does one cope with this new prospect of life? Especially for someone who likes to be prepared, how do you cope with the possibility of NOT being prepared to retire? Kalydeco, when it comes out for DDF508 mutations, will change my life forever. I will live to retirement age. I will grow old with Peter. I will be able to go back to work. But its going to be like starting out at 35. Those 14 years where I was working, and then not working, will be like they didn't exist. I will have to start from scratch. And let me tell you how scary that thought is.
I don't want anyone reading this to think I am being ungrateful. Believe me, I am thoroughly ecstatic that I will get to do all that I wanted to do again without needing new lungs. I won't have to worry about the threat of cancer being exacerbated tenfold because of immuno-suppressant medications. I might get the chance to be as close to normal as possible. And that is amazing and exciting to me.
But I still have to deal with things I never thought I would have to. I guess it makes me human and normal to now think about things that my husband and brother and friends think about. To worry about retiring and having money to do it. To worry if I will spend the rest of my life working somewhere I hate to get a good retirement, or if I will do something I love for 30 years. The possibilities are endless, and though they are scary and exciting, they are inevitable.
I hear there are survivors groups for people with CF living over the age of 40. Maybe we need more of these, for those who will be changing their life's outlook completely in just a few short years...or less...
But what happens when you hit your 30s, you can't work because your health is too precarious, and you have been evaluated for a double lung transplant, and then you learn that you MIGHT get a new drug that could push that expiration date to over 60?!
It sounds so exciting and amazing and just plan AWESOME.
But it also sounds scary and emotional and weird.
WHY???
Well that's because you spent your whole life up until this point thinking that you would never ever see 40. That making it to almost 33 is a miracle in itself. And that the thought of living to 60+ is just impossible. I know to someone who hasn't had to deal with this it probably sounds ridiculous. But let me explain.
I don't remember when I became fully aware of CF and its consequences. I always knew my life was going to be shorter but I don't think I ever truly THOUGHT about it. Not until 15 or so years ago anyway. Then I began to think about my life expectancy. I went to college right after high school and I got a job in my field right after college in the fall of 2001. I worked in my field for 8 years, almost to the month (November 2001 to December 2009). I participated in the 401k offered by all my employers but I don't have one anymore. I took the penalties when I moved up to Boston and took that money to survive on until I was approved for SSDI. When we would have meetings in work with the 401k company I would tell them I was not going to live to retirement age so what were my options? Just get it anyway.
I have never thought about burying my parents or living without them. I have always assumed I would be buried first. I have never thought about old age and spending 30 years with my husband. I always assumed I would be dead by 40. I never expected to see my niece and nephew graduate high school, college, or get married. I haven't worried much about things because I was expecting to be dead by 40.
Now I am faced with the possibility of ALL of those things. I might have to bury my parents. I might spend the next 30 years with Peter. I might see my niece and nephew grow up and get married. I might make it to retirement age and I might not be prepared.
When you expect to die early you live your life completely different than someone who expects to retire some day. And not just in "living" life, but in preparing for old age. Why prepare if there is no need for it? I wanted to keep my 401k in a 401k when I "retired" in 2009 so that my family wouldn't have to be burdened with my funeral costs. I was told by them not to worry about it, to take the money to survive on then. You think differently.
How does one cope with this new prospect of life? Especially for someone who likes to be prepared, how do you cope with the possibility of NOT being prepared to retire? Kalydeco, when it comes out for DDF508 mutations, will change my life forever. I will live to retirement age. I will grow old with Peter. I will be able to go back to work. But its going to be like starting out at 35. Those 14 years where I was working, and then not working, will be like they didn't exist. I will have to start from scratch. And let me tell you how scary that thought is.
I don't want anyone reading this to think I am being ungrateful. Believe me, I am thoroughly ecstatic that I will get to do all that I wanted to do again without needing new lungs. I won't have to worry about the threat of cancer being exacerbated tenfold because of immuno-suppressant medications. I might get the chance to be as close to normal as possible. And that is amazing and exciting to me.
But I still have to deal with things I never thought I would have to. I guess it makes me human and normal to now think about things that my husband and brother and friends think about. To worry about retiring and having money to do it. To worry if I will spend the rest of my life working somewhere I hate to get a good retirement, or if I will do something I love for 30 years. The possibilities are endless, and though they are scary and exciting, they are inevitable.
I hear there are survivors groups for people with CF living over the age of 40. Maybe we need more of these, for those who will be changing their life's outlook completely in just a few short years...or less...
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.
Wednesday, June 12, 2013
Amazing Difference in 3 Months from Exercise!!!
This is the story of a Cyster's desire to improve her body and her health. This is a story with a happy plot line. This story is not over yet.
Three months ago I joined a new gym. I had been at my old one for a while but it was boring, I didn't like the atmosphere and I felt like a puny girl. Then the end of February I found a flyer in the mail-room of our condo. It was for a women's only gym down the street. Closer than the other gym!!! I decided to check it out. It was a bit more pricey but it had a good vibe and they offered classes for teens which was perfect for my step-daughter. I was hooked! I signed up that day and have not looked back since.
With the gym membership (and an annual fee) you can get a fitness consult to see where you are body wise. It was $90 and you get 4 appointments. I couldn't say no. March 13, 2013 I had my first consult. I was nervous. I felt fat and gross and so out of shape. I say I FELT that way because while I was out of shape, I was far from fat.
Here are some stats from that consult:
Weight: 126.2 lbs
BMI: 22.4
Body Fat: 30.8%
Fat Mass: 38.9 lbs
Cardio Fitness: 28.9 (needs improvement - NI)
Grip Strength: 51.6 (Fair)
Push ups (on your knees): 7 (NI)
Sit and Reach: 13.2 (NI)
Plank: 11 (Good)
Vertical Jump: 7.7 (NI)
Fast forward to today. It has been 3 months, and only 6 personal training sessions. I exercise 5-6 days a week. I do cardio for 4 days, strength training one day a week and then I also do Tone It Up. I am eating better, I am working out, and I am seeing results (and I realize I sound like a dam infomercial!).
Here are today's stats:
Weight: 121.2 lbs
BMI: 21.5
Body Fat: 28.4% (28% is normal)
Fat Mass: 34.4 lbs
Cardio Fitness: 37.8 (Very Good)
Grip Strength: 52.9 (Fair)
Push ups (on your knees): 25 (Very Good)
Sit and Reach: 22.86 (NI)
Plank: 11 (Good)
Vertical Jump: 12.7 (NI)
Now for the kicker:
I lost 14.25 inches from my body!!!
3/4" from my neck
1.5" from my shoulders
1.5" from my chest
2.5" from my waist
2.5" from my hips
2.0" from each of my thighs
I lost 4.5 lbs of body fat and decreased my Body Fat% by 2.4%.
My biggest surprise is not the 14" that I lost, but the improvement in my cardio functions! Granted, today I could not finish the treadmill test (they increase the incline and I insisted that once I hit 90% O2 we stop since my lungs are not fully cooperating), whereas last time I forced myself to finish no matter what. But my recovery time for my HR was much better this time around.
I knew I lost weight, I knew I lost inches. But I had no idea the results were this fabulous. My trainer asked if I wanted to be on the testimonial board and I said yes!!! After 6 sessions to see such an improvement, it makes me so happy. I realize now that the hard work IS paying off. I may not get back to work, but I know I will be healthier, and if I keep this up, when I get a transplant, hopefully my recovery and chances of survival will increase with the added health on the rest of my body.
I love this!!!
Monday, June 10, 2013
Drama Queeeeeeen!!!
I feel like a dram queen every night. I know, me?!?!
The Prednisone has been great giving me energy and keeping the zzz's away, but it hasn't been great opening up my tight lungs.
Last night I started having a small, tolerable, panic attack because I was about to do my FIFTH breathing treatment for the day, only 2 hours after the last one. I NEVER do that!!! But I was about to go to bed and my lungs were so sore and hurt so much, and were so tight, I wanted to try and open them. Didn't work. As I climbed into bed next to P, complaining about the pain and the uncomfortableness, I felt like some drama queen looking for attention...
We got home from our cabining weekend away around noon yesterday. I immediately went into Prednisone induced overdrive cleaning and putting things away. The laundry room shelves got re-arranged. The TV stand in the bedroom got cleaned and sorted. The floors were vacuumed. The fridge was pulled out and I scrubbed behind it as well as the whole outside of it. 5 loads of laundry were done (4 sorted and put away). And we took Major to the park to play for a bit. All of that - besides the laundry - were done by 6pm.
I know I overdid it. But we relaxed on Saturday and my lungs were having a hissy fit then too. I am going to TRY to take it easy today, exercise, crochet, read for classes, and see if my lungs don't want to jump out of my body by 10pm again.
I also wish CF doctors could feel this pain and understand that yes Motrin on a daily basis in the dose I was taking is not fabulous for my kidneys/liver whatever, but fuck man, MY LUNGS HURT.
I was able to get an appointment for June 25th to follow up with the regiment I am on. She said 3 weeks when I left but the scheduling was all screwy so I said I would call end of this week to schedule after July 1. Decided to make it exactly 3 weeks (which ironicly the appointment I made is the same one I cancelled to go in last week to see her), so that if this does not help, I can get in to the hospital and start IVs before my 2nd summer class starts July 9.
The Prednisone has been great giving me energy and keeping the zzz's away, but it hasn't been great opening up my tight lungs.
Last night I started having a small, tolerable, panic attack because I was about to do my FIFTH breathing treatment for the day, only 2 hours after the last one. I NEVER do that!!! But I was about to go to bed and my lungs were so sore and hurt so much, and were so tight, I wanted to try and open them. Didn't work. As I climbed into bed next to P, complaining about the pain and the uncomfortableness, I felt like some drama queen looking for attention...
We got home from our cabining weekend away around noon yesterday. I immediately went into Prednisone induced overdrive cleaning and putting things away. The laundry room shelves got re-arranged. The TV stand in the bedroom got cleaned and sorted. The floors were vacuumed. The fridge was pulled out and I scrubbed behind it as well as the whole outside of it. 5 loads of laundry were done (4 sorted and put away). And we took Major to the park to play for a bit. All of that - besides the laundry - were done by 6pm.
I know I overdid it. But we relaxed on Saturday and my lungs were having a hissy fit then too. I am going to TRY to take it easy today, exercise, crochet, read for classes, and see if my lungs don't want to jump out of my body by 10pm again.
I also wish CF doctors could feel this pain and understand that yes Motrin on a daily basis in the dose I was taking is not fabulous for my kidneys/liver whatever, but fuck man, MY LUNGS HURT.
I was able to get an appointment for June 25th to follow up with the regiment I am on. She said 3 weeks when I left but the scheduling was all screwy so I said I would call end of this week to schedule after July 1. Decided to make it exactly 3 weeks (which ironicly the appointment I made is the same one I cancelled to go in last week to see her), so that if this does not help, I can get in to the hospital and start IVs before my 2nd summer class starts July 9.
Thursday, June 6, 2013
I Wanna Bulk UP!
No not really!!! But let's hope my plan of action doesn't make me.
Clinic was a bit disappointing. As I posted last time I feel like ass, like complete and total shit. So what happened at clinic?
Nothing...ok stuff happened but I am eh about it all.
FEV1 the same. I went from 1.13L to 1.11L, 39%-38%. Nothing worrisome there. But no one seems to care that when I have an appointment at 9:30am my numbers are going to be waaaay better than when it is at 11am (this was a moved appointment so I had to make it that early if I wanted to go before June 26th). 2 hours post-treatment is great for me in the mornings. 4 hours post-treatment not so much. Get me in the afternoon and that is my PERFECT time because that is pretty much how I feel from about noon till I go to bed around mid-night. 9am is NOT my normal lung feeling, nor capacity. But that doesn't matter in the medical world apparently...Anyway.
When I explained my symptoms I felt like my doc was thinking I was lying. Like I was looking for IVs for fun. Yeah fun. Let me tell you how much fun diarrhea, nausea and pure exhaustion are. But they are worth it when you feel great after.
So instead what did I get?
An x-ray to make sure nothing was wrong in there. Only some extra smudge on the lower lobes.
2 weeks of 750mgs of Cipro twice a day.
1 week of 20mgs prednisone twice a day
1 week of 20mgs prednisone once a day
30 days of 30mgs of Prevacid twice a day (been having a lot of extra heartburn lately)
Hoping the prednisone opens me up. If it doesn't I am going to be so mad. I can't fit a hospitalization in until beginning of September without missing classes and I don't want to do that.
Oh well. Camping this weekend and maybe the steroids will make it easier for me to bike ride, go on a scavenger hunt, and swim....
Clinic was a bit disappointing. As I posted last time I feel like ass, like complete and total shit. So what happened at clinic?
Nothing...ok stuff happened but I am eh about it all.
FEV1 the same. I went from 1.13L to 1.11L, 39%-38%. Nothing worrisome there. But no one seems to care that when I have an appointment at 9:30am my numbers are going to be waaaay better than when it is at 11am (this was a moved appointment so I had to make it that early if I wanted to go before June 26th). 2 hours post-treatment is great for me in the mornings. 4 hours post-treatment not so much. Get me in the afternoon and that is my PERFECT time because that is pretty much how I feel from about noon till I go to bed around mid-night. 9am is NOT my normal lung feeling, nor capacity. But that doesn't matter in the medical world apparently...Anyway.
When I explained my symptoms I felt like my doc was thinking I was lying. Like I was looking for IVs for fun. Yeah fun. Let me tell you how much fun diarrhea, nausea and pure exhaustion are. But they are worth it when you feel great after.
So instead what did I get?
An x-ray to make sure nothing was wrong in there. Only some extra smudge on the lower lobes.
2 weeks of 750mgs of Cipro twice a day.
1 week of 20mgs prednisone twice a day
1 week of 20mgs prednisone once a day
30 days of 30mgs of Prevacid twice a day (been having a lot of extra heartburn lately)
Hoping the prednisone opens me up. If it doesn't I am going to be so mad. I can't fit a hospitalization in until beginning of September without missing classes and I don't want to do that.
Oh well. Camping this weekend and maybe the steroids will make it easier for me to bike ride, go on a scavenger hunt, and swim....
Thursday, June 14, 2012
Big Decision to Make
Today I decided to check out the design job scene online. And I found a job I think I would love. And they are hiring. And I could finish my NCIDQ paperwork and actually get licensed! (now to actually FIND the paperwork I started when I still lived in PA)
But what should I do?
You all have seen me complain and whine about how much I miss working on here numerous times. I would LOVE to go back to work! I know I couldn't do it for years but maybe 12-24 months? Just enough to get some money saved up to keep us from drowning when I get transplanted.
I spoke with a friend who went from SSDI to working while on Medicare and I wouldn't lose my Medicare, just my SSDI which I could obviously live without if I was working again. And I would be able to get back on it fairly easy since I wouldn't be taking more than 36 months off from payments.
But what do I do about life? And school? And volunteering? And Major (our dog)? And my health?
I remember that when I worked I had no life. I couldn't see friends on weekends because I was so tired from working all week. But I don't have many friends up here anyway and we stay home a lot on the weekends as it is.
School I could put on hold if I wanted to. Or just take one class at a time. I think I could handle it. I have 6 years to complete the masters program and I know I won't be working for 5 years so I could complete it after stopping work again. Am I OK with that? I think so.
Volunteering would obviously have to come to an end. I could deal with that. I could always start up again when I stopped working again.
Major we could put in doggy day camp. It wouldn't be too bad and he loves it there anyway.
Health....hmmmmm....that is a tough one. I would still need to get IVs every few months just like now, but it would be more difficult to do when I am working 40+ hours a week. I was getting sick all the time when I worked and was down to 4 days a week. I doubt a new company is going to hire me for only 4 days a week. Even if I did put the full 40 hours in.
There is just so much to think about. Should I send in my resume and just see if I even get a call back? But if I do get a phone call, do I tell them I am unsure of what I want to do? So so so so so much to think about!
Wednesday, June 6, 2012
Pain Update and TALANA'S NEW LUNGS
Amazingly and wonderfully the pain went away Sunday morning. I coughed up what felt like oodles of goo and wham pain was gone!
I shall take it!
Except now I am beck to goo filled but hey no pain so its a win!
Annnnnnnnnnnnnnnnnnnnnnnnnnnnd my bloggy and RL friend DayDee is in surgery RIGHT NOW getting a new set of shiny pink healthy lungs!!
Prayer and good thoughts to both Tally's family and the donors. Thanks for saying yes to organ donation.
Go Tally!!!!!!!!!!!!!!!!
I shall take it!
Except now I am beck to goo filled but hey no pain so its a win!
Annnnnnnnnnnnnnnnnnnnnnnnnnnnd my bloggy and RL friend DayDee is in surgery RIGHT NOW getting a new set of shiny pink healthy lungs!!
Prayer and good thoughts to both Tally's family and the donors. Thanks for saying yes to organ donation.
Go Tally!!!!!!!!!!!!!!!!
Saturday, June 2, 2012
PICC removed - Last Week
I just realized I didn't update after having my PICC line pulled! My bad!
Well things didn't change at all from the week I last posted to when they pulled the line.
Literally....1.28L to 1.28L. I can say I have NEVER had an identical reading before! Maybe .01 or .02 off but never the same! I am one thing for sure - consistently inconsistent!
So they pulled my line and I feel great!
Or I should say felt great till last night. I started having upper left lobe pain around 11pm last night. It felt kinda like pain I had before a month or so ago. It went away eventually. But last night's started to go up my neck and into my shoulder. And it was painful to rotate my arm. I took some Motrin and went to bed. Could be pleurisy, and I think it may have been.
I woke up to no pain in my upper left lobe but now a pressing pain across the front of my chest, under my boobs. Its constant but is worse with inhalations. Again this is something I have experienced before so I am not worried. However, when P and I went to the food store I was wicked SOB and coughing like mad. I am also full of gunk. Its thick and regular color though. Might just be an infection pocket that has moved. I am going to see how tomorrow is and if I don't feel better I will be calling the doctor's office on Monday. I have some Cipro lying around I can take if need be.
This is 10 days off of IVs and I might need Cipro already. Really CF?
Well things didn't change at all from the week I last posted to when they pulled the line.
Literally....1.28L to 1.28L. I can say I have NEVER had an identical reading before! Maybe .01 or .02 off but never the same! I am one thing for sure - consistently inconsistent!
So they pulled my line and I feel great!
Or I should say felt great till last night. I started having upper left lobe pain around 11pm last night. It felt kinda like pain I had before a month or so ago. It went away eventually. But last night's started to go up my neck and into my shoulder. And it was painful to rotate my arm. I took some Motrin and went to bed. Could be pleurisy, and I think it may have been.
I woke up to no pain in my upper left lobe but now a pressing pain across the front of my chest, under my boobs. Its constant but is worse with inhalations. Again this is something I have experienced before so I am not worried. However, when P and I went to the food store I was wicked SOB and coughing like mad. I am also full of gunk. Its thick and regular color though. Might just be an infection pocket that has moved. I am going to see how tomorrow is and if I don't feel better I will be calling the doctor's office on Monday. I have some Cipro lying around I can take if need be.
This is 10 days off of IVs and I might need Cipro already. Really CF?
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