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!
Friday, September 21, 2012
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.
Wednesday, September 5, 2012
WOW Pretty Low Numbers Again!
Its amazing how you can be sick and not even know it!
I had clinic today and we knew going in I would need a clean out. My numbers were down slightly last clinic and Cipro really didn't do much for me. I am more SOB and my energy level is low. I cough all the time, as usual but I mean really cough. I have an admission scheduled for next Wednesday, the 12th.
Seems I am on a somewhat downward trend. I get back up but my lows are pretty low!
Today I blew an FEV1 of .93L or 32%. Last clinic I was 1.10L or 38%. And the healthy clinic after IVs were stopped I was 1.28L or 44%. And last time I needed IVs (May) I was at .95L or 33%. Before that I was 1.08L or 37%. See where I am going with this?
I go up and then come back down. I go up and then I come back down.
Oh well....that is the nature of CF correct?
Today though I was completely overwhelmed. I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow. I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic. I felt overwhelmed by the never ending appointments for CF and LS. Bu constantly having to do this test and that test and go here and go there. And all so I don't get cancer and I can stay healthy.
Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy. Or I might only have 2 years. I dunno. Maybe once I hit the "dying" phase I will be more sure of things? Maybe I will be more confused? I dunno. All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).
And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him. I really miss my old clinic. I don't like going to a children's hospital. I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait). I don't like the traffic and the parking garage and the parking fee and well you get my point. It was just one of those days ya know....
I had clinic today and we knew going in I would need a clean out. My numbers were down slightly last clinic and Cipro really didn't do much for me. I am more SOB and my energy level is low. I cough all the time, as usual but I mean really cough. I have an admission scheduled for next Wednesday, the 12th.
Seems I am on a somewhat downward trend. I get back up but my lows are pretty low!
Today I blew an FEV1 of .93L or 32%. Last clinic I was 1.10L or 38%. And the healthy clinic after IVs were stopped I was 1.28L or 44%. And last time I needed IVs (May) I was at .95L or 33%. Before that I was 1.08L or 37%. See where I am going with this?
I go up and then come back down. I go up and then I come back down.
Oh well....that is the nature of CF correct?
Today though I was completely overwhelmed. I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow. I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic. I felt overwhelmed by the never ending appointments for CF and LS. Bu constantly having to do this test and that test and go here and go there. And all so I don't get cancer and I can stay healthy.
Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy. Or I might only have 2 years. I dunno. Maybe once I hit the "dying" phase I will be more sure of things? Maybe I will be more confused? I dunno. All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).
And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him. I really miss my old clinic. I don't like going to a children's hospital. I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait). I don't like the traffic and the parking garage and the parking fee and well you get my point. It was just one of those days ya know....
Friday, August 31, 2012
FREE Giveaway!
Do you want to win a FREE hat, scarf and mitten set for this upcoming winter? What about a red / white / blue one to commemorate 9-11?
Well come on over to Facebook and like my page and you will be entered into the drawing on September 12!!!
Crochet Cyster's Crafts
We have 180 likes so far and the goal for this contest is 333 (my lucky number)!!!
Well come on over to Facebook and like my page and you will be entered into the drawing on September 12!!!
Crochet Cyster's Crafts
We have 180 likes so far and the goal for this contest is 333 (my lucky number)!!!
Wednesday, August 29, 2012
Hormonal Imbalance
OK I don't really have a hormonal imbalance but I might in a few weeks. I have decided to once again stop my hormone replacement meds. I just don't want that synthetic crap. Instead I have purchased some herbal remedies that should help with the few menopausal symptoms I was not fond of (hot flashes, sleeplessness and vaginal dryness / tightness). On my list of purchased goods was:
Flax-seed: great source of omega-3 fatty acids which is vital for heart health. They help keep blood pressure and cholesterol down (I think I need to sneak some in the foods I make for P). They also contain lignans which may help fight colon (yay), breast, and skin cancers and can help with menopausal symptoms. They can also help clear up acne and help with mood. So its an all around win for me with this one.
Red clover: contains a large amount of isoflavones which acts like estrogen in mammals curtailing menopausal symptoms. It can also treat respiratory and skin problems. Again here, two birds, one stone.
Schizandra berries: a Chinese herb reputed to have health benefits such as improved sexual health, skin beautification, heightened mental activity, respiratory support and improved body functions. This one is mainly for my sexual health.
My goal is still to lose a few pounds and overall feel healthier. I am giving the herbs till Christmas to see if they work and if not then I have my meds I can go back on. But my fingers and toes are crossed that I don't need to!
Flax-seed: great source of omega-3 fatty acids which is vital for heart health. They help keep blood pressure and cholesterol down (I think I need to sneak some in the foods I make for P). They also contain lignans which may help fight colon (yay), breast, and skin cancers and can help with menopausal symptoms. They can also help clear up acne and help with mood. So its an all around win for me with this one.
Red clover: contains a large amount of isoflavones which acts like estrogen in mammals curtailing menopausal symptoms. It can also treat respiratory and skin problems. Again here, two birds, one stone.
Schizandra berries: a Chinese herb reputed to have health benefits such as improved sexual health, skin beautification, heightened mental activity, respiratory support and improved body functions. This one is mainly for my sexual health.
My goal is still to lose a few pounds and overall feel healthier. I am giving the herbs till Christmas to see if they work and if not then I have my meds I can go back on. But my fingers and toes are crossed that I don't need to!
Friday, August 24, 2012
Ecccchhhoooooooo
Today I had an echocardiogram done for transplant evaluation.
First off it was so cool! I got to watch my heart actually BEATING on the screen! Took me a few seconds to be sure that was what it really was, but it was in line with the "duh dun...duh dun...duh dun" of my heart beat. It was so small and I laid there for a while trying to figure out which angle it was. I kept picturing baby ultrasounds and how a baby would lay in the abdomen and how that looks....and well you get the idea.
Secondly I guess it wasn't THAT cool because I started to nod off....and did one of those "jump in your seats when you realize you are falling asleep" moves, only I was laying on my side....with the echo lady rubbing the device over my boob. Ah well. She asked if I was falling asleep and laughed. I felt like an ass but hey they keep it dark in there and looking at my heart can only entertain me for so long ya know.
I was the youngest one in the waiting room by far. I guess today was the older generation (see how I used that instead of old farts lol) day at the cardiovascular center.
I am feeling thoroughly overwhelmed at this transplant evaluation. I have hit denial mode and just can't seem to find the energy to move forward with it. My BRAVO test is scheduled but I need to move it because it falls on a day I will be inpatient, and they won't place it while inpatient (seriously PENN was so much better about this shit than BWH is sheesh). Clinic sent me a list of everything I have to have done, and when, to keep myself on the list (active or not) when I am actually listed. Key is getting everything up to date all at once so they can present my case and decide if I am a good candidate for lung transplantation.
But that is where I fall off the wagon. Getting it all scheduled and completed before something else expires. It's almost like I am sabotaging this before it even begins. Kinda like all my old relationships HA! If you sabotage it before it starts, then there is no disappointment when it doesn't work/happen right? RIGHT?
I remember when transplant was a word that described sick people needing new organs. It was a word that I NEVER thought I would ever use on an almost daily basis. It is a word I NEVER thought I would think about constantly. And it is a word I NEVER thought would cause me so much anxiety and fear.
I do plan on discussing my main concerns with the doctor next time I am there. I need them to be aware of my concerns, and see if they are the same as theirs...i.e. cancer. All this because of the threat of cancer. All this because I am PETRIFIED to get cancer after transplant. When I say petrified I mean like the kids in Jurassic Park when they are running for their lives scared. Yeah intense I know.
First off it was so cool! I got to watch my heart actually BEATING on the screen! Took me a few seconds to be sure that was what it really was, but it was in line with the "duh dun...duh dun...duh dun" of my heart beat. It was so small and I laid there for a while trying to figure out which angle it was. I kept picturing baby ultrasounds and how a baby would lay in the abdomen and how that looks....and well you get the idea.
Secondly I guess it wasn't THAT cool because I started to nod off....and did one of those "jump in your seats when you realize you are falling asleep" moves, only I was laying on my side....with the echo lady rubbing the device over my boob. Ah well. She asked if I was falling asleep and laughed. I felt like an ass but hey they keep it dark in there and looking at my heart can only entertain me for so long ya know.
I was the youngest one in the waiting room by far. I guess today was the older generation (see how I used that instead of old farts lol) day at the cardiovascular center.
I am feeling thoroughly overwhelmed at this transplant evaluation. I have hit denial mode and just can't seem to find the energy to move forward with it. My BRAVO test is scheduled but I need to move it because it falls on a day I will be inpatient, and they won't place it while inpatient (seriously PENN was so much better about this shit than BWH is sheesh). Clinic sent me a list of everything I have to have done, and when, to keep myself on the list (active or not) when I am actually listed. Key is getting everything up to date all at once so they can present my case and decide if I am a good candidate for lung transplantation.
But that is where I fall off the wagon. Getting it all scheduled and completed before something else expires. It's almost like I am sabotaging this before it even begins. Kinda like all my old relationships HA! If you sabotage it before it starts, then there is no disappointment when it doesn't work/happen right? RIGHT?
I remember when transplant was a word that described sick people needing new organs. It was a word that I NEVER thought I would ever use on an almost daily basis. It is a word I NEVER thought I would think about constantly. And it is a word I NEVER thought would cause me so much anxiety and fear.
I do plan on discussing my main concerns with the doctor next time I am there. I need them to be aware of my concerns, and see if they are the same as theirs...i.e. cancer. All this because of the threat of cancer. All this because I am PETRIFIED to get cancer after transplant. When I say petrified I mean like the kids in Jurassic Park when they are running for their lives scared. Yeah intense I know.
Sunday, August 19, 2012
Fevers Still
Just a quick update from me.
My fevers are back again blah. I am so run down. Sucks. I even slept a BUNCH this past week. Holding off for September 6th though so I am all fresh and cleaned out for the wedding (which is 2 months away today!!!).
Hopefully this week I can sleep some more, and get back into exercising and maybe clear out that way. I don't think it will happen though. IVs will most definitely be on my radar for the future.
On the bright side I have listed a few items on etsy again. Check me out! And if you have any friends having babies anytime soon maybe you could even purchase something homemade for them ;)
Crochet Cyster's Crafts
My fevers are back again blah. I am so run down. Sucks. I even slept a BUNCH this past week. Holding off for September 6th though so I am all fresh and cleaned out for the wedding (which is 2 months away today!!!).
Hopefully this week I can sleep some more, and get back into exercising and maybe clear out that way. I don't think it will happen though. IVs will most definitely be on my radar for the future.
On the bright side I have listed a few items on etsy again. Check me out! And if you have any friends having babies anytime soon maybe you could even purchase something homemade for them ;)
Crochet Cyster's Crafts
Tuesday, August 14, 2012
Anxiety
I never realized just how anxious I was until this past weekend. And I didn't realize just how awesome a job my anti-depressant did to alleviate my anxiety.
Sunday I had a bridal shower to go to for a friend, her fiance works with P. I was all hyped up to go, got dressed up in a new dress I bought, did my hair, put on some cool earrings and out the door I went. Then I hit people driving like slow pokes....and it was much harder to find than I had thought from the map....I was now 17 minutes late. And no idea when she was supposed to get there (though she did know about it, I didn't want to be walking in with her). So I find the place, drive in the parking lot and see its SUPER small and there is NO ROOM left. And to top it off, the shower is RIGHT there, out in the open with everyone watching me trying to turn around. And it hits me, I KNOW NO ONE at the shower except the bride. My heart started racing, my palms were sweating more than usual. I knew I would have to walk across the field to get to the pavilion, and I knew if I parked right away and walked up, they would know it was me who was turning around (yeah who cares right? This girl does cause she is a mental case). I drove around looking for some parking and settled on across the street in the grass with another car. I sat there for a good 25 minutes before I decided I was too stressed to go and left. I couldn't face walking across the field with 100 eyes that I did not know staring at me.
I haven't done something like that in over 4 years....before I went on Celexa.
Do I need to go back on it? Most likely. But the chances of me going back on it are slim to none. I don't want to be on the meds anymore. I hate having to be on the hormone replacement, but I have to if I want to continue to have sex (TMI? suck it up lol). I just never realized I was that bad before.
Sunday I had a bridal shower to go to for a friend, her fiance works with P. I was all hyped up to go, got dressed up in a new dress I bought, did my hair, put on some cool earrings and out the door I went. Then I hit people driving like slow pokes....and it was much harder to find than I had thought from the map....I was now 17 minutes late. And no idea when she was supposed to get there (though she did know about it, I didn't want to be walking in with her). So I find the place, drive in the parking lot and see its SUPER small and there is NO ROOM left. And to top it off, the shower is RIGHT there, out in the open with everyone watching me trying to turn around. And it hits me, I KNOW NO ONE at the shower except the bride. My heart started racing, my palms were sweating more than usual. I knew I would have to walk across the field to get to the pavilion, and I knew if I parked right away and walked up, they would know it was me who was turning around (yeah who cares right? This girl does cause she is a mental case). I drove around looking for some parking and settled on across the street in the grass with another car. I sat there for a good 25 minutes before I decided I was too stressed to go and left. I couldn't face walking across the field with 100 eyes that I did not know staring at me.
I haven't done something like that in over 4 years....before I went on Celexa.
Do I need to go back on it? Most likely. But the chances of me going back on it are slim to none. I don't want to be on the meds anymore. I hate having to be on the hormone replacement, but I have to if I want to continue to have sex (TMI? suck it up lol). I just never realized I was that bad before.
Saturday, August 11, 2012
Blog Header
Soooooooooooooooo, did everyone notice my new blog header picture?
NO?!?!?!?!
Well check it out!
My good friend Josh over at Joshland made it for me. Isn't he the bestest?????
NO?!?!?!?!
Well check it out!
My good friend Josh over at Joshland made it for me. Isn't he the bestest?????
Thursday, August 9, 2012
It Breaks My Heart
I have been putting off this post because I just wasn't sure how I wanted to approach it. I was devastated at the news and it really hasn't sunk in yet.
I don't know if you recall 2 years ago (will be in November), me writing about a friend who passed away from CF leaving behind his wife and their dog. I think I also posted about her Breast Cancer diagnosis on his birthday, just 6 months after he passed. Though I checked my posts and I don't see one. Maybe I didn't post specifically about it. Either way: (here is her blog)
On Gess' birthday, about 6 months after he passed away, she got the phone call saying she had stage 2 breast cancer. She immediately began treatment for it and had her eggs harvested so when she beat cancer she would be able to have babies. As time went on the cancer grew and spread. It was later learned that she was stage 4, not stage 2. It also spread to other organs. I am not sure exactly where but by the end it was in her lungs. She did everything she could to beat it. She tried so hard. And she never gave up on living. She traveled to so many places, to visit family, to visit friends. She made her memories. She was told she had more time. Then things went downhill fast. She was hospitalized for almost a month. She was going to go home on hospice and live out the remainder of her days at home. Then things got worse. They transferred her to a hospice facility to live for a few more weeks....then 24 hours after we learned this....she passed away.
Ugh. It breaks my heart. I can't even write this without crying. She was so young. He was so young. Its one of those stories you hear that you want to ask if its a movie. That nothing like this could really happen in real life because it sucks so freaking much.
My consolation is that she is finally back in her soul mate's arms. She was absolutely devastated when he passed away. She never had time to mourn properly. She never had time to learn to live without him. She had to struggle with cancer without the one and only love of her life.
It breaks my heart.
She is also living on. Her corneas were donated to someone....which, ironically, is also what was transplanted from Gess. Maybe the two people will meet and fall in love.....
I am glad she is pain free and in Gess' arms. But it is so unfair she had to go that way. Why did the universe have to send her cancer to put her back in Gess' arms? Why couldn't she be struck by lightning or something that was quick and fairly painless? She struggled and she suffered and she did so for no good reason. She is still gone. Gone forever.
Why?
I don't know if you recall 2 years ago (will be in November), me writing about a friend who passed away from CF leaving behind his wife and their dog. I think I also posted about her Breast Cancer diagnosis on his birthday, just 6 months after he passed. Though I checked my posts and I don't see one. Maybe I didn't post specifically about it. Either way: (here is her blog)
On Gess' birthday, about 6 months after he passed away, she got the phone call saying she had stage 2 breast cancer. She immediately began treatment for it and had her eggs harvested so when she beat cancer she would be able to have babies. As time went on the cancer grew and spread. It was later learned that she was stage 4, not stage 2. It also spread to other organs. I am not sure exactly where but by the end it was in her lungs. She did everything she could to beat it. She tried so hard. And she never gave up on living. She traveled to so many places, to visit family, to visit friends. She made her memories. She was told she had more time. Then things went downhill fast. She was hospitalized for almost a month. She was going to go home on hospice and live out the remainder of her days at home. Then things got worse. They transferred her to a hospice facility to live for a few more weeks....then 24 hours after we learned this....she passed away.
Ugh. It breaks my heart. I can't even write this without crying. She was so young. He was so young. Its one of those stories you hear that you want to ask if its a movie. That nothing like this could really happen in real life because it sucks so freaking much.
My consolation is that she is finally back in her soul mate's arms. She was absolutely devastated when he passed away. She never had time to mourn properly. She never had time to learn to live without him. She had to struggle with cancer without the one and only love of her life.
It breaks my heart.
She is also living on. Her corneas were donated to someone....which, ironically, is also what was transplanted from Gess. Maybe the two people will meet and fall in love.....
I am glad she is pain free and in Gess' arms. But it is so unfair she had to go that way. Why did the universe have to send her cancer to put her back in Gess' arms? Why couldn't she be struck by lightning or something that was quick and fairly painless? She struggled and she suffered and she did so for no good reason. She is still gone. Gone forever.
Why?
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