JennifersHope
New member
Hi Guys!!!!
I just posted on the other website....but the whole thing got lost..so I will try again..I just got home from the hospital... I went in for about a week. I have to say again if anyone is an adult and lives anywhere near NJ I so recommend Morristown Memorials Adult Cf program. I am new to being dx a few years anyway, but spent the first year and more denying it totally. I just recently switched to Dr Fiel and his nurse Paula who I swear should and could be a doctor herself. The whole team is so great. Elissa the social worker and everything.
I wouldn't trade being home for anything in the world,, it is the best feeling in the whole world..ever...........ever ever ever... Now that I got that out of my system....on to the update..
Anyway, as many of you know I just recently cultured MRSA and before that I have cultured Pseduo on and off but for the most part I am fine. I had been running fevers and stuff and orals just were not cutting it, so when I went to clinic I got admitted. Of course I did my usual and asked if I could finish my week of school first even though I couldn't breath that well.. I think I just react that way out of fear. My poor doctor didn't know what to do with me and I almost got a pschy consult called on me...hahahahah...
As it turns out, as usual my lungs looked okay on xray and pefect on catscan..I can't tell you how much that thrills me, it confuses me a little because I am sick all the freaken time but I am so happy anyway. Dr Fiel said that I have asthma as well and that much of my trouble comes from that.. kind of like I am not moving air in and out and he said I was tight and wheezy. ... They did PFTs on me yesterday and mine are on the way back up.
I am doing home IVS which is new for me. I am on Zosyn, Tobra, and Zyvox.. So I am quite busy..and all I can say about my stomach is ouch..it hurts so bad...I haven't had a fever in days.... and my sputum color is looking better.. TMI I Know...
I didn't know how lucky I was to have such a great team of Cf ppl. My doctor is one of the top drs in Adult CF and he speaks at conferences all the time and stuff.He is cutting edge in adult CF... Makes me feel so good. to know that. They are going away as a team soon to Maryland to speak....His nurse Paula is a gift from God and if I could be half as good as nurse as she is I would be honored in all honesty. Her love and compassion shines though so much. She called me on her day off and on her husbands birthday....just to check on me.. She is someone I trusted right away. The social worker Elissa also called me on her day off and spent so much time with me when I was admitted. she went with me to get my picc line in and is really trying to get me to accept this CF thing...which anyone who knows me knows it is a hard task to do.. Three sweat tests later...yeash...
The entire hospital was very nice minus one RT guy but they were all great... I was always afraid to go to a CF hospital and be treated because I didn't want to leave where I was and what I was used to, but what a difference it was to be supported by a team...
So I think I am so tired now that I need to go to bed.... but I am home.. I also have recently given some family members this website address and they may have already or will be soon posting on here, I hope they find as much love and support as I do. I do swear it is harder sometimes for the ppl in our lives to see us go through things then for us to do it...
But that may be easy for me to say because I am still okay.
I missed you guys and can't wait to catch up..I am going to school tomorrow, I am not driving or anything but the anxiety of not being there is to much for me.. I am so close to being done....
You guys are the best and I have thought about you often.
Lots of Love,
Jennifer 32 going to be 33 tomorrow. with CF (MILD) wahoo and Addison's and stuff that isn't so important..
Oh one more question... I am doing insulin at home on a sliding scale now because of the steroids... what I wanted to know is.... How long have you had to be on the insulin after the steroids were tapered???
I just posted on the other website....but the whole thing got lost..so I will try again..I just got home from the hospital... I went in for about a week. I have to say again if anyone is an adult and lives anywhere near NJ I so recommend Morristown Memorials Adult Cf program. I am new to being dx a few years anyway, but spent the first year and more denying it totally. I just recently switched to Dr Fiel and his nurse Paula who I swear should and could be a doctor herself. The whole team is so great. Elissa the social worker and everything.
I wouldn't trade being home for anything in the world,, it is the best feeling in the whole world..ever...........ever ever ever... Now that I got that out of my system....on to the update..
Anyway, as many of you know I just recently cultured MRSA and before that I have cultured Pseduo on and off but for the most part I am fine. I had been running fevers and stuff and orals just were not cutting it, so when I went to clinic I got admitted. Of course I did my usual and asked if I could finish my week of school first even though I couldn't breath that well.. I think I just react that way out of fear. My poor doctor didn't know what to do with me and I almost got a pschy consult called on me...hahahahah...
As it turns out, as usual my lungs looked okay on xray and pefect on catscan..I can't tell you how much that thrills me, it confuses me a little because I am sick all the freaken time but I am so happy anyway. Dr Fiel said that I have asthma as well and that much of my trouble comes from that.. kind of like I am not moving air in and out and he said I was tight and wheezy. ... They did PFTs on me yesterday and mine are on the way back up.
I am doing home IVS which is new for me. I am on Zosyn, Tobra, and Zyvox.. So I am quite busy..and all I can say about my stomach is ouch..it hurts so bad...I haven't had a fever in days.... and my sputum color is looking better.. TMI I Know...
I didn't know how lucky I was to have such a great team of Cf ppl. My doctor is one of the top drs in Adult CF and he speaks at conferences all the time and stuff.He is cutting edge in adult CF... Makes me feel so good. to know that. They are going away as a team soon to Maryland to speak....His nurse Paula is a gift from God and if I could be half as good as nurse as she is I would be honored in all honesty. Her love and compassion shines though so much. She called me on her day off and on her husbands birthday....just to check on me.. She is someone I trusted right away. The social worker Elissa also called me on her day off and spent so much time with me when I was admitted. she went with me to get my picc line in and is really trying to get me to accept this CF thing...which anyone who knows me knows it is a hard task to do.. Three sweat tests later...yeash...
The entire hospital was very nice minus one RT guy but they were all great... I was always afraid to go to a CF hospital and be treated because I didn't want to leave where I was and what I was used to, but what a difference it was to be supported by a team...
So I think I am so tired now that I need to go to bed.... but I am home.. I also have recently given some family members this website address and they may have already or will be soon posting on here, I hope they find as much love and support as I do. I do swear it is harder sometimes for the ppl in our lives to see us go through things then for us to do it...
But that may be easy for me to say because I am still okay.
I missed you guys and can't wait to catch up..I am going to school tomorrow, I am not driving or anything but the anxiety of not being there is to much for me.. I am so close to being done....
You guys are the best and I have thought about you often.
Lots of Love,
Jennifer 32 going to be 33 tomorrow. with CF (MILD) wahoo and Addison's and stuff that isn't so important..
Oh one more question... I am doing insulin at home on a sliding scale now because of the steroids... what I wanted to know is.... How long have you had to be on the insulin after the steroids were tapered???