JennifersHope

[Diane]

Hi jenn, i was wondering how you are feeling? How is your friend John doing? I hope things are improving for both of you <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Diane,

You are so sweet to ask about me.. I have been posting all over the place... I have that steroid hyperness and at the same time I am exhausted..... so I kind of just wander on and off the puter all day..... posting about what ever pops into my mind....HA...

I am feeling okay..... Tired.but can't sleep.. I am due to follow up with Dr Fiel..(my CF doctor) on Thursday... This last hospital stay I went to my work.NON CF hospital and so he was not involved in my care..... BIG MISTAKE... I chose my hospital where I work for a lot of reasons..mostly cause more ppl come to see me when I am in patient there....also because my CF is so mild I feel stupid complaining to them when they have real sick CF patients....maybe it is because I am almost a nurse and I have a hang up about being a whiner....

but anyway.... I am doing home IVS ..I am going to start the hypertonic saline and hope it doesn't choke me to much.... .hanging in there..My primary has not cleared me to go to school clinicals yet... I am only able to go to school till Monday at noon..then I have to report to my primarys office.. for further evaluation.... You have no idea how hard I am trying to clear my lungs so that he will clear me for school... He tends to be very protective of me and is always afraid something is going to happen to me ...he is a wonderful man... wonderful..and I unintentially torture him.just by nauture of the fact that I don't live my life in bed....

Dr Fiel.. is the expert, so is his team... and we both know Paula is a Godsend... I am done with IVS on MOnday night but keeping the PICC line in till I see them as per their request... I have a feeling I am not done with IVs.. I just am so wiped out....

I can't get into see Dr Fiel till Thursday, he is out of town.. Paula.. has been wonderful about emailing me and getting me in to see them.. she is also out of town.... so physically, I am tired and a little SOB......but have the feeling I am not going to be completly back to myself till I am done with school....but that is a choice I have made and I am willing to live with since school is over in 16 weeks.....Paula ( CF nurse) just was emailing me about a clinical trial that I qualify for so I will see about that as well....


NOW TO JOHN......

I am so happy to report that he is making a turn around.. This time last week his CO2 was real high.. he was real out of it... not able to walk move or anything.... He found a hospital that is willing to look at his case transplant with Cepacia..but he has some requirements that they want that he is still to weak to do..But yesterday he walked the hallway and all the way down to PT for a total walk of 16 minutes or so.. GO JOHN>>>>The doctor actually said not only has he STOPPED Declining, he has started to improve.. I am so thankful to GOd I can't tell you.....

He is fighting..... and I am so proud of him.. He has his GF and family at his side and he is doing really well....If things keep going the way they are... I will be planning a trip there this summer..... after I graduate...... I can't stay at his house.... for obvious reasons..but I am sort of friendly with the neighbor and his parents live across the street.......


I can't remember if you have Yahoo or not My yahoo is Jennifers_hope.. I am going to download AIM.. today..this way I can chat with others in here... since SOME PPL (EMILY) ha doesn' t have yahoo...

My email is Jennifers_hope@yahoo...

THanks again for asking about me.. How are you??? How are things??????

Love,

Jennifer

 

[JazzysMom]

OMG Jen......I cant believe John is up & about a little. That is awesome........damn us CFers are fighters, top notch contenders for the world championship!

 

[Diane]

I AM SO HAPPY to hear the awesome news that John is improving. Our prayers were answered !! <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> Im glad you are doing better as well jenn, Please if you can remember tell Dr. Fiel and Paula, i said Hi and i miss them terribly. I WISH i could visit them, In fact one day i just might <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Diane..

Thanks.... From what I remember don't you live close to where Paula lives??? She commutes to work a few times a week and works from home a few times a week...would you consider commuting for the CF center....??? I don't think it is more than an hour away..and it is right off 287...I know Dr Fiel moved into the area.. but Paula commutes....He is very highly respected at Morristown Memorial where he works.. He is the head of Medicine there and I know when I was inpatient there in October all the residents and regular doctors jumped when they heard I was his patient....

I know it is easier to go closer to home..but since you have such a great relationship with them..maybe commuting is worth it...I know Paula and Dr Fiel are a real gold mine for North Jersey and the surrounding area..Actually the whole team is really wonderful.....I wish everyone could get the same care....

I am going to print this thread so they can see how much you miss them.....

Thanks for again for asking.....


Jennifer

 

[anonymous]

Jennifer - if you don't mind me asking, which tx center is considering John? That is such wonderful news! Glad to hear you are home. Hope you feel much better soon.

Take care,
jan (wife of Greg, 46 cf'er w/cepacia tx'd 10-31-05)
www.standinginthegap4greg.org

 

[JennifersHope]

THANKS JAN..

I have been meaning to email you to share the news with you.. I am sorry I have been sick and in the hospital myself... getting better though THank GOD...... Madison Wisconsin is considering him..which is really handy dandy..since he lives in that state.. talk about a MIRACLE.... Like I said they have laid out some requirements for him that he is not able to meet JUST YET.. BUt by Gods Grace he will meet them and be listed.........


How are you and Greg?????

Thinking of you guys,


Jennifer

 

[anonymous]

WOW, I can't believe Madison will accept him - what when he improves a little better so he can handle the tx? That is soooooo awesome. I am so sorry you were in the hospital, glad to hear you are home. Greg & I are doing great. Sometimes I still can't believe he had the tx. I wonder when I can stop worrying, you know. In the next few days I'll be posting on his website an update, and some excerpts from his sermon (his first official Sunday back in the pulpit 1-8-06.) It was a full house, and lots of happy faces. God is so good to us.

He had his third (and final for a while) bronch Wednesday, and NO REJECTION & NO INFECTION. YEA!

Take care, jan
wife of Greg (cf'er w/cepacia, tx'd 10-3-105)
www.standinginthegap4greg.org

 

[JennifersHope]

I am not saying they totally excepted him... they said they would consider it.. if he meets certain requirements.... they want to do their own evaluation ...even though he already just had a work up in MN...... He has to be able to endure their outpatient.....transplant eval...... or at least that was the last word I heard...... and that is a few day long process.. I guess they want him to be stonger....He is getting stronger...and I have no doubt he will make it...


Pray with me that he does....

 

[coltsfan715]

deleted by coltsfan715

 

[JennifersHope]

Thanks Lindsey.. I appreciate it.... Now for a good day tomorrow as well... I am going to the doctors directly afterschool.. He is waiting for me on his lunch hour..... (talk about going to the hotseat) and somehow I have to convince him to clear me for school clinicals for a few more days..till I can get in with my CF dr on THursday....who I know will clear me without a doubt....

.I have used my vest so much the last few days that I swear even when it isn't on.. it still feels like it is.. but I have to say..I think my lungs have cleared up quite a bit......


keep my in your prayers..that I get cleared for school and that I am able to clear up the mess I made with my doctor last time we talked...he really is a great primary doctor... I hate to think me having a crying fit ruined things.....


Jennifer

 

[Allie]

Oh Jennifer, you're in my thoughts. I know you'll get through this and make a great nurse.

 

[JennifersHope]

Thanks Allie.. I have a lot more peace about things now... and I am just going to trust God ... He got me this far.. He will get me though all the way...


I can't wait to post tomorrow afternoon and let you know how it all WORKED OUT....


LOve
Jennifer