My friend John

A

AllansGirl

Guest
(((Hugs to both of you)))

I wish there was something I could say that could make you feel less helpless, Jennifer. We are all here for you, though. Message me anytime if you want to talk. I would bet anything that John knows how much you care. He also knows that Cepacia is a huge risk and understands that is the reason you cannot be with him right now.

If there is anything I can do to help, please let me know. I will be pulling for him and you will both be in my thoughts.


Jessica
 
J

JennifersHope

New member
Thanks... i am glad he has so much love around him.. that does make me feel better... but I still want to be there.. I am so used to talking to him everyday... sometimes several times a day that it is werid... Like something happened at work tonight and I kept thinking that I couldn't wait to tell him about it.. then I remembered that I can't really tell him now ..maybe if he starts to feel better...

I started making a list of all the things I want to tell him.. DOrky things about my day...so just in case I can tell him.. John is such a great friend and he always put my first.. there are very, very. few ppl in my life who do that.. who dont have alter motives toward me....he didn't want anything at all from me...nothing.. he didn't want me to do anything for him..want anything.. other then my friendship.. which I so easily gave.....
I am pretty much gulible and will do anything for anyone.. He is one of the few ppl who cares about me and my well being....Oh crap he comes the tears again...

I miss him even though he is still here.. I am still believing he is going to pull through.. He is such a fighter...The only thing I notice with me.. is I seem to be mad at the world right now... Mad at ppl for not realizing how precious life is


anyway going to bed

night night
 
J

JennifersHope

New member
Thanks for asking... THe only new news isn't good news.. He is now retaining C02 and his levels were pretty high..with that come confusion, and severe headaches... Yesterday he has a real terrible day he spiked a fever up to 104....I think they got the fever under control. now but he isn't eating or anything.. and when he does he throws it up.

Today I think that he is holding steady..just sleeping a lot not up to much... unless someone speaks loudly to him.....

That is about all I know for now...it breaks my heart not to be there esp cause my friend Jenny that is there with him told me she wishes I was there.... I just don't have any money in my account to go or I would be there in a second... I have to see how much I get paid this next pay check... I also have school starting next tuesday.


Thanks again..it is so sad.. I don't think I have cried this much in years...I can't ever remember crying this much..Thankfully I have good friends that let me call them and just blubber to them .....

I will keep you posted if you want..


Jennifer

PRaying for a Miracle for John
 
A

anonymous

New member
Thanks for the update. I've been bouncing back and forth between this site and CF2Chat to read updates.

I don't know John but can tell how much you care for him and am praying that he fights his way back.

Has there been any transplant options yet? Are they still looking into that for him? I know you said that the doctors said it was a long shot but is it a long shot just because of his cepacia or a combination of being end stage, organ availability and cepacia? I only ask because you said he's been pretty healthy and active as well as compliant up until recently.

Charge the ticket and go if that is what you need. <img src="i/expressions/heart.gif" border="0">
 
J

JennifersHope

New member
Transplant is not out at this point.. His doctor sent his case to several CF transplant teams and they are waiting to hear back.. If he is to get transplanted it has to happen fast.. but with the new laws, he would go right to the top of the list.... Just having a hard time finding anyone to get him listed..

I know I could charge the ticket and go...I will see I am waiting it out for the next few days... that was the deal we made we would give it five days to see what happeneds... and by then we should know results from the centers,,,,


Jennifer

Believing for a miracle for John
 
A

anonymous

New member
I will amend my prayer not only for John to pull through but for strength for you and all his loved ones and for a transplant.

Please keep posting updates. <img src="i/expressions/heart.gif" border="0"><img src="i/expressions/rose.gif" border="0">
 
A

anonymous

New member
My daughter was in ICU last April on Bi-pap. She was at close to death as a parent wants a child to come. The doctors told me that they wouldn't intubate her (placing on a ventalator), because that doesn't help. She made a wonderful recovery, we had prayers coming in from all over. I'm sure it's the prayers that brought her back to us. In the last months, she has been evaluated and accepted, at two transplant centers. She has been able to enjoy most of the things that she did before. Has a few limitations, but she is still here, and I know that God has a purpose for her. We have every confidence that she will be transplanted, and be able to enjoy life.....better than before.

My prayers to you and John.

Mom of a 22/cf
 
A

anonymous

New member
Hey Jen,

How was last night for John? I'm worried about him since you said he was retaining CO2. All your updates are appreciated.

<img src="i/expressions/rose.gif" border="0">
 
A

anonymous

New member
Yes how are things going with John. I was thinking about you two last night. I hope things are looking better.

Take Care,
Lindsey
23 w/CF and CFRD
 
A

anonymous

New member
I'm worried about Jennifer and her friend John - it's not like her not to be online at least once a day.

Jennifer - I'm thinking about you and praying. <img src="i/expressions/rose.gif" border="0">
 
D

Diane

New member
I havent stopped thinking about her friend John since i first read this post. It bothers me a lot and i will continue to pray for him . I hope we hear of some improvement soon <img src="i/expressions/rose.gif" border="0">
 
J

JennifersHope

New member
You guys are the sweetest things in the whole wide world.. it made me cry when I got home to read this....I was working today and I got sent home sick which made me cry all the way home...because I am so close to the hiring process and their is such limited spots where i want to work so it doesn't look good to get sent home..and it causes me so much anxiety.

I have only had limited conversations with Jenny today as to how John was other then that he had another bad night.... I got to talk to him last night and it made me smile from ear to ear... I don't have an official update yet I am still waiting for them to call me back to tell me..but talking to him was so wonderful.....I told him about some of the posts that have been made.....

THanks again.. when I get the phone call back I will repost the latest.. thanks again...

I am going to the dr tomorrow, I may be admitted into the slammer for a few days and if I am, I won't have internet access..I am about to go to school again next week.. and I can't seem to shake this fever.. and now my cough is real, real bad.....walking a few feet is setting me off into paroxsmal coughing spasms...so I am assuming I will go in for a few days to get me back on track before school next tuesday.....I will try to let you know..maybe they will just do at homes.. and that would be great...

Thank you so much as I was driving home tonight I was feeling so overwhelmed I tried calling my close family..no one was around... and I certainly coudn't call John to complain.. so it was nice to feel loved.....


Jennifer
 
J

JustDucky

New member
As I sit here, I am praying for John, but now I am thinking of you as well. I hope your Dr's visit is productive and that you don't have to go into the slammer....but, you know your body pretty well at this point. I will be praying for you...I know that you also take it day to day, I hope your fever breaks soon. Please know that you are being thought about (as well as John, so glad you were able to speak to him) ((((((Jennifer))) from the other Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Diane

New member
Jennifer ,
I am so glad you got a chance to talk to John. I know that must have made your day. I hope you can avoid the in hospital iv's and do them at home, its so much more comfortable at home. I'll keep both of you ( you and John) in my prayers. Feel better soon !! <img src="i/expressions/rose.gif" border="0">
 
A

anonymous

New member
Has anyone heard if Jen was admitted to the hospital or not?

Jen, if you weren't is there any update on John?

Take care of yourself and get better soon.
<img src="i/expressions/rose.gif" border="0">
 
M

Marjolein

New member
Jenn is in the hospital. On another website Jenny, John's girlfriend, has written an update.

This is an update on John, my beloved best friend. He is still in the hopital and still very weak. The doctors are being very aggressive in treating his pseudomonas and cepacia. They have recently started him on iv lipids and iv procalamine which contains some sugar and protein. With his continued weight loss he needs all the calories he can get. The nausea he has is more than likely from all of the meds he is on but the good news is that he hasn't thrown up for 2 days.
I continue to remain in the hospital bedside with him because he needs help with everything and I am trying to be his advocate with getting everything he needs to be comfortable. The last few days were very frightening for everyone because he experienced high levels of Co2 and looked terrible. I have to say, seeing my love confused, lethargic, and hard to rouse ripped my guts apart. But thankfully, he has come out of that episode. The steroids have started to kick in and for the last 2 days, he seems like his old self in small ways.
Please continue to pray, send your thoughs and well wishes that transplant will remain possible and that he can stop the decline that he is in.
Jenny
P.S. Jenn (Hope) is in the hospital as well, she is having a flareup and needs our support.<i>Text</i>
 
A

anonymous

New member
Jen, so glad you are home! I hope you are feeling better. I know you have to be stressed out with missing the first two days of school and all. Hang in there - good vibes coming your way~~~~~~~~~

Is there an update on John?

<img src="i/expressions/rose.gif" border="0">
 
J

JennifersHope

New member
Hi,

John was online looking at posts tonight when I called. I haven't had the chance to talk to him in days which makes me nuts....Jenny made a website with his daily updates but I can't remember what it is right now.. I will post when I do...He has pluersy..which is the source of much of his pain.... I think things are are progressing along slowly.. A hospital nearby agreed to evaluate him but he needs to be well enough to go through evaluation... which right now I know he is working very hard at getting there...

Marjolen thanks for posting from the other site, at the hospital at was at, I didn't have online access... I didn't hardly get to talk at all to anyone.. I was so tired and out of it....

I am very ashamed and it iss very hard for me to complain about anything..when I look at the strength and determination that John has to fight for his life... I wish I had half that fight in me...I admire him more than he could ever know... he just fights and fights and fights...He is truly a champ in my eyes.


I missed you guys.....Have a great night.

Jennifer
 
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