Need some answers

[Kimmiek]

Hello again everyone,
I have been on and off this site for about 8 or 9 mo., but I have not posted for a while...
My brother has CF and is 28 now. He lives with me and I have been his caretaker for the last year. He has been in and out of the hospital over the last year and has been through so much. Through all of this I have tried so hard to stay strong and be supportive and always keep him laughing. We've had lots of ups and downs, a few trips to ICU for (forgive the spelling) sini-tacnicardia, psuedomonus exasperations, and MRSA. He has CFRD, and all of you were very helpful to me in understanding how very different it is from the norm. diabetic.

It wasn't until yesterday I finally lost it. He had had sinus surgery mid-last week and yesterday they had to put him on a ventilator last night. They keep telling me "this doesn't mean it's over" and "hundreds of people recover from this". I am not so sure I believe them. He's been through so much over the last year. I HATED seeing him yesterday hooked up to all those machines, not breathing on his own. Apparently he had some kind of exasperation after his surgery (so they say). In my heart of hearts I don't believe he was strong enough to have the surgery in the first place. There current diagnosis is that his lungs were filled with fluid, and they "suctioned" them out last night. They are running more test to make sure all of this is due to an exasperation of some sort.

PLEASE BE HONEST. My question would be, have any of you known anyone with CF who has been on a ventilator (other than for surgery) and recovered?? I want to know the truth. I hate that the doctors make me feel like a bimbo sometimes. Don't they know I've been there the whole time and understand more about Mike and his condition then they probably do?? I don't know why they don't listen to me sometimes, it gets pretty frustrating.

Please say a prayer from my brother.

 

[thelizardqueen]

I believe that one of our regular members Hairgirl was just recently on a ventilator, and came off of it, and should be home soon.

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Your brother is in my thoughts. I hope he recovers soon!

 

[EnergyGal]

I would trust these doctors. They will tell you what they think they know is going on. Sometimes they simply do not have the answers. I can tell you one thing that is important. Be there for your brother as much as possible and keep him calm. The stronger his spirit the stronger his chances of coming off the ventilator are. When someone is so weak they need to get as mentally strong as possible. Do not worry what will happen just think of getting him well through your voice and spirit. Believe me it is worth it all. If you worry he will sense that and get scared. It is so strange but when someone gets sick their senses become stronger.

 

[Kimmiek]

Thank you to both of you. At least that gives me hope. Apparently I can not visit until 8:30am. I am going to have a cup of coffee, and relax for a few. And go back to the hospital and do my best to be strong. I realize he needs my love and support now more than ever.

Thank you again to all of you for our support. I am so glad that someone started this forum for friends, family and all of you living with CF. It has definately helped me care for my brother, and helped me understand CF in a different way.

I will keep all of you posted.

 

[coltsfan715]

Kimmie,

I remember reading some of your posts about your brother. Unfortunately I do not have much to offer in the way of advice because I do not know much about vents. I am just so sorry this is happening and want you to know I will be thinking of you and and your brother and praying for you both.

Please take care and know you are in my thoughts.

Lindsey

 

[EnergyGal]

I wish my sister was half as nice as you. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You are so blessed to have one another.

 

[lovingBenandCambree]

I was on a ventilator over nearly 2 1/2 years ago and have recovered quite well. I an back to baseline of where I was and feel great. It was a scary time for me and hard work to get back to where I am now, but I did it. I pray that all with work out with your brother. Please keep us posted.

 

[Diane]

I also have read of someone who was on a ventilator after a bronchoscopy. She did recover fully. Risa, is right, make sure not to let your brother know you are worried, just remind him this is a bump in the road and he will recover. Give him a goal to look forward to, maybe mention doing something he really loves to do after he gets off the vent and back home, it may help keep his mind focused on recovering . I will keep you and your brother in my prayers. <img src="i/expressions/rose.gif" border="0">

 

[Asexyblond23]

2 1/2 years ago they flushed my port when they admited me for a routine tune up and it sent me into respitory arrest. I had to be put on a vent. I was only on for 2 days but I came off of it fine and had no scars from it. After talking to my doc he said that alot of the time the docs will resort to a vent so quickly b/c they want to make it as easy as they can on us to breathe and recover from whatever happended to us. Sometimes if we are haviing some trouble breathing they will put u on the vent so tha you can focus and use your engery to get better and not worry about breathing. So just b/c he went on a vent doesnt mean that this is a terrible thing. I dont know his whole situation but this may be just a way for his to recover and not have to use all his engery on brething. But YES people go on a vent and come off them and do just fine!!

 

[Debi]

I was on a ventilator for a week almost 9 years ago after a particularly bad pseudomonas exacerbation. No question it is a scary experience, both for the patient and for family and friends. However, sometimes the lungs just need the benefit of having a machine do the work for them for awhile. I don't want to suggest it's easy, because it is not, but I also want to reassure you that being on a vent does not automatically mean the end is near. It took the doctors and my husband a long time to talk me into going on the vent because I thought once I got on it I would never come off until I died. Only when one of my doctors, who I trusted implicitly, convinced me that he was 99% sure he would be able to get me off of it did I consent. And, thank goodness I did.

Try to keep your brother comfortable, reassure him that this is a temporary setback, and encourage him to hang in there while his lungs take a brief vacation.

In the meantime, visit the site frequently because there are so many supportive people here to get you and him through this.

Debi
54 w/cf

 

[Scarlett81]

I think you're gettin some good advice here so far. I've never been on a vent, so I can't relate. My only other thought which was touched on, was try to be optimistic for his sake. If the docs haven't said that all hope is lost, then that means there still is hope. All I can tell you is that the mind plays a very big role. Sometimes if you believe you'll be ok and go back to your old routine, I don't know, something just kicks in.
Basically, being strong and believing will only do good. I'd tell the docs, or a social worker, or anyone you feel you can-exactly how you feel and what your worries are. Thats' what these care workers are here for. Not just the patient, but the family as well.
Try to be optimistic, humorous, and sure when you are around him.

Take Care and let us know what happens.

 

[anonymous]

My thanks to all. So far, I have yet to speak to his CF docs. The clinic is AWESOME and everyone is very supportive and they always take the time to explain everything to me. I they will be my first call in the morning. The Critical Care doc and nurses who were there today did not give us much information at all. However, the nurse and doc who were there last night will be there tonight as well. I plan to call them in just a bit after shift change, they seemed a little more apt to take the time to explain what is going on. I spent all day there and just came home to take care of my 5 year old cutie. It is officially her 2nd week of kindergarden!

They have him on some type of air bed. Which moves him from left to right. After his bronchoscipy (sp) today, his sat kept dropping when it would rotate. So they stopped. They are having a hard time keeping him sedated, and he keeps waking up and thrashing about. They tell me that is normal, but I finally won the argument with the docs that he needs more or a different type of medication. I just don't want him to be in any pain through all of this. From what little I could get today, they have him on Vanco (yuck), Cipro, and two other newbees just to cover all the basis. They said he is culturing a "new" strain of psuedomonus (which I am sure the CF clinic will explain in more detail to me tomorrow). I asked if it was cepecia and got a "deer caught in the headlights" sort of look.

I am glad to have all of you to talk to. After reading your posts this morning, I felt ALOT better. Even though I know everyone's situation is different, I feel there is hope he will recover from this one. I was able to go there today with a whole new attitude then I had the night before. Mike's a fighter, that is for sure! He's sedated and still fiesty as all heck. So for now, I will say lots of prayers and try to take one day at a time.

Until tomorrow!...
Kim<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Kimmiek]

I am sure you all know, the above was me...but apparently it logged me out somehow...<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[CFparent]

Kim,

As a parent of a 4 year old son, I commend you on your strength and spirit in the fight against CF with your brother. I have gone down some dark roads in my mind the past few years after reading some forums. I wish you and your brother all the best and just hope my wife and I have the strength and courage you have had to deal with your brother and his recent events. You are one hell of a sister! Keep it up!
Matt

 

[Kimmiek]

Yesterday was not a good day. The CF docs are saying we are nearing the end of the "window" on which Mike can tolerate the vent.

We made the decision yesterday to put him on a different kind of bed called a prolinator (sp). Basically it puts Mike in a face down position while rocking him from side to side gently for 4 hours then back to face up for 1 hr. They say they have seen it work miracles in people with severe lung disease. Apparently, it takes the pressure off of his lungs and helps clear them out. Mike would have done it, I am sure. I took a picture yesterday of this amazing piece of machinery. Sometimes medical technology amazes me. But I did it because, should anyone else be in this position someday, I want all of you to know what it is. It is new, and not used yet in all parts of the country. They say 3 to 4 days on this bed.

I keep praying, if they can just get him well enough to be considered for transplant hopefully we would be out of the woods. We keep cheering him on, and telling him he can do it..and if anyone I know has the will, it's just who he is.

Today is a new day, and I am heading back to the hospital. Thanks once again for all of your support and prayers.

 

[JohnnaMarie]

Kimmiek:

I have a younger brother that is about 5 years younger than me. He has CF too much worse than I do. I can imagine myself in your situation. I would want to know that the docs are doing all they can to help him. Sounds like you have a great team there fighting for him.

Stay strong for your brother. He needs you and you are one awesome sister and friend. He is very lucky to have you. He will be in my thoughts a prayers. I know he is a fighter and he will do all he can. You stay strong and try to give him some of that strength.

I will pray for the doctors to have insight on what the best way to treat him is and for you to have much courage and strength for him.

He has alot of people batting for him.

HANG IN THERE MIKE!!!
<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

You are a wonderful and caring sister. I know some day my daughter will be just as great to her little brother with CF. THey are so close now. She is 12 and he is 9. Luckily she doesn't have CF - she is very protective of him. They even missed each other when school started up again. So cute!! Wishing you the best of luck!! You deserve a big hug!!

Mother of 9yr old boy wcf

 

[goingup]

at least your brother and you have a relationship..... my bro24,
with cf, wants  NOTHING  to  do with me or anybody
for that matter... i am 30 years old  and have just now given
up on him!!! i couldn't take the hang ups and the rudeness when i
called him, so i just changed my phone number, which he never calls
me anyways, only when he thinks he is dying, then when he starts to
feel better, he is a PUNK ALL OVER AGAIN.... so enjoy your bro for
me, since i am unable to myself<img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/wine.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/sun.gif" border="0">