Feeling really down and frustrated

M

melleemac

Guest
Well, we just got back from the boys clinic appointment and it really sucked! I think after their last appoinment 2 months ago I thought thing were on the up, boy I was wrong>
Both boys pfts dropped, and not just a little either, so has their O2 sats. Both of them have lost more weight. One little guy has an enlarged liver and has to go back for an ultra sound. The same little guy who has been suffering from headaches since December has to go for a catscan for his sinuses and head, and apparently there is something wrong with his left eye. We are waiting for results for therir cortisol level as they are both hydrocortisone dependant, and also waiting to hear from their x rays they had today as the other little guy is having stabbing pains in his lungs.
At this point Im just so frustrated. Im feeling no matter what I do its not enough.
Grrrrrrrrrrr! Thanks for letting me vent.
Mel
 
A

anonymous

New member
You poor thing! I'm sure you're doing all that you can do. It just sucks!

I don't know what to say, just hang in there I suppose.

Charlotte<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
3

3timesthefun

New member
I am so sorry you had a bad CF visit. That really stinks. I hate going to clinic. They always seem to find something to bring you down. Hang in there.
 
A

anonymous

New member
Mel, I am so sorry to hear your visit was so hard. Soon, the shock of it all will turn into determination to make them better! They will get back on track! Sounds like they are on their way to making some prognosis which will only help them to get the proper treatments that they need.

My thoughts and prayers are with you. How old are your boys?

Karenb ~ wife to Troy (37 with cf)
 
J

Jane

Digital opinion leader
Mel, I'm so sorry about your appointment. That just sucks the life out of you, when you do everything right and everything goes wrong. I know how you're feeling. Hang in there (easier said than done).

Has your son ever had surgery on his sinuses? When will you hear back from your doc about the plan for making them feel better? Hopefully it will something easy.

Let us know!
 
M

melleemac

Guest
Hi and thanks for all the support!
Jane, the boys are going to be 12 in August. They have had a rough time from the start. Every time we get over one hurdle another seems to be right beside it. They have been through so much in their young lives but always stay strong, they have such a great sense of humour, lol. They have really long hospital stay, the longest being 5 months. Sometimes I swear when we go to the clinic that they look for something else to be wrong with them!
Their bodies do not produce cortisol, which is a life substaining hormone. Basically the hormone kicks in when you are sick or injured, it stops the body from going into shock. The Drs think that their bodies stopped producing it because of all the steriods they have had pumped in them from the time they were three months old. Thats the hydrocortisone dependency, they take 7.5 mg of cortef a day, more if they are sick.
Ill be calling the hospital on Monday for any results that may be in, if I dont hear anything before hand. The ultra sound and the catsca plus more x rays are not until 19th of June, so I guess Ill be going out of my mind until the!
No, my son has never had sinus surgery, the catscan I guess is the next step to see why all the head aches and dissiness. Hes already been checked for CFRD, his eyes and hydrocortisone and they all came back the same. Both boys have suffered alot from polyps but never had surgery.
Thanks again
Mel
 
A

anonymous

New member
Mel,

I think you may have replied to me at some point as well as vice versa (Did that make sense?) Anyway, I know the road with CF has been very difficult for you and I can relate, as it has been difficult for my daughter as well.

I know the feeling that you work so hard to keep your child(ren) healthy and CF can seem so relentless. And somehow it (CF) also manages to make you feel like you are not doing enough.

BUT we are doing EVERYTHING we can. We must always remember that. The smiles in our children tell us that everyday. I tell my daughter everyday that I love her and that I thank God that she is mine. She is only three and yet she makes me smile everyday -

Today we saw something on the television about an angel. She had beautiful white wings and Sami said, "I wish I could be an angel with pretty wings." I replied, "You ARE my angel." She said, "But, I don't have pretty white wings," and I said, "You don't need white wings, you're mama's angel just the way you are."

Stay strong and know that you are not alone in this fight,

Maria (mom to three girls, the youngest Samantha w/cf)
 
A

anonymous

New member
Hi! I would just like to say that my heart goes out to you. I know that when my son (age 2 1/2) goes to clinic it takes me a few days to get my positive attitude back. Even when everything goes good at clinic....it's just something about it that tries to bring me down. Maybe it's the hopeless look in everyones eyes...I dont know...cant really put my finger on it. All i know is that I am not hopeless....I am hopeful!! Just wanted to let you know their are others who understand!
 
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