"Mandatory" glucose tolerance testing?

[nmw0615]

Bill,

Sometimes, your no nonsense approach to CF and everything that comes with it is appreciated. When people are looking for only the facts in order to make a better decision for them and their life, you are one of the best voices on this site.

However, the sarcastic comments on threads where people are looking for support instead of facts are extremely counterproductive, and in some cases can be hurtful. People do not use this site to only get the facts of CF life. They come here to find people who can sympathize and offer other perspectives when it comes to the tough parts of the disease.

Not once did I see Sara post that she was obviously smarter than everyone. What I read was she had an extremely bad experience the last time she had the glucose testing done, and it worries her about going in for more. It appears to me like she knows what CFRD can do, and wants to avoid it. She stated she wanted a little more time to come to terms with her horrible experience and had worked out a system her doctor was okay with until the time comes when she feels comfortable taking the glucose test again. She wanted support, not to be berated for the choices she is making.

And as for her not telling her parents, she had said she had not had time to tell them before the diabetes education nurse came in. Not once did she say she wasn't going to tell them. Not being able to tell them in a rushed fashion does not mean leaving them out of her life, or thinking she is smarter than they are.

I'm sure you will have a sarcastic response to this post, because that seems to be your posting go-to. To beat you to the punch, I don't know everything. I don't know more than my doctors. I don't understand all the intricate parts of this disease. I do know, however, know how much of a toll this disease can take on a person mentally if they don't have enough support. That is why I love this site. The support it offers. So please, take your berating posts and keep them to yourself. They don't help anyone. If you want to offer help, lose the hurtful sarcasm and offer help. You don't have to agree with posts, but be a decent person and stop insulting others when their views do not line up with yours.

To Sara:

I get what you mean with the glucose tests. They aren't pleasant in any form or fashion and waiting for the results always stresses me out. I'm glad you've come to a workable solution for the time being and I hope you're able to fight past the bad experience for your future health. I'm sorry you and your clinic don't have a great relationship. That relationship can really make or break how you treat yourself and your disease. Hopefully in time you can find some trust in individual people to make your life a little easier when it comes to treatments.

 

[Printer]

nmw0615:

If you read my FIRST POST to this thread you will see that I tried to help and support Sara.

Sara is on track to end her life through self neglect. If you, or others, wish to support that, God bless you. I will have no part of it.

Not one single CF or other patient likes or invites the type of testing that we are REQUIRED to go through, but to survive, we do it. Trust me, survival is something I know something about. I disagree with your interpretation of Saras posts, Sara is saying that she is smarter than all of us. She knows more than the Doctors who are ordering these tests, and she will punch a nurse. CFRD, untreated, is deadly. She is chosing deadly over what are MINOR tests in the CF world. Almost every CF test that I have ever had has been "unpleasant" (I'm still looking for a pleasant test), that is not a reason to refuse.

God bless you for supporting her.

Bill

 

[SaraNoH]

nmw0615:

If you read my FIRST POST to this thread you will see that I tried to help and support Sara.

Sara is on track to end her life through self neglect. If you, or others, wish to support that, God bless you. I will have no part of it.

Not one single CF or other patient likes or invites the type of testing that we are REQUIRED to go through, but to survive, we do it. Trust me, survival is something I know something about. I disagree with your interpretation of Saras posts, Sara is saying that she is smarter than all of us. She knows more than the Doctors who are ordering these tests, and she will punch a nurse. CFRD, untreated, is deadly. She is chosing deadly over what are MINOR tests in the CF world. Almost every CF test that I have ever had has been "unpleasant" (I'm still looking for a pleasant test), that is not a reason to refuse.

God bless you for supporting her.

Bill

I'm only every going to punch someone if they try to take blood from my wrist. Have you ever had that done? It's extremely, extremely painful. Since you are so good at sarcasm I thought you'd see it when I first mentioned that minor issue.

For the record, my CF is very, very, very mild. I've been remarkably healthy for 19 years and only in the past 2-3 have things been picking up. So excuse me if I'm still adjusting to this, even after all this time. If I were choosing death by neglect I would be posting asking which type of cigarette I should buy. I really don't understand the point of your beratement of my concerns. Does bringing down a young adult coping with a disease satisfy you? Do you think I need to be put in my place? God forbid I live to the age of 72 and act as you have. I'd rather be dead.

 

[beautifulsoul]

I'm only every going to punch someone if they try to take blood from my wrist. Have you ever had that done? It's extremely, extremely painful.

I've had that done before when a nurse insisted on that was my best vein. I know what you mean. It's painful! I had a bruise the size of a half dollar and soreness after that blood draw.

I've refused numerous testing procedures in the past that I thought weren't necessary or pure torture and I'm still here. I've been through many unpleasant experiences and sometimes enough is enough in certain situations. I have no idea what Bill is trying to argue about with this topic.

 

[SaraNoH]

I've had that done before when a nurse insisted on that was my best vein. I know what you mean. It's painful! I had a bruise the size of a half dollar and soreness after that blood draw.

I've refused numerous testing procedures in the past that I thought weren't necessary or pure torture and I'm still here. I've been through many unpleasant experiences and sometimes enough is enough in certain situations. I have no idea what Bill is trying to argue about with this topic.

I've heard from nurses that it's the most painful spot to draw blood and no one likes doing it. The skin is so thin and sensitive there.... ouch. The last PICC line I had the home health phlebotomist came out (I thought she was the nurse) and she said she'd have to draw blood from my wrist and couldn't access my PICC. I definitely refused that one. What's the point of having a tube in your arm if you can't get blood out of it?

 

[beautifulsoul]

I've heard from nurses that it's the most painful spot to draw blood and no one likes doing it. The skin is so thin and sensitive there.... ouch. The last PICC line I had the home health phlebotomist came out (I thought she was the nurse) and she said she'd have to draw blood from my wrist and couldn't access my PICC. I definitely refused that one. What's the point of having a tube in your arm if you can't get blood out of it?

Well, a PICC is mainly for antibiotic use and extra fluids but I can understand the frustration of not drawing blood from it. They were never able to get a good blood sample from most of the PICC's I had.

 

[Printer]

Sara:

You may not believe this but my history of having invasive and painful tests done is pretty extensive. Before I was dx, at age 47, and had about 70 hospitalizations in 10 years, my life was miserable and painful. It is'nt much better now.

Your life, with CF, will continue to be filled with painful and invasive procedures. I see the very young children at Childrens Hospital, children less than a third of your age having blood drawn. There are moms and dads out here who can tell stories about that.

You are not unique in having a life that is full of painful procedures. You are unique in being 19 and acting like a 6 year old.

Bill

 

[SaraNoH]

Sara:

You may not believe this but my history of having invasive and painful tests done is pretty extensive. Before I was dx, at age 47, and had about 70 hospitalizations in 10 years, my life was miserable and painful. It is'nt much better now.

Your life, with CF, will continue to be filled with painful and invasive procedures. I see the very young children at Childrens Hospital, children less than a third of your age having blood drawn. There are moms and dads out here who can tell stories about that.

You are not unique in having a life that is full of painful procedures. You are unique in being 19 and acting like a 6 year old.

Bill

Did I ever say that I thought I had it worse? No. I know very well that I got off lucky. That doesn't mean I'm not human and don't have nerve endings. You know most of us actually have it better off than millions of others out there who are afflicted with diseases or situations so horrific we can't comprehend the gravity of their situations. You're no more special for what you've gone through, none of us are. We don't get the privilege of saying "You don't have it nearly as bad as me, so suck it up." You are unique in the sense that I've never come across someone as sour as you. Really, what are you trying to say to me?

 

[nmw0615]

I've heard from nurses that it's the most painful spot to draw blood and no one likes doing it. The skin is so thin and sensitive there.... ouch. The last PICC line I had the home health phlebotomist came out (I thought she was the nurse) and she said she'd have to draw blood from my wrist and couldn't access my PICC. I definitely refused that one. What's the point of having a tube in your arm if you can't get blood out of it?

Well, a PICC is mainly for antibiotic use and extra fluids but I can understand the frustration of not drawing blood from it. They were never able to get a good blood sample from most of the PICC's I had.

I've never had much luck with the veins in my wrist. PICC lines have never been a problem for me (fingers crossed it stays that way), but any time I've had to get an IV or blood drawn from my wrist, you'd think my blood veins had become possessed by the Devil. Thankfully, the only blood test I currently get that can't be drawn from the PICC is the Tobra levels. I know that'll eventually change, but I really hope that day is a long way off.

 

[JustDucky]

I agree, blood sampling from the wrist is painful, hurts like hell....I've had many horrible procedures and STILL will refuse a blood draw from the wrist. You know, I think I would rather have a cardiac cath (have had 3) rather than get blood drawn from my wrist....As far dealing with the testing, yes it is important but it is your call and ONLY your call, no one else's. Having such a traumatic experience in the past would make anyone hesitant doing it again with the possibility of another repeat disaster. Perhaps using a glucometer monitor to check your sugars at home at regular intervals over a period of time would be less traumatic for you. The finger sticks are virtually painless, require very little blood and by doing a log over let's say, a month's time will give the doctor some useful info regarding any fluctuations in your sugars. I know that this is off topic, but I have heard of people with CF who had false negative OGTT,s and were ultimately diagnosed because they kept meticulous logs that showed the spikes in their sugars. So, perhaps you could discuss that possibility with your doctor if he/she is concerned with CFRD.

Good luck,

Jenn 40 wCF

 

[CyrilCrodius]

Sara, you tell them. Who the hell do they think they are? If you have CFRD or if you get CFRD that is your business and if you die, you die. Someone will post a notice here asking that we will pray for you and you will have a nice funeral. Your friends will all say how wonderful you were. They will talk about the great fight that you put up befure CYSTIC FIBROSIS KILLED YOU.

Whatever you do, don't tell your parents. They may want you to live and at age 18 you are smarter than they are. Hell you are smarter than everyone.

My question is, why did you post here? You know more than all of us.

My question is, what the f*ck is your problem?
It's the second time I see you reply something totally uncalled for, impertinent and irrelevant like this. Last time was when I was replying to someone and you stepped in, out of f*cking nowhere, and said something like "well clearly you know more than my doctors at Boston Hospital what's good for me" .... what the fuck?

 

[TheDude92]

I've always had bad luck with peripials in the top of my hand. The sailene would cause inflamation in my entire viens up my arm now that was painful. My question is instead of the wrist why not draw blood on further up on your arm? As for PICC's well to much scar tissue landed me a Port ,which is not bad I may add, you don't let one strike out keep you from playing baseball or whatever you get the gist. I think as humans we have to get use and tolerate pain. I use to hate drawing blood from my arm anymore it does not bother me. Just got to stay strong that's all

 

[Printer]

Cyril:

I understand your problem. It is not easy going through life without the ability to communicate your thoughts without reverting to swearing.

I don't know how old you are, but it is not too late to take a remedial english course at a Community College.

Bill

 

[SaraNoH]

Cyril:

I understand your problem. It is not easy going through life without the ability to communicate your thoughts without reverting to swearing.

I don't know how old you are, but it is not too late to take a remedial english course at a Community College.

Bill

That's enough. I'm requesting this thread be locked or deleted. Nothing good is coming of it and obviously some cannot conduct themselves in a respectful manner on the internet.