Re: feeling down

[Guest guest]

Hi "Raz" (sorry I don't know your real name)

Thank you so much for understanding and for taking the time to respond.

It always helps to hear that I am not alone in how I feel.

My Dad's not a "talker" and like most men, doesn't really know how to express his "feelings" which makes it tough to know how he feels and how best to support him.

I continue to do what I can to help him and to keep my chin up. I thank God every day that I have all of you for support.

hanging in there,

anne (dad ipf 03/06)

Re: feeling down

Anne,Being also a daughter of a parent with IPF, I know exactly what you are going through, as I am sure everyone here does as well. The frustration, the feeling of helplessness and the depression we all go through when dealing with this. No child wants to watch their parents suffer. No parent wants to tell their child they are dying. I have personally come to realize that with drug therapy, clinical trials, lung transplants, etc., they are just trying to utilize what ever resources we have availabe and just hope that it is enough to slow this disease down. Being in a world where we are driven by technological advances, yet we can not save a human life is frustrating and depressing. The only thing I know to do with my mother is just listen when she needs to talk, be supportive of her decisions (even if I don't agree with them) and keep encouraging her to keep fighting and don't give into this. I think the hardest is too see our parents as they are now and not how they were. Try to encourage your dad to go for walks, even if it is to the corner and back. He needs to stay as active as he physically can. My mom sleeps alot too. Minimal activity can wear her out. Just keep in mind that it may take time for the medications to work and just stay positive.>> Hi all,> I'm just needing some support today. When I first found this chat, > I was a mess, anxious, scared, and sleepless. After talking to all > of you, I started to feel better and generally just more calm. Over > the past week, the anxiety and sadness is creeping back in. I'm > sure that with anything like this, emotions are like a > rollercoaster. My Dad was doing pretty well on his meds for about a > month and he actually was feeling like he had a bit more energy and > was less tired--i understand that is a common early reaction to > prednisone. Since then, he has developed thrush--not the end of the > world, I know. Now, he is having to urinate almost hourly and is up > 4-5 times per night. I just know that this is going to stop him > from going out as often which is not a good thing. Mom says that > whenever he is sitting on the couch, he is asleep, he's just so > tired all of the time. I'm just so scared for him and for her and > for me. I'm starting to wonder what we are hoping to accomplish > with the meds, and at what cost. I know that we will know within a > couple of months whether they are working to slow the progression of > the fibrosis but the waiting is killing me. I just worry so much > about what the meds are doing to his body. I know that there isn't a > question in all of this, I guess I just needed to tell > someone/everyone how I'm feeling right now.> Thanks for listening,> anne (dad ipf 03/06)>

[Guest guest]

Anne, I am so sorry you are in a reality check period. I just hate that part.

I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away.

Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...

Love and Prayers, Peggy 9/04 ipf

Hi all,

I'm just needing some support today. When I first found this chat,

I was a mess, anxious, scared, and sleepless. After talking to all

of you, I started to feel better and generally just more calm. Over

the past week, the anxiety and sadness is creeping back in. I'm

sure that with anything like this, emotions are like a

rollercoaster. My Dad was doing pretty well on his meds for about a

month and he actually was feeling like he had a bit more energy and

was less tired--i understand that is a common early reaction to

prednisone. Since then, he has developed thrush--not the end of the

world, I know. Now, he is having to urinate almost hourly and is up

4-5 times per night. I just know that this is going to stop him

from going out as often which is not a good thing. Mom says that

whenever he is sitting on the couch, he is asleep, he's just so

tired all of the time. I'm just so scared for him and for her and

for me. I'm starting to wonder what we are hoping to accomplish

with the meds, and at what cost. I know that we will know within a

couple of months whether they are working to slow the progression of

the fibrosis but the waiting is killing me. I just worry so much

about what the meds are doing to his body. I know that there isn't a

question in all of this, I guess I just needed to tell

someone/everyone how I'm feeling right now.

Thanks for listening,

anne (dad ipf 03/06)

[Guest guest]

Anne,

If your dad is on Prednisone, the docs probably have him on Lasix. If so he will be in the potty all the time. I know where every restroom is in three counties! It never stopped me from getting out. If he is up peeing all night, no wonder he falls asleep on the couch! Shopping is a great motivator for women to get out....you just have to figure out what would motivate him. Men are more prone to stay at home than we girls are.

It is perfectly normal for you to be sad. It is so hard for those controlling people like myself to deal with this thing. So many unknowns and no certain outcome or timeline. I always want to know the rest of the story. Well, this thing plays out like it plays out.

I do think it is easier being the patient than the spouse, parent or child. The overwhelming grief just goes on and on. Try to look at each day as a blessing from God. Know that you are doing everything possible to let him know that you love him. You have a sweet heart. He must be so proud of you.

Hugs, Joyce PF 1997

>> Hi all,> I'm just needing some support today. When I first found this chat, > I was a mess, anxious, scared, and sleepless. After talking to all > of you, I started to feel better and generally just more calm. Over > the past week, the anxiety and sadness is creeping back in. I'm > sure that with anything like this, emotions are like a > rollercoaster. My Dad was doing pretty well on his meds for about a > month and he actually was feeling like he had a bit more energy and > was less tired--i understand that is a common early reaction to > prednisone. Since then, he has developed thrush--not the end of the > world, I know. Now, he is having to urinate almost hourly and is up > 4-5 times per night. I just know that this is going to stop him > from going out as often which is not a good thing. Mom says that > whenever he is sitting on the couch, he is asleep, he's just so > tired all of the time. I'm just so scared for him and for her and > for me. I'm starting to wonder what we are hoping to accomplish > with the meds, and at what cost. I know that we will know within a > couple of months whether they are working to slow the progression of > the fibrosis but the waiting is killing me. I just worry so much > about what the meds are doing to his body. I know that there isn't a > question in all of this, I guess I just needed to tell > someone/everyone how I'm feeling right now.> Thanks for listening,> anne (dad ipf 03/06)>

[Guest guest]

Joyce,

Thank you for understanding. I think you might be right about it being tougher for family members than patients. I'm going to be visiting with him tomorrow and will see how he seems. I'll also make sure that we get him a map of all the washrooms at the mall so that there's no excuse for staying home!

Thank you again for your kindness,

anne (dad ipf 03/06)

Re: feeling down

Anne,

If your dad is on Prednisone, the docs probably have him on Lasix. If so he will be in the potty all the time. I know where every restroom is in three counties! It never stopped me from getting out. If he is up peeing all night, no wonder he falls asleep on the couch! Shopping is a great motivator for women to get out....you just have to figure out what would motivate him. Men are more prone to stay at home than we girls are.

It is perfectly normal for you to be sad. It is so hard for those controlling people like myself to deal with this thing. So many unknowns and no certain outcome or timeline. I always want to know the rest of the story. Well, this thing plays out like it plays out.

I do think it is easier being the patient than the spouse, parent or child. The overwhelming grief just goes on and on. Try to look at each day as a blessing from God. Know that you are doing everything possible to let him know that you love him. You have a sweet heart. He must be so proud of you.

Hugs, Joyce PF 1997

>> Hi all,> I'm just needing some support today. When I first found this chat, > I was a mess, anxious, scared, and sleepless. After talking to all > of you, I started to feel better and generally just more calm. Over > the past week, the anxiety and sadness is creeping back in. I'm > sure that with anything like this, emotions are like a > rollercoaster. My Dad was doing pretty well on his meds for about a > month and he actually was feeling like he had a bit more energy and > was less tired--i understand that is a common early reaction to > prednisone. Since then, he has developed thrush--not the end of the > world, I know. Now, he is having to urinate almost hourly and is up > 4-5 times per night. I just know that this is going to stop him > from going out as often which is not a good thing. Mom says that > whenever he is sitting on the couch, he is asleep, he's just so > tired all of the time. I'm just so scared for him and for her and > for me. I'm starting to wonder what we are hoping to accomplish > with the meds, and at what cost. I know that we will know within a > couple of months whether they are working to slow the progression of > the fibrosis but the waiting is killing me. I just worry so much > about what the meds are doing to his body. I know that there isn't a > question in all of this, I guess I just needed to tell > someone/everyone how I'm feeling right now.> Thanks for listening,> anne (dad ipf 03/06)>

[Guest guest]

Caroline,

I'm waiting for the rollercoaster to start going up again! and holding on tight right now!

Thank you,

anne (dad ipf 03/06)

Re: feeling down

Oooops..sorry...my name is Caroline. Yeah..my dad isn't a talker either. When he had his stroke and even 2 years later..it is tough. I think just by being there, even in the smallest of ways, shows that we do care and we do support them. What I would give to find the answers to "cure" both of my parents. What we all wouldn't do to save ourselves and our loved ones!! Nope you are really not alone in any of this. I am beginning to understand that myself. I suppose all we can do is enjoy the better day's we do have and fight like crazy too get through those harder day's.> >> > Hi all,> > I'm just needing some support today. When I first found this > chat, > > I was a mess, anxious, scared, and sleepless. After talking to > all > > of you, I started to feel better and generally just more calm. > Over > > the past week, the anxiety and sadness is creeping back in. I'm > > sure that with anything like this, emotions are like a > > rollercoaster. My Dad was doing pretty well on his meds for about > a > > month and he actually was feeling like he had a bit more energy > and > > was less tired--i understand that is a common early reaction to > > prednisone. Since then, he has developed thrush--not the end of > the > > world, I know. Now, he is having to urinate almost hourly and is > up > > 4-5 times per night. I just know that this is going to stop him > > from going out as often which is not a good thing. Mom says that > > whenever he is sitting on the couch, he is asleep, he's just so > > tired all of the time. I'm just so scared for him and for her and > > for me. I'm starting to wonder what we are hoping to accomplish > > with the meds, and at what cost. I know that we will know within > a > > couple of months whether they are working to slow the progression > of > > the fibrosis but the waiting is killing me. I just worry so much > > about what the meds are doing to his body. I know that there isn't > a > > question in all of this, I guess I just needed to tell > > someone/everyone how I'm feeling right now.> > Thanks for listening,> > anne (dad ipf 03/06)> >>

[Guest guest]

Anne,

I second Peggy's suggestion about the blood sugar concerns. My doctor has had me checking my blood sugar twice a day since I started the prednisone. I only have to use insulin once or twice a week as I've learned to control the ups and downs of my blood sugar with my diet and exercise but since it's not "regular" diabetes but rather something induced by the prednisone it's not always predictable.

I'm glad you're talking to the doctor about this. Assuming he's on Laxix or some other diuretic with the prednisone also. Is that correct?

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all

of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)

[Guest guest]

HI Beth

Thanks for your reply. My Dad is not on Lasix but he is on hydrochlorothiazide 50mg per day (which is also a diuretic). He was on this drug for his high blood pressure prior to starting prednisone.

I've suggested watching his sodium intake and upping his potassium rich foods. Not sure how well that's going--my parents are european and almost everything they eat is smoked and salted LOL!

The doc has not suggested monitoring his blood sugar yet although, they do check it at his 2 week appts. (he has bloodwork done every 2 weeks now)

anne (dad ipf 03/06)

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)

[Guest guest]

Anne,

I'm sorry, refresh my memory...how much prednisone is he on again?

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all

of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)

[Guest guest]

Beth,

My Dad is on 40mg of prednisone daily (it's been about a month now) and azathioprine.

anne (dad ipf 03/06)

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)

[Guest guest]

Anne,

I don't know if 40mg is high enough to cause the kind of blood sugar changes that would cause the frequent urination that you're seeing, but it's definitely worth asking the doctor about. I'm currently on 80mg a day and I definitely have blood sugar issues but as I said, I've learned to control probably 90% of it with diet and exercise. The prednisone can wreak havoc with your bodies ability to process sugars through your system.

My doctor is hyper cautious about stuff like this. He's been determined from the beginning to protect my body from the downside of prednisone. My sister (who also happens to be a doctor) thinks it's a little nuts but I appreciate his attitude and care for his patients overall health and comfort.

I think your Dad is fortunate to have you supporting him and advocating for him!

Beth IPF 06/06Draw close. Hold hands. Life is short. God is good.

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all

of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)

[Guest guest]

Hi Beth,

I know what you mean re: the 40mg. I have a good friend who is a pharmacist and thought the same. Until i speak with his respirologist, i won't know if he thinks it is blood sugar related or not. the thing is, before he started medications, the doc told us that his bloodwork showed a tendency toward diabetes (probably because of his age more than anything, he's 79).

I will keep you posted,

anne (dad ipf (03/06)

Re: feeling down

Anne, I am so sorry you are in a reality check period. I just hate that part. I am concerned about the frequent urinating.. That's one of the first signs of diabetes that prednisone can cause.. CALL the Dr. right away. Honey your not alone in this. so share your feelings. We GET IT as Joyce says and that is so true. God Bless...Love and Prayers, Peggy 9/04 ipf

Hi all,I'm just needing some support today. When I first found this chat, I was a mess, anxious, scared, and sleepless. After talking to all of you, I started to feel better and generally just more calm. Over the past week, the anxiety and sadness is creeping back in. I'm sure that with anything like this, emotions are like a rollercoaster. My Dad was doing pretty well on his meds for about a month and he actually was feeling like he had a bit more energy and was less tired--i understand that is a common early reaction to prednisone. Since then, he has developed thrush--not the end of the world, I know. Now, he is having to urinate almost hourly and is up 4-5 times per night. I just know that this is going to stop him from going out as often which is not a good thing. Mom says that whenever he is sitting on the couch, he is asleep, he's just so tired all of the time. I'm just so scared for him and for her and for me. I'm starting to wonder what we are hoping to accomplish with the meds, and at what cost. I know that we will know within a couple of months whether they are working to slow the progression of the fibrosis but the waiting is killing me. I just worry so much about what the meds are doing to his body. I know that there isn't a question in all of this, I guess I just needed to tell someone/everyone how I'm feeling right now.Thanks for listening,anne (dad ipf 03/06)