Re: Today's Dr. Visit

[Guest guest]

Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis had NOT progressed and perscribed 12 more cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their dad. Seems way too much for young men. Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers.

kiss kiss,

~Ginger~

[Guest guest]

>> Since joining this group I have often heard the 6 minute walk test being > discussed. I had never participated in it, as my Dr. never had suggested it. > Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to > 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. > He also asked if I had my personal affairs all in order. Such as, did I want > to be placed on a machine if it became necessary, or did I want DNR on file? > I ask him if the time was near?????, as they had just told me that evidence > from my last CT showed that the fibrosis had NOT progressed and perscribed 12 > more cytoxin treatments over the next year. And that I looked great and the > 'crackles' weren't as prominent as usual. Only problem was my swollen feet > and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg > of *Lasix* I take daily. He asked me if I wished to be placed on a machine if > necessary...I told him I did not think so, as it would be hard for the boys > to pull that plug, and I don't want them to have to go through that. They > will be broken enough at that time. He said he just wanted all prepared for my > boys when the time came and for me to be able to go with dignity and peace of > mind. He said he just wanted all his patients to have everything ready as no > one has any idea what the future brings. Not sure how I feel about all > this....alone I guess...no shoulder to cry on. I try hard to be strong in front of > my boys. They have their young lives to live and they are still dealing with > the loss of their dad. Seems way too much for young men. Going for that > arterial blood work the end of this week. OUCH! Interesting and simple ramp > instructions from Bob. Well, I have rattled on and on....God bless you all and you > are all remembered in my prayers.> kiss kiss, > ~Ginger~>Hi Ginger, You and I seem to be right at the same place. Went to 4L to walk just last December. I take oral Cytoxan and my CT scan, x-rays the same. All doctor's offices and hospitals have books available to mark what you want and have witnessed or notarized. It is good for everyone at any age. You must have a very good doctor. Sounds like a good report to me but we all need to cry and my shoulder is here as I am a widow too. I keep you and your sons in my daily prayers as well as everyone else here also. Ann

[Guest guest]

Ginger: I'm fairly new to this, only since late July. When My diagnosis was comfirmed I sat my husband down and said this is the way it will be. He dosen't want to know, but I kept on until we can talk now. Up until this time we discussed his death from congestive heart failure. Now we discuss both. Our kids know about both. All we can do is to hope we have made our children strong enough I realize this will be the hardest thing you will ever do. Our family needs to also be kept abreast of what is going on. They too must make plans.I found from the death of my father and the pending death of my mother not only to discuss, but also to write down EVERYTHING YOU WANT DONE. God Keep You In The Palms Of His Hands. . I TongueDancer2U@... wrote: Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis had NOT progressed and perscribed 12 more

cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their dad. Seems way too much for young men.

Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers. kiss kiss, ~Ginger~

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[Guest guest]

Ginger: Forgot to say, You are NEVER alone. TongueDancer2U@... wrote: Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis

had NOT progressed and perscribed 12 more cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their

dad. Seems way too much for young men. Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers. kiss kiss, ~Ginger~

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[Guest guest]

Ginger,

The doc mentioned early on that I should have a living wil on file. Have drug my heels for years. Inside I feel that once I get everything in order that I really might die. I need to get those papers done. I wantched my mother die of lung disease and she suffered at the end because they 'kept her alive'. I definatly do not want that. Only the patient can make that decision. We as her children did not want her hooked to machines, but she had refused to make her wishes known. At the end we had to all sign a release to let her die. I struggle with that. I pray that I did not sin by taking death from the hand of God.

It is an emotional thing to deal with. My husband does not discuss the REAL issues with me. The last time I came from the doctor and told him what he said, he cried. Next time I took him with me and he handled it better. He looks so worried and sad sometimes, it breaks my heart. He worries about me and I worry about him worrying!! So, I try to keep the serious decision making to myself.

I know that you are so alone and I pray for you. I also try to keep the brutal truth from my children. I don't think they want to hear it.....self protection. Leaves me quite alone with my fear.

Did you make it through the six minute walk? How were your oxygen stats throughout? Is the swelling in your feet from medication or from heart involvment?

Ginger, stay strong. You are such an encouragement to me. Whenever I feel sorry for myself I think of what you have had to deal with. We never know how strong we are until we are put to the test.

Hugs and Prayers,

Joyce >> Since joining this group I have often heard the 6 minute walk test being > discussed. I had never participated in it, as my Dr. never had suggested it. > Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to > 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. > He also asked if I had my personal affairs all in order. Such as, did I want > to be placed on a machine if it became necessary, or did I want DNR on file? > I ask him if the time was near?????, as they had just told me that evidence > from my last CT showed that the fibrosis had NOT progressed and perscribed 12 > more cytoxin treatments over the next year. And that I looked great and the > 'crackles' weren't as prominent as usual. Only problem was my swollen feet > and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg > of *Lasix* I take daily. He asked me if I wished to be placed on a machine if > necessary...I told him I did not think so, as it would be hard for the boys > to pull that plug, and I don't want them to have to go through that. They > will be broken enough at that time. He said he just wanted all prepared for my > boys when the time came and for me to be able to go with dignity and peace of > mind. He said he just wanted all his patients to have everything ready as no > one has any idea what the future brings. Not sure how I feel about all > this....alone I guess...no shoulder to cry on. I try hard to be strong in front of > my boys. They have their young lives to live and they are still dealing with > the loss of their dad. Seems way too much for young men. Going for that > arterial blood work the end of this week. OUCH! Interesting and simple ramp > instructions from Bob. Well, I have rattled on and on....God bless you all and you > are all remembered in my prayers.> kiss kiss, > ~Ginger~>

[Guest guest]

Hi Ginger, Just wanted to say thanks for sharing your trip to the doctor. I also wanted to second what said - you are NEVER alone. You are also an inspiration to me. Always upbeat. Willing to share stories. How old are your boys? LeanneTongueDancer2U@... wrote: Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also

asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis had NOT progressed and perscribed 12 more cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready

as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their dad. Seems way too much for young men. Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers. kiss kiss, ~Ginger~

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[Guest guest]

Hello Group, How many of you have swollen feet and legs? Is this something that goes with this lung stuff. I carried my wife to eye clinic yesterday for catarac surgery. It was an all day event with no break for lunch. My feet and legs hurt so bad I wanted to scream. I had never seen anything like the clinic before. It was designed and built for this specific purpose. It is the most effecient system I have ever seen for mass production health care. The Doctor has a video everyone has to watch. He claims to have the best eye surgery clinic in the country. Tell me about your feet and legs and how long you have been having trouble. Just curious. She has to go back later on to have the other eye done. That ox bottle sure got heavy after awhile. We left home 7:30 A.M. and got back 5:00PM. Tell us about your leg problems.......Grey

Re: Today's Dr. Visit

>> Since joining this group I have often heard the 6 minute walk test being > discussed. I had never participated in it, as my Dr. never had suggested it. > Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to > 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. > He also asked if I had my personal affairs all in order. Such as, did I want > to be placed on a machine if it became necessary, or did I want DNR on file? > I ask him if the time was near?????, as they had just told me that evidence > from my last CT showed that the fibrosis had NOT progressed and perscribed 12 > more cytoxin treatments over the next year. And that I looked great and the > 'crackles' weren't as prominent as usual. Only problem was my swollen feet > and ankles which he perscribed *Zaroxolyn* every oth

[Guest guest]

Ginger: Is cytoxin strictly for pulmonary fibrosis?

Barb

No, Barb...,its used in chemo treatment for cancer, too. I only get a gram each month.

kiss kiss,

~Ginger~

[Guest guest]

I too believe your dr is looking out for you - I'm sure he didn't mean to discourage you - concentrate on the good parts of the visit - things STILL look good - I'm sure it's hard to deal with - people like to have someone to bounce things off of - we/I'm here for you. Keep up your spirits. Kim

Re: Today's Dr. Visit

Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis had NOT progressed and perscribed 12 more cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their dad. Seems way too much for young men. Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers.

kiss kiss,

~Ginger~

[Guest guest]

Hi, : I am Barb in southern Kentucky. I am preparing to die...a couple of months ago, I had the fella from the funeral home over and I picked out my casket, picked the type of flowers I want (roses, I love roses), picked one of the songs I want played (I'll Fly Away), I haven't decided yet what the other one will be..tomorrow I am going to go pick out my grave and go shopping for a headstone....I want everything done, so my sister (the only family member I really have) won't have to do anything..it is going to be hard enough on her. I plan on writing my eulogy and my obiturary in the near future. Hopefully, me doing all this will make things easier on my sister Shirley and my best friend Deborah. Group, we really need your prayers right now. Deborah discovered a gulf ball size lump on the right side of her neck...the dr. said it was probably a goiter and possibly a cyst. She had an ultra sound done

on her neck Monday and today we were informed that she has to have a biopsy done on it. We are scared to death. Will you all please pray that it is nothing more than a goiter. She is my best friend and it will kill me if something should happen to her. Three years ago, come May 9, I lost a very special friend in my life..,she was my confidant, my security...my best friend..she was 82 and died suddenly...we had been friends for six years. When you seen one of us you seen the other...that loss nearly killed me...I pray God will not take Deborah from me...Deborah is usually such a sweet, kind, caring person...I don't know what I would have done without her these last two years or so... Barblinda arnold wrote: Ginger: I'm fairly new to this, only since late July. When My diagnosis was comfirmed I sat my husband down and said this is the way it will be. He dosen't want to know, but I kept on until we can talk now. Up until this time we discussed his death from congestive heart failure. Now we discuss both. Our kids know about both. All we can do is to hope we have made our children strong enough I realize this will be the hardest thing you will ever do. Our family needs to also be kept abreast of what is going on. They too must make plans.I found from the death of my father and the pending death of my mother not only to discuss, but also to write down EVERYTHING YOU WANT DONE. God Keep You In The Palms Of His Hands. . I TongueDancer2U@... wrote: Since joining this group I have often heard the 6 minute walk test being discussed. I had never participated in it, as my Dr. never had suggested it. Well to day was my day. WOW! Six minutes seems soooo long. He upped my 02 to 4L...I've been on 3L for a year and 7mos. So I guess this will be an adjustment. He also asked if I had my personal affairs all in order. Such as, did I want to be placed on a machine if it became necessary, or did I want DNR on file? I ask him if the time was near?????, as they had just told me that evidence from my last CT showed that the fibrosis had NOT progressed and perscribed 12 more

cytoxin treatments over the next year. And that I looked great and the 'crackles' weren't as prominent as usual. Only problem was my swollen feet and ankles which he perscribed *Zaroxolyn* every other day along with the 40mg of *Lasix* I take daily. He asked me if I wished to be placed on a machine if necessary...I told him I did not think so, as it would be hard for the boys to pull that plug, and I don't want them to have to go through that. They will be broken enough at that time. He said he just wanted all prepared for my boys when the time came and for me to be able to go with dignity and peace of mind. He said he just wanted all his patients to have everything ready as no one has any idea what the future brings. Not sure how I feel about all this....alone I guess...no shoulder to cry on. I try hard to be strong in front of my boys. They have their young lives to live and they are still dealing with the loss of their dad. Seems way too much for young men.

Going for that arterial blood work the end of this week. OUCH! Interesting and simple ramp instructions from Bob. Well, I have rattled on and on....God bless you all and you are all remembered in my prayers. kiss kiss, ~Ginger~ New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

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[Guest guest]

well, Ginger, is the cytoxin helping you or do you also have cancer? BarbTongueDancer2U@... wrote: Ginger: Is cytoxin strictly for pulmonary fibrosis? Barb No, Barb...,its used in chemo treatment for cancer, too. I only get a gram each month. kiss kiss,

~Ginger~

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[Guest guest]

well, Ginger, is the cytoxin helping you or do you also have cancer?

Barb

No Barb, thank God, I do not have cancer. I took the cytoxin through IV for six months. I started in September of '05. In March my Pulmonary Dr. and my Rheumatology Dr. had a consultation regarding my case. They ordered a CT scan and PFT. The numbers were high in some areas and low in others on the PFT. But the CT scan showed the fibrosis had NOT progressed at all. So the Drs. decided to continue the cytoxin treatment for 12 more months. It's an all day affair, taking the cytoxin. All is done through IV. I first take a medication to protect the bladder from the cytoxin just sitting in the bladder and irritating. Then we wait an hour, then I get something

for nausea. Two hours later, the cytoxin begins. Then we wait two hours. And more meds for the bladder and nausea. I usually get to then treatment center by 8:30am and get out of there around 4:30 or 5:00pm. But according to the tests, something seems to be stopping the fibrosis from progressing. I contribute the majority of the success to the pwer of prayer and our Makers healing touch.

kiss kiss,

~Ginger~