Re: (unknown)

[Guest guest]

Dear :

Sorry to hear you are feeling so down. That is something we all go through at times due to this disease. I was diagnosed this past July and was immediately put on oxygen 24/7. I had no idea I had a lung disease till then. I was stunned. I have started to get my affairs in order because while I am told I still have some time, anyone can die from an accident at anytime. Being told to get your affairs in order does not necessarily mean death is impending. I have listened to stories on different groups/forums and, as a nurse, have cared for many person on Hospice and know that many have lived far past what the doctor predicted, sometimes even years past. I dont agree with your doctor that getting a lung is like winning the lottery, chances are better than that. But even if he was right, someone wins it, why not you? If it is something you would consider I suggest you look into in right away, the sooner the better and dont take no from your pulmonologist. Get evaluated for a lung transplant and they will determine whether you qualify for it. I hope your mood will be able to be lifted up and hope enter your heart for mood does affect our immune system. I fight each day to find joy in my life and seek laughter for the medicinal benefits of it. I hope you will be able to feel the caring this group offers and dont hesitate to post at any time no matter what you need to say.

Hugs,

Carolyn

-- Re: (unknown)

Hello Joyce

Thank you so much for reading and responding to my message. I really appreciate it. Here is the scoop of me:

Four years ago, the doctors finally made a diagnosis for me, after many bronchoscopies and a lung biopsy. They said it was Non specific interstitial pulmonary disease. I was put on Prednisone for over a year (lots of side effects). Then, after that was over, began Gamma Gamma shots. I was still able to disguise my disease by wearing long skirts to hide my swollen legs. Anyway, for a while it was alright. I coughed alot but could also handle that. Four months ago, I got much worse. Swelling very badly, lots and lots of coughing but most of all, I got out of breath so easily. I quit work two months ago because I didnt have enough breath to walk much. Legs worked...lungs didnt. The pulmonary doctor now says I am in the end stages and suggested I "get things in order". I was denied at the respiratory exercise clinic because I was "medically unstable". Last weekend I was put in the hospital for a heart cath and determined the level of my pulmonary hypertension. I was diuresed and that helped but after two days at home, the fluid has built back up. And yes, I have been on oxygen therapy, 24/7 for the last six weeks. I guess I am just feeling really dejected. I need to know that it will get better.

Also, I was told by the pulmonologist that finding a lung for transplantation was like winning the lottery..very unlikely.

It appears there is no hope...and I need hope.

Thanks again for listening.

(unknown)

Hello ,

Welcome to our group. I am sorry that you find yourself so sick. Have you gone to a good teaching hospital for transplant evaluation, yet? Are you on oxygen, yet? Has your doctor mentioned rehab to you yet? What is your actual diagnosis?

, we all relate. We have all been through the same stages of denial and fear. We have all grieved the loss of our health. We all suffer. We all need each other.

Ask us anything? There are many here who are professional medical people and many who have fought the fight for a long time. We are happy to help. You will be able to help us in return.

You are among friends.

Hugs, Joyce PF 1997>> Hello> I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.>

[Guest guest]

Joyce

The same things happened to me: walking and having to lean against a

wall or sit down and not being able to talk for long periods of

time. I would start coughing and lose my breath. In the classroom,

I found it difficult to read a short book to the children.

Thanks for sharing.

Joyce IPF 3/06

> > >

> > > Hello

> > > I am new to this site. I guess I need to talk to other people

who

> have breathing issues. I was just discharged from the hospital

yesterday

> due to pulmonary hypertension due to my pulmonary fibrosing. I had a

> heart cath. Anyway, my heart is fine..lungs are terrible. Was told

there

> was nothing else to be done for me. I have been told I should have

> beenput on the lung transplant list when first diagnosed but I

didnt.

> Prognosis is not good. Does anyone have any positive news about this

> disease? I have so many questions. Can anyone relate? I am starting

to

> get SOB even when not exerting. Guess I just needed to talk. If

anyone

> listened to me....thanks.

> > >

> >

>

[Guest guest]

Hello Carolyn,

What a nice email! Thank you. Yes, I am feeling very despondant. Trying not to as I am usually an upbeat person. I have known I had this disease for a few years but was always able to keep on with my life, working, caring for my family, etc. But I no longer could work. Just ran out of breath. I am/was a social worker in a long term care facility and you have to walk to rooms or push wheelchairs. Long dresses or pants hid my swollen legs and I would sneak in the med. room and get a sniff of oxygen. But finally, talking was taking my breath. I did not tell anyone about my illness, just said it was time to quit. And now to be told I am in the "end stages". I did not know about the pullmonary hypertension until last week when I had a breathing function test in the Body Box. And then of course, I was sent to the hospital. I now faint sometimes, especially after getting up f rom a chair or bed. I have been considering getting a lift chair as it is quite alot of exertion getting out of a chair. I gave in and got a handicapped sticker for the car. Today, the respiratory people brought out liquid oxygen and took away my other oxygen..the portable one. Seems the conserving one was not keeping my sats high enough. With O2 I run 92 but without it, I plummet to 79 within 3 min. I am getting tired of dragging this tube around the house but am thankful for it also. I dont aim to complain but ....... The Dr. said I should take some anti-depressant but so far I have refused. Seems I should be able to handle this on my own. Anyway, I feel like I must be going to die soon since they told my it was time to get things in order. The Dr. even mentioned Hospice. I wonder...will I just stop breathing? Sounds morbid to even talk about it, but I want to know.

Again, thanks to all of you who listen to me ramble on and on. It is really good to talk to someone who knows what it is like. I dont talk about it around here..... Thanks again.

(unknown)

Hello ,

Welcome to our group. I am sorry that you find yourself so sick. Have you gone to a good teaching hospital for transplant evaluation, yet? Are you on oxygen, yet? Has your doctor mentioned rehab to you yet? What is your actual diagnosis?

, we all relate. We have all been through the same stages of denial and fear. We have all grieved the loss of our health. We all suffer. We all need each other.

Ask us anything? There are many here who are professional medical people and many who have fought the fight for a long time. We are happy to help. You will be able to help us in return.

You are among friends.

Hugs, Joyce PF 1997>> Hello> I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.>

[Guest guest]

,

What a fighter you have been! I can see that you are strong and independant. Let me guess....are you a control freak like me? It is doubly hard on people who have always handled everything for themselves and maybe for the whole family.

Most of our members are on antidepressants. Don't hesitate to use whatever you need to make your life a little easier. Dealing with a terminal illness is like dealing with death of a loved one. You grieve, you have anger, fear, hopelessness....all of it. And while having to deal with all this emotionally, your body is so weak.

I think Hospice is wonderful. Not only will they help with your physical needs, they know how to council you. It does not mean the end. I know people who have had hospice for 3-4 years. Peggy on our group has a friend who has used them for ten years. Again, whatever helps you, do it.

Carolyn is a wonderful source because she has been a Hospice worker. She has written a post here to help us understand the dying process. But, , try to focus on living. Center your energy on getting through this rough part and going forward looking to every day as a great adventure and every night thank God for the victory over the monster of fibrosis....if only for that one day!

Remember, that WE get it! We will be here and we will pray with you and for you. Trust God to supply all your needs. He is as close as the air in front of you.

Hugs, Joyce PF 1997

> >> > Hello> > I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.> >>

[Guest guest]

,

As much as I wish neither of us had to deal with this illness, it's comforting to read your words as I find so much of myself in your story. I was diagnosed in June of this year. My last day of work was the Friday before Memorial Day and Monday night, Memorial Day I was admitted to the ICU with O2 sats in the 60's and in acute congestive heart failure. I had been carrying on working and taking care of all that needed to be done in my life in spite of not being able to breath properly for weeks and weeks. My legs had swollen up to the point that pants no longer fit me properly. My sister finally called me on my bull poop and dialed 911. If she hadn't, it's likely I'd no longer be here.

So life has changed. I can't work. I'm on O2 24/7. I completed an 8 week pulmonary rehab program at a local rehab hospital and am now in there "Wellness Center" program. Recent tests indicate that my heart is now "normal" and the problems I had were secondary to my lung problems. The heart issues will likely come back if/when my lungs deteriorate so that's why I'm trying so hard to get and stay healthy. I'm working on losing weight so that I can have a formal evaluation for a lung transplant. I've already met with a doctor at Duke University informally in order to acquaint myself with the process. I would encourage you to do some research on the issue. It may or may not be appropriate for you but at least you know you gathered the information and made the decision yourself.

There are days that I'm very down and discouraged. I'm used to being active and being everyone's right arm. This "disabled" crap is hard to take. I know you know what I mean. But life is not over, just changed. Every day that I wake up, is a good day. There is still much that I can do. My family and friends are happy to have me here. My 21 year old son is happy his Mom is still on the planet with him. If the time comes that I need an anti-depressant, I will take one. I want to live the life I have left in happiness and as much comfort as I can. I'm getting used to accepting help from others, though it's very very difficult.

, find ways to make your life easier. If you need the lift chair and can afford it, get it. Do you have a chair for the shower? Best purchase I ever made and I resisted it. The handicapped sticker for the car is also the right thing to do. Being able to get out and about without stressing about parking far away will help in many ways. I've learned so much from the folks on this board. Everyone has been unfailingly helpful and compassionate. You are welcome here and will find nothing but understanding.

God bless! Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

(unknown)

Hello ,

Welcome to our group. I am sorry that you find yourself so sick. Have you gone to a good teaching hospital for transplant evaluation, yet? Are you on oxygen, yet? Has your doctor mentioned rehab to you yet? What is your actual diagnosis?

, we all relate. We have all been through the same stages of denial and fear. We have all grieved the loss of our health. We all suffer. We all need each other.

Ask us anything? There are many here who are professional medical people and many who have fought the fight for a long time. We are happy to help. You will be able to help us in return.

You are among friends.

Hugs, Joyce PF 1997>> Hello> I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.>

[Guest guest]

Dear :

As a nurse I have taken care of hundreds upon hundreds of Hospice patients and those dying without benefit of Hospice. I can answer probably many questions you may have on this subject. I have also intensely studied the material of the author of many books on "death and dying" by the name of Kubler Ross. I have listed below some of her books you can get on Amazon.com if you want to read them.

I am also copying a post I sent to another member here in this group, who had questions about the dying process, that seemed to help relieve her mind. If you have any questions please dont hesitate to email me personally at cmmerritt@.... Put Breathe-Support in the subject title so I dont accidentally delete it as spam. LOL

Hugs,

Carolyn

(previous post)

In this day and age there is little need to fear the dying process. Yes there are some horrifying deaths but these are the ones you read about from sudden traumatic injuries such as car accidents, animal attacks and so forth where there is not time for the body to shut down before death takes place and while the pain centers may shut down, the fear remains. The majority of deaths however, are at a much slower pace from disease processes. As a nurse of over 25 years I have taken care of many, many Hospice Patients. They dying process is different for everyone to a certain degree. First of all the wishes of the patient are taken into consideration as to whether they want to "be put out of it" during the last day, hours or moments of life or prefer to be awake and alert right to the end. Many are afraid of being afraid and it used to be that there were only narcotics to give to these patients, which did relieve fear but it also rendered the person semi-comatose as well so they lost much of their ability to talk to their loved ones at the final moments of life.

Today there are many medications that can be given to alleviate the fear without over-sedating the person, thereby allowing them to remain somewhat alert to communicate with family. When the person reaches the final moments of life, the oxygen levels decrease and the person becomes sleepier more and more and for longer periods of time. As the end approaches the sleep becomes deeper and deeper until the person becomes comatose. At that point it is much like being given a general anesthetic before surgery...you know nothing, you feel nothing. As the comatose state deepens, the breathing becomes more shallow and the heartbeat becomes more irregular. Eventually there is not enough oxygen being supplied to sustain the heartbeat or brain function and the person goes into cardiac and respiratory arrest without any awareness of it just as if they died on the operating table. Through the hundreds upon hundreds of patients I have been with through the dying process, none of them were aware of the moment of death and all of them went into a deep peaceful sleep hours or days before death.

Hope this helps some,

Carolyn

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Books by beth Kubler Ross.

They deal with the subject from the different perspectives of both the patient, the survivors as well as cultural viewpoints. I believe Amazon.com sells most if not all of them and even has one that is a journal to write in.

Carolyn

LIVING WITH DEATH AND DYING

TO LIVE UNTIL WE SAY GOOD BYE

QUESTIONS AND ANSWERSON DEATH AND DYING

ON ON GRIEF AND GRIEVING

From: lentz

Date: 10/27/06 21:01:57

To: Breathe-Support

Subject: Re: (unknown)

Hello Carolyn,

What a nice email! Thank you. Yes, I am feeling very despondant. Trying not to as I am usually an upbeat person. I have known I had this disease for a few years but was always able to keep on with my life, working, caring for my family, etc. But I no longer could work. Just ran out of breath. I am/was a social worker in a long term care facility and you have to walk to rooms or push wheelchairs. Long dresses or pants hid my swollen legs and I would sneak in the med. room and get a sniff of oxygen. But finally, talking was taking my breath. I did not tell anyone about my illness, just said it was time to quit. And now to be told I am in the "end stages". I did not know about the pullmonary hypertension until last week when I had a breathing function test in the Body Box. And then of course, I was sent to the hospital. I now faint sometimes, especially after getting up f rom a chair or bed. I have been considering getting a lift chair as it is quite alot of exertion getting out of a chair. I gave in and got a handicapped sticker for the car. Today, the respiratory people brought out liquid oxygen and took away my other oxygen..the portable one. Seems the conserving one was not keeping my sats high enough. With O2 I run 92 but without it, I plummet to 79 within 3 min. I am getting tired of dragging this tube around the house but am thankful for it also. I dont aim to complain but ....... The Dr. said I should take some anti-depressant but so far I have refused. Seems I should be able to handle this on my own. Anyway, I feel like I must be going to die soon since they told my it was time to get things in order. The Dr. even mentioned Hospice. I wonder...will I just stop breathing? Sounds morbid to even talk about it, but I want to know.

Again, thanks to all of you who listen to me ramble on and on. It is really good to talk to someone who knows what it is like. I dont talk about it around here..... Thanks again.

(unknown)

Hello ,

Welcome to our group. I am sorry that you find yourself so sick. Have you gone to a good teaching hospital for transplant evaluation, yet? Are you on oxygen, yet? Has your doctor mentioned rehab to you yet? What is your actual diagnosis?

, we all relate. We have all been through the same stages of denial and fear. We have all grieved the loss of our health. We all suffer. We all need each other.

Ask us anything? There are many here who are professional medical people and many who have fought the fight for a long time. We are happy to help. You will be able to help us in return.

You are among friends.

Hugs, Joyce PF 1997>> Hello> I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks.>

[Guest guest]

Hi Laurie,

My Dad is in the same boat as your husband. He is currently on just 5mg of prednisone (down from 30mg 2 weeks ago). I just got home from the emergency department of the hospital because he's having such a hard time breathing. He was on 1 1/2LPM 02 and now needs 3 1/2LPM at rest. We see his specialist tomorrow and hope to get some answers on whether or not this is simply prednisone weaning, perhaps weaning too quickly, or worst-case scenario, progression of his disease. I will post our findings tomorrow.

Wishing you and your husband the best,

anne (dad ipf 03/06)

(unknown)

I know I am probably sounding like a pest with the same questions however has anyone's sats dropped into the 70s from weaning? My husband has gone from 3 liters at rest to 6 and at times staying in the 70s. He is seeing his primary tomorrow but was just wondering if anyone has gone this low while weaning? He goes from a good sat of 92 to 72. I am beginning to wonder if the pulse ox. works right. The other day it said 34 then 29 that could not of been right he wasn't even gasping. I believe it was low but not that low. I have 2 one is a loaner and have checked the reading on them at one time or another. HELPLaurie

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

Vicky,

You are always in my heart and in my prayers. I was just thinking to myself of the hymn that says 'I know who holds tomorrow and I know who holds my hand' .... Stay strong and know that we are praying for you and are always here for you. Keep us posted.

Hugs and many, many prayers,

Joyce PF 1997

>> MY stats dropped yesterday to 72. I was on 30mg of Steroids, and was weaned > to 10mg in 3 weeks time. I couldnt breathe, I am depressed, extremely tired. > I called U of MI today, the nurse said no thats not good, she talked to the > dr and he upped my steroid to 20mg again. The Imuran is whats making me > sleepy she said. I am so depresssed, I feel so defeated, I had to get off the > steroids before they would even consider me for a transplant but they also said > I may not live long enough, now they up my steroids? Please pray for me > ya'll, I'm crying out to Jesus. I see my heart dr and reg dr tomorrow, God bless > you all.....> > Vicky IPH/PF seems like forever> •••••••••••• Original Message •••••••••••••> > > > > I know I am probably sounding like a pest with the same questions however has > anyone's sats dropped into the 70s from weaning? My husband has gone from > 3 liters at rest to 6 and at times staying in the 70s. He is seeing his > primary tomorrow but was just wondering if anyone has gone this low while > weaning? He goes from a good sat of 92 to 72. I am beginning to wonder if the > pulse ox. works right. The other day it said 34 then 29 that could not of been > right he wasn't even gasping. I believe it was low but not that low. I have > 2 one is a loaner and have checked the reading on them at one time or > another. HELP> Laurie> > ____________________________________> Cheap Talk? Check out Yahoo! Messenger's low _PC-to-Phone call rates._ > (http://us.rd.yahoo.com/mail_us/taglines/postman8/*http://us.rd.yahoo.com/evt=39663/> *http://voice.yahoo.com)>

[Guest guest]



Vicky...I read your emotional and spiritual fatigue between the lines. I pray for strength for you.

I love you. Sher ipf 5-06

Re: (unknown)

MY stats dropped yesterday to 72. I was on 30mg of Steroids, and was weaned to 10mg in 3 weeks time. I couldnt breathe, I am depressed, extremely tired. I called U of MI today, the nurse said no thats not good, she talked to the dr and he upped my steroid to 20mg again. The Imuran is whats making me sleepy she said. I am so depresssed, I feel so defeated, I had to get off the steroids before they would even consider me for a transplant but they also said I may not live long enough, now they up my steroids? Please pray for me ya'll, I'm crying out to Jesus. I see my heart dr and reg dr tomorrow, God bless you all.....

Vicky IPH/PF seems like forever

•••••••••••• Original Message •••••••••••••

I know I am probably sounding like a pest with the same questions however has anyone's sats dropped into the 70s from weaning? My husband has gone from 3 liters at rest to 6 and at times staying in the 70s. He is seeing his primary tomorrow but was just wondering if anyone has gone this low while weaning? He goes from a good sat of 92 to 72. I am beginning to wonder if the pulse ox. works right. The other day it said 34 then 29 that could not of been right he wasn't even gasping. I believe it was low but not that low. I have 2 one is a loaner and have checked the reading on them at one time or another. HELPLaurie

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

Sher,

Thank you so much for your prayers, your are right, I am drained emotionally and physically, my husband told me tonite I have given up. Maybe I have, I just wantthis Christmas, then I wanna go home....

Vicky IPH/PF 4/06

[Guest guest]

---Vicki, please keep hanging on and trusting in God. Don't give up,

keep fighting because your family needs you and we need you on this

site to help the rest of us. I will keep praying for you and your

family and I know that God isn't going to take you home before He is

ready for you, so until then He want's you to keep fighting. He hasn't

taken His hand off of you so don't you take your thoughts off of Him.

Each day when you get up tell yourself 3 times that " I'am blesses, I'am

blessed, I'am blessed! " and hold those thoughts all day because you are

blessed just as the rest of us are. Each day that we are able to get up

and do just a little something is a gift from God and I for one praise

His for the opportunity to have the chance to be a blessing to someone

His name. When you are out shopping or going to the doctor and you

share a smile with a stranger you may be the only person all day to let

that person know that someone cares enought to share a smile with them.

Remember that God has a plan for each day He lets us stay here on this

earth and I for one am still looking for the plan.

Remember that you have a lot of people on this site that are praying

for you and your family and we love you. God words instructs us to love

our neighbor as ourselves and that doesn't mean just the ones that live

next door to us.

Hugs to you and your family!

Barbara R. IPF 1/2003

In Breathe-Support , Ladyvic1@... wrote:

>

> Sher,

>

> Thank you so much for your prayers, your are right, I am drained

emotionally

> and physically, my husband told me tonite I have given up. Maybe I

have, I

> just wantthis Christmas, then I wanna go home....

>

> Vicky IPH/PF 4/06

>

[Guest guest]

Anne...my sympathies for the death of your father. Even being prepared doesn't ease the loss.

I'm so glad you had good "time" with him! You will always cherish that.

God be with you and your family.

"Bless those that mourn for they shall be comforted".

Sher ipf 5-06

(unknown)

Hello everyone,It is with great sadness that I post this message. My dear sweet Dad lost his battle with ipf this afternoon around 2:30pm with my Mother by his side. I received a call at 1:45am that he was having increasing difficulty breathing and that he thought it would be nice to have us there. I picked up my Mom and made it to the hospital by 2:30am, my brother met us there. We spent some quality time with Dad, talking, joking, reminiscing about our childhoods and the good times and memories that we shared.I told him how brave I think he's been through all of this and how proud I am of him, then I told him that if he felt that he needed to go and leave us, it was ok, that we would take care of eachother and everything else. Approximately 4 hours before he died, he lost consciousness and we sat with him and held his hands. At 2pm, my Mom suggested that my brother and I go home for a break and return later. I was just about home when I got the call that my Dad had passed on so I turned around and went back to comfort my Mom. It has been an incredibly difficult week for us. It still doesn't seem real. How could the Dad that I've always known be gone? There will be a huge hole in all of our lives from this point on. I thank all of you for your honestly, love, prayers and support over the last few months, it has meant so much to me. I will continue to pray for all of you who fight this battle,Love, anne

[Guest guest]

Anne,

I'm so sorry. I'm glad you got to spend time with him in these last few days. I know your Dad's passing was made easier by your love and attention.

You and your family will remain in my thoughts and prayers. Beth (Fibrotic NSIP 06/06)Draw close. Hold hands. Life is short. God is good.

(unknown)

Hello everyone,It is with great sadness that I post this message. My dear sweet Dad lost his battle with ipf this afternoon around 2:30pm with my Mother by his side. I received a call at 1:45am that he was having increasing difficulty breathing and that he thought it would be nice to have us there. I picked up my Mom and made it to the hospital by 2:30am, my brother met us there. We spent some quality time with Dad, talking, joking, reminiscing about our childhoods and the good times and memories that we shared.I told him how brave I think he's been through all of this and how proud I am of him, then I told him that if he felt that he needed to go and leave us, it was ok, that we would take care of eachother and everything else. Approximately 4 hours before he died, he lost consciousness and we sat with him and held his hands. At 2pm, my Mom suggested that my brother and I go home for a break and return later. I

was just about home when I got the call that my Dad had passed on so I turned around and went back to comfort my Mom. It has been an incredibly difficult week for us. It still doesn't seem real. How could the Dad that I've always known be gone? There will be a huge hole in all of our lives from this point on. I thank all of you for your honestly, love, prayers and support over the last few months, it has meant so much to me. I will continue to pray for all of you who fight this battle,Love, anne

[Guest guest]

Dear Anne:

I am so sorry to hear of your loss. Losing a parent is so hard. I lost both my parents within a three year period, they were both in their early sixties, so it was quite a sorrowful time. In time the grief will ease and you will be able to look back at the good memories and while you will never stop missing him you will not feel that awful ache in the heart that is actually a physical pain caused by grief. I am so proud of you that you were able to spend time with your Dad just before his death and to tell him it was all right to let go. Often the dying ones wait until those they love leave, before letting go, so don't be hard on yourself for not being there for the exact moment of death. He probably timed it that way out of love. You can be at ease knowing you helped your Dad get through this as easy as possible. I wish my children would be as loving as you have been.

Hugs,

Carolyn

-- (unknown)

Hello everyone,

It is with great sadness that I post this message. My dear sweet

Dad lost his battle with ipf this afternoon around 2:30pm with my

Mother by his side. I received a call at 1:45am that he was having

increasing difficulty breathing and that he thought it would be nice

to have us there. I picked up my Mom and made it to the hospital by

2:30am, my brother met us there. We spent some quality time with

Dad, talking, joking, reminiscing about our childhoods and the good

times and memories that we shared.

I told him how brave I think he's been through all of this and how

proud I am of him, then I told him that if he felt that he needed to

go and leave us, it was ok, that we would take care of eachother and

everything else.

Approximately 4 hours before he died, he lost consciousness and we

sat with him and held his hands. At 2pm, my Mom suggested that my

brother and I go home for a break and return later. I was just

about home when I got the call that my Dad had passed on so I turned

around and went back to comfort my Mom.

It has been an incredibly difficult week for us. It still doesn't

seem real. How could the Dad that I've always known be gone? There

will be a huge hole in all of our lives from this point on.

I thank all of you for your honestly, love, prayers and support over

the last few months, it has meant so much to me. I will continue to

pray for all of you who fight this battle,

Love, anne

[Guest guest]

Sharon, my son was a horror to take shopping when he was your daughter's age.

And, shoes were something I dreaded. I finally traced his feet on pieces of

cardboard and stuck them in my purse. It was easier to take things back than to

deal with the tantrums in a store. He would be happy to come home and find a

box or bag on his bed that he could investigate when it pleased him and my

shopping was much less stressful. Please know it gets better with time. He now

loves to shop and make his own choices. He will still shutdown if something is

bothering him but after he sorts it out himself we can talk about it and that

could be the next day or two. I did send him to his room to take deep calming

breaths when he was smaller and tell him to come back when he could be calm and

smile. You need that break from the situation just as much as they do! Hope

this is helpful to you.

Terry, Mom to Craig (21)

Strong willed child

My 5 year old daughter was diagnosed at birth with MDS.

She is a tremendous joy, but at the same time very difficult. Just today, we

went shopping for tennis shoes for

kindergarten( all I can get her to wear are flip-flops). I explained

to her that she is not allowed to wear flip-flops to school and

that we were going shopping for tennis shoes. At this point, she

is excited. Well, we get to the store and I allowed her to pick

out the shoes. So I tell her she has to try them on. This is where

the excitement stops. She starts throwing a holy fit. When she gets

like this even after she calms down, there is no talking to her. It's

like she tunes you out. Has anyone encountered similar behavior with

there child? Is this an MDS trait? If this is a sensory issue, what can I do

to help her? Any advice would be helpful!! Thanks for

listening.

Sharon Boucher

[Guest guest]

Welcome to you, your family and to your 3-year-old daughter. You will find

that this group is spread out all over the world so there is a lot of

information to be shared.

Thank you Kristy and , Cardiology appt is up and coming and I will share

the Thyroid results as soon as they are in.

Mom to Ricky (6-MDS and XYY Syndrome) and a (13)

________________________________

To: mosaicds

Sent: Mon, October 19, 2009 12:35:33 PM

Subject: (unknown)

 

Hi Everyone

We have a new family joining us today. Here is what they had to say...

My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

Welcome to our family! I am so glad you have joined us today. Please tell us all

about you and your family and feel free to ask any questions you may have. We

will all be very happy to share our experiences with you.

Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and Garrett

13

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

________________________________

To: mosaicds

Sent: Mon, October 19, 2009 1:35:33 PM

Subject: (unknown)

 

Hi Everyone

We have a new family joining us today. Here is what they had to say...

My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

Welcome to our family! I am so glad you have joined us today. Please tell us all

about you and your family and feel free to ask any questions you may have. We

will all be very happy to share our experiences with you.

Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and Garrett

13

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Hi Violet!

How far are you from Cincinnati? The people at the Down syndrome clinic at the

Cincinnati Children's here know about mDs. As far as potty training, sorry

haven't gotten that far yet.

Is she already enrolled in school yet?....If so will the school help with the

potty training?

, mom to Adde

Subject: Re: (unknown)

To: MosaicDS

Date: Wednesday, October 21, 2009, 11:28 AM

 

hi my name is violet warren i am 27 and my daughter with mds

is alexis.  she just turned 3 in august. i moved to a small town in indiana from

atlanta georgia. the people here had never even heard of mds, so it was very

difficult finding a doctor.  i have to drive an hour and  half just to take

her.   I am just looking for a little support to help her in her development. 

We are trying potty training and she is not happy with the change.

____________ _________ _________ __

From: Kristy Colvin <kristyimdsa (DOT) org>

To: mosaicds@yahoogroup s.com

Sent: Mon, October 19, 2009 1:35:33 PM

Subject: (unknown)

 

Hi Everyone

We have a new family joining us today. Here is what they had to say...

My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

Welcome to our family! I am so glad you have joined us today. Please tell us all

about you and your family and feel free to ask any questions you may have. We

will all be very happy to share our experiences with you.

Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and Garrett

13

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Violet,

I'm going through potty training with my son right now. And the ironic thing is

I'm the one that has MDS. And if it helps, I'm here if you have any questions

let me know. 

 Casey T. Morton

IMDSA NewsLetter Editor

________________________________

To: MosaicDS

Sent: Wed, October 21, 2009 9:02:59 AM

Subject: Re: (unknown)

 

Hi Violet!

How far are you from Cincinnati? The people at the Down syndrome clinic at the

Cincinnati Children's here know about mDs. As far as potty training, sorry

haven't gotten that far yet.

Is she already enrolled in school yet?....If so will the school help with the

potty training?

, mom to Adde

From: Violet Warren <vmwarren12yahoo (DOT) com>

Subject: Re: (unknown)

To: MosaicDS@yahoogroup s.com

Date: Wednesday, October 21, 2009, 11:28 AM

 

hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

____________ _________ _________ __

From: Kristy Colvin <kristyimdsa (DOT) org>

To: mosaicds@yahoogroup s.com

Sent: Mon, October 19, 2009 1:35:33 PM

Subject: (unknown)

 

Hi Everyone

We have a new family joining us today. Here is what they had to say...

My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

Welcome to our family! I am so glad you have joined us today. Please tell us all

about you and your family and feel free to ask any questions you may have. We

will all be very happy to share our experiences with you.

Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and Garrett

13

Kristy Colvin

IMDSA President

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa. org

http://www.mosaicmo ments.today. com

[Guest guest]

Violet -

(who is 12 now) was not potty trained until 5 - she was not ready,

she was too busy with life to bother to go to the bathroom.

When she was ready to try the big girl pants she was trained in a month. We

have had an accident or two over the years but rarely.

I just know she has to go every other time I have to go.

As far as doctors are concerned - go more with a doctor who is willing to

research and learn, than one who has another patient with MDS. Our ped -

had never heard of it but I gave her the web site and she is willing to

research and learn. 's file is the thickest one in her office. ;-)

She knows has a VERY high tolerance for pain and when

complains about something - something is very wrong. I have sent her to

school with pneumonia (she had the sniffles), she had holes in her heart

until age 8 when she complained that her heart hurt... Sounds like I am a

bad mother but she NEVER complains about anything - except that her

brother's piece of cake/pie/cookie is bigger than hers ;-)

Darlene - mom to (12) and (10)

On Wed, Oct 21, 2009 at 11:28 AM, Violet Warren wrote:

>

>

> hi my name is violet warren i am 27 and my daughter with mds is alexis.

> she just turned 3 in august. i moved to a small town in indiana from atlanta

> georgia. the people here had never even heard of mds, so it was very

> difficult finding a doctor. i have to drive an hour and half just to take

> her. I am just looking for a little support to help her in her

> development. We are trying potty training and she is not happy with the

> change.

>

> ________________________________

> From: Kristy Colvin <kristy@... <kristy%40imdsa.org>>

> To: mosaicds <mosaicds%40yahoogroups.com>

> Sent: Mon, October 19, 2009 1:35:33 PM

> Subject: (unknown)

>

>

> Hi Everyone

> We have a new family joining us today. Here is what they had to say...

>

> My 3 year old daughter has mds and i am just trying to find other parents

> or people that know more about it. i live in a small town and there is not a

> lot of information.

>

> Welcome to our family! I am so glad you have joined us today. Please tell

> us all about you and your family and feel free to ask any questions you may

> have. We will all be very happy to share our experiences with you.

>

> Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

> Garrett 13

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

Hi Violet,

My name is a Welch and I live in Connersville, In (also a small town in

Indiana). It is between Indy and Richmond. We take our daughter, Isabelle who

is 5 to Riley in Indianapolis. We see Dr. Stanley. We only go to Riley

once a year, because we usually just go to her regular pediatrician. Let me

know if I can help with anything. I am willing to talk offline if you want.

a

Mom to Isabelle - 5 MDS and Katelyn - 2

>

> hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

>

>

>

>

> ________________________________

>

> To: mosaicds

> Sent: Mon, October 19, 2009 1:35:33 PM

> Subject: (unknown)

>

>  

> Hi Everyone

> We have a new family joining us today. Here is what they had to say...

>

> My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

>

> Welcome to our family! I am so glad you have joined us today. Please tell us

all about you and your family and feel free to ask any questions you may have.

We will all be very happy to share our experiences with you.

>

> Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

Garrett 13

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

Hi Violet,

We are from a fairly large town in Texas, and there is also not alot of

knowledge about MDS in the schools here. I think it is because it is rare and

difficult to diagnosis, and it presents itself so differently from child to

child.

My daughter was in a special education preschool program through the school and

now is in regular kindergarten with some special ed assistance. We stay very

tuned in to make sure she is getting what she needs. And I remind my

pediatrician to consult the DS checklist every year.

My daughter is 5. When she potty trained we didn't know she had MDS. I didn't

do anything differently than with the other kids, and so it was pretty on track.

They all train in their own time, MDS or not. Just be prepared for accidents

and reward the littlest successes. I found that a single m & m every time they

used the potty went a long way.

a, my grandmother, aunts and cousins are in Liberty and Connersville!

> >

> > hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

> >

> >

> >

> >

> > ________________________________

> > From: Kristy Colvin <kristy@>

> > To: mosaicds

> > Sent: Mon, October 19, 2009 1:35:33 PM

> > Subject: (unknown)

> >

> >  

> > Hi Everyone

> > We have a new family joining us today. Here is what they had to say...

> >

> > My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

> >

> > Welcome to our family! I am so glad you have joined us today. Please tell us

all about you and your family and feel free to ask any questions you may have.

We will all be very happy to share our experiences with you.

> >

> > Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

Garrett 13

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa. org

> > http://www.mosaicmo ments.today. com

> >

> >

[Guest guest]

Hi a,

The ironic part of that is I live in Connersville.  The hospital I was refering

to is Riley.  We were taking is to Dr. Terry who was really good with her,

but she left.  Dr. Tan's office was not accepting patients.  Any other

suggestions.

________________________________

To: MosaicDS

Sent: Thu, October 22, 2009 12:13:01 PM

Subject: Re: (unknown)

 

Hi Violet,

My name is a Welch and I live in Connersville, In (also a small town in

Indiana). It is between Indy and Richmond. We take our daughter, Isabelle who is

5 to Riley in Indianapolis. We see Dr. Stanley. We only go to Riley once a

year, because we usually just go to her regular pediatrician. Let me know if I

can help with anything. I am willing to talk offline if you want.

a

Mom to Isabelle - 5 MDS and Katelyn - 2

>

> hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

>

>

>

>

> ____________ _________ _________ __

>

> To: mosaicds@yahoogroup s.com

> Sent: Mon, October 19, 2009 1:35:33 PM

> Subject: (unknown)

>

>  

> Hi Everyone

> We have a new family joining us today. Here is what they had to say...

>

> My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

>

> Welcome to our family! I am so glad you have joined us today. Please tell us

all about you and your family and feel free to ask any questions you may have.

We will all be very happy to share our experiences with you.

>

> Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

Garrett 13

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa. org

> http://www.mosaicmo ments.today. com

>

>

[Guest guest]

What a small world!! I am glad to hear that you do live in Connersville,

because I think the Head Start program where is would go to preschool is

great! Is she already enrolled? Head Start will work with you and is on

potty training. I'll email you directly if that is okay and talk about doctors.

If you have any other questions, please let me know.

a

Mom to Isabelle - 5 MDS, Katelyn - 2

> >

> > hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Kristy Colvin <kristy@>

> > To: mosaicds@yahoogroup s.com

> > Sent: Mon, October 19, 2009 1:35:33 PM

> > Subject: (unknown)

> >

> >  

> > Hi Everyone

> > We have a new family joining us today. Here is what they had to say...

> >

> > My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

> >

> > Welcome to our family! I am so glad you have joined us today. Please tell us

all about you and your family and feel free to ask any questions you may have.

We will all be very happy to share our experiences with you.

> >

> > Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

Garrett 13

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa. org

> > http://www.mosaicmo ments.today. com

> >

> >

[Guest guest]

Yes, e-mailing me directly is fine. She is at the pilot program at Fayette

Central currently.

________________________________

To: MosaicDS

Sent: Sat, October 24, 2009 10:29:22 AM

Subject: Re: (unknown)

 

What a small world!! I am glad to hear that you do live in Connersville, because

I think the Head Start program where is would go to preschool is great! Is

she already enrolled? Head Start will work with you and is on potty

training. I'll email you directly if that is okay and talk about doctors. If you

have any other questions, please let me know.

a

Mom to Isabelle - 5 MDS, Katelyn - 2

> >

> > hi my name is violet warren i am 27 and my daughter with mds is alexis.  she

just turned 3 in august. i moved to a small town in indiana from atlanta

georgia. the people here had never even heard of mds, so it was very difficult

finding a doctor.  i have to drive an hour and  half just to take her.   I am

just looking for a little support to help her in her development.  We are trying

potty training and she is not happy with the change.

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Kristy Colvin <kristy@>

> > To: mosaicds@yahoogroup s.com

> > Sent: Mon, October 19, 2009 1:35:33 PM

> > Subject: (unknown)

> >

> >  

> > Hi Everyone

> > We have a new family joining us today. Here is what they had to say...

> >

> > My 3 year old daughter has mds and i am just trying to find other parents or

people that know more about it. i live in a small town and there is not a lot of

information.

> >

> > Welcome to our family! I am so glad you have joined us today. Please tell us

all about you and your family and feel free to ask any questions you may have.

We will all be very happy to share our experiences with you.

> >

> > Kristy-Mom to Arron 28 (yesterday), 24, Tim 23 MDS, Stevan 22 and

Garrett 13

> >

> > Kristy Colvin

> > IMDSA President

> > ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~

> > International Mosaic Down Syndrome Association

> > PH:

> > Toll Free: 1-888-MDS-LINK

> > http://www.imdsa. org

> > http://www.mosaicmo ments.today. com

> >

> >