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When to Ventilate?


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#1 tlcplwp

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Posted 07 September 2008 - 06:49 PM

Hi I am new to this group. I am a 54 year old female from Rochester NY and I have had Parkinson;s disease about 13 years. My Mom is what I want to talk to you about. She is 78 years old. She has been diaganosed with COPD and Crest Syndrome many years ago. she was recieving 6 Liters of o2 around the clock until last week. She started having much difficulty breathing. She is now on 100% o2 via a nasal canula and 100% o2 via a face mask (30 Liters). She is still having trouble breathing and her o2 levels remain in the 80% range.
They are beginning to talk about putting her on a ventilator. I need to know more about this. Do you know of anyone else who has had to do this? Because of the lung damage due to crest there will be no improvement. Any information would be appreciated. She is alert but in distress.

Thank you.

#2 Peggy

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Posted 08 September 2008 - 04:01 AM

I don't have any answers for you but I just wanted to know I care. I lost my Mother in January of 2007. She had COPD and I was with her constantly for her last 3 weeks. She was on oxygen and towards the end she had to fight so hard to breathe. She was a terrible smoker right up until she went into the nursing home. She even smoked at the assisted living place with her oxygen! She never wanted the ventilator so we just dealt with it until the end. It is so very hard to watch someone fight so hard to just do what we take for granted, breathe. I hope you get some much needed answers. I do know that you should have a Health Care Power of Attorney in place for your Mom before things get bad. This way you can help her when the time comes and she's not able to do it herself. You should be able to get the social worker to help you with the form at your hospital or clinic and they usually do it free of charge. Get that done right away though.

Warm hugs,

Peggy

#3 Shelley Ensz

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Posted 08 September 2008 - 07:34 AM

I'm sorry for the health challenges your mother is encountering. The time to ventilate is when it is needed and the doctors will advise you accordingly.

Lack of oxygen can have serious consequences, including death, of course. Please discuss all your options and concerns with her medical team as there are also many legal issues to consider. And as Peggy mentioned, a signed Living Will is absolutely vital under the circumstances so that you know your mother's preferences for end-of-life care.

Please give your mom an extra Warm Hug, just from me!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 annkd

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Posted 08 September 2008 - 10:16 AM

I'm so sorry to hear about what your mother is going through. She is lucky to have a daughter like you. I am also 54 years old and I was born in Rochester, NY. My Dad has parkinson's. I have scleroderma and fibromyalgia. I live in Sacramento, CA now but often visit my folks. If you ever feel like chatting, please contact me. I wish you all the best. Hugs, Ann

#5 debonair susie

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Posted 08 September 2008 - 02:26 PM

Hi tlcplwp,

I can't imagine how you must be feeling at this point. It is very important to honor your mom's wishes, where all of this is concerned.

As has been mentioned, a living will is important and hopefully, you mom has one...if not, she may want to get one in place so not only are her wishes respected...but her loved ones will feel better, knowing she made the decisions.

My husband also has COPD withan asthma component and chronic bronchitis...he and I have "5 wishes" in place, which is legally binding in our state. We ...my huusband and I caregive my mother...in her home. I share PoA & DPoA w/ my younger brother and a dear friend...for my mother. The reason there are 3 of us...when I'm out of town, my brother is next in line. The dear friend is doing it only for our mother. Mother has a living will in place at the hospital she would go to.

I'm sending soft hugs to you, your mom and other family members as you work through this time.

Susie
Special Hugs,

Susie Kraft
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#6 canon

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Posted 08 September 2008 - 05:48 PM

Sorry to hear about your mother and all the decisions that are coming at you. Everyone has certainly given you alot of good suggestions and options. Quality of life is a big factor and how your mom feels about the options that are out there. I can't think of anything to add.

Wish you the best and keep us posted. You and your mom will be in my thoughts.

Judy
A happy heart is good medicine.

#7 tlcplwp

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Posted 08 September 2008 - 06:33 PM

I thank you all for your wonderful advice and caring words. I am glad I found this forum. I wish you all the very best and will keep everyone in my thoughts.


Nan aka TLCPLWP

#8 susie54

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Posted 09 September 2008 - 01:55 AM

Hi,

I am so sorry you are dealing with so much. This is a decision none of us want to be faced with. My brother has emphysema and is on 100% oxygen and levels dipped in the 70's and he is not doing well but not bad enough for ventilation. He has also smoked all along an it is so hard to see him suffer. Maybe a COPD forum would help more with this question but since she has both restrictive and obstuctive conditions , I would think her doctor might be the best one to judge. My thoughts are with you and your mother. Susie54

#9 Sweet

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Posted 10 September 2008 - 05:43 AM

Hi Nan,

Welcome to the Sclero Forums. I'm sorry you found us due to the grave situation you find yourself in with your mom. I'm a little late in welcoming you, so I wonder what the progress has been since you last posted. I don't have any great advice but I wanted to let you know we are thinking about you, and are here for you when you need us.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 tlcplwp

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Posted 12 September 2008 - 06:53 PM

Hi Everyone,

I just wanted to give you an upate on my Mom. They put her on a Bi_pac (spelling?) today to help with her breathing difficulties. There is a Respiratory Specialist at Strong Hospital ( University of Rochester) who has had some success with Scleroderma patients using an experimental drug call Treprostinil. Have any of you heard of it? Well anyway, I know her conditon is quite serious but it has given us some hope. The plan is to switch hospital on Monday.

Take care,

Nan aka TLCPLWP

#11 Sheryl

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Posted 13 September 2008 - 01:41 AM

Nan, I hope your mother's serious condition stablizes soon. I don't know anything about the drug you mentioned just wanted to let you know I am thinking about you and hope this medication works for your mom.
Strength and Warmth,
Sheryl

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#12 Sweet

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Posted 13 September 2008 - 05:51 AM

Thank you Nan for the update. We are all rooting for you, your mom and the rest of the family.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#13 canon

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Posted 13 September 2008 - 10:19 AM

Hi nan,

So glad someone has stepped forward to give you some hope. Have not heard of the drug that was proposed but it sounds hopeful. The bi pac??, bi pap? sounds much better than a vent. Will continue to keep you all in my thoughts.

Take care of yourself too during this time. Get rest, drink fluids and eat food. We tend to forget food and fluids during times of stress.

Thanks for keeping us informed and please continue to keep us updated.

Judy
A happy heart is good medicine.

#14 HouckRN78

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Posted 13 September 2008 - 05:08 PM

I remember watching my mom deteriorate with lung cancer a few years ago. She was adamant that she wanted everything done to treat the cancer. Unfortunately, it spread throughout her body including her brain and left her confused and only semiconscious. In the end, she slipped into a terminal coma before we reached the point of deciding her code status. I was thankful not to have to watch her pass away on a ventitlator. As a critical care nurse, I knew she would never come off if put on one but I wanted to follow her wishes. The most important thing you can do for your mom is to find out what she wants. The time may come that you must make decisions for her and you will need that power of attorney for healthcare form. Think of the life your mom has lived and her beliefs. It's very difficult to put aside your own grief and fears. You may not agree with your mom on many issues, but this is a decision she trusts you will make in accordance with her wishes.

Peaceful thoughts for you and your mom,
Heather

#15 tlcplwp

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Posted 18 September 2008 - 08:07 PM

Hello Friends,

I don't even know how to begin to tell you this because it is such sad news and my heart is broken. My Mom passed away on Septemeber 13th at 8:03 am. We were all with her. She was a wonderful person and the best Mom ever. Her faith gave her much strenght through all of this. Mom never made it to the University of Rochester to try the new experiemental drug. Her progression was just to severe. If I can find out more about it I will let you all know. I thank you all for all of your support. All diseases are unique and as I mentioned I have Parkinson's Disease and started my own organization in 2001 to give people a caring and supportive enviroment. You all did that for me here. I will keep checking back. You all have my thoughts. I cannot thank you enough.

With love and respect,

Nan aka TLCPLWP

#16 Sheryl

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Posted 19 September 2008 - 12:44 AM

tlctlwp, I'm so sorry to hear of your mother's passing away. I will be thinking of you and your family during your grieving. Please keep us informed on your health and your Parkinson's Disease developments.
Strength and Warmth,
Sheryl

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#17 Margaret

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Posted 19 September 2008 - 02:39 AM

Hi Nan ,

I am sorry to hear about your Mom passing away. I will keep you in my thoughts during this very difficult time. We are about the same age and my Mom is the same age as your Mom......I would be devastated (a total basket case) if she wasn't around since she does so much for me.

Take care, Everyone.
Margaret

#18 Shelley Ensz

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Posted 19 September 2008 - 02:55 AM

Hi Nan,

I'm very sorry to hear that your mother has passed away. I send my heartfelt condolences to you and your family.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#19 canon

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Posted 19 September 2008 - 10:57 AM

Dear Nan,

Words are all we have sometimes to support people and I am so sorry your Mom has passed. She sounded like a wonderful person and very courageous. You and your family will be in my thoughts and wish you peace during this time.

Please keep in touch,

Judy
A happy heart is good medicine.

#20 Nina

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Posted 20 September 2008 - 10:52 AM

Dear Nan ~ Please know that you and your entire family are in my thoughts during this difficult time. I lost my mother over 10 years ago, yet I still reach for the phone to talk with her. It sounds like your mother was a very dear, loving, courageous person, I'm sure your heart is aching. Keep in touch, drop by now and then to let us know how you are making out.
Much love,
Nina (DE)