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In a Palliative Care program


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#1 Judy Devlin

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Posted 19 August 2010 - 05:16 AM

Hi all, Long time since I've posted, but I just have to share this wonderful program that I asked my new primary care physician about- Palliative Care. I have had CREST since 1991, although my symptoms started twenty years before that. Like many here I've seen dozens of doctors, specialists etc., only to be given more tests more drugs all while knowing there is no cure. Well after a stint at Duke Medical University with the best vascular surgeon there to help heal or amputate a finger with possible by-pass, which was not doable, I was told there was nothing more they could do for me unless I wanted a stem cell transplant. I said no to that. I felt like I was given another death sentence and wondered what is my next step. I moved back to my home state and in with my elderly folks, figuring I could at least feel useful helping them out as I was able.

I did some research while looking for a new primary care physician and came across this Palliative Care program which I had never heard of- basically its a maintain/sustain program for chronic illness, cancer, elderly patients and one can ask for it at any stage of one's disease. In Concord, NH, it's considered a pre-hospice program, which made me pause a moment. But as I thought about finding new doctors all the tests the new doctors would order, offers of new (mostly un-trusted drugs in my opinion) the old or 'normal' way to deal with SD didn't make anymore sense to me.

The Palliative Care involves visiting nurses, dieticians, occupational therapists, social workers and 24 hour on call help. I have lost so much weight, under 100 pounds and just had no appetite or after eating a couple of bites I'd feel full. So I am on a medicine that stimulates the appetite and I've put on a few pounds in two weeks. The dietician loves helping people who need to eat cause if we can, WE CAN EAT ANYTHING WE WANT!! (I'm a butter freak:-) Yippee. The nurses help with pain control issues and prescriptions, vital sign monitoring, wound dressing etc. The Occupational therapy has given me all kinds of tools to help me adjust to the loss of my right hand and weakness in general- all my muscles have atrophied because of weight loss etc. And the nurses are wonderful and basically only do what you want or need them to do and they come to you (No waiting in waiting rooms.

They will come as often or as seldom as you want. One can opt out and rejoin anytime and you no longer need a written referral from a doctor to go into hospice. (At least here in NH)

Medicare pays for this program. It's awesome. I am taking care of myself my way, my timing, my needs and these people are so nice, kind unjudgemental and such a welcomed relief from the regular medical community.

Research yourself in your area and see if this might work for you. Mostly I recommend this program for long term SD patients.
It works for me and I love it-sustain/maintain. It has been a blessing!

Take Care,

Judy Devlin

#2 Jeannie McClelland

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Posted 19 August 2010 - 07:47 AM

Hi Judy,

I'm so sorry your illness has progressed to this point, but applaud your bravery, common-sense, and especially your generosity in sharing your story. I know in always trying to keep a positive attitude, we maybe don't talk/think enough about about the issues you've brought up. Thank you.

I've been fortunate enough to have had some dealings with a palliative care program and agree with absolutely everything you said. The standard of care the staff of these programs offer is amazing and the things they can do to improve our quality of life have to be experienced to be believed. An invisible benefit of these programs (and hospice) is the relief from responsibility they give our families and friends.

I wish I could send you all of my extra weight! I'd like to give you some energy, some good blood vessels, and some Colorado sunshine for mid-winter. Till I figure out how, will you settle for a hug and all my best wishes?
Jeannie McClelland
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#3 Judy Devlin

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Posted 19 August 2010 - 08:34 AM

Hi Jeannie

Yes yes to this "An invisible benefit of these programs (and hospice) is the relief from responsibility they give our families and friends" And for myself living with two 80 year old parents, having a regular nurse etc., walking into the house on a regular basis also is like help for my parents. An extra pair of eyes so to speak. Many of the OT's tips I pass on to my parents so its such a big win for all of us.

I was 'retired on disability' before both my parents retired and have felt that I kind of showed them how to be retired happily etc., routines, hobbies, living in the moment etc and by my having home care it will 'teach' them that its okay to have help, they can stay in their home and feel okay about strangers coming into their space.. So you might say I also had an ulteria motive..;-)as I know how limited I am strengthwise to really be of much help to them.

Judy
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network

#4 debonair susie

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Posted 19 August 2010 - 09:30 AM

Hi Judy,

I have missed you and as Jeannie mentioned in her post...How wonderful that you shared this information about Palliative Care and that Jeannie further confirmed your findings!
I am so relieved, for you, that you are benefitting from their services. I'm also sure that your folks must feel a great sense of relief, knowing that you are in good hands, when needed.

I also greatly appreciate the insight you have, projecting the positive effect of Palliatve Care and the familiarity of their services, should the need arise for either or both of your folks. Very wise, as well as selfless you are, Dear Judy!

Thank you...so much, for checking in and letting us know you are as comfortable as you can be and are being cared for as you are.

Sending over a supply of {{{VERY SOFT HUGS}}}...to be used as needed... for you, your mom and dad.
Special Hugs,

Susie Kraft
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#5 Shelley Ensz

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Posted 20 August 2010 - 03:33 PM

Hi Judy,

I'm glad that you have discovered palliative care, and I think you are the first one to ever mention such a program around here. I was not aware of it at all, I really thought our only options were regular medical care until hospice care time.

I don't think you can repeat it often enough or loud enough or clearly enough that people who have severe weight loss due to illness like scleroderma can (and should) eat everything and anything that appeals to them. This is not the time to be concerned about eating heart healthy, etc. -- it is time to go for the gusto until a normal weight is achieved and maintained. Who'd think it would be butter? (I'd go for ice cream myself, should I ever need more caloric enhancement, which unfortunately I probably never will.)

You are always such a delight and inspiration to us all. I'm hoping you continue to enjoy some improvements with palliative care and thank you for making us aware of it!
Warm Hugs,

Shelley Ensz
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#6 miocean

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Posted 20 August 2010 - 03:51 PM

Judy,
I, too, had never heard of Palliative Care. So many people are afraid to bring in Hospice because it tends to sound like a death sentence. It is great to know there is another option. I wish the best for you.

miocean
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#7 Judy Devlin

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Posted 20 August 2010 - 10:45 PM

Hi Shelley,

I bet Gene would benefit from this program also.

Here's a link and a summary about Palliative care:

What is Palliative Care
Definition Palliative care (pronounced pal-lee-uh-tiv) is the medical specialty focused on improving overall quality of life for patients and families facing serious illness. Emphasis is placed on intensive communication, pain and symptom management, and coordination of care.

Palliative care is provided by a team of professionals working together with the primary doctor. It is appropriate at any point in a serious illness and can be provided at the same time as treatment that is meant to cure.

Ensures quality of life
Palliative care is not a one-size-fits-all approach. Patients have a range of diseases and respond differently to treatment options. A key benefit of palliative care is that it looks at the patient as a whole in order to meet the individual needs of each person and family.


Palliative care relieves symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. It helps patients gain the strength to carry on with daily life. It improves their ability to tolerate medical treatments. And it helps them better understand their choices for care.

Palliative care benefits both patients and their families. Along with symptom management, communication and support for the family are key. The team helps patients and families make medical decisions and choose treatments that are in line with their goals.

Different from hospice
Palliative care is not limited to hospice care. Palliative care may be provided at any time during a person`s illness, even from the time of diagnosis. And, it can take place at the same time as curative treatment.

Hospice always provides palliative care. However, hospice is focused on terminally ill patients—people who no longer seek treatments to cure them.

Provided by a team
Usually a team of experts, including palliative care doctors, nurses and social workers, provides this type of care. Chaplains, massage therapists, pharmacists, nutritionists and others might also be part of the team. Typically, you get non-hospice palliative care in the hospital through a palliative care program. Working in partnership with your primary doctor, the palliative care team provides:

•Close, clear communication
•Expert management of pain and other symptoms
•Help navigating the healthcare system
•Guidance with difficult and complex treatment choices
•Emotional and spiritual support for you and your family
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network