Telling your Children

[Guest guest]

I told all three of my children as soon as I was diagnosed. They were age 20, 22, and 29. I couldn’t imagine not telling them. We’ve always been very open, honest and communicative about everything. I need their support and companionship, I need to be able to talk about my health issues and they need to be able to talk about it too.

They know I want to live as normal a life as possible, but they also understand that I need help sometimes and they respect that and are as attentive as they can be to me.

They are all still living their lives and we talk more about their stuff than mine because I don’t want to burden them with all the details of my daily struggles. But when I need to talk or cry they are there for me and I for them. I think it has brought the three of them closer together as siblings too, they know someday they will have to rely on each without me.

My oldest daughter lives in California, so she isn’t near me, but we talk daily, is an awesome listener and also lets me cry when I need too. My son will graduate from Central Washington University with a degree in Nutrition, so he is like my diet and exercise coach. He wants me to have the lung transplant and even had

the word “hope†tattooed on his arm. My youngest daughter is working toward a medical assistant certificate program at the community college and works in a hospital where she serves patients their meals. She is my little trooper and will probably be my caretaker, should I need one. She has gone with me to almost all of my doctor’s appointments and helps me remember stuff.

I just believe that life is about good and bad, sad and happy, life and death. It’s all about living and learning and sharing the good times and the bad times with one another.

The disease is ugly and negative and telling them about my disease and the fatal diagnosis was difficult and sad.. But dealing with it together is the only way I know.

Did telling them change our relationships with one another into a negative? NO WAY!

We are a family united in hope, love, and courage!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 18, 2010 2:03:22 PMSubject: Re: Workshops in your area plus -- I am New

I just found out that my oximeter won't be delivered until Thurs. I am so afraid to do much without it. I did have hubby take big concentrator upstairs yesterday so that I could do some special cleaning jobs. It did work well. I went to the gym this morning and don't use air there. I did use my pro-air and I only walk very slowly on the treadmill and recumbent bike is pedaled slowly. I guess I am still in denial about all of this. I have some tanks that I can hang in a bag on my shoulder but haven't used them yet at all, nor have I used any air while out and about which is only twice a week. I walk slowly and haven't really been breathless..

Also, how did you tell your children about your dx? About a week after I was dx, I told my daughter (age 52) who didn't understand what it is and I didn't go into detail. I simply told her that I need oxygen when walking. She worked for a lady years ago who had emphysema and told me on New Years day that the lady would never wear her oxygen when going out and she was gone within 2 years. My problem is also my 48 year old son. I haven't told him anything. I am concerned about how they both would take the truth. I would really rather not go into detail with them. Has anyone been in this situation? Also, my hubby is not quite convinced my stats go as low as they do. It was his initial idea to get the oximeter. Such is my dilemma.

----- "Alice Foote" <alydiafoote@ yahoo.com> wrote: > > > >

Hello, I am new.. I have been reading your notes for a little over a month and I am learning a lot.

Introducing myself: I just turned 80. I was diagnosed with PF in June of 05, verified by biopsy the following August by my Pulmonologist in Kalamazoo, MI: diagnosed NSIP March of 06 after tests at the University of Michigan Teaching Hospital in Ann Arbor, MI.

You have referred to this as a "life changing" disease and it is!! We made the decision in 08 to leave our loved community in Kalamazoo, MI and move to Champagn-Urbana, IL where our daughter lives and near our son who lives in Crawfordsville, IN. We have spent a year getting used to the medical system here

and doctors.

I have a pulmonologist here but I continue my relationship with Ann Arbor and will return to the specialists there in the spring for tests. I also have regular testing here.

I am down to 5 mg of pred, take 100 mg of Imuran, take ranididan for acid reflux (for comfort and because I understand that esophugus problems can be "real problems." I also take 3 NAC --3 a day if I can get them down -- supposed to be on an empty stomach with fruitjuice, according to what I have read, and i do not have trouble --- I just forget because I take everything else with a meal: above plus vitamins, calcium, aspirin, lopressor, bactrim (every other day to guard aginst infection.)

I, like all of you, try to avoid crowds, etc. I am maintaining quite well, but I lack energy much of the time and seem to have a bad -- spike in blood sugar, should I eat things that are sweet, so i have to be careful to "eat well." If I am not careful, I get weak, and very fatigued, blurry eyes, muffled ears. This has been puzzling to my docors. Also, I have had a bad reaction to Prylosec -- these are all personal idiosyncracies, I guess. We all respond differently. If any of you can shed light...

The reason I am writing now is that I took the course Chronic Disease Management in Kalamazoo and it is an excellent course and the manual -- or book by the Stanford people is very good. There were seven of us in the class, each with something different. The thing we all had in common was the Chronic Disease part. When this course is put on, the cost is about $5, sometimes free -- the book is about $18.00. At least, this is my experience.

I, too, get discouraged because as you say, "people don't "get it." --That is most people don't. Some people do and, like some of you, I have had wonderful family support; but i, too have felt there is "no one" to talk to-- no support group -- because, as you say any support program deals with COPD or emphasema so I am very happy to get in on these discussions and that this "chat" experience is available.

I am understanding from you the importance of keeping the lungs going in exercise -- and have to keep nudging myself to walk, do weights, etc. to keep my self maintaing, as many others do.

I do not know what SATS are and I have not paid real attention to the reports as you all have. I will have to start... You all have so much knowledge.

Alice --NSIP '06

It is helpful to hear of your experiences. I find it hard to keep such a balanced life style and find that if/when I overdo, I pay for it.

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> From: worth <hope2thend (AT) yahoo (DOT) com>> Subject: Workshops in your area> To: "Breath Support" <Breathe-Support@ yahoogroups. com>> Date: Saturday, January 16, 2010, 10:39 PM> > > >

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There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!>

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