Dr. apt after my last ct on my lungs.

[Guest guest]

Hi hi, everyone. i know your all thinking who the heck is this..

cause i never write. Well My name is janet patterson. i live in

maryland i have pul. fibrosis. Was diagnosed over two years ago.

Don't remember the exact date. I am 54 years old. Living alone with

other medical problems on top of my respitory ones that started at 6

months old with asthma. Long story short. I have this last

appointment with this new dr. I had planned on seeing him in feb on

my birthday and missed it. Not sure why if sick or what.. I also

fell and broke my arm at easter. Osteoporosis, have broken both

ankles and both arms. thru out the years. I am a diabetic, with high

blood pressure. Well my ill ness has gotten so severe. I had no idea

it would become so tuff. I struggle each day just to breathe. I wake

up gasping for breath.. I have gone from 2 liters to 4 liters at home

and 5 if trying to bathe. Mostly i just sleep. am so tired all the

time. My feet have started to turn blue.. and hurt so i wear socks in

July.. with east coast heat. Crazy.. I have a nurse that comes in and

helps me every other day. And she does all my house work and laundry

and shopping. I have been taking high doses of pain medication for

the last 2 years. Now i just hurt all the time. I get yeast

infections often. I think because of the steroids. like prednizone.

I have sworn i never want to take the crazy medication again. But

guess i will cross that bridge when i come to it. I am not a

candidate for a lung transplant due to the vast medical problems i

have. And large amount of medications i take all ready. I just hope

this new doctor will be real with me. And not try to sugar coat it by

saying we dont know how long you have ,, you dont have a expiration

date stamped on your feet. I know that.. but i also see how far down

hill i have come and just dont think i can take much more for much

longer.. I am not suicidal.. im just tired of being very sick for a

long time all alone.. Who knows miricles happen all the time. If

there is a cure out there with my name on it. I would be first in

line. I dont want to leave my kids and grandkids. But waking up each

day and laying in bed doing breathing treatments and taking insulan.

and coughing till i choke. then being exhausted from just fighting to

breathe. Well i think this last ct scan is going to be my last ct

scan.. I will find out tomorrow.. and i am so nervous..and scared

cause even though im living this i still am not ready.. If you dont

mind i will hope you will put me in your prayers tomorrow.. I will

need all the help i can get. God Bless and thank you.. Janet.

[Guest guest]

Janet

Ok, you want no sugar coating so I won't give you any here either. I do

really feel for you with the PF and the other conditions. I think PF is

enough of a problem by itself, but when you add other things such as you

have then its pretty overwhelming.

So, now the question is what can you do? First, be insistent with the

doctors. Go with a list of questions and issues. Tell the doctor what

you want. Now, of course, first you have to determine what that is. Here

you state no more prednisone and I surely understand that. You talk

about pain killers and I sure would take if I was experiencing the kind

of pain you describe. Now, I do question are you on enough oxygen,

especially when moving about? Are you checking your own saturation

levels? If not, you really do need to be doing so.

The new doctor is no more going to give you an expiration date thn any

of us are nor can he or anyone predict anything. As to the CT it is not

going to tell you anything you can't tell by your saturation levels,

your breathing, and your PFT's. You know how you're feeling and doing

going in. Doctors are trained to cure and they are helpless with PF

because they can't cure. Tell him, if its what you want, that you want

to know how to live in the least pain possible, or do the most, or

anything that is important to you.

Now, I know you feel, as do most of us at times, that you have no

control. However, you do have some, however slight it might seem. While

a doctor can't give you time frames, he can certainly discuss the

various future stages to expect and you can plan what is best for you at

each stage. It's great you're getting the nurse help today. But, with

the doctor's help, chart what more you need, what you might need at the

next level and then, thereafter. Now this may not be the way you like to

think but it sounded as if it was since you want no sugarcoating. I can

say honestly to think of all those stages and plan what I want at each

sure does help me.

I'm 58 and I live alone. I'm more able to do things than you at this

point but I understand many of the issues you're discussing. It's tough

to think when I can't take care of myself what arrangements do I want

between home with a caregiver, small group homes and assisted living.

It's tough then to think ahead of hospice situations. It's scary. You

have many health issues to balance but in each case its your comfort and

safety you're after. I have many and have to keep deciding which get

priority at a given time as I just can't focus on them all at once.

Now, I say the following from very personal experience and that is the

most important doctor in my life today is my mental health counselor. My

pulmonologist can't cure PF, although he's great if I have an infection

or particular setback. But, the help with coping with the diseases and

life is very important to me and having someone who really understands

what is important to me. My vision and hearing are somewhat down the

list although I have normal checkups. Dentist is further down than I

should let it be. Neurologist is mostly irrelevant as those issues are

relatively immaterial compared to the PF. Gastroenterologist is

important to keep check on GERD. Dermatologist is somewhat along the

lines of " who cares " . Psychiatrist only as often as refill

prescriptions needed as he really does nothing at this point.

Sounds to me like the diabetes and the blue feet and being sure you're

properly oxygenated are the most important but even more so is pain

management, whatever that means or takes. Now, whether anything can be

done to give you more awake or alert time, I don't know. Thats a doctor

question. What I do know is, however much time you do have awake and

alert, find ways of making the most of it. That doesn't have to be

something major but maybe its just talking or chatting with friends or

listening to music you like or watching your favorite show or anything

of interest. Make your environment as pleasing to you as you can. As it

shrinks (we become more confined) that is more important.

Also, as you figure out your wishes for each possibility the future

brings, its important to make sure your kids understand. Oh yes, some

will try to get you to do what you feel isn't the right choice for you.

You'll just have to ask them to support you. Doctors are the same way.

The decision on any med is your choice, once you understand the

arguments both way. They sometimes prescribe and make it seem like you

have no choice. But, you do. Just make educated choices. Insist they

help educate you as to all sides of the issues, not just what they

recommend. No human or doctor has ever been in your position. They don't

feel like you and have your make up and think like you. We may come

closer here but we're all so different.

So, for tomorrow, go strongly with a firm idea of what you want and

insist you get it. It's your life. You're the manager. They are your

advisors. Good luck and please now that you've spoken stay with us and

in contact.

>

> Hi hi, everyone. i know your all thinking who the heck is this..

> cause i never write. Well My name is janet patterson. i live in

> maryland i have pul. fibrosis. Was diagnosed over two years ago.

> Don't remember the exact date. I am 54 years old. Living alone with

> other medical problems on top of my respitory ones that started at 6

> months old with asthma. Long story short. I have this last

> appointment with this new dr. I had planned on seeing him in feb on

> my birthday and missed it. Not sure why if sick or what.. I also

> fell and broke my arm at easter. Osteoporosis, have broken both

> ankles and both arms. thru out the years. I am a diabetic, with high

> blood pressure. Well my ill ness has gotten so severe. I had no idea

> it would become so tuff. I struggle each day just to breathe. I wake

> up gasping for breath.. I have gone from 2 liters to 4 liters at home

> and 5 if trying to bathe. Mostly i just sleep. am so tired all the

> time. My feet have started to turn blue.. and hurt so i wear socks in

> July.. with east coast heat. Crazy.. I have a nurse that comes in and

> helps me every other day. And she does all my house work and laundry

> and shopping. I have been taking high doses of pain medication for

> the last 2 years. Now i just hurt all the time. I get yeast

> infections often. I think because of the steroids. like prednizone.

> I have sworn i never want to take the crazy medication again. But

> guess i will cross that bridge when i come to it. I am not a

> candidate for a lung transplant due to the vast medical problems i

> have. And large amount of medications i take all ready. I just hope

> this new doctor will be real with me. And not try to sugar coat it by

> saying we dont know how long you have ,, you dont have a expiration

> date stamped on your feet. I know that.. but i also see how far down

> hill i have come and just dont think i can take much more for much

> longer.. I am not suicidal.. im just tired of being very sick for a

> long time all alone.. Who knows miricles happen all the time. If

> there is a cure out there with my name on it. I would be first in

> line. I dont want to leave my kids and grandkids. But waking up each

> day and laying in bed doing breathing treatments and taking insulan.

> and coughing till i choke. then being exhausted from just fighting to

> breathe. Well i think this last ct scan is going to be my last ct

> scan.. I will find out tomorrow.. and i am so nervous..and scared

> cause even though im living this i still am not ready.. If you dont

> mind i will hope you will put me in your prayers tomorrow.. I will

> need all the help i can get. God Bless and thank you.. Janet.

>

[Guest guest]

Janet,

Welcome aboard!! I'm so glad you decided to post but I'm so sorry you are going through so much on your own. Is your family nearby? I hope you have company and companionship through this.

You will be in my thoughts and prayers tomorrow as you see your doctor. Please let us know how the appointment goes. I hope you comes through with the honesty you are looking for. Sometimes that's difficult to find.

Consider yourself hugged!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Dr. apt after my last ct on my lungs.

Hi hi, everyone. i know your all thinking who the heck is this.. cause i never write. Well My name is janet patterson. i live in maryland i have pul. fibrosis. Was diagnosed over two years ago. Don't remember the exact date. I am 54 years old. Living alone with other medical problems on top of my respitory ones that started at 6 months old with asthma. Long story short. I have this last appointment with this new dr. I had planned on seeing him in feb on my birthday and missed it. Not sure why if sick or what.. I also fell and broke my arm at easter. Osteoporosis, have broken both ankles and both arms. thru out the years. I am a diabetic, with high blood pressure. Well my ill ness has gotten so severe. I had no idea it would become so tuff. I struggle each day just to breathe. I wake up gasping for breath.. I have gone from 2 liters to 4 liters at home and 5 if trying to bathe. Mostly i just sleep. am

so tired all the time. My feet have started to turn blue.. and hurt so i wear socks in July.. with east coast heat. Crazy.. I have a nurse that comes in and helps me every other day. And she does all my house work and laundry and shopping. I have been taking high doses of pain medication for the last 2 years. Now i just hurt all the time. I get yeast infections often. I think because of the steroids. like prednizone. I have sworn i never want to take the crazy medication again. But guess i will cross that bridge when i come to it. I am not a candidate for a lung transplant due to the vast medical problems i have. And large amount of medications i take all ready. I just hope this new doctor will be real with me. And not try to sugar coat it by saying we dont know how long you have ,, you dont have a expiration date stamped on your feet. I know that.. but i also see how far down hill i have come and

just dont think i can take much more for much longer.. I am not suicidal.. im just tired of being very sick for a long time all alone.. Who knows miricles happen all the time. If there is a cure out there with my name on it. I would be first in line. I dont want to leave my kids and grandkids. But waking up each day and laying in bed doing breathing treatments and taking insulan. and coughing till i choke. then being exhausted from just fighting to breathe. Well i think this last ct scan is going to be my last ct scan.. I will find out tomorrow.. and i am so nervous..and scared cause even though im living this i still am not ready.. If you dont mind i will hope you will put me in your prayers tomorrow.. I will need all the help i can get. God Bless and thank you.. Janet.

[Guest guest]

(((Janet))) When was your O2 levels last checked? Do you have an oxymeter? I'm just wondering if you need to crank it up a bit more to warm your poor feet up, or whether it's a result of your other problems.

I'm glad you have help, and I do feel your pain re the yeast infections. I frequently get them, even in my mouth and I have found that I need to be absolutely scrupulous about my oral hygeine at all times to keep it under control there.

Miracles do happen and perhaps your new doc can help you feel better. Nope, non of us have an expiry date, but I see nothing wrong in asking for your expected prognosis. I asked in May and was given 2 years based on my pft's, but I'm going to ask again in October. I figure if I'm still given 2 years then I've gained 6 months if that makes sense! If I'm given 18 months, then I haven't lost anything.

Take care of yourself

Love Ze xx>> Hi hi, everyone. i know your all thinking who the heck is this.. > cause i never write. Well My name is janet patterson. i live in > maryland i have pul. fibrosis. Was diagnosed over two years ago. > Don't remember the exact date. I am 54 years old. Living alone with > other medical problems on top of my respitory ones that started at 6 > months old with asthma. Long story short. I have this last > appointment with this new dr. I had planned on seeing him in feb on > my birthday and missed it. Not sure why if sick or what.. I also > fell and broke my arm at easter. Osteoporosis, have broken both > ankles and both arms. thru out the years. I am a diabetic, with high > blood pressure. Well my ill ness has gotten so severe. I had no idea > it would become so tuff. I struggle each day just to breathe. I wake > up gasping for breath.. I have gone from 2 liters to 4 liters at home > and 5 if trying to bathe. Mostly i just sleep. am so tired all the > time. My feet have started to turn blue.. and hurt so i wear socks in > July.. with east coast heat. Crazy.. I have a nurse that comes in and > helps me every other day. And she does all my house work and laundry > and shopping. I have been taking high doses of pain medication for > the last 2 years. Now i just hurt all the time. I get yeast > infections often. I think because of the steroids. like prednizone. > I have sworn i never want to take the crazy medication again. But > guess i will cross that bridge when i come to it. I am not a > candidate for a lung transplant due to the vast medical problems i > have. And large amount of medications i take all ready. I just hope > this new doctor will be real with me. And not try to sugar coat it by > saying we dont know how long you have ,, you dont have a expiration > date stamped on your feet. I know that.. but i also see how far down > hill i have come and just dont think i can take much more for much > longer.. I am not suicidal.. im just tired of being very sick for a > long time all alone.. Who knows miricles happen all the time. If > there is a cure out there with my name on it. I would be first in > line. I dont want to leave my kids and grandkids. But waking up each > day and laying in bed doing breathing treatments and taking insulan. > and coughing till i choke. then being exhausted from just fighting to > breathe. Well i think this last ct scan is going to be my last ct > scan.. I will find out tomorrow.. and i am so nervous..and scared > cause even though im living this i still am not ready.. If you dont > mind i will hope you will put me in your prayers tomorrow.. I will > need all the help i can get. God Bless and thank you.. Janet.>

[Guest guest]

Welcome Janet ... As I read your post I feel sad because you have been through so much. I know how hard it is to deal with "lots of stuff" 'cause I do too.

I probably wouldn't qualify for transplant even if I choose to have one. Same reason, vast medical problems and I'm too old...70 next month.

Even tho' it's tough, I'm glad you have the O2 to help you and rest assured you are in prayers. We are a prayin' bunch here.

Keep us posted and I'll watch for your posts.

MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Dr. apt after my last ct on my lungs.

Hi hi, everyone. i know your all thinking who the heck is this.. cause i never write. Well My name is janet patterson. i live in maryland i have pul. fibrosis. Was diagnosed over two years ago. Don't remember the exact date. I am 54 years old. Living alone with other medical problems on top of my respitory ones that started at 6 months old with asthma. Long story short. I have this last appointment with this new dr. I had planned on seeing him in feb on my birthday and missed it. Not sure why if sick or what.. I also fell and broke my arm at easter. Osteoporosis, have broken both ankles and both arms. thru out the years. I am a diabetic, with high blood pressure. Well my ill ness has gotten so severe. I had no idea it would become so tuff. I struggle each day just to breathe. I wake up gasping for breath.. I have gone from 2 liters to 4 liters at home and 5 if trying to bathe. Mostly i just sleep. am so tired all the time. My feet have started to turn blue.. and hurt so i wear socks in July.. with east coast heat. Crazy.. I have a nurse that comes in and helps me every other day. And she does all my house work and laundry and shopping. I have been taking high doses of pain medication for the last 2 years. Now i just hurt all the time. I get yeast infections often. I think because of the steroids. like prednizone. I have sworn i never want to take the crazy medication again. But guess i will cross that bridge when i come to it. I am not a candidate for a lung transplant due to the vast medical problems i have. And large amount of medications i take all ready. I just hope this new doctor will be real with me. And not try to sugar coat it by saying we dont know how long you have ,, you dont have a expiration date stamped on your feet. I know that.. but i also see how far down hill i have come and just dont think i can take much more for much longer.. I am not suicidal.. im just tired of being very sick for a long time all alone.. Who knows miricles happen all the time. If there is a cure out there with my name on it. I would be first in line. I dont want to leave my kids and grandkids. But waking up each day and laying in bed doing breathing treatments and taking insulan. and coughing till i choke. then being exhausted from just fighting to breathe. Well i think this last ct scan is going to be my last ct scan.. I will find out tomorrow.. and i am so nervous..and scared cause even though im living this i still am not ready.. If you dont mind i will hope you will put me in your prayers tomorrow.. I will need all the help i can get. God Bless and thank you.. Janet.