robertjr
@robertjr
@robertjr
Posts: 69
Joined: Jul 14, 2017
copd end stage.
Sorry havent been spending much time writing lately.Been going to hospital few times for breathing lately..Had a few discussions with pulmonologist,fev was 16 ,going to needa wheel chair.Right now cant even walk out to the car.Even room toroom getting hard..I realize copd doesnt get better but im only 63 not that old.
Liked by Errol, Volunteer Mentor, Jackie, Volunteer Mentor, Linda, alumna mentor, Bill ... see all
cognac
@cognac
@cognac
Posts: 89
Joined: Dec 06, 2017
@ppeschke Robertjr I understand you saying that every day chores and activities have gotten to be too much. I am single and love alone so I have nobody to help get groceries or run errands or anything. My only support person is my sister but she has a very hectic life. You’re not alone!
I am wondering how can you get someone to understand your fatigue and some days just feeling sick? I feel her getting frustrated with me. I have declined rather quickly and I feel terrible having to ask her for help sometimes & I just feel a little like she thinks I’m just faking it at times.
@ppeschke, I understand how you feel and how frustrating it is for you. I, too, live alone. Unfortunately I have no family. I’ve started looking for someone to help me that I can afford before things get too bad. Good luck.
jo54
@jo54
@jo54
Posts: 57
Joined: Aug 02, 2017
@waterboy Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?
I have family but I think we are alone as the disease progresses. We have no outward signs of being ill. Family thinks I should walk more. I can’t breathe after a few steps. I have always loved to read and I can’t settle enough to get involved in a book. I seem to stare at the wall a lot. I get upset with me and my lack of drive. I am thankful for what I have. I do agree with each bout the illness progresses. Am now coming off one. I will be better tomorrow. We are all different but so alike. There is always someone who feels worse than we do. Pray for each other as we are never completely alone. God loves us and cares for us.
oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@waterboy Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?
@jo54 You are right. You are never alone. Lots of times I cannot breathe and I am short of oxygen while on the CPAP in my bed at night or in my big comfy chair. My family thinks I am nuts. So do most doctors.
Linda, alumna mentor
@llwortman
@llwortman
Posts: 443
Joined: Sep 02, 2016
@waterboy Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?
You are not Nuts and I am willing to bet your family is so scared they do not know what to do.
Perhaps learning how to breath with a relaxation tape or assistance will help you? It helped save my life!
Dr Amit Sood has a lot of helpful suggestions in a book Stress Free Living.
linda
penlee
@penlee
@penlee
Posts: 28
Joined: Aug 29, 2017
@waterboy Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?
Jo54, your post has heart and wisdom. You (we) are never alone and God is ever faithful to be with us. It must be difficult for family to watch the activity changes and we still look the same. Praying for all my PF brothers and sisters that you will find a place within yourself of comfort and peace. You are loved.
cognac
@cognac
@cognac
Posts: 89
Joined: Dec 06, 2017
Linda, alumna mentor
@llwortman
@llwortman
Posts: 443
Joined: Sep 02, 2016
My life passion for the past 10 years as a lung cancer survivor, with all of the challenges to breathe through so much, is to help research save lungs and lives. My heart aches for everyone with lung disease. This is why I respect the opportunity CONNECT gives to all of us.
We must ban together and fight for each other and share our feelings of fear and loneliness. Each of your messages are so important. If we can encourage others to join our voices, I believe we can become one voice to help raise awareness. With awareness we can educate the world. With education and research we can save lungs and lives.
Thank you for having the courage to share your true feelings. You all are amazing and I care about each one of you so much. There are many ways we can raise awareness about these horrible lung diseases together we can help Mayo Clinic lung researcher’s find a cure. We are all in this together. Cyber hugs to patient, moderator and mentor.
linda
robertjr
@robertjr
@robertjr
Posts: 69
Joined: Jul 14, 2017
@waterboy Alive is a condition, living is mental. Sometimes I wonder if being alive is worth not living?
cognac,were not alone thereare times i feel useless ,get frustrated not doing what i know i should be able to do.But my wiife and kids
are there to help me.and there are so many people willing tohelp once they realize you have trouble breathing.
bobp
@bobp
@bobp
Posts: 1
Joined: Jan 14, 2018
good morning i have just joined group as i have been diagnosed with stage 4 copd and they are reccomending a lung transplant
i guess i am on here looking for some thoughts on this as i am a 52 year old male whom this disease has hit really hard and out of nowhere
i woke up march of 2017 with a breathing issue and within this time have been told i need lungs
really hard yo swallow but i can tell you it has taken its toll on my health
i have lost my appetite losing 70 lbs and my activities have diminshed to other than work and rehab to watching tv i hope you all are well today and God Bless
oldkarl
@oldkarl
@oldkarl
Posts: 605
Joined: May 25, 2016
@bobp The only thing I have to offer is to insist that you get a second and a third dX from mds in completely unrelated clinics.
Liked by Jamie Olson
I have just joined the group as well. I was diagnosed with CO in late 2013 and have not been able to work full time since. I don't seem to be as bad off as some of the other posts I have read. I can still get around somewhat. I can still do laundry and dishes but that's about it. I still drive. I have lost 40 pounds since 2013. Is this a symptom of COPD? No matter what I eat I can't put on any weight. I have been referred for evaluation for a double lung transplant to begin next week .I live in the same city where the transplant will be done. Will I be able to stay at home through the evaluation process? Thanks for listening. KTB.
REPLY
@ktb77799 I have just joined the group as well. I was diagnosed with CO in late 2013 and have not been able to work full time since. I don't seem to be as bad off as some of the other posts I have read. I can still get around somewhat. I can still do laundry and dishes but that's about it. I still drive. I have lost 40 pounds since 2013. Is this a symptom of COPD? No matter what I eat I can't put on any weight. I have been referred for evaluation for a double lung transplant to begin next week .I live in the same city where the transplant will be done. Will I be able to stay at home through the evaluation process? Thanks for listening. KTB.
Hello KTB,
I am a dietitian who has severe asthma. Weight loss is common with COPD. You are using a lot of energy to breath and get through the day. Eating small nutrient rich meals/snacks 6 times per day is recommended. If you able to see a dietitian they can put together a meal plan for you to follow. You will really want to focus on your nutrition as you move into the transplant eval/prep.
Liked by Jackie, Volunteer Mentor, Linda, alumna mentor
littleonefmohio
@littleonefmohio
@littleonefmohio
Posts: 65
Joined: Mar 19, 2018
@oldkarl @robertjr I wonder if you and @ppeschke happen to have more than simple COPD? I have this, but in my case it is part of my Amyloidosis/LiteChain hATTRwt. My lungs are filled with nodules and lesions and other growths. Some clinics also call it Mixed Connective Tissue Protein Deposit Disease, or some variant. Most of the material notes that COPD is an early and continuing stage of several mutations of Amyloidosis. The best early tests are the SERUM FreeLiteChain (sFLC) and the 24 hour urine collection and protein test. If the sFLC returns high light chain >1.6 mb/dL and/or Heavy chain protein >1.9 mg/dL, the mis-folded protein is a problem. This disease can be treated now with Patisiran and some other just released meds. But the most important thing I can say is “Don’t give up. I am at the point I can not go up to the third step of my step ladder, but I can still celebrate being alive. https://bit.Ly/1w7j4j8
Prayers for you Robertjr. I also have COPD and I am 57. My mother had it also. I will pray for your body to heal. God Bless.
Liked by Linda, alumna mentor
robertjr
@robertjr
@robertjr
Posts: 69
Joined: Jul 14, 2017
@jamienolson hI @robertjr. I’m sorry to read this post- it hit’s home. My Dad has COPD. You are right….63 is young. I wish I could say I hope things get easier but with COPD things don’t get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don’t mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?
sending peace your way. 🙂 Jamie
Jamie ,thank you for the wonderful message.Im in a support group,its so nice to talk topeop!e about it.Just seems like any problemturn into another step backwards.colds,pnemonia aflu,and this might sound unusual,i have had grand mal seizures sincei was 5 and since copd i get worse as far as copd aftereach seizure.Take so many things me and pharmicist and ox company onfirst name.basis.My wife and children are so helpful make things so much easier.
@waterboy
In reply to @robertjr
Robert… I am on the high end of the moderate stage, I am also a Alpha1 (MW)……. have you ever been tested? You can get it done for free. Some days just standing at the counter helping the wife make a meal is a stretch.