Newbie. Hi everyone. Any help advice for any extra treatments appreciated. Xx

[spiritinthesky]

I was diagnosed with COPD after a bronchoscopy a few years ago. I gave up smoking five years ago as my asthma was getting bad. Have a nebulising machine with Ventolin and saline to get the horrid mucus up. Been put on different sprays and higher saline that is strong and really makes you cough your lungs up. Gradually been more tired and less energy. Very depressed as use to be a very hyper fun lady. Now I do not drink alcohol, smoke or live any kind of fun life. Last year had an operation to have my gallbladder out (hereditary) my father had his burst. They took it out although it only had two stones in and should not have as it was healthy. They found a stone logged in my bile duct after a MRCP scan and ended up having a ERCP done. It was very painful and brutal. The consultant was horrible and said you need (common bile duct) sort off cutting as it is so narrow. Was not letting bile flow out. Sphincterotomy was done. Not been the same since then either. Lost five stone over 9 months even on ensure nutritional drinks and oats as eating makes me feel sick and vomit. I can now eat very limited amounts of organic and gluten free foods. NO fat in anything like a juicy steak or be on toilet all day and the pain in my stomach would cripple me. Just so sick of being sick. I try really do. Put some make up on few weeks ago and got help dressing as was so out of breath. Sat near the harbour in my wheelchair watching couples walk by and families laughing, care free. It was lovely to get out for a few hours but suffered later as have bad allergies, hay fever and pollen was high that day. Cannot have my grandson as really can not barely look after myself. No patience or zest for anything the way am feeling. Rushed in hospital three weeks ago as had an exasperation bad. I explained to doctor needed iv steroids to open my airways and strong nebs via mask. Took an hour to get a neb and 6 hours to get any iv and a saline drip. Kept in over night and monitored. Asked for pain relief as chest like an elephant on it. Was told staff too busy. Ended up taking my own as was told had to wait for doctor to sign a prescription for them. Doctor came early morning to see me and said you know we cant do anything for COPD so we sending you home. I was livid as still very short of breath and wheezing. Had to stabile it at home with back to back nebs and spays. Humidifier on and fan. Sorry for the vent lol just seem to moan these days as getting me so down. Not sure what else I can do as try to do what I can but end up over doing it (sure you peeps know that one) just want some quality of life back. Not a good day for me and the weather is gorgeous and I am stuck in the bedroom where cooler feeling really sad. Family do not understand really just how deliberating this illness is. Hope you are all getting the help you need, Not sure what else can help. Thanks for reading and again sorry just a really bad day. Angel Xxxxx

[Jensmom]

Hi and welcome. I'm sorry it took me so long to respond, haven't been very good about keeping up lately. I'm so sorry your going through so much, I can relate very much. I'm stage 4 severe and on oxygen 24/7. Just today I had to miss out on a baby shower for a close friends daughter and the carnival with both my grandchildren cuz it's 105 heat index and can't be in it. Like you I struggle to do everything. On February 11 I was taken by ambulance to hospital and I could not breathe at all. They ended up incubating me and I was in induced coma 5 days. Sepsis pneumonia. They said I'm very lucky and believe it or not, I do feel lucky. I was so scared. I guess some breath is better than none. I was diagnosed over 2yrs ago. My oldest daughter came home from California to live with me and help out her sister and brother taking care of me as needed. She had been in navy since she was 17 and she was 31. On January 15 She had a bad accident and never gained consciousness with multiple strokes from head trauma. Well, On the 25th, I had to do what no mom should, I took her off life support as per her wishes and life has been hell for me since. I'm sorry, I just go on sometimes lol. Ok, so have you tried any supplements or talked about them with your Dr? They can be a big help. Also, if you are able, cannabis oil has helped many ppl. A lot of Drs are all for it, including mine. It has really become the go to for copd. Just a few suggestions you could look into. I take supplements too now since the pneumonia and they've helped a lot. Keep the faith and try not to be hard on yourself. Its a daily struggle but talking with others who can relate is sometimes the best medicine. I'll be glad to chat if you want anytime. If I don't answer right away plz forgive me, my mind is all over the place somedays😊take care.

[Crackerjack4u in reply to Jensmom]

Hello jensmom, I just read your comment and wanted to say I am soooooo very sorry for your loss. You are in my thoughts and Prayers and as I told Angel above if you need/want to talk feel free to message me. Hugs hun.

[Jensmom in reply to Crackerjack4u]

Thank you so much. Its got it's good days and bad. I will appreciate a friendly ear time to time. And you do the same

Jensmom

[spiritinthesky in reply to Jensmom]

So sorry for the loss of your daughter. Losing a child is the worse thing ever and my heartfelt love is sent. Thank you for the heads up on the oil. Yes have tried the Holland an Barrett one which is a health shop that sells it as a food supplement for law reasons. It gives me terrible heart racing and feeling very irritable and on edge. I suffer with tachycardia and it seems to triple it more. Well there product does so given it to a friend who has no side effects with it. Not sure if my GP would give it as more for epilepsy and parkinsons they give it in the UK. Are you in the UK? I can but give it a go and ask my fav GP if can get in for an appointment as they are sparse these days. Gosh you have really been through a terrible scary illness and must have been horrific for you. Thanks for the reply and advice and for the advice. Much appreciated. take care. I am going to sit in the back for some vitamin D for a short time with my glass of water. Hope all goes better for you hun. Keep in touch when can. Hugs xx

[Jensmom in reply to spiritinthesky]

I'm in the states, Maryland on the eastern shore. In sorry you had a bad experience with the med marijuana. I use the oil only the size of grain of rice. Took a little trial and error but found my right one. Its a good idea to talk with your gp. Good luck with everything.

[spiritinthesky in reply to Jensmom]

Thank you and heads up for this. Appreciated. Not been good at all this week. Had a one off antibiotic sachet. Broad spectrum for suspected UTI. Pain terrible. Took last Friday my stomch been severe pain since and not off the toilet. Not eaten much so lost half a stone. Could only manage banana and toast and a little rice. Now I have severe nausea and dry heaving feeling like I want to vomit bad. Went on my weekly outing trip even though not up to it pushed myself. Mistake as in the toilets felt I was about to pass out and my legs went like jelly? This happened around four times so had to come back home. Breathing was short and laboured so had to have back to back nebs and kept dry heaving. Do not want to go to hospital as here it is not a good one, you are left around six hours then the doctors wants to send you home with your chest rattling and if bloods come back (basic one) ok they say blood fine, stats will settle. Blood pressure been elevated and heart rate fast and missing beats so awaiting the outcome as if ring GP he will only tell me go hospital. If gets any worse in the night will be sure to go to have more tests. Have a lovely weekend all and god bless you. Xxx

[Crackerjack4u]

Hello Angel, and welcome. I'm a newbie here too, so we can learn the forum ropes together. I'm so sorry you are having such a difficult time, and unfortunately I do understand as I am there myself not just with my COPD, but many other medical issues too.

At some time or another all of us just need to vent. We need to know that someone is listening, there are others out there who do understand when it feels like those in our life sometimes just really don't get it. Since arriving here I've meet some really nice, supportive, and understanding people. It's nice to know that we're not as alone as we are currently feeling. I apologized for whining and venting just the other day myself lol, and that apology of mine is only good until my next whining/venting episode occurs which probably won't be too far away, but at least there are folks here who will listen, and who really do understand the struggles that you are going through on a minute by minute basis with this dreaded disease. Someone the other day told me that there is no need to apologize, (and I'm now telling you the same thing :). So you feel free to vent whenever you need to because that's what we are all here for is to help lift each other up when we are down, and give guidance and support when we can.

We all have 1 thing in common, and that is that none of us here are medically well, we are all battling something, or many somethings. We are looking for people who may be able to offer help/suggestions to possibly make our struggles less, or our battle easier, or so we can learn what they already know, and we're looking to find friends who really do "Get It" because they too are going through it, these are some of the things that brought us to the site to start with.

Again Welcome Angel. I'm around if you want/need to talk, feel free to message me. Unfortunately, we are all stuck playing the illness and unwell hands that we've all been dealt, but together perhaps things won't seem quite as bad, or at least won't be quite so lonely. Prayers that you are having a better night.

[spiritinthesky in reply to Crackerjack4u]

What a lovely person you are, None of us deserve this is really is like being given a black cloud and saying deal with that. The sun may shine through on some days but like you say we do all need to vent and am really feeling your physical and emotional pain with this disease. I want to thank you for this lovely reply and wonderful words of encouragement and compassion and my healing and love is sent to all suffering COPD and other medical issues. They change your whole life and those who do not suffer with it do not understand your refusal to go to outings and long journeys or even a little shopping as in a wheelchair other peeps (some) are so ignorant and bump in you which hurts your muscles if you have any muscle wasting and the looks and sheer contempt when you have a coughing fit is not nice at all. It also zaps your energy and you are left feeling drained for days after. Christmas day with the family is now a no go. I have a new grandson but have no patience and this makes me feel so bad. I love him dearly but cannot find the energy or patience I had before. Always had my granddaughter in fact lived with me four days a week and the rest still could not stay away as had a bond like no other. Now she is a teen and is going her way and that bond feels broken this hurts too. She is young and has her whole fun life ahead and told her NEVER to smoke and stay away from as many chemicals as possible. Just want/wish life was like it was. Praying for a cure soon in our time and hope all is well for you all today. On a plus side managed to wash all the pillows (well the washing machine did) off the bed. Bought some anti allergy pillow protectors so hoping for some relief there. Remember the times when we were younger, couldn't wait to go to the cinema or play skipping/football with our friends. It is those memories we can cherish forever. Still want to do that now lol. Sad when getting excited over some fresh pillows ha ha. It is that time again nebulising machine at the ready. Oh the joys. Blessing to all Angel xxx