Hello. I wanted to share my history while new, so people can get to know me and what I have gone through, and hope to learn from others what their stories are, in hopes of finding something new to help me and to share what has helped me as well.
My body feels like I am a hundred years old. My spirit makes me want to be 21 years old again. Or even just 8 years old, when a child my life was as good as it gets.
I spent most of 2021 in three different hospitals. I already had some medical concerns, mostly lung issues that were affecting my daily life. I have MS, a heart valve issue, a fractured back that my vertibrae never healed properly, and have spinal cancer. Guess all of these medical conditions affect me daily, but my lungs have been the biggest issue for me. If I can't get air into my body, well,you know how that feels. I have a concentrator, 4L currently and all the generic inhalers they give for COPD and nebulizer. I am currently ambulatory, and sleep in a hospital bed with my head raised up to help guard against aspirating in my sleep. Oh yes, I have a BiPap machine, too.
While in the hospital, they never showered or washed me nor shaved me. Their excuse was COVID and short staff. I had to cut my very long hair all off after coming home. My goal with my hair was to donate it for Wigs for Kids. I felt very abused as I had two strokes and a heart attack while in the hospital. I was not able to even move to defend myself. The strokes robbed me of about two months of memory. That may have been a blessing.
I lost over a hundred pounds, and could not swollow any normal food. I was stuck on a "paste" type diet, all soft foods. Torture for me as I love a good steak and salad. My diet was a big issue for me due to the fact if they would need to surgically remove the abcess that was in my lung, I would not survive the operation. So then it was drained. I was losing weight, a pound a day and they wanted to discharge me home. I needed a feeding tube, but had to fight them to have them do it for me.
I spent 5 months at home on a feeding tube and eventually recovered my ability to swollow normal food, so now I am almost back to my weight of 200 pounds, I walk wiith a walker and use a wheelchair for any longer distance travel into a medical building for surgery or testing, my latest event having my eye surgery so I can see better, my right eye is totally blind sadly.
Some staff in the hospital abused me as if I was their toy to cause me pain. So I have learned to not trust everyone that is in the healthcare systems and to search out for things that have helped others, so perhaps those things might help me. I use a lot of medications made from natural based mushrooms, spices, vitamins, teas.
Most medical staff had told me I would not live, they even informed my spouse to be prepared for my death. I don't give up. My love for my spouse and for my very own life kept me here. So now I am back home, taking showers with some help, cooking fast meals, and thankful for the least of things some people take for granted. I've learned a lot about what is healthy for me. I want to learn what others are doing to see if it might help me as well, and to give what has helped me out, too. i still have a mass in my right lung, so I am using some non medical approach for treatment now, taking MSM and Ginger Root along with AHCC. I will have another CAT scan next week to see how it goes.
I am sure this all seems like a novel, but I just wanted to get it all said. Thanks for reading it is you did.
Daniel
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Trustyourmind
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Welcome to this forum!! Like I have said in other replies... this is a great bunch of people who support each other. They truly care about each other and what they are going thru!! Add a little of humor.... and you know you are in the right place!! So... once again welcome and I hope you find this forum what you need . So many people with such knowledge and open hearts. Thank you for sharing your story!! xx
Crikey! What a catalogue of problems you have. But amazingly you have survived. Well done. There must be a very strong and determined spirit in there.Welcome to this forum, and thank you for sharing your story.
Welcome to you Daniel. What a lot you have to contend with in your everyday life. Your determination to survive is inspiring and you’ll get lots of support here. Xxx
Daniel, what can I say? You have been through so much and still have the strength to keep going. You are inspiring. I hope you will find this site as informative, friendly, funny and supportive as I have. Welcome xx
Welcome Daniel. You have been through a lot and I'm not surprised you don't trust hospital staff. I think you have been very unlucky in the people you have encountered; most of us have met much nicer people. (I think straight away of Nurse Rachel who came out to me when covid was at its worse to help me during a bad exacerbation.) Be wary, but I hope you'll find some good people too. I find breathing exercises and gentle exercise help me- very gentle when I'm not good; more vigorous when I'm up to it. There are instructions for ACB (Active Controlled Breathing) somewhere on the Asthma/Lung site. Best wishes. xxx
Thanks for the information, I was to see a pulminary rehab clinic but no word about any appointments being set up for it so this Monday I plan on calling to inquire.
Oh you poor thing. Shame on them he didn’t treat you well. Hope one day they will understand what it feels like. Wish you better and we’ll done for staying strong.
You have been through the medical mill, and after your experience I would be a bit wary of trusting the hospital system, after all it is there for people to learn about medical matters. Welcome to the site where we all have many experiences good and bad, but one thing I have learnt is you have to look after yourself with help from others and these forums play a big part in that. There is no substitute for experience. So hope you gain much of that from here too. As well as seeking medical help for your issues. We do have a smile now and then too from none medical matters. Take care and hope to speak again soon.
Hi Daniel and welcome to the site. My lord you have been through alot and lived to tell the tale, so well done you. Love give's you a strength you didn't know you had, so keep on loving. So sorry to read that you have been badly treated in your hospital, how terrible that must have been for you, I hope you reoprted them.
I have bronchiectasis and rheumatoid arthritis but managing ok. I try to look after my health and cook nearly everything from scratch, eat alot of fresh vegetables and fruit. Dont exercise as much as I should do.
I make a drink for this niggly cough I have , of lemons, honey, ginger and add a little apple cider vinegar(with the mother) just before drinking. After simmering for an hour or so it goes in a jar and kept in the fridge, so I drink a cold glass when needed, but you could have it hot.
Its so difficult to find good advice on health foods etc, everybody is out to take your money and would sell you snake oil telling you it would cure every ailment you have. I buy my supplements from originalText not sure if you have anything like them in the US but check them so you can see what the products are and most important they have no additives.
I am sure there are people that can give you good advice on here and will come along soon, just keep on asking your questions. I wish you well and hope your day will be a good one x
I have been very lucky for whom sells me suppliments. He has a website and also sells on eBAY, but his heart is so sweet and dear to helping people. My Wife had a lump in her breast and as soon as he knew about that, sent about $300.00 worth of products and would not take a penny for them to help her out. They have helped reduce the lump size in just 40 days time. But that is another story all on it's own. I do take many products NON prescription. I have lost faith in mainstream medical doctors. I was told the mass I have in my right lung was scarring. The mass was the size of a cell phone. No biopsy done at the time, but you know as well as I do, that sort of a mass is a death sentence to anyone that already has bad lungs.
So here it is, 5 months later and the mass is almost all but gone, a new lung expert looks at a cat scan and tells me I never had scarring in my lung. I am like jumping for joy. Crying my eyes out feeling so many emotions all at once. Then anger! Some poor sod of a doctor is telling me I had scarring only to find out that was a lie!?!? The mass had to do with a lung inflammatory issue. It is now only the size of a walnut and getting smaller each week. Yippy!
I've a friend that has been an MD in England and the USA, (he is currently in the USA doing his doctor thing...lol..) and has been a big blessing for me. I can call him and discuss issues and he steers me towards the right resolve. He is much smarter then most USA only schooled MD's for sure.
The kindness of people is amazing and so glad you have had help with your supplements, but so sorry to hear there are horrid people out there who havent been good to you. I think we are very lucky in the Uk with our health service in that if we are unhappy we can get it sorted out. Good luck to you both and hope things continue to improve for you x
What an awful time you are having, the staff at the hospital should be ashamed, and I feel angry, and tearful at your treatment. Your determination is an inspiration to us all. I feel that you must complain about your treatment, and wonder if you have a claim for medical negligence. Perhaps others on the forum could advise you. I admire your fighting spirit and the love of your spouse which keeps you going. All best wishes for the future.
Welcome. It is good to ‘talk’ and so many friends on here listen and support each other.You have had a tough time and i hope it will continue to improve for you.
Thanks Daniel for sharing your experience horrific it may be. You’ve had a lot to contend with and defied the odds because of your fighting spirit. Keep on pushing yourself as it looks like you are doing lots of things right. I don’t know much about the non medical approach other than trying to keep our fitness up and eating a balanced healthy diet whilst avoiding those food products that may cause more nasty mucous production. Don’t shun all medical advice due to the way you’ve been shockingly treated in the past- there are lots of good respiratory clinicians out there fighting for our rights. Wishing you a good outcome x
Oh David welcome to this friendly forum. What a lot of crap you’ve been through. You’ve come out the other end though (more or less) and I hope your positivity continues. Do keep us updated about yourself and feel free to have a good moan: we listen. Best wishes Diane 😊
Welcome to the forum, my goodness you have been through so much no wonder you don't trust the medical proffession. You have done so well to come through it all I really do admire you. You have a great positivity which he is good morning I'm pleased you are home with your your loving wife. You bother take good care and keep posting have a lovely day 😊 Bernadette and Jack 🐕 xxxxxx
Hi and welcome to the forum Daniel 😊 Well you’ve certainly had a lot to deal with but good that you’re home and managed to get that weight back on 👍 With so many health issues it’s hard to advise all I can say is that my husband ( diagnosed with Copd 17 years ago now stage four emphysema) seems to keep going due as much as anything to keeping as active as he possibly can , turning the O2 up whilst being active , eating a healthy diet , having a positive attitude and being pro active ,as you are in , in managing his condition . I’m sure the answers to any specific queries you have now or in the future will be answered by someone here , there’s a wealth of knowledge and experience and a lot of really good humoured banter 😃
I know about turning up the oxygen when active, I have to do that even when taking a shower. Humidity almost cuts my ability to breath totally off. Bummer for me, but I hope actually my lungs will improve some.
Welcome Daniel, sounds as if you have really been to hell and back. I wish you all the luck and better health in the future. Do keep in touch we are a caring lot. Good luck, Maximonkey
My Goodness you have really been through it. You are so brave with it. I Was in hospital with spinal fractures for twelve days. I had one wash the whole time I was there. It was unheard of years ago. They always came round first thing in the morning and would wash the ones who couldn’t go to the bathroom. As soon as I was able to walk I asked if I could go for a shower. Two of them came and made the bed when I was in there. It was the best shower I've ever had. I was laid flat in bed for about eight days. And I had to ask for a bed pan if I needed to go to the loo. Bear in mind it was absolute agony to move. I would have to roll over then back onto the bedpan. Absolute agony. I had a horrible little male nurse at night. He came in one night and whether I knocked over the bed pan or he didn’t put it under properly I don’t know. Anyway it spilled on the bed. He said “ look what you’ve done now. I’ll have to change the bed. “ After he had changed it as he was going out he said to the other male nurse. “ it looks like it’s going to be a night of it tonight. “ Horrible little man.
Then there was a bank nurse whom I asked to get me some painkillers. She just walked up and down the corridor not bothering. In the end a nurse came in and I asked her for them saying I had already asked the other one ages ago. A little later on the Sister came in and asked if I had a complaint about one of her nurses. I said I don’t like to complain. She said it’s ok we have already had complaints so I told her about the pain killers. I should have complained about the male nurse but I didn’t. If I went in again I would kick up a right fuss. They shouldn’t treat people like that.
I’m glad you have recovered so well. It’s good to hear of a good recovery. Especially as they didn’t think you would even be here now. Keep up the good work.
I sure hope everyone can read my post now, have to thank everyone here. Things do happen in life for a reason. At times I think I have all the answers and then find I was wrong about it, the good Lord has all the answers and that I am still "in school" while here on this Earth.
I have a love for others that runs very deep into my soul. I try so hard to share what I do know that works in life with anyone else in a bad situation in hopes that do not make the same mistakes I have made, and also to share things that I personally know does work.
Medical issues for me and my household has shredded our finances. I am retired due to medical isues but I am not getting enough income to pay all the bills I have now. My Wife has been off work for over a year with her own medical issues, She just recently return to work.
One thing happening around this World that I think is a shame, this COVID stuff. I picked up COVID from a rehab center before coming home, and also picked up skin disorders. But the COVID ordeal for me was merely the smell and taste of any food products, horrid! I have refrained from any "jabs". I have always been allergic to Flu shots so I was able to avoid any required COVID jabs. I am happy after seeing some proofs out there, that the COVID jabs were defunct of any usefulness. I am not going to belittle anyone that thinks the COVID jab has done any good for them or others. So really if COVID was as bad as it is said to be, with my age, lung and other health concerns, should I be alive? COVID was confirmed in my system due to a positive result blood test showing after inhome health care I had for a while insisted on blood work for me.
I will have to pull all my medications I take, and give a review on what has helped me the most. I am slowly replacing most of my medications with natural substances.
You will notice I have a lot to say. LOL! Don't be shy about letting me know if I am rambling on. I feel that I have been a "different" sort since my birth. And I actually have been. Nothing normal about my entire life. My Wife tells people, if a Man can think of an experience they have thought about having, a place to travel to, or toys to play with, I've been there and back. It's been a wild ride. I do not wish for any of it to really be anything else. I even flatlined while having my lungs scoped the last time my Hospitalist suggested to have done to see what was really going on inside my lung.
Oh my it is lunch time. I promise to go back once again and read what each of you posted and make a reply of thanks for each one of you. God bless us all! Really!
Sorry by your experience I was in hospital with pneumonia end of Nov beginning Dec 2019 I was bullied by a couple of nightstand nurse who told me to stop coughing as there was poorly patients who trying to sleep so I mention it one of the nurses and wasted to make a complaint and gave me a Leathley on how to complain. You can ring pals (patient advice liason service they will tell give you advice and they will pass on your complaint your complaint to person in charge
Do you mind telling who did you complain to because pals are usually very good and think most hospitals do have them.Ive 3 times and twice they reported the manger. First one it was passed to the manger of out patient abot a rude registrar bully second was those to bight nurses were reported to matron and 3rd was xray mucking uo my ct scan appointment and the made sure that if i have to go for another scan for mammogram they havd to make sure its fone in xray and not in mobile units.
Get intouch if hospital and ask for infomation how to make comaint leaflet it should give you yhe next step of the complaint procedure if pals not helpful or google your hospital complaint proceedure it should give you the info and if you can print it off so it be easier to read. Good luck
Thank you. I have made complaints before and including during the long stays this last year 2021. The Hospitals do all they can to "cover up" complaints and draw a conclusion without any proper notification for additional information from me to "counter" the cover up.
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