Fed up

Hi my breathing has been getting more and more difficult over the last two year I have severe COPD however they have just discovered that I have a badly leaking mitral valve and have also discovered a module in my left lung I am currently going through tests to do with my heart but they are saying that I do need open heart surgery but they cannot do it because of my lungs they don't think I would survive the operation has anyone else experiencing similar problems I am quite worried

[aberdeenman]

hi im very severe copd my fev1 is 12%, I went through tests hoping to get double lung transplant and when they were sent to transplant team in Newcastle, they replied they wouldn't accept me as they felt I wouldn't survive operation. I also have gall stones but they wont do anything because of my lung function, I was in hospital a few weeks ago with an infection and the saw something on xray un sure what it was so had ct scan following day, turned out to be enlarged lymph nodes, the said it was lung cancer but im not fit enough for further investigations, theres times I feel I need home oxygen but because I retain carbon dioxide they wont give me it yet, after 10 days in hospital I was sent home with a nippy machine to use at night when I am asleep in the hope that helps with removing more of the carbon dioxide, then maybe get oxygen when I next see my consultant, but I do feel nippy machine is helping a bit, my stats aren't as low as they were, just take a day at a time at a snails pace lol

[Hidden in reply to aberdeenman]

Hi thanks for your reply isn't it funny how you think your health is the worst in the world until someone who is a lot worse than yourself brings it back to reality thank you for that and good luck for the future I will take your advice one day at a time. Take care

[Roessner541 in reply to aberdeenman]

I retain it as well but they still give me oxygen I don't know what I would do if I didn't have it.

[Nicholatracy in reply to aberdeenman]

Hang in there 🐞

[Spacecat1 in reply to aberdeenman]

I have to have oxygen and I also retain carbon dioxide. I wear a mask at night in bed and use oxygen during the day. Suppose all consultants do things differently know a few people in same position as me and like me they use both.

[aberdeenman in reply to Spacecat1]

hi yes I know someone on both as well, but because I retain so much carbon dioxide they have put me on a nippy machine at night, and once that reduces it a bit they will be looking to give me home oxygen. I should be getting appointments soon from them.

[Fleurbaby]

Look guys, some countries WILL operate on you! A large number won't! But, it mainly is because your lungs may not (plus your heart), be able to be restarted!

Most medical personnel, & surgeons, don't want your death on their conscience! You can't blame them! Would you if you were a surgeon? Really, would you?

Just have a look at the constant conflict in the U.S. about abortion!! Can you imagine what would happen to the staff, if you lost your life!

Look at suicide! What about the loved ones left behind?

I have Stage 3 or 4 copd, don't know yet! All I do know is, I just applied to get my private pension paid to me, as I am seriously ill, not a problem, it was paid into my bank account last week, my contribution + employers & government + all interest. Do you think they are more aware than I am?

Or covering their backsides, if l die?

I also have congestive heart failure

Type2 diabetes

G.A.D.

Hiatus hernia(that needs an operation)

My eyes are constantly requiring specialist eye ointment, as they have conjunctivitis + with type2, I have to go to the hospital diabetes clinic to have photos and tests done, as blindness could be next!

I reckon they will want my body for science after I die! Lol!

Also, I have serious leg weakness, I honestly can't walk for more than 100 meters at a time! + I need a walking frame in case of a fall.

[2greys]

I have had an insight similar to what you are experiencing. I have had a similar problem when diagnosed with lung cancer. Although an operation to remove the tumour was not actually denied me, the survival odds were pretty poor at 40% and if I did survive then a 60% chance of ending in a wheel chair on oxygen. So I elected to have a radiotherapy called SABR. If your nodule turns malignant then I can personally vouch for SABR. I am sorry that I cannot really advise on your heart issue but hope that I have allayed any fear of a tumour/cancer, many of us have a benign nodule or two that come to nothing, they are more common than you might think.

[Hidden in reply to 2greys]

Thank you any help or information is a help I have an angioplasty being done in two weeks so any decisions will be after that

[wheezybronch]

You should have a discussion with your doctor/consultant. If not happy with their explanation you should ask for a second opinion. A leaking mitral valve over a period of time may cause heart failure which in turn could make you breathless and ultimately be fatal. COPD, if you cannot stop or slow deterioration will also cause increasing breathlessness and also be fatal. You need to know what stage you are at and prognosis.

Have you been on a pulmonary rehabilitation course, if not it may help you, it helped me a lot. I have not got COPD but do have bronchiectasis, tracheobronchomalacia and obstructive sleep apnoea. I use a NIPPV at night set at bi-pap levels of 20/12, this helps me very much. I wish you the best of luck and hope that you find some answers here.

[Hidden in reply to wheezybronch]

Thanks for your help I am already very breathless due to the heart valve and severe COPD they have put me on water tablets because I cannot lie down in bed at night I wake up every half hour gasping and coughing I have been on the pulmonary rehab but to be honest everything is becoming too difficult making meals doing any kind of housework getting dressed my oxygen level drops around 88 I know there is people worse than that but I just feel I have had enough

[wheezybronch]

I am speaking from the position of having supranormal lung function and quite good average O2 sats but if it were not for my partner of 36 years I would have given up a long time ago, well I certainly felt like it ! You need to ask for help to do cooking, cleaning and washing. It is not at all surprising that you feel low but it is up to you what you do now. There is a plethora of help out there, you just need to find it, for this you will need help as well. People who are not chronically ill do not understand the feelings of hopelessness that is felt by the less fortunate and if you look healthy (as I do) it is thought that you are faking it or maybe a hypochondriac. These are my personal thoughts I am not a doctor but have had many challenges throughout my life. You could do no better than to take a look at the BLF site or ring their helpline;

blf.org.uk/support-for-you/...

[Hidden in reply to wheezybronch]

Thank you for that I will

[tamariki]

Just over 2 years ago I was sent to hospital with a COPD exacerbation, and was supposed to get a stent implanted. Whilst in bed getting examined, I had a NSTEMI heart attack. The cardiologist told me he wasn't prepared to do any heart work on me, since he wouldn't tell if my condition was due to heart or lungs. I take an aspirin and roxythromycin tablet every day. I use a ventolin inhaler as necessary. I also use an Anoro inhaler in the morning and QVAR morning and night. I have an emergency supply of prednisone and an antibiotic.

I still get scary SOB incidents, but seem to manage with pursed lip breathing..