@francisann I don’t know where you are at this point but I can so relate to how you feel. I was told at the Mayo I needed a double lung transplant. I’ve been dealing with issue most of my life. I went from childhood asthma to COPD and now emphysema that showed up in 2012 and maybe before. I’ve been on oxygen for since 2017. At first it was just for sleeping or anything like swimming or exercising and now I’m oxygen 24/7. I’ve gone through many tests and it seems my time is now getting limited. I have to make that hard decision. I’m very aware how awful the medication is going to be from now on and wonder how long it will be before it causes liver, kidney problems or cancer. Skin cancer being the first in line. It is the most risky transplant surgery a person can have and the lowest survival rates. I realize this all sounds terrible but I ask a lot of questions of my transplant surgeons. It’s so important to ask questions to make a decision that’s right for you.
The Mayo is great about talking to you point by point.
I can tell you that if they are saying you need it know ask more questions. Get fully informed in every way.
It is true that you can start getting worse rather quickly. I went from not really using the oxygen to full time in 1 years time. It seemed every few days I needed it more and more. Pay attention to your body and what it’s telling you.
One week I could walk up my stairs in my house with no problem the next week it became difficult to walk down them. Recognize your lungs, heart and blood all work together. If your heart cant get enough blood because you oxygen is to low to carry blood through our body things will change a bit faster. Watch for weight lose and getting tired easily. Naps have become a necessity. When and if this starts happening (based on what you have told us) you need to really start thinking hard about what to do.
I am still trying to decide if I’m going to have the surgery or let nature take its course. It’s a very difficult decision to make but don’t ignore what your doctors are telling you. I went through 8 tests and they sat down and went through every one of them with my husband and I. It helped a lot yet I still have not been able to make the decision.
I wish you well.