For those of you who are suffering through COPD (Emphysema, Bronchiostasis, Chronic Bronchitis) I would like you to really try to do everything the Drs. say you should do. It will keep you healthier longer.
Sometimes the Dr will put you on a Prednisone Burst because your breathing is not great. You are short of breath and feel like you can’t do anything but sit. However, Prednisone is one of those good/evil drugs. It makes you breathe better, but it also makes you more hungry, may give you a, let’s say, cranky attitude sometimes, etc.and over years can cause diabetes and other things. It is one of those things that all of us have to deal with. But not to worry now. . .you will be fine. See this link about Prednisone:
This link will take you to WebMd. Read about Prednisone and all of the things it will do for you. Read the side effects and learn all you can about the drug. You will be using it probably for the rest of your life and it is important that you know as much as you can about the drug. Actually, you should try to learn as much as you can about your disease and how to treat it. Don’t be afraid to ask questions of your Pre-Transplant team, they are there for that also. If you don’t understand it, ask about it. This will help you learn and cause you to do what you need to do to stay alive and as healthy as you can be!
Another thing that happens sometimes with lung disease is acid reflux. I don’t understand why or what causes it, but it does happen. I did have acid reflux for about 5 years before I began my emphysema journey to my double lung transplant in Sept. of 2005. I had it pretty bad and had to take Nexium 40mg twice a day.
My lung doctor, Dr Michael Bennett told me that I also had an Asthma component to my Emphysema. He explained that Asthma and emphysema sometimes go hand in hand. It is a vicious cycle ~ Asthma will trigger the Acid Reflux and the Acid Reflux will trigger the Asthma. . Go figure!!!
After transplant my acid reflux just wouldn’t calm down and it was causing trouble. Two years ago I had a surgery called a Nissen Fundoplication. The surgeon took the end of my esophagus and pulled it down a wee bit into my stomach, then he wrapped the neck of my stomach around my esophagus. What this did essentially was turn the end of my esophagus in to a small funnel. Just like a funel prevents anything from coming back up into the funnel, this surgery prevents the acid from coming back up and causing heart burn. I also found out that sometimes if the reflux is bad enough, the acid can come up and drip into your transplanted lungs and can possible cause rejection. My acid reflux also had a big part to play in the sinus infections I got quite frequently.
I don’t take Nexium anymore. And THAT IS AMAZING!
I wish you all the best!!! Truly! But always remember that the Drs. and your pre-transplant team know much more than you do about this disease. . .so PLEASE do what they tell you, believe me, you will have a much better outcome if you do.
As I said before, in another post, Pulmonary Rehab is one of the best things you can do for yourself. Check into it and go! You may not be able to walk very far now, but once you go to Pulmonary Rehab you will discover that you have more stamina!!! I loved it and I made many friends. And some of those friends have gone on to have their lung transplants (double lung, double lung/heart or lung volume reduction surgery) and they are doing well. It was so good to see them come back looking pink because they can breathe well and looking healthy!!! What a gift!!! It is a most priceless gift that brings joy to the heart. AND, you do want to take good care of your lungs because someone gave them to you. You have a duty to keep those organs well so that your donor’s family can know that their gift was not in vain. It if wasn’t for donor families, we would not have life. . .
Life with COPD is interesting to say the least, but you must know that this journey to transplant is not for wimps!!! We have attitude with gratitude and we face our difficulties head on. . .we fight on and on and on for our new life. I want you to fight with the right attitude – ATTITUDE is EVERYTHING!!!
(This is part of a post I sent to my friend Joanne who is waiting for her lungs and a chance of a new life – God Bless You Joanne!)
Much love to you and may God’s richest blessings be yours!