COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
They called me today and reported I made it through the Lung Scan (already made it throught the CT Scan). They scheduled an operating room for 1/8/09, will be an over night stay. I still have to make it through an echocardiogram, a ECG and battery of blood tests all scheduled for 12/26/08. I was reminded once more that I can be bounced at anytime.
It is a blind double study. They open the envelope to find out if I am in the group that gets the valves (50% do / 50% don't) after I am under the anethetics. My doctor or myself will not know for 6 months which group I am in. If I am in the group that did not get the valves, I can get them after the 6 months ends.
I was glad to read what Sue wrote today about her bronchioscopy. That's how the valves are placed. Can't wait for the cinnamon/clove tobassco sause goop they paint to numb your throat.
Shirley
It is a blind double study. They open the envelope to find out if I am in the group that gets the valves (50% do / 50% don't) after I am under the anethetics. My doctor or myself will not know for 6 months which group I am in. If I am in the group that did not get the valves, I can get them after the 6 months ends.
I was glad to read what Sue wrote today about her bronchioscopy. That's how the valves are placed. Can't wait for the cinnamon/clove tobassco sause goop they paint to numb your throat.
Shirley
Hugs,
Carol
Laughed at your response to Sue's description
of the numbing goop!!! LOL I kinda like clove, cinnamon, and tabasco sauce. LOL
Never thought of mixing them together, though!
I do have a question. If you do not get the valve in the trials will you be a definite at the end of 6mos. to receive one?
Wouldn't a person know if they had received the valve by the post operative care they receive. If you did get the valve, would they keep you on all of your current medications?
Sorry, I am asking questions that you may have not been given info on yet but this is a huge step and we hope a 100% sucessful one for the future treatment of COPD.
I am marking 1/8/09 as a red letter day on my calendar.
So far you have received an early Christmas present and one you really deserved.
Go for the Gold!!!
Anna
I will mark the date on my calendar, too. Yes, I just report the facts, ma'am about the lovely numbing stuff. But at least it does work! LOL!
Stay positive (Sue, are you listening to yourself talk here???) and keep us all in the loop about how this goes. Love you much!
One of the things they also do while they are in there putting the valves in is clean you out and take cultures like they did with Sue during her procedure. I'm hoping they will do this even if I don't get the valves. I have no idea what to expect and they are not saying. I hope I feel so good when it is over that there will be no question about it whether I have them or not. I don't know. I can assure you, you will be going through it with me.
I do have some concerns, I know the valves are placed to redirect the air flow in the lungs, I don't understand all of this but know that is their goal. I am concerned about the mucus, that will still have to be controlled, big thick globs of mucus is not going to get through those valves. Also airway dilation will need to be controlled. I believe our airways will still collapse and have to be opened up regularly with inhalers. I'll ask about that. The doctor heading the trial is going to call me when all the tests are done and go over them with me.
I'm going to tell him I want to see the pictures, I understand a lot better if someone is pointing at something while they are explaining. I also want to know how many people are in this trial here in Portland. I do know it is only open to Kaiser patients.
I want each of you to know, you all have been the greatest support and encouragement to me. I consider you all my Cheer Leaders!!! Sassyme, Sallysea (alias Purpleiris), Sue, Pattiruf and Breatheasy have been there teaching, befriending and helping me from the day I joined this site. I hereby promote you 5 (five) to Head Cheer Leaders!! Mamamarj is #6 (six) Wes would be on the team also. I will have to say that Sassyme's encouragement to me about this trial has helped me keep moving forward, thank you Arlene.
My great hope is I make it through all the tests, that the valves work fantasic and I can help pave the way for many of you to follow after me. And Humm, to be completely honest, I do also consider this as 'About Me'. lol Two different angels sitting on my shoulders.
I for sure will keep you posted. YOU ARE MY TEAM!!! xxxoooShirleyxxxooo