WendyCo, It looks like your'e well on your way, and I'm glad that your Dr, is being through and concidering all options for you. A PET scan is an easy one, you just lay there!!!hehehe. Thank You for shareing your 'journey' with us. I'll keep you in my prayers.
okay wonderwoman, I'll try to answer some of these questions and maybe answer them even better in a few days....I do things like that, it will "come" to me later
The Pet scan is for the spot/thingy that THEY found on the CT in Feb. so I think that is what you were referring to....doc just said it must be done and that is that! (you know girlfriend, how different our countries, huh? If only you could have had a Pet scan, but that's water under the bridge I suppose but it is what I thought about first thing when he brought it up)
and the bleeding in the heart.....I've told the kids that my heart was broken when Jen and the kids went down to Arizona and now I can prove it! Doc said that I have a Mitral Valve that is not right and I have bleeding of my heart and that could cause some of my low oxygen numbers...He wants a cardiologist to look it over and we will do/not do what ever he suggest.....
we have to get the "things" out've the way before we can go forward and discuss LVRS. as far as the infections, I really think I have some of those nasty critters that sit way down there and laugh at you when you use ant's and then zoom around wrecking havic with your lungs..... I can remember in 05 or 06 (before TTO) the doc keeping me on anti's the first 5 days of each month to try and cut down on infections....we did that for almost a year......at this point whatever he finds out I will comply...............
another novel written here so better stop before I get kicked out hehehe.....any questions from anyone I'm more than happy to answer and thanks again to EVERYONE for their support
Mary57, Pet scans may be easy but some people that have problems laying still for quite some time on their back, are not crazy about them. Namely, my husband who just complained again last week. Honestly, he does not really complain, but did say again that it is so hard laying on a hard table so long.
Wendy, I am so amused the way you describe things like those nasty critters moving around. ;D It really does sound pretty good. Sounds good that the worse of your lung is isolated more. I asked my Pulmo Dr about mine and he said it was all thru-out my lungs and in addition I think it had told my husband ‘they were a mess’.
Wendy, you won’t get kicked out. People are interested in what you are saying. Thanks so much for taking the time. I am rooting for you. Think of you often.
Wendyco I have been reading the stories one at a time and then letting them sink in before going on to the next one. I want to thank you for sharing your experience with us all. Hope all turns out well and glad that your doctor is being so very thorough.
Your reference to bleeding in your heart makes me wonder. The last time I had an ECO the Dr told me there was some "leaking" in my heart but it was nothing to worry about. I'm wondering now if the leaking is actually bleeding.
I'm scheduled for an ECO next month as one of my many tests down in Toronto and I'll be sure it's one of the questions I'll be asking.
I just wanted to tell you good luck on this journey, you are so upbeat and postive. Everyone here apperciates your sharing of your results. And you are so right Wendy, we are all bonded by copd/e . Thank you again for sharing, and the best of luck.
BTW everyone, thanks for letting me know you are interested in this.... ;D Toni, I never knew about the "leaking" before my echo test and I have had some heart test in the past, although that was a few years ago and perhaps this just popped up?
yes wonderwoman, I go Thurs for the PET (MUST rest and do nothing physical on Weds? what on earth is that for? impossible request for sure!) and on Friday I see the cardiologist.......
When I asked about the resting, it all makes sense....apparently the glucose they insert into your bloodstream will stick to muscles if they have been used...they want it to stick to abnormal cells, which eat up the gloscuse, yum yum....so, if the glucose goes to the bad cells, when they insert the radiation it will attach to the glucose....and light up in the area of the cells.....makes sense if you think about it, don't think I explained this quite right but you get the idea I hope...?
wrote this yesterday in an email to some when I got home from the newest testing........ Not sure what all I'm gonna say today, still have to run some things around my mind to get a grasp of all of it....
Yesterday I had a pet scan at Nat'l Jew to see for sure what the spot is...the hardest part for me was staying still (and they mean perfectly still) for 20 minutes while the radiation goes through your body. Then you go into the room and have the actual scan and that's another ½ hour of laying still, yikes that was soooooo hard for me......
Meanwhile I knew I had this appt today with the cardiologist and we also knew a huge snowstorm was heading this way....so yesterday, Thursday, we tried to see if we could re-schedule today's appt due to the pending weather...well we could but couldn't see the doc until June...so we kept the appt....
Poor Char called me at 6:00am to see what I thought, it had been raining all night here and snowed at her place in Wellington (about 20 miles North of us) we agreed we would try and see what happened. We made it but drove in heavy rain showers, mixed with snow the whole way and the whole way back. Really made it out've Denver before the heavy snow started so lucked out there....
The cardiologist was a sweetheart and reminds me of my best friend back in junior high and high school so I was comfortable right away .......(I had been told I was seeing him for a Mitral valve that was leaking and a hole in my heart that was leaking blood), well yep I have those two things but he isn't too worried about that. He is concerned with some calcium build-up, which could mean plaque build-up and perhaps blockages...also when they did the nuclear test with the bubbles, the bubbles should go up and down, mine went across.....another sign of things just not right....so more test...he wants to rule in or out some things and we will go from there. I can't get scheduled for those test until the middle of May so will play the waiting game........
I also postponed my appt with Dr Make, pulmo, cause we had scheduled a time for the results of the cardiologist visit, so now will see Make after the test and those results.......this is all good because if I weren't being tested for a LVRS I wouldn't have found these other little glitches.....
so that's the latest, except it's still raining/snowing
Wendyco, I'm glad that because of testing for one thing they have found other things that may not have been found until they were a big problem. Now you can get the help (what ever that is) for everything and then be healthier. Things seem to always work out one way or another. Take Care
Post by Blossom/Jackie W. on Apr 18, 2009 15:57:08 GMT -5
...well; I had a really great post done and then it fell into the Abyss after I did a spell check (one of those rare ocassions I do spell checks)
Wendy; first off TY for sharing this info with us... I know how much of a challenge the past few days were and BIG thanks to Char for getting you there!
I know a bit about mitro vlaves and plaque....the big thing I wonder about is the blood flow/leaking...I'd like to explore that a bit more with you at some point if I may.
Mary's right....you're getting a lot of info that maybe you wouldn't have known; and; in reality...that's a GOOD thing!
Look at you!
You've had a TTO for the past 2 years; not something done here in Cananda in a home environment...you get out and about; you look after grandkids... your FEV1 is a challenge in itself.... Lady; you blow me away!
I am so proud to call you a friend and especially with someone with COPD facing many challenges right now!!!!!
Wendy, Glad you got the answer about the exercise and the PetScan. I know every time Joe gets one he cannot lift anything over a certain weight. Forget if 10 or 20 lbs. Joe does not mind going for the Pet Scan but dreads that you have to lay still so long and on a hard surface. You are obviously not alone with your feelings.
If I remember right, it is the Pet Scan where they order what they need to use and have it on hand just for your appointment. It cannot be sent back and so very costly if you miss the appointment. Must be this one. I know it applied to one of the tests Joe was getting.
Sure am glad you made it thru the storms though. I know how bad it can get. You live in God’s Country IMHO once the rain and snow settles and the clouds come out.
You sure have a lot going on. Hope you are getting good rest also. I don’t know the particulars and may be very different but I had a girlfriend with a hole in her heart that was found and fixed just a few years ago. It was found while treating something else.
I am glad you got a cardio doc that you seem to like. Wish we did. You are really getting the workup. Take care of yourself. I think of you everyday and always in my prayers.
wasn't sure where to put this so put it here....I have finished the ordered testing for my heart and do not have an appt. with the cardiologist until July......BUT tomorrow, Wed I see the pulmo again at Nat'l Jew and since he's running this show he should have all the results and know where we stand as far as LVRS...at least I think he should know....then again, maybe he wants to wait until the cardio has conferred with him too.......I'm a bit nervous today as tomorrow could be the day to find out........
Today was an interesting day but not what I expected. I saw Dr. Make’s assistant, Dr. Van(something or other, will call him Van for this)……..
He has the heart testing results but will let the cardiologist talk to me about those; he didn’t see anything though that he thought was bad or needing immediate treatment.
Dr. Van did lecture me on getting to my doctor before I usually do and to take my exasperations more seriously than I do. The condition my lungs are in they do not want them to get worse and every exasperation will cause more lost of functioning lung. I knew this but he stressed that if my cough, mucus, breathing etc changed AT ALL I am to call a doctor…..
They also think perhaps some of my exasperations are caused by allergies…my AG1 levels were up and that indicates allergens in my system….so I go back in a few weeks for skin test for allergies. If I do show some allergies I will participate in a drug study they are doing about asthma and allergies and a new medication that is injected once a month.
Now to the main part of the visit………………I was told at first that Dr. Make did not feel that I was a good candidate for LVRS…..I asked the Dr. Van to look through the notes some more because he had told me that I very well may be…..so the Dr. Did look and then went and conferred with Dr. Make…..came back with a “maybe”…..guess this Friday they sit down with the doc’s from University medical center (they would perform the surgery) and go over records and test etc and decide who would be a candidate and who is not a very good one…..the Dr’s will let me know after the meeting…..I either will get a call from University to schedule an appt., or the doc’s at Nat’l Jew will call to let me know I’m not a candidate……So the waiting game again…..After we left Char said, did he mean THIS Friday? I thought he did so I may call later in the week and find out for sure….
Post by Blossom/Jackie W. on May 27, 2009 19:22:08 GMT -5
Zoom; I can see why you would have asked "additional" questions. Just from reading your post; at least from a heart perspective, I can't see how it would negate you. I'm sure there was more that transpired but the one thing I've learned is that Dr's, especially specialists, they can get somewhat "flippant" for lack of a better word. I was hearing "positive" feedback....
May I ask "why" they felt you might not be a good candidate?
Now; and I hope you forgive me here.... but; are you not being considered for both LVRS or transplant? Has something changed? It's my understanding that LVRS is/can be/ as serious and demanding a surgery as having a transplant. Any idea where all this might be right now?
Finally Lady; I want to thank you for keeping e'one abreast here. So much goes into all of this; especially from the psychological and physical perspective of the patient. It's truly demanding and it MUST wear you down.
Stay strong; be patient; AND no zooooooming for the next day or two and..... here's hoping (along with my love and prayers for you!)