HI JERRY,
HAPPY DAY AFTER THANKSGIVING !!!! I AM NOT ON OXYGEN EITER. DR. SAYS LUNGS CLEAR YET MY CHEST SO HEAVY AND I PRODUCE MUCUS FOR 2 PEOPLE BUT..........JUST WENT TO AN EARS, NOSE & THROAT DR. AND AWAITE TEST RESULTS TO SEE IF IT IS CHRONIC SINUSITIS NOT ANYTHING WITH THE ASBESTIS!!!!!
I AM STILL ON ADVAI AND DR. ALSO HAS ME ON Q-VAR INHALER. I PASS THOSE BRATHING TESTS ALSO WHERE YOU BLOW INTO THE MACHINE........SO MAYBE I AM AT A "SO FAR, SO GOOD" POINT IN LIFE. OF COURSE THE LUNG THING SCARES THE YOU KNOW WHAT OUT OF ME BUT......SEEM TO BE HOLDING. MY BODY IS RIDDELED WITH PAIN HEAD TO TOE AND TAKE CELEBREX AND THEY SAY ONLY OSTEOARTHRITIS AND THE PRICE I HAVE TO PAY FOR THOSE HARD YEARS IN CONSTRUCTION !!!! I RESIST PAI MEDS..........AT LEAST FOR NOW.
THERE ARE DAYS IT GETS ONE DOWN!!!! BUT..............SO MANY SO MUCH WORSE.
YES, I ALSO COUGH HORRID BUT..........THE DR.'S SAY IT IS FROM STOMACH NOT LUNGS AND I AM ON NEXIUM TWICE A DAY...BEING OVER WEIGHT DOES NOT HELP. I TRY DIFFERENT WAYS TO LOSE WEIGHT BUT ALL I HAVE TO DO IS LOOK AT A PICTURE OF FOOD AND GAIN !!!!!!
THIS ASBESTIS MAY STAY AS IS THE REST OF MY LIFE AND NEVER TURN FATAL...........FOR THAT ALONE I AM VERY GRATEFUOL IF IT DOES.

Hi Bill, I hope you and your family had a great Thanksgiving! We did have a good one. We spent a couple of days at our daughters home in Rochester. It gave me time to check out the Mayo Clinic where I will be going for an appt. next week, not for my lungs (I don't think) but a seperate issue that has been showing up with more frequency and really making life more of a challenge. I have angiodema which is where my mouth, lips, tongue, throat chest and often also on my body I get swellings and/or welts. My tongue has been swollen to the point of filling up my mouth, couldn't do anything for relief to even get air. Thankfully my nose was clear so I could breathe! It's happened a couple of times like that and that scares me as well as the lung thing which is a daily struggle.
My wife and I began to plan for my death after getting the asbestosis news in 1996, I'm sure you can identify with that. Here I am 16 years later and still living with the heaviness like you mention among other things. I'm thankful for this much more time we have had but it sure hasn't been a picnic!
I dislike those "blow" tests because I am always able to give a good test, the doctors seem to think that is the measurement for how you are doing and to me it doesn't begin to tell how I feel.
My VA doctor and my Health Partners doctor and my allergy doctor have not been able to come up with a valid treatment or diagnosis for the angiodema which has sort of taken over our lives presently. The VA allergist made a determination that I don't have an allergy but a "toxicity" in my system and I am wondering if maybe after my Mayo appt. I am going to find out the "toxicity" is in reality the asbestos fibers in my lungs. Man, I wouldn't wish lung or breathing problems on anyone, it's really hard. Much like yourself, one of the original Pulminologists I saw told me I may very well die from something other than the asbestos and I am also grateful for that information.

hi jerry,
yes, a very good turkey day here also,. The son and family came in for 2 days and now back home on Hilton Head Island. I ate to much!!!! yup have to diet! but......it was so good !!!!!!
I am real glad to hear your going to Mayo Clnic!!!! You cannot beat them !!!!! and tell them also about that tocix diagnosis you were told and let them check you totsally out.
as far as funeral arrnagements...............the wife and i both decided we will stay in florida and go into a crypt down here. I'm not much on earth burial and none of that cremation stuff either. we will stay where its mild temps and be comfortable. ha ha so we got that all set and actually a relief to have it done and done our way!!!!!!

I awaite test results from the allergist and the holiday and long weekend holding that up for now.
what your going through is very scary with that angiodema......never heard of it. The way my nose stuffs I'd be in crisis witht that!!!
I think your very smart to go to the Mayo !!! yes Sir you are. I will be anxious to hear how that goes and explain it all to them!!!!!! Lay it all on the line!!!! I wish you best of luck man and a prayer off to you as well.

Like I said.............we may never go from Asbestosis!!!!!! Kinda like Prostate Cancer........Have it for ages yet my Father in law lived to age 95 and did not die from that !!!! Go figure!
You take care and will have you in my thoughts.
Bill

Here I am having emerged from a couple of intense days at the Mayo Clinic in Rochester, MN. As I mentioned in an earlier post I had been referred there by a couple of my primary doctors (VA doc and Health Partners doc) in hopes of finding out what is causing my Angiodema, a nasty swelling that occurs frequently in my mouth/tongue and other areas of my body in the form of welts. Several other concerns were discovered during this exam and ultimately testing of ALL those concerns have already been completed!! Next week I will have a consult with physicians in those depts and then 2 weeks after that a return visit to my original doctor to hopefully find out what is causing this strange problem which, I might add, is life threatening. Never once have I imagined anything other than the asbestos fish hooks taking my life. One of the very good things about the last 2 days is that I realized how my lungs have been ignored, my complaints have been ignored, because I have consistently blown a good PFT. Well, at Mayo Clinic my doctor is being ULTRA thorough and of course my lungs are a part of that resulting in more attention to that area than I have had in recent memory. I am so thankful for that attention. This has resulted in some lung function tests that I have not experienced previously so we will see what this shows us next week. I am SO glad that I pursued this and made the decision to go to Mayo!! I will keep you informed.

HELLO JERRY,
BEEN THINKING OF YOU AND ANXIOUS TO HEAR WHAT IS GOING ON. MY DR. PRETTY MUCH HANDLES MY LUNGS AS YOU SAY YOUR REGULAR DR. DOES BUT MAYO CLINIC IS GOING OVER YOU HEAD TO TOE.

FIRST OF ALL............I DO HOPE THEY ARE ABLE TO TAKE CARE OF THE ANGIODEMA . THEN I WOULD BE INTERESTED IN WHAT OPINION THEY GIVE COMPARED TO YOUR PRIMARY DR. ABOUT THE ASBESTOSIS !!!!! FROM WHAT I HAVE BEEN ABLE TO SEE ON THE INTERNET.IT IS WHAT IT IS BUT THE KEY IS NOT TO TURN INTO THE MESOTHELIOMA...........WE CAN ONLY PRAY RIGHT GUY?

MEANTIME.........YOU JUST LET THEM DO WHAT THEY DO BEST FOR YOU. I TRUELY SWEAR BY THE CARE AND OPINIONS OF MAYO !!!!!!!! YOU HAVE TOTAL FAITH ALSO !!!! I WAS AT A MAYO CLINIC IN BOSTON WAY BACK IN TIME AND I TELL YOU THEY WENT OVER ME WITH A FINE TOOTH COMB.BUT.......AT THAT POINT IN TIME THE ASBESTOSIS WAS NOT DIAGNOSED..THAT CAME LATER BUT.......HERE I AM AT AGE 76 AND STILL PLUGGIN AND GONNA LIVE LONG ENOUGH TO P--- OFF MY KIDS !!! HA HA

YOU TAKE CARE AND THANK YOU FOR WRITING BACK AND WILL WAIT ANXIOUSLY FOR YOUR NEXT UPDATE.
AS EVER,
BILL IN FLORIDA

Hi Bill, I decided to answer you here rather than on Facebook just in case Jumper or someone else comes looking for more info. I suppose by now you have seen the snowy pictures I posted on my Facebook page. It is pretty but it sure is tough when we clean it up. My lungs give me fits since my lungs are not functioning up to speed meaning the oxygen doesn't pass through the old boys in to the blood stream very well nor does the carbon dioxide get out very well so this makes me short of breath after any minor exertion. This is one of the things I found out last week at Mayo. Boy, they sure do give a person the complete once over, don't they?
I'm going to copy and paste what Joan (my wife) wrote to her siblings regarding our Mayo trip last week, hope that fills you in and if you have questions feel free to ask away. After all, we are here to share this info, right?
HERE IT IS:
Hi, Well, it has been a very busy, fun-filled time for Jerry! He is exhausted! but feel we are hopefully on our way to an answer for the angioedema.

Immunologist/Allergist- Dr. Weiler. She is the MD who will coordinate all of the investigation for Jerry at Mayo. She began by asking "how can I help you?" She spent well over an hour with us obtaining a full medical history of his angioedema. She is quite sure the angioedema is not caused by an allergy. She asked if a biopsy of the angioedema site had been taken (no). She ordered much blood work (even more than the 10 tubes taken at the VA). During physical exam she heard a slight heart murmur. Because both of Jerry's brothers have heart issues she ordered full heart tests and a consult with a Cardiologist. Dr. Weiler heard "velcro sounds" in both lungs and ordered lung tests and consult with a Pulmonologist. Jerry (and I) feel his VA Pulmonologist is dismissive and is glad Dr. Weiler requests full lung check. Dr. Weiler prescribed 3 medications in hopes this will minimize his angioedema symptoms until she finds the cause. 2 are antihistimines and Jerry is unbelievably exhausted when taking these! Jerry does not want to take these lifelong. We see the lab test results (online) which show a few Immune values outside of normal limits. We meet back with Dr. Weiler after all tests and consults are complete. Jerry returns to Dr. Weiler on December 20th unless an appointment turns up earlier.

Cardiologist: All cardiac tests negative and no cardiac disease.

Pulmonologist: Because of the asbestosis and lung plaques/scar tissue, Jerry's lungs do not allow all of the oxygen to pass from the lungs into the blood stream and he is unable to release all of the air/carbon dioxide out of his lungs. This is the reason he is short of breath and coughing with very little exertion. We have noticed these symptoms have increased the last few years. His xray is not much different than his previous. Next week Jerry will have a CT and another type of lung function test. Dr. Nelson doesn't expect to see anything of special note on the CT but will use it as a baseline for future exams. The overnite oximeter test may indicate he is a candidate (or not) for oxygen during the night. For several years Jerry has wanted a Mayo Clinic Pulmonologist to check his lungs.. so this was the perfect opportunity. His lungs are not related to his angioedema but are still a part of his medical profile.

Our Schedule: We chose to schedule Jerry's additional lung tests next week; on the days we will be in Rochester for their church play (Janae has a small part) and Janae's school concert. We will leave home Wednesday afternoon Dec 12th and return Saturday morning December 15th.

General: One of the good things about going to Mayo is that you can see all the specialists within a day or two, instead of waiting for weeks when trying to accomplish this at home. Mayo clinic is so organized! They give us paperwork/schedule that is easy to follow as we move from floor to floor/department to department. The doctors and all staff are exceptional. The buildings are large and beautiful and contain many works of art and quiet, comfortable places to sit/relax between appointments or for the family to wait while their loved one has tests.

So, that's all folks. Love joannie

GOOD MORNING JERRY & JOANNIE,

CAROLE HERE WRITING FOR HUBBY, BILL, HE IS NOT INTO THE TYPING SO I AM DESIGNATED SECRETERY.....
WE WILL BE MOST ANXIOUS TO HEAR HOW THIS ANGEIOEDEMA UNFOLDS.

MOSTY INTERESTING YOUR REMARKS AS TO THE LUNGS. I ALSO AM SO WINDED UPON MINOR EXERTION (AND I DO NOT MEAN SNOW SHOVELING JERRY !!!!!!!) DONE WITH THAT!
NOTHING WAS MENTIONED TO ME ABOUT OXGYEN OR CARBON DIOX. BUT WHEN CHECKED MY OXGEYN LEVALS ARE OK. I AM SEEING A REGULAR PULMONARY DR. I DO HAVE ALOT OF FAITH IN HIM BUT................YOU ARE DOING THE "RIGHT THING" BY HAVING MAYO CHECK YOU OUT HEAD TO TOE!!!!! I DID YEARS AGO AS I HAD SAID BUT NOT IN LATER YEARS.

I WILL BE MOST INTERESTED IN YOUR CT SCAN RESULTS. TO DATE I HAVE X-RAYS AND ANNUAL PULMONARY FUNCTION TEST BUT NO CT SCAN.. SO FAR THE PULMONARY FUNCTION IS OK. WE ARE UNDER THE IMPRESSION IT IS WHAT IT IS AND WILL STAY AS SUCH IN HOPES IT NEVER TURNS TO THE MESO. BUT..........MY FEAR IS...........HOW DO YOU KNOW WHEN IT TURNS? WHAT DO YOU LOOK FOR?

AT THIS TIME DR. SAID NO TO AN OXYGEN FOR ME.
AT NIGHT I DO USE THE SLEEP APNEA MACHINE WHICH ONLY DISPENSES A WATER MIST. BUT THEY SAID I STOPPED BREATHING 52 TIMES !!!!! HUMMMMM KINDA SCARY.

I DO NOT HAVE TO DO MUCH IN A DAY TO BE SO TIRED. IF I GET A GOOD DAY........I TEND TO TAKE ADVANTAGE AND "MAKE HAY WHILE THE SUN SHINES" BUT.......PAY FOR IT THE NEXT COUPLE DAYS!!!!! SURE CANNOT GET UP AND ABOUT AS I USED TO! ACCEPTING THAT IS HARD.

MY YEARLY X-RAYS SEEM TO STAY THE SAME AS YOU DISCRIBE. (THIS IS GOOD I KNOW)

I WILL TELL YOU THAT SINCE BEING ON THE NASAL ATOMIZER WITH 2 MEDS I HAVE COUGHED LESS AND THE MUSCUS HAS COME DOWN SO WITH LUCK WHAT I FEARED TO BE LUNGS IS ALL PRODUCED BY THE CHRONIC SINUSITUS.

MY CHEST DOES GET SO TIGHT AT TIMES OR FEELS SO HEAVY. MAYBE DEPENDS ON THE WEATHER. WHEN MUGGY I STAY INSIDE.
(ANHOW.....BEST I DO AS BEING ITALIAN I TEND TO TURN REALLLLLLLLLLLL DARK FROM THE SUN AND CAROLE IS A REAL SNOW WHITE SO IN PUBLIC WE LOOK LIKE A MIXED MARRIGE) HA HA

JERRY DO YOU EVER GET THIS SENSATION? WITHOUT ANY EXERTION I CAN SUDDENLY BREATH IN AND GET A SENSATION MY LUNGS OR BREATHING JUST LOCKED UP???? THIS HAPPENS ALOT AND WITH NO CAUSE! LET ME KNOW.

OUR XMAS PLANS ARE TO LEAV HERE ABOUT SUNDAY DEC. 23 AND DRIVE 6 1/2 TO HILTON HEAD ISLAND WITH THE SONE, WIFE AND GRANDAUGHTER. THEY HAVE OVER AN ELDERLY NEIGHBOR COUPLE (VERY VERY GERMAN) AND LIKE ADOPTED GRANDPARENTS TO THEM AND SOME FRIENDS FLY IN XMAS DAY AND WE ALL HAVE A HUGE PROME RIB DINNER. lIL GRANDAUGHTER LOVES MEAT, POTATO AND GRAVEY. THE GERMAN COUPLE HAVE US TO THEIR HOME FOR A REAL GERMAN MEAL AS CAROLE LOVES GERMAN AND ME ALSO. AFTER WE RETURN HOME WE ARE GOING TO GET A 4 YR. OLD SECOND MI-KI BREED DOG. THEY ARE SMALL AND SO GREAT FOR SENIORS AS CALM ,QUIET AND SO LOVING. WE HOPE OUR LIL ONE NOW NAMED ,OREO, IS GOING TO LIKE THE COMPANY ALSO.

WE WISH YOU AND THE MRS. THE VERY BEST NEXT WEEK AT MAYO AND WE WILL WAIT TO HEAR BACK AND ENJOY THAT XMAS SHOW.
WILL SAY A PRAYER FOR YOU TO GET YOUR ANSWERS AND GET ON WITH LIFE.

MANY FROM YOUR STATE COME SOUTH FOR THE WINTER. WE JUST OPTED NOT TO KEEP 2 HOMES AS SEEMS UNLESS YOU HAVE A GOOD PERSON TO WATCH THE WINTER HOUSE IT SEEMS THINGS GO WRONG WHEN AWAY.

UNTIL,
BILL & CAROLE & OREO