Post by Blossom/Jackie W. on Feb 18, 2009 12:02:27 GMT -5
.....as it relates to Lung (surgical) proceedures
(This post of mine will be a temporary one. I'll delete it later) To start us off WendyCo has agreed to share what's going on with her now. She's being tested for E'THING at National Jewish ion Colorado.
She can also tell you a bit more about herself (for those of you who don't know her)
Thanks Wendy! That's how we all learn...by sharing info.
Thanks Jackie...some of you do know me and others don't but I feel I know all of you having read most things and we all have this dreaded disease in common...that gives us all a very strong bond..........
Things to ponder in life
DX at 46, 12 years ago (tested neg for Alpha1) Went on 02 for sleeping 8 years ago Went on 02 full time 4 years ago Had a TTO 2 years ago…..
My FEV1 in 2004 was 34% and life was good Same year had a Spinal Fusion followed by PT and pulmo rehab. My FEV1 now, in 2009, bounces between 19% and 23%
I exercise every day although some days I can only do the TM for 5 minutes but I do that each and every day…..also work on some upper body exercises, often from a sitting position. I get groceries and make meals although much slower than I did before. I also pee in my pants when I do these things too quickly, low 02……then I have the extra chore of cleaning up (me not the kitchen )
I have 9 grandkids and take care of several at different times during the week. Sometimes all day, sometimes an hour or so…..most are able to tend to their own needs so I’m just talking to them and being here with them. A new one was born 2 weeks ago and mom will be going back to work in May….not sure I can help but will try…..
Newest Adventure (And yes, life is a great, big huge adventure full of twist and turns and excitement)
I started my new adventure last week with the advice of my regular pulmonary doc (who has been a solid support for the past nine years, and she is a great example of what a doc should be!)
I have started to be evaluated by National Jewish in Denver to see what my options might be for a better quality of life. (I live about 60 minutes North of Denver so one of the fortunate ones) We are looking at doing everything from Trials to LVRS to Transplant to Nothing. It will depend on the test results….the test I have had are: Card Echocardiogram routine Card Echo Agitated Saline Card ECG-12 Lead ABG and Walk Oximetry CT Chest Extend X-ray Chest Pa & Lateral V/Q Lung Scan Acapella training More test are scheduled in March (two days worth)
I have been a fairly private person with my life and share only with a few friends. I talked to Jackie/Blossom/WonderWoman about this and asked if she thought it might help someone on the forum to post this info and keep everyone informed. She thought it would be a good thing so here I am…. I’m very open to questions if any have some. As far as emotions with all of this, it’s hard to be too emotional until I know what I might be facing. It’s all just a new adventure at this point.
I have been a fairly private person with my life and share only with a few friends. I talked to Jackie/Blossom/WonderWoman about this and asked if she thought it might help someone on the forum to post this info and keep everyone informed. She thought it would be a good thing so here I am….
I think that sharing any real experiences is a good thing. The people that have not had the experience and might be considering it, could really benefit from reading this. I have been rather surprised to find people reading more of the posts than I realized.
I never have problems asking my questions. I realize that some subjects are a little awkward to write about. Sometimes I have posted subjects that others really wanted to talk about but couldn't bring up. I figure we are all going thru the same things pretty much.
Thanks Wendy and Jackie for this contribution. Best of luck Wendy. I truly hope this all works and benefits you. You deserve it.
Post by supergrandma on Feb 19, 2009 2:44:34 GMT -5
Hi Wendy I have a couple of questions. I am curious your spinal fusion was it with your neck. I suffer from degerative disc disease especially in my neck. I was to have an operation about 20 years ago but have managed to postpone it. I have since then had a natural fusion of the one disc but I still have to talk pain medication. I believe that my neck has a lot to do with my breathing but my pulmo says no.
My fev was 30 in Oct. but to me it seems like it has only gotten worse but may be just in my head.
I will have to go back this spring to see pulmo and I was going to talk to him about a lung reduction. I have made my mind up that I am not one for a lung transplant but may be if things get really bad you never know. Do you know how low your numbers have to be before they do a Volume Reduction? I am really hoping for stem cells but I problably won't last that long. But I am diffently going to ask a lot of questions on my next visit. Thanks for sharing your story.
hey supergrandma, I had lower back fusion (L5) so not the neck..my pulmo has told me any pain in our bodies can cause us to breath a little heavier....your body is trying to deal with the pain and that takes energy...anything that takes energy can affect our breathing......gosh I wish you well with the neck, I know how badly it can hurt I really don't know about the numbers and the reduction surgery, I do know if they are too low you can't have it done....concerns are with my DLCO being way too low......whatever I find out I will share with you..... I sure would like to work with stem cells too, that has the be the future of this disease.....
I do look after myself but so much has changed since then (mostly due to the back surgery).....I also stopped working then so lost activity that way(I used to walk a bunch at work and then after really work out etc to keep my breathing good) and then my usual exercises slowed down and then I got sick.....would work back up and get sick etc etc etc....I have been on pred more than off in the past 4 years (guess that is an exaggeration) I get either infections or inflammation each needs treatment......I also didn't stop smoking until 2006............add it all up and here I am.......I also watch grands a bunch and they have a habit of getting sick ....usually we know they are sick after they have exposed me..........I also think the mucus plays a role in here somewhere.....I can remember back talking to Mare and she talking about you and how the two of you had the same numbers at one point...she had terrible mucus too and it seems to breed stuff in there...no very scientific but true........
I would suspect the smoking would be the culprit, I stopped in 2000, I think once you have COPD smoking affects you more each day, seems like the defenses have gone. Mare kept smoking for a while as well, she did keep that a secret for some time. I also looked after Grands like you from 2000, all teens now, well the youngest is 12.
Wendy thanks for sharing this is quite interesting. I know how you feel about being private, as I have pretty much been that type of a person myself. I like to be strong, and don't want anyone to know if I am sick. I know that is not ideal, but I have never liked to burden anyone with my problems.
Supergrandma, you have to be severe for lvrs, but there are exceptions to every rule. I can give you a couple of quick points. 1. To have lvrs your dlco must be 20% or above and at 20% many doctors won't recommend it. 2. You have to have 20% fev1 at least. 3. Upper lobe disease 4. On room air for at least 20 minutes they give an abg and the co2 levels must be under 50, as that is the cutoff, and there again that cutoff is in the nett and many doctors will not work with anything at 49 & 50 all 3 thoracic surgeons I spoke with would not do the surgery, they had a bad reading of 49 on me and wanted another done and it was at 46, the 1st test I had done was not properly done here at home. These are the 3 things I would want to know before I went through anymore testing for lvrs. Get tested and see where you are, can't hurt and it sure gives you a much better quality of life.
not sure Jackie if I just continue or start a new thread so will let you do what you want with this
New set of test
After my first set of test in Feb, had more this week…. On Monday had a Esophogram/barium swallow and that was Lots of fun , NOT! the stuff they have you drink now isn’t as bad as it was when I last had one of these some 30 years ago. This is to see about my acid reflux
Then yesterday, Thurs spent most the day at National Jewish again with active test. I first had a PFT (pulmonary function test) and could not have any of my breathing meds for 24 yours before so that’s not very pleasant. The only good thing about this test is I finally was able to blow long enough to get an accurate DLCO number (in my past test they had to guess-ta-mate because I couldn’t finish the test and my numbers were LOW)
The next test was the rehab 6 minute walk….not to be confused with the 6 minute oximetry walk I had in Feb The first go around I didn’t do so well and did desat….so they checked with the doc and turned my 02 up to 4L (from 3L) and had me do it again……made it a whole ½ lap further and my 02 stayed better…..second time I walked 1025 feet…..
Then after all this exercise I had the exercise tolerance A-Line test…this time I sat on top of a bike (with an icky seat I might add ) hooked up for action……all the stuff for monitoring the heart, and a blood pressure cuff, and an arterial blood gas taken every minute (they keep the needle in with a top and just open er up when they want the blood)and I had to clip my nose shut and put my mouth around a thing which controlled my 02 intake…….then I started peddling, had to peddle and keep pointing on the sign they hold up how hard it was to breath and how tired my legs were, etc….I did pretty good they say…that’s my competitive nature and I don’t want to stop until they want me too although I did have to a minute before they would have stopped me….they increase and decrease how hard to peddle during this time…..they explained it was like riding along a street and then going up a steep hill, darn right on that!!!!!!! Hehehehehe
Then to be sure I was still having a good time, had a physical therapy evaluation….guess what? Had to exercise and show her what I do each day and then she showed what to add to it……by this time I really was feeling rather drunk from all the movement and was getting pretty giddy………. BTW, this all started at 9:15 and by the time I had my last test it was 3:00 with only one short break in-between so I was moving this bod the whole time…….
The last test of the day I finally got to just sit…..and drink more barium! What a reward at the end of the day…..more test of the esophagus….got to eat some pudding and crackers too with the barium…this was called a tailored barium swallow…. Then we drove the hour and a half back home……. That’s the end of the testing for all of this……do have to go back down there for another 2-hour test as part of a study…..will see the doc in April for the results of all of this and see where we go from here……….
WOW!! That is a lot Wendy!! Good for you. There testing is different than what I had done for LVRS & then Transplant. They have never been able to get an accurate DLCO on me and they haven't tried now in almost 2 years. That box gives me the creeps so I am just as happy.
Wishing you lost of luck, hopefully they will be able to help you. That was one long day! Did you get to take your meds after the PFT?
Colleen what test did you go through? I'm curious the differences... Deltagirl, you could have done it....if someone had told me I would do that I would have told them they were crazy, they don't push you but sure do encourage you along..... Jackie, my wrist is still very sore and can't do my normal exercises if it involves that hand, go figure! anyway, here is the newest...
Yesterday, Weds, I went back down to Nat’l Jew and took part in the Gene study program. It took about 2 hours and the jest of the whole study is to find out why some people that smoke/smoked get copd while others don’t. I think this is a great thing and I sure hope they can figure it out……
For the study I had to have a CT scan (since I had one at Nat’l Jew in Feb they didn’t need to repeat it)….I also did the 6 minute walk, going as fast as I could…I had nothing to carry or pull or push (02) so did better! Hip hip hurray!!!!!!! I outdid my own personal best by 200feet, no small accomplishment I would say! in the past the best I could do was 1025 ft, yesterday I did 1215 ft……..makes me giddy! Again though and all who use 02 know the difference, without dragging that along you can do much better, the RT carried it for me…
Then they took more blood, 5 vials………………….then lots of questions, about 300. They all pretty much asked the same thing but different ways….do you cough when you awake in the morning? Do you cough when you first get up in the morning? That kind of thing….I kept laughing because I thought it was silly hehehehe
She said in the next couple of years they will get in touch with me about 4 times and update some questions etc…..that was about it…..I strongly suggest anyone having an opportunity to do this, go for it…..in the long run it will help those coming behind us…
Post by Colleen-Pa on Mar 12, 2009 17:19:37 GMT -5
Hi Wendy, I was referring to the exercise test, should have been more specific ! I had one but it was on a treadmill and I barley made 7 minutes!! They had a chair right behind me and at first I thought it was kinda peculiar but when I said I had had enough, I was so glad it was there!!
Other tests were CT scan, MUGA scan (heart), VG scan(lung), Chest X-ray, Heart Ecko & EKG, heart cath, about 30 vials of blood. Full PFT in the box, 6 minute walk. ABG (my wrist also hurt for a few days and I didn't have the continuous one!) PPD, TB test, I know I am probably missing something else, if I remember I will let you know. I also talked to a social worker and a psychiatrist to be sure I was mentally able to handle transplant, a nutritionist,OH I know what it was now, a bone density test!! They were pretty thorough, did not leave nothing that they didn't check including my support team at home. Whew, looking back it was a lot of work! BUT well worth it! Even made sure I had been to the GYN & Dentist. I know I an writing a lot here but I first was tested for LVRS and was turned down by the famous Dr. Cooper (He performed the first lung transplant in Canada) and then went on for transplant testing so it was a bit longer than I expected.
Last year I also did a genetic screening through Brigham & Women's in Boston. It involved a PFT, blood work and tons of questions. Probably something similar, they tested my whole family including my brother & sister, was pretty neat, I do believe there is something else beside smoking for early on-set COPD. Hopefully someday it will help someone. It also picked up that Danny (my son) has asthma, his PFT improved 12% after albuteral so it was worth it just for that.
Sorry this was so long, I don't want to take over your thread here !! I must say its good to compare & see what others are doing, maybe get more people to get out there and get tested to see if they have any options to live a better life with this disease. ♥ I hope that they can help you and get you breathing better, How awesome would that be!!
Jackie, you probably can't recall because I did mine over 2 years ago, it was at the University of Pennsylvania in Philadelphia, I have been on the transplant list since 10/18/06. Been a while but when its my time, its my time!
hey Pat, uh co-conspirator LMAO! I don't know about the neb, they did ask me but I only neb when I'm really sick and they didn't say anything about that....the Doc I have does NOT like the TTO though and made sure I knew
Most doctors have absolutely no idea what TTO is. They assume that is a tracheostomy, because all doctors learn about these as an emergency procedure to open a blocked airway. See en.wikipedia.org/wiki/Tracheotomy . I learned about it as a kid because my fathers brother died from diphtheria - it really tore up my father as he was a doctor and he could have saved his brothers life, but he was at sea (during WW II) at the time.
If interested in a TTO, (which for those that don't know is a tiny direct opening into the trachea, or windpipe, just large enough that an oxygen catheter, a tube about the same size as cannula tubing, can be slid in) See www.tto2.com/Default.asp You will probably have to educate your doctor about the procedure
Muffin most doc's I have run into like the TTO, it just happens to be the one I have at Nat'l Jew doesn't like them! he told me his younger colleagues disagree with him, but he is senior to them and doesn't have to agree..... hey RT, how are you doing? heard you went through a rough time hope it has calmed down fo ryou.....I haven't run into that doc but they aren't done with me yet either
today was the big day for results.....I have copied here an email I sent to some friends.....too tired to explain more tonight
After all the testing and then waiting saw the doc today and he said………
More testing …..Actually I am very impressed with him this time and feel that I really am in good hands. I thought so before but he’s not leaving anything to chance and I like that.
The good news is that most of my emphysema is in the upper lobes and my numbers are low but they would be good enough to qualify for a lvrs if that is where we head.
He is concerned with the amount of infections I have had over the year(S) and doesn’t want to do anything until we get to the bottom of that. He said it could be several things, including pseudo(isms) can’t for the life of me figure out the spelling right now but it’s one of those nasty little colony of buggers that are resistant to anti’s….
It also could be from my TTO…or none of these things….we will test to find out….
BTW Char was with me and when the doc asked if my infections were more often since my TTO, she said YES! I looked at her, you know THAT look hehehehehehe she did say she thought they were worse when I got them....
He also has referred me to a cardiologist at Nat’l Jew to look me over. Guess my heart is leaking some blood and that may contribute to my low oxygen level….don’t think it’s anything they are very concerned with BUT……………….have it checked..
He also has ordered a PET scan which I will have next week also. I have an area on the top left lobe that could be scarring or other things and he wants the scan. I’m a little nervous about this one but hey, it’s another adventure……
A few other little things but I’ll talk about them later…..I wanted to get the gist of it all to you……..