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New Day, New Journey: One Man's LVRS Experience

Jane M. Martin, BA, LRT, CRT

 

My name is Ronnei. I’m a 49-year old human with multiple handicaps—I prefer to say I’m “handi-able.” I have Hemophilia-classical A severe, Emphysema COPD-severe, and Epilepsy with grand mal seizures. I’ve had 26 surgeries with more to go. This is my experience with Lung Volume Reduction Surgery (LVRS) as I told it on the Breathing Better Living Well Community forum.

Even though LVRS may not be right for you, I hope this glimpse into one person’s experience will help you learn about the lungs and this lung surgery, but more importantly, about courage and spirit in the face of incredible odds.

Ronnei’s complicated medical history called for rigorous pre-operative testing and consultation. He might have been disqualified for a number of reasons, but he cleared one hurdle at a time and made it through the process. He encourages anybody interested in LVRS to at least ask the doctor about it and if appropriate, go through the testing. He says, “You’ve got nothing to lose” and wants you to know what keeps him going: “Keep a positive attitude. Take one day at a time.  Never Quit. There’s no such word as can’t. I can climb any mountain.”

We join Ronnei’s story here, a few days before surgery, when this forum was created so he and his wife, Annie, could share their experience and find support in the Breathing Better Living Well community.

This journal was written from the perspective of Ronnei the patient, and his family and friends. This is not meant to serve as medical advice or a predictor of what this surgery might be like for anybody else. It is, simply, the story of one man’s experience and a year-long conversation with his online friends. Everybody who has surgery has a different experience, and outcomes vary widely. Surgery of any kind carries with it some level of risk. Ronnei (cub1650) and the friends you see here have given full permission to share their words in this way.

This is not an endorsement by Breathing Better Living Well or Jane M. Martin of any products that may be mentioned in the conversation.

 

Jane M. Martin 

posted 12 November 2010 - 12:12 PM

Good morning, all...
This forum was created so we can follow Ronnei (cub 1650) in his LVRS (lung volume reduction surgery) experience. Let's all keep him and his family in our thoughts and prayers as he goes through this major surgery – and hopefully on to better breathing.
Jane. 

 

cub1650 
posted 12 November 2010 - 04:07 PM

Wow my page! So cool thanks. Ok news here - surgery is 12.30 pre op is at 11.00. I’ll be back to add more thanks.
ronnei
no word as can't

Betty Lou 
posted 12 November 2010 - 05:51 PM

Ronnei,
I'm new to this group so I'm playing catch up with your story but I certainly will remember you in my prayers.

Betty Lou

 

cub1650 

posted 12 November 2010 - 08:10 PM

Thank you dear but remember its not a story lol but adventure lol. This surgery has been a long journey and many tests. It seems so cool that this is almost here
ronnei
no word as can't

 


Sunday Day/Night before

cub1650 
posted 14 November 2010 - 10:31 AM

Welcome to Sunday. its raining here nice day for a road trip

no word as can't

 

cub1650
posted 14 November 2010 - 06:19 PM

Well the weekend has been cold but fun. Seen Courtneys college for the fall of 2011. Had lotsa laughs and fun times with friends and family. We are now at the med inn at the hospital relaxing and getting ready for the morning. The fun starts at 10.00. It takes 2 hours for the prep before surgery. Surgery starts at 12.30. My wife Annie will be doing my up dates until I can. My support team is all ready I really don’t see any problems except its going hurt so u all have a good week and I’ll return.
loves ronnei

 


Tuesday - Day after – ICU

posted 16 November 2010 - 11:30 AM

Hi everyone this is Annie, Ronnie's wife. I am here to let you know how he is doing for those who don't know about the care page. Well to start with, surgery started late he was suppose to go in at 12:30 and went in at 2:50, surgery lasted until 5:30. Everything went great. He went right to the ICU from surgery didn't get to see him until almost 7 or 8.
We had a rough night last night. They up his pain med's to ease the pain some so he was more comfortable. Doc came in this morning and so far no air in his tubes that are coming out of his chest which is a blessing. Little more comfortable today. Sometime will be moving to a regular room. Color in his face looks great. Was sitting up in the chair and having a little breakfast and will be doing the same thing for lunch. Update everyone soon as I know more.

Dee
posted 16 November 2010 - 03:04 PM

Thanks for the update Annie. Please give Ronnie my best. I hope everything goes well and that he continues to improve.

 


Afternoon

Annie

posted 17 November 2010 - 11:58 AM

It's Wednesday afternoon and we have taken a lap around the whole 4th floor. When they did surgery 4 tubes were put in chest - as they were coming out they put them together at 2. So today they gave each tube there own box so the doctors can start monitoring each one separately and take them out. Still in a lot of pain they up the pain again, alot of rattle in the chest he can't seemed cough anything up, it's there but it refuses to come out. A few times a day they brought a machine in to message his back to try to get the stuff to come up but its stubborn like him. He feels more comfortable sitting up in the chair then laying in bed. I will chat with every one later. Hugs to all. Take care and God bless.

 


Pain more pain

cub 1650
posted 18 November 2010 - 03:49 AM

Hi folks I’m typing this early morning to give u the truth about this surgery. This is very painful its a toss up between the chest being cut or trying to cough. Trying to cough takes course one. So far this is one surgery that I’ve really had to work with - we are managing the pain with oxcecodoine tylenol and dalated. What a combo one good mixed drink. Then there’s the cleaning out of mucus - that’s a fun job I’ll tell u. Then there’s the beating on the back. well I’ll continue in a while. need my nap.

 

Peg
posted 18 November 2010 - 09:17 AM

Ronnei, that sounds like a heck of a cocktail! Double it up and cough like crazy!! 
Seriously, hope you get that breakthrough to clear the mucus sometime soon! If there is a trick in the book to help it happen I believe you are in the right place to find it!
Have a great coughing day, and stay in touch!! We are all following your ordeal and miss hearing what is happening for you and Annie.
Blessings,
Peg

 

cub1650
posted 18 November 2010 - 09:59 AM

I’m back. They’re going improve on pain control. I wont lye this does hurt but once they get the control u need it works. See the one problem I’ve had is I’m used to the pumps but with this surgery it wasn't giving me a pain free environment so not good. So the combo I’ve got works. There going be upping it up more.

heres why u have the pain
your chest has been cut
you have mucus trying to get u to cough
coughing hurts because you were cut

Does it get better? Yes it will 2 days after surgery not bad. Pain gets improvement this should help. see what u are looking for is pain relief without the sleepiness.
Got one x-ray yesterday checking for air and liquids. Today a x-ray for looking for the tube placement. Over all they wont let u down. yes takes work takes time and good pain control and so far I’m doing well. They are a good team here they know what to look for –they even take care of my heart and do everything they can to help me.

 

Eileen/MA
posted 18 November 2010 - 11:23 AM

Hang in there, Ronnie. You've got a great attitude and I'm sure you will be able to get that mucus out. It sounds like you are working hard with the staff to recover. My thoughts and prayers are with you and your family.

 

Peg
posted 18 November 2010 - 01:26 PM

Hang in there, Buddy! I believe the worst is behind you and your healing will improve day by day. Hour by hour would be nice, too! 
What a wonderful support system you have. If any of us could shoulder a cough for you we would, but in that I'm afraid you are on your own!
Have a better day!
Smiles 
Peg

 

Ken-FL
posted 18 November 2010 - 02:57 PM

Ronnie,
Hang in there guy. It is always darkest just before dawn. The pain will improve and hopefully your overall condition will be much, much better.
Praying for a great recovery and reduced pain.
Keep smiling, things will improve.
Ken

 


Wednesday Day 3

Annie
posted 17 November 2010 - 06:08 AM

Well its Wednesday day 3 of this adventure. We finally got to move to a regular room which did not happen until evening on day 2. Therapy came in on Tuesday and took him for a short walk down the hallway which is wonderful. He has his bandage off of his chest and it looks wonderful, puffy and a little black and blue - no redness. His next goal is to cough and to bring up as much stuff as he can to clear his lungs. Still no air leaks. Breathing raspy that is due to surgery and the drain tubes. The first 48hrs are usually the roughest. So as the days progress things will get better.

cub 1650
posted 18 November 2010 - 08:22 PM

Welcome to Thursday u all. Today was a great day my intense coughing has calmed to a workable thing its getting better slow but sure. Thanks for the prayers I really do appreciate it. The power of prayer does work. How about some even greater news? I started with 4 tubes for air and drainage, checked for leaks and today I got 2 tubes out. The 2 that came out had no leaks no issues so 2 more to go. Looks like I’m here for the weekend not sure but I’m really thankful for good friends and prayers. I’m hoping...

cub 1650
posted 20 November 2010 - 05:10 PM

Heres the news update this covers Thurs Friday and today Thursday. Not much more walking always trying to cough and get that icck mucus out of my throat. Loaded pictures in my gallery to look at.
Friday had some really severe pain. they gave me a dalated shot and most of Friday was a blur. did get my walks in so as that was wearing off. i went into a no more pain pill mood so late early Friday night got a fever of 101.00. So here goes more blood for this and more golden water so this brings us to Saturday.
Remember I havent had any thing for pain so we did our vitals for the morning alls good. pain level at about a 3 but thats normal for me I’m feeling fine. breathing feels right. time for my walk. I made 1/8 mile. the pain I had was bad and that was with no drugs so we went back to the room to rethink what was wrong so we tried 5mg of oxic. 1 hour later took my walk again made my full 1/4 mile plus extra so its figured out that as long as u have those tubes in you need some pain meds to cover how things are moving around.
Sundays adventure will be 1 more tube coming out then a x-ray. When you get a tube pulled out you get a x-ray each time. they show if there are any changes or bleeding. over all progress has been great nothing like I have read but this is a positive thing to know.
love ronnei

cub1650
posted 21 November 2010 - 07:47 PM

Welcome to Sunday they took 1 more tube out then x-ray if that all goes well they will take the last one out Monday.
ronnei

cub1650
posted 22 November 2010 - 01:06 PM

Welcome to Monday got my last tube out this morning my lungs hurt some but over all I’m glad there out. we have 2 days left because of the hemophelia and the lungs there also running an antibiatic for all kinds of infection but over all wanna go home
love ronnei

cub1650
posted 23 November 2010 - 11:32 AM

Today is Tuesday took my first walk without 02. the walk was 1/4 mile long had to have 4 breaks. Starting 02 was running at 94% down to 87% the heart went up like it should and then dropped. the recovery time was about 60 seconds not too bad alot faster then before. I’ll talk with Jane see if we can get better time but over all not bad. I’m happy bet we can see improvement in these.
loves Ronnie

Eileen/MA
posted 23 November 2010 - 03:16 PM

The news just keeps getting better and better, Ronnie! Keep the momentum going and you'll be having a cozy Thanksgiving at home this week. I can tell you're really working hard and it's so encouraging to see that you are able to do some walking without the O2! I can only imagine what dreams you are having for your future now!!!

cub 1650
posted 23 November 2010 - 11:54 PM

DISCHARGED know that’s some sweet words - the words of home sweet home how sweet that sounds. I’m hooooooooom.
I bet you are wondering if this worked. Ready .....ok  heres some small info for you.
Took a 1/4 mile walk today. This walk was with no 02 took 4 breaks, took less then 60 seconds to recover - number at rest 94%, low was 87%.This was very good for me. ok want more. got home my first thing I did was go up stairs we all know that takes a lot. I did well. all 13.5 steps no breaks. not too bad. I’m still weak but I’ll get what I want. so theres a small preveiw of the effects.
I must go its nite time. I’ll continue this later this week
love ronnei

Ken-FL
posted 24 November 2010 - 09:01 AM

Thrilled for your progress and the fact you are home for Thanksgiving!
Much to be thankful for.

Peg
posted 24 November 2010 - 10:05 AM

What a lot you and your family have to be thankful for this Thanksgiving, Ronnie.
Now that you are at home, please be sure not to overdo and wear yourself out!
Enjoy! Looking forward to seeing you back at rehab soon and hearing more details. Just take your time and heal well!
Smiles 
Peg

Eileen/MA
posted 24 November 2010 - 01:49 PM

Wow! Things are going great for you Ronnie! Congratulations on getting home for Thanksgiving and for making such great progress.
Happy Thanksgiving!!!

Betty Lou

posted 24 November 2010 - 05:58 PM

Ronnie, what wonderful news! You just added to my grateful list for today. Enjoy your Thanksgiving but be sure to take it easy.
Betty Lou

Claire
posted 24 November 2010 - 08:34 PM

A very Happy Thanksgiving to you and your family.
Claire

Darrell
posted 24 November 2010 - 10:34 PM

Ronnei I hope your Thanksgiving is truly special. You have done a great thing for yourself with the surgery but additionally you have set an example for the rest of us on how to decide what you want, set your goal, and then just get it done. A lot of folks get into the goals and decisions but come up short on the "getting it done" part. You've inspired us with your courage and determination to push ahead full speed with complete confidence in your doctors, your friends and your faith. May your holiday be blessed although it seems it may already have been blessed.
Darrell

Darrell
posted 25 November 2010 - 07:47 AM

I hope you enjoy a well deserved holiday, you've been working mighty hard even if they don't give you a paycheck for the work. But there should be a lot of other benefits.
Darrell

cub1650
posted 25 November 2010 - 11:23 AM

Happy thanksgiving to u too and its great to be home to be with my family and the cats.
thanks again.
ronnei

 


Healing

Peg
posted 01 December 2010 - 09:53 AM

I doubt that Ronnei will brag for himself - so I will do it for him.
Yesterday, just 15 days after LVRS surgery, Ronnie was back at rehab, working
out just like the rest of us! Now, I don't know about you, but I would say that
is real determination!
He had messaged me that he would be there, but I thought he would be visiting.
No way, he did all the same stuff we did!
That is true inspiration, and real determination!

Smiles

Peg

Eileen/MA_
posted 01 December 2010 - 11:06 AM

That is so great to hear, Peg! Thanks for letting us know. Way to go, Ronnie!!!

 

Ken-FL 
posted 01 December 2010 - 11:21 AM

Ronnei,
Outstanding!!!!!! You are an inspiration!
Ken
Do not allow COPD to define your life...You can Breathe Better & Live Well!

 

cub1650 
posted 01 December 2010 - 11:43 AM

No I never brag lol but I sure am feeling better, but you have to work to make it.
ronnei
no word as can't 

 

Dee 
posted 01 December 2010 - 02:54 PM

You truly are a courageous person, Ronnie. It takes a lot of work, faith, and courage to take the LVRS journey, and here you are staying true to form and plunging right back into rehab. I'm sure it was a lot more difficult than you let on. You should be very proud. I doubt there are a lot of people who would have even dared to try. I hope you continue to gain each and every day, and every morning when you awake, I pray you breathing comes easier. You take care.

 

Darrell 
posted 02 December 2010 - 08:53 AM

So Ronnei how's the breathing and how does it feel to do the PR routine? We're all really happy to hear that you've made such great progress.
Darrell

cub1650 
posted 02 December 2010 - 03:38 PM

So far the breathing is well. I still hurt but I’m dealing with it. I’m not so out of air so much – that’s what’s so strange. Seems nice to do things, over all I’m well.
ronnei
no word as can't

 


17 days after surgery and I can breathe

cub1650
posted 02 December 2010 - 04:16 PM

Yes its true 17 days since surgery. today was my first doctors appointment since then. I was suppose to have my 6 minute walk and the glass cabinet today but to my surprise things were changed. the doctor said it was too close to my surgery time for those tests. So I got to see the doctor and ask ?s. Heres what I asked and the answers.

Now that I’ve had this surgery how long will it last? What do I expect?
This LVRS can last from 5 years to 8 plus years. It all depends on how and what I do if I stay active, exercise and work at it - then up to 8 years plus with work. If I decide to be a coach potato, about 5 years.
After 5 years the process of having shortness of breath starts again but in a slower workings. See if you work hard at it the FEV’s will fall slower and your strength will be higher to handle it.

He was really happy that I was back in rehab on the treadmill this week. I did 4.5 for an angle and a 1.0 for a speed. My O2 stayed at 97% with my best friend, 2lpm.
My lungs sound really clear and good he said my lungs are growing [naturally expanding into the new open space] and that takes time.
So over all a good report. I see him again in March and at that time we will do the glass case and a 6-minute walk.
I was told to watch what I do and what I am around. Things he needs to know about - any mucus or any kinds of me being sick - wants to stay ahead of me being sick.
I go on Tuesday to see the surgeon so over all he’s happy with my outcome and so am I.
ronnei

Neva
posted 04 December 2010 - 10:31 AM

So happy for you!  I'm betting you exceed the expectations of your docs!
Take Extra Good Care,
Neva

Eileen/MA
posted 04 December 2010 - 01:21 PM

Wonderful news. Keep up the good work!

 


4 weeks today I’m pink, no barrel look, and I can breathe

cub1650
posted 15 December 2010 - 12:49 PM

Was in Ann Arbor yesterday to see the surgeon to get checked out. he checked the incisions and made sure the bones were healing. Got to see my before and after x-rays my lungs look so cool. After you can really see the difference. My O2 sats were at 98 percent without O2. My lungs sound clear no noise. I’ve got copy's of my x-rays. I’ll see if I can get them scanned. Over all I’m doing fine. he was very happy how this surgery turned out. I was asked was this was a hard surgery I told them that out of having 26 surgery's that this was the hardest. It may sound strange but its mental and physical and you have to be ready, but the outcome is so sweet to breathe and do things that I enjoy again. My wife and I were at Hope College last week they had this very steep incline. We stood at the bottom and said lets see how this works. We went right up that with no breaks. How cool no breaks as you can see I’m doing well all good reports. Still on 02 until March when I go back.
thanks to all.
ronnei

Peg
posted 15 December 2010 - 01:58 PM

Ronnei, you are such an inspiration! You did say that this was the most painful surgery you had, and I can believe emotional, too (but we don't know what the others were for). This one most definitely was to save your life and to give you a better quality of life.
It sounds like it worked and I am so happy for you!
Happy Holidays...
Smiles
Peg

cub1650
posted 15 December 2010 - 02:40 PM

Hi peg and so much worth the time the tests and the whole process to get where I am today. it also helps that I had a team of doctors that helped me thru all of this and a great support team the outcome was fantastic.
I learned this-if you don’t know whats going on just ask. You have to ask or you don’t know.
ronnei

Darrell
posted 15 December 2010 - 02:46 PM

Ronnei I'm pleased to hear how much improvement you are enjoying. Obviously this procedure is not for everyone but in your case it seems to have been a complete success in spite of the risks and the work you had to do to hold up your end of the deal. You and your docs should all be proud of the hard work and achievement.
Darrell

cub1650
posted 15 December 2010 - 06:28 PM

Thanks no this may not be for some people but this is a choice a person has to make. I chose this so that I can have at least 8 years of good breathing. This way my daughter will be out of high school the military and college and have her own life and so my wife and me can travel some more. I hear Alaska coming soon.
ronnei

Eileen/MA
posted 16 December 2010 - 01:34 PM

Yours is a very inspirational story, Ronnei. I'm so happy that all of your hard work and faith have resulted in such wonderful results!

 


January Life’s great

cub1650
posted 07 January 2011 - 10:33 PM

Well all its a new year been going to rehab 2 days a week going to therapy for my back 2 days a week and been really working my lungs they are doing great. On the treadmill I’ve gone from 4.5 angle to 5.0 and for speed we can do 1.7 so cool but I do have this guilty feeling about leaving my air tank behind. I’m walking a little more then a half mile on my days there. Lungs are fine. I’ll return to Ann Arbor in March so I shall return. Thanks for all that read this take care and take one step at a time.
ronnei

cub1650
posted 14 January 2011 - 05:04 PM

Well life is just peachy at least in the breathing department but in the joint department we lose. I’ve put on hold doing my walking or anything with ankle movement. Looks like my joint is failing. No doctor until Jan 26 so my port is back in - what fun. I’ll still be active but be careful until we find out what’s going on u all have a great day.
Ronnei

Eileen/MA
posted 14 January 2011 - 05:54 PM

I'm sorry to hear about this setback, Ronnei. Good luck finding the source of the problem and the solution to it! I love your can-do attitude!!

 


2/28/11

cub1650
posted 20 February 2011 - 01:39 PM

Well got to ride in a red flashing vehicle. I’m in the Hospital with a nasty virus going thru my blood. My port got infected-this one lasted the longest - over 3 years so there pumping me full of antibiotics. I go for testing on my heart and lungs tomorrow. The levels on my heart changed so there checking for blood clots and any other neat things.

Eileen/MA
posted 20 February 2011 - 03:28 PM

I'm so sorry to hear this! Fight with all you've got and know we're praying for you!!! Hang in there.

cub1650
posted 20 February 2011 - 07:13 PM

Been up walking. I’ll always fight. My 02 at sitting now is 97% should be 99%. went for a walk. that was tough. Lowest I got was 90. Good thing I know how to breathe. The updates will continue.

Peg
posted 20 February 2011 - 11:41 PM

You are a strong fighter, Ronnei, so keep on fighting!
Keep us posted on your progress.
Hugs and prayers,
Peg

Ken-FL
posted 21 February 2011 - 09:11 AM

Ronnei,
Have been thinking about you and wondering how you were doing. Am sorry you are struggling at the moment. Keep fighting and keep your spirit strong, you have many of us praying for a quick recovery.
Ken

cub1650
posted 21 February 2011 - 09:19 AM

Going be moved off the ICU unit some time today. We are waiting for some labs they won’t be here till Weds. I’m doing well overall. With the port out the temps are down my body is doing well with the new drugs. I feel better then 2 days ago.
Loves ronnei

Tim
posted 21 February 2011 - 10:07 AM

Glad to hear that your improving Ronnie. Prayers sent your way....
Tim

Dee
posted 21 February 2011 - 01:25 PM

I'm sorry you're having problems, Ronnei, but I am very happy that you are feeling somewhat better today. You are a fighter, and I have no doubt you will back on top before you know it. Now, mind the doctor and be sure to get your rest.

cub1650
posted 22 February 2011 - 02:18 PM

2/22/11 saw doctors this is what I have Acinetobacter. Its a rare virus lives on the skin but once it gets in the body it starts colonies and starts having all kinds of fun so we will change antibiotics today again. Tomorrows plan is for me to get a pick line installed.... a pick line is a line put in a vein while you are asleep so that u can get drugs while home so tomorrow I’ll be getting one. The bad side of these are they ruin the veins - a port don’t. I should be going home tomorrow night.
thanks and love
me

Darrell
posted 22 February 2011 - 05:32 PM

Ronnei,
I've had several PICC lines and they do not ruin your veins. Also they are easy to put in with just a little novacaine. They can put it in at bedside in a few minutes and then as soon as they confirm the location by x-ray you are ready to use the line. They can be left in from a couple of weeks to a couple of months depending on what you need. My understanding is that they are less likely to get infected than a port. Good luck, I hope they find the right antibiotic and it stops this bug in it's tracks.
Darrell

Peg
posted 22 February 2011 - 06:48 PM

Good luck Ronnei. Hope they get you on the right antibiotic immediately and it starts attacking those viruses in your system. Just tell them where to go! Attack! Attack!
Looking forward to seeing you back at rehab soon. BJ is all alone, with 4 of us away in sun-country, another out with a bad back, and yet another down with an infection of some sort. Makes missing Jane that much worse! So get over this and we will be heading home soon...we'll get our group back up and functioning! Can't do it without you! Get well!!!
Hugs,
Peg

cub1650
posted 23 February 2011 - 10:02 AM

Ok back to today’s adventure. Be bored until 3.00 then go get my new pic line in then my 2 favorite words discharge and home. What a feeling. Will be doing antibiotics 3xday for 3 weeks but I’ll be home - so sweet. I’ll see about stopping in at rehab.
loves all. I’ll be back
ronnei

Eileen/MA
posted 23 February 2011 - 02:46 PM

Way to go!!! I'm sure you'll enjoy getting back home!! Take care!

cub1650
posted 23 February 2011 - 08:36 PM

The sweetest words for today are DISCHARGE and home sweet home.
loves ronnei

 


Ann Arbor my 2nd home - First breathing tests since surgery

cub1650
posted 09 March 2011 - 08:14 PM

Welcome to the very foggy Ann Arbor. Its nice here compared to the last time we were here. it seems strange not bringing so many things. it also is strange looking back to before to where I am now and knowing we are here for tomorrow. This will be the first glass cabinet [complete pulmonary function test] and 6 minute walk since before surgery. I’m really excited to see how this goes. I’m overall feeling so good about all things. its nice to do the things I had to stop. Tonight is also the last night of this antibiotic then Friday we go get blood tests then next week we go see the surgeon and start the process of putting the port back in. Well I’ll post the numbers as soon as I get them.
loves ronnei

cub1650
posted 10 March 2011 - 09:00 PM

Well today was very exciting. Here’s my results
FEV was 46% before surgery - now is 83%.
FEV1 was 28% now 45%
Diffusion last year 36%, this year 49%
6 minute walk now no lower then 91% no higher then 97%. Last year I went down to 86%.
The air left in my lungs after I blew out all I could was 309%, now it is 118% that’s a lot better.
The doctors were very happy with my results and so am I. thanks to one and all.
loves ronnei

Dee
posted 11 March 2011 - 12:34 PM

Great news! I am so happy that everything worked out so well for you, ronnei.

Ken
posted 11 March 2011 - 04:07 PM

That's great!!!!!!!!!!!!!!!!!!!!!
I am very happy for you.
Ken

cub1650
posted 11 March 2011 - 04:32 PM

Thank-you I was very surprised I did that well. that 6 minute walk brought back lots of breathing memories and I’m glad I did this yes its had a few bumps but worth all of them.
ronnei

Peg
posted 12 March 2011 - 12:33 AM
Great news, Ronnei! I am assuming your numbers are without supplemental oxygen?
You are such a trooper!
Smiles 
Peg

cub1650
posted 12 March 2011 - 08:36 AM

Yup no extra air this was great news.
loves ronnei

Peg
posted 12 March 2011 - 10:20 AM

That's really exciting news...
We are all proud of you for going through with this surgery, and excited to read about your marvelous results!
Smiles 
Peg

Darrell
posted 12 March 2011 - 10:25 AM

Ronnei,
We're all very happy for you, it's so seldom that we see such an incredible improvement in any of us. I guess it gives you a whole new appreciation of being able to breathe well.
Darrell

 

cub1650
posted 12 March 2011 - 03:03 PM

It seems so strange not having the issues and the ones I have are minor. Nice 02. I’m just so proud of myself and all my support team friends and my caretaker and the cats. I’m glad that I kept all my tests and that I kept notes. Darrell are u the one with a PIC line? I found these cool covers so that I can still have a shower keeps my line dry. You all have a nice day.
ronnei
spring is near

Darrell
posted 12 March 2011 - 03:48 PM

Yes Ronnei I have a line in my arm. I just use the plastic sleeve that my newspaper comes in, put a rubber band above and below and off to the shower. Have you found a different kind of cover?
Darrell

cub1650
posted 12 March 2011 - 04:05 PM

I was at atu getting my PIC line changed and cleaned found this pamphlet called drypro. its a cover to keep the PIC line area dry so that u can take showers swim about anything. Cost I was told about 25.00 so I contacted my supplier of pik supplies and asked about this I was told they didn’t carry that but did carry this other type thing that would do the same thing - was called aquaguard. this looks like a super cover for my pik. it has what looks like super tape on it I’ll know tonight but just by calling the supplier can find cool things. thought I’d send u the info
ronnei

cub1650
posted 14 March 2011 - 09:00 PM

First Darrell if you would like to try the aquaguard let me know I’ve got more then I can use. ok went in last Thursday for my bandage change. I also got my blood culture done. They called today here’s the results after 24 hours I was negative. after 48 hours I was negative. and 72 will be the same sooo that means new port going in Thursday morning. This is where I do the port dance.
loves u all
Ronnie

 


My update

cub1650
posted 15 May 2011 - 03:38 PM

Well its time to run my mouth and type. Its May 14, 2011 been in Frankenmuth since Thursday. I’ve been told that I need to get my log caught up so I will. Since surgery I’ve been doing well.
In December I made a decision that I needed to purge my life. I needed change and so far I have cleaned all tractors. Kept 4. The rest are gone. We hauled 6 loads of scrap out got both my chainsaws running got 3 trees cut up got my property all cleaned up. doing my exercises going on long walks. Overall I’m doing great.
Having my life back is so great doing the things that I enjoy. My daughter is graduation this month we have that party to get ready for. Then shes gone 9 weeks for the National Guard then Ferris college.
Now that I’ve bragged lol I’ll continue. I’ve had great breathing times.  there are major differences from then to now I can do things. I’m not out of air unless I get sick then I am. I have noticed heavy breathing at times for no reason with no labor on my body. been having more bleeds and more joint issues.
The trip to Frankenmuth was the real test for walking and we walked over 4 hrs. I did so well my next day I was back down not because of the COPD but a bleed in my ankle so we got to go to Saginaw hospital to get my port access so instead of sitting around I found a place that rented scooters and off I went. shopped the other 3 days. Never let things hold u back.

Peg

posted 15 May 2011 - 11:11 PM

Thanks for the update. You seem to be doing so well...especially for someone with all of your "other" issues.
You are a real inspiration and a real trooper! Stay well so you can enjoy all the graduation stuff and send her away not worried about you!
Smiles  
Peg

Ken-FL
posted 16 May 2011 - 07:49 AM

Cub,
Your progress has been remarkable and your journey is an inspiration.
Congrats and keep on keepin on!
Ken

 

Darrell
posted 16 May 2011 - 10:42 AM

Ronnei,
Great to hear that you are doing so much better and that your breathing isn't holding you back these days. You've worked hard and taken the risks to get better and now you deserve many years of improved breathing. Enjoy it completely.
Darrell

 

Dee
posted 16 May 2011 - 10:47 AM

You sound as though you have a new life going, ronnei, and there doesn't seem to be much that you will let slow you down. You went through a lot to get to this point, and you deserve to enjoy every moment. I'm wishing you continued easy breathing, and happy days ahead.

 

cub1650
posted 16 May 2011 - 09:30 PM

We all take so many things for granted breathing is one of them. When the doctors said that I’d have most of my life back I wasn't even thinking a normal life well at least normal for me. I’m about six months since surgery and the difference is so sweet. I protect these lungs against all the bad air as much as I can but I stay moving.
My next surgery will be November I’ve got a joint that needs to be replaced. I have love and care for all on this list.  I read this daily so I’ll work harder to keep my update updated.
love ya all
ronnei

cub1650
posted 05 June 2011 - 08:31 AM

Hi just thought you may wanna know my back has gone south. I’ve got 2 bulging discs. Just thought you may wanna know. dont look like I’ll be in rehab this month. I’ll check in offen since I can’t walk.
You all take care
loves ronnei

 

Peg
posted 05 June 2011 - 11:11 AM

Hi Ronnei - you haven't told us what you did to set off those bulging discs.
Hi to Annie - I enjoyed meeting her.
Smiles, 
Peg

 

cub1650
posted 05 June 2011 - 12:13 PM

Annie really enjoyed meeting you all. All I did was picked up a 7 pound box to set this all off. I have a appt on the 13 of this month to see if we can fix this. Heres how this all happened back in 1992. I had a bulged disc they fixed it so life was good in 2008. I fell 12 foot off a ladder. boy that floor was hard and no the ladder wasn't hurt. I fractured 2 upper disks and it re-broke my lower disk. I was told that the lower wasn’t fixable until my legs went to sleep. well my legs are not asleep but the disks are touching the nerves and the pain is not bearable and all I did was picked up a 7 pound box.
so love to all I’ll keep u updated
ronnei

 


My Update 2

cub1650
posted 13 June 2011 - 08:39 PM

Was at the back surgeon today he wants to re look at all cat scans and MRI before we find the right plan of attack. got better pain control with a patch and another med. what a cocktail lol. At least I can walk straight upright - thats a plus lol.
loves ronnei

 

sandy 47
posted 23 June 2011 - 08:37 PM

HI Ronnie, glad the COPD is so much better. Sorry to hear about the bleeds. I wrote you a few months ago that I was being evaluated for the LVRS. But haven't keep up with you. Sorry about that.
I went in January for a series of tests, went back in March for more tests and to talk to the surgeon. He said I was an excellant candidate for the surgery but I had to lose 20 lb, and my FEV1 was at 20, which was as low as it could go for the surgery. Gave me an appointment for June and said if I lost 10 lbs we'd talk about the surgery. Well when I went in I had lost 9 lbs but my FEV1 had dropped to 17.8. So he talked for a few min about the surgery, told me to come back in 3 months and see what was happening. Didn't feel like I was having a bad day. I've been having a bad spring due to the weather here. Almost constant rain, humidity pollen etc.
The day I was at the clinic I felt really better then I had for awhile, Probably not going to qualify for the surgery, but more important to me is the rapid loss of the little functioning I have left. My pulmonary guy is at a loss as to what caused it. Right now I'm on a z-pac and pred taper. Went to rehab this morning and was having a bad time the RTT listened to my chest and called my doc and got me an appointment within the hour. Not feeling that bad. But I have some rattles and the Doc says I have no room for any kind of trouble in there at all. Well that’s what has been going on with me, I have been keeping a journal as you suggested. Thanks for your encouragement.
Sandy

 

cub1650
Posted 26 June 2011 - 02:31 PM

hi I was just about ready to write you to see how you where doing at least he said that you were a candidate that's good. I’ll keep you in my thoughts. I hope the other issues work out your doing well keep me posted loves

cub1650
posted 14 July 2011 - 06:51 PM

looks like a good place for my update this week has been full. shots for my back which the first one really helped but the 2 one was very painful and the pain is still with me. we left for Ann Arbor last night. appts were for this morning got to do the 6 minute walk with and without o2 heres some of the findings.
6 minute walk without 02 - never dropped under 94-93.
6 minute walk with o2... never dropped under 95-94.
bet you are wondering why test with the 02. reason is I’m in a 02 study so they have to test both ways these are some very cool findings.
All doctors are very happy with all results which means I’m doing very well they also know that I’m planning surgery for November I’m getting a replacement elbow.
being able to walk thru that hospital with no 02 and no breaks in my walking is so cool. to know how it was and how I’m doing now is so cool.
loves all
ronnei

 

Ken-FL
posted 15 July 2011 - 08:09 AM

Thanks for the wonderful report. We are so very happy for you.
Ken-FL

 

Neva
posted 15 July 2011 - 07:30 PM

Ronnie I'm so happy for you. Breathe well my friend! Thanks so much for posting your experiences with this. 
Take Extra Good Care,
Neva

 

Darrell
posted 15 July 2011 - 09:09 PM

Ronnei incredibly good news about your 6 minute results, hope your as fortunate with the back and elbow issues.
Darrell

 

Peg
posted 16 July 2011 - 12:53 AM

Ronnei, thanks for posting your results. I am so happy for you with your lung progress...now if you could speed up your other issues to match, you'd be a whole new man! Watch out world!!!!

Congratulations...you went through a lot to get to where you are now.
Smiles,
Peg

 

cub1650
posted 18 July 2011 - 06:34 PM

do you all realize that to day is my birthday this was not the same hohum b day either. heres what I’m talking about last year I was on 02 almost 24/7 had a lot of bad days too but I pushed on was doing the testing for a lung volume surgery. on 11/15/10 we had that surgery. this year I’m 51 still vintage and my breathing is so much better. the long walks I can do. the things I can get done and the biggest thing is having you all as my friends.
thanks to you all
love ya
ronnei

 


New workout for my new lungs

cub1650
posted 17 August 2011 - 05:55 PM

Hi all. This week we left for a 15 hour drive down to Oklahoma to see my dear child graduate from basic then bring her home. I had my concerns about breathing with my new lungs as you know I do protect them. I brought my 3 portables just in case. we just got here 3 hours ago its a nice 106 degrees yes that is right temp - and my breathing is so sweet. no issues so far we have 2 whole days here. I just had to share I get to see her tomorrow and see what she has been up to.
loves and hugs
ronnei

 

Peg
posted 17 August 2011 - 07:27 PM

It's wonderful that your "rebuilt" lungs are working so well! Thanks for sharing that news.
Enjoy Courtney's moments in the sun - can't top the pride we feel for our children and their accomplishments....don't burst at the seams, Daddy...just enjoy.
Smiles
Peg

 

Ken-FL
posted 18 August 2011 - 10:16 AM

Cub,
We are very happy for your great outcomes. Enjoy your trip and the Pride you have in your daughters completion of Basic.
Ken

 


New Day, New Journey

cub1650
posted 15 November 2011 - 10:19 AM

Hi one and all. Today is the 15th maybe nothing special to some but its been a year since my surgery. Can you believe it?  Seems like yesterday. my breathing is grand so I’m going continue on my journey. This Thursday morning I go have surgery again this time an elbow replacement. If it wasn’t for my LVRS I couldn’t do this next surgery.
you all have a grand day
love n hugs
ronnei

 

Dee

Posted 15 November 2011 - 03:28 PM

You're right, ronnei. It sure doesn't seem like it has been a year already. I'm happy that you continue to do so well. Go ahead and celebrate your new journey, you deserve it. 
I hope your upcoming surgery is just as successful.
You take care and try to stop by and say hello more often.

 

Peg
posted 15 November 2011 - 04:03 PM

Doesn't seem like a whole year to me. To you and Annie it probably feels like a whole new life.
Good luck with this one, too.
Smiles
Peg

teddy bear

 


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