Diary of a Lung Volume Reduction
Richard B. Young
July 19, 1999
This is for Phyllis, Barbara, and Peggy too! Just a word of thanks for the support so far regarding my lvrs scheduled for the 31st of Aug. I will begin cardiac rehab the 23rd of July and go to St. Louis the 22nd of Aug. for I wk of rehab at Barnes Jewish. Dr. Cooper will cut the 31st.
I will appreciate any comments from any of you as I keep you updated and tell me if I am doing anything wrong. Especially if you can suggest any way to get HMO or Medicare to pay or at least help. Thanks again Richard
July 21, 1999
Just talked to my HMO--as a result of the article in the spring issue of Breathe Well, stating that the American Thoracic Society now classifies lvrs as no longer experimental , they have consented to reopen my coverage. If any of you are having the same problem with accountants, don't give up!
*Wednesday, August 18, 1999. 4:00 p.m., scheduled to have LVRS September 13, 1999. Scheduled to have second heart
catheter is two months (the first resulted in a stint and the blessing of having rehab paid for because I now have a respectable disease, coronary), HMO still refusing to talk to me about my appeal. Hear
catheter scheduled for Friday, August
20, at 6: a.m.
*The world has changed! A phone call at 4:21 p.m. from HMO agreeing to PAY for LVRS. Will wonders never cease?
* Spent all day today with two youngest kids. One home from his church work in Colorado the other moving into the dorm for her first year in college. After five, I think the "Empty nest" syndrome may be almost as bad as the "empty lung" syndrome.
* Got home from the University at 8:30 p.m. and had call on answer machine that the cardio who was scheduled to do my catheter, not registered with HMO (Oh, I hate bureaucracy).
Cardio had done a chemical stress test after the stint two months before and decided that another catheter not needed. Dr. Cooper's office at Barnes Jewish wants another heart catch. Makes more sense to have it done here and now in case right side of heart failing than to go on to St. Louis and then be turned down. Since cath postponed, will go on to rehab until settled.
For those of you who read the first part of the LVRS Odyssey, this will make sense (I hope, I sometimes wonder if I'll ever be able to write logically again). For those of you who haven't seen the first part, Gary is going to include the complete Odyssey on the Web Page. More in a day or two
Some of you are aware that in order for Dr Cooper to perform LVRS he is insisting on another heart cath for me since the last one resulted in angioplasty/stint. It is scheduled for 1:00 today.
Some of you also have been discussing ankle swelling and the possibility of right heart failure. That is exactly what he is concerned about.
Here's hoping that ankle swelling doesn't necessarily mean right heart failure.
I will holler back at ya'll about 7 or 8 tonight and let you know if I continue my odyssey toward the 13th.
Richard B Young--Ar me
dadgummit! I had finished through #18 when I COPD'd. So, I'll just start over and try to remember what I had said. For those of you who wonder what's with me, this is a continuation of the odyssey I am experiencing on the way to LVRS the 13th of Sept at Barnes-Jewish in St. Louis. Gary will put a condensation on our web after the surgery in hopes that something will help one of our members or future members.
Doug Clark's helped me more than anyone will ever know.
14) received confirmation from HMO that I was approved for out of network procedure at Barnes. They realized in July that they were secondary now to Medicare under federal law because of the number of employees in our group. What they don't realize is that when they get the balance they have to pay back from Mediquack, that Mediquack doesn't pay any thing.
15) Rescheduled for heart cath on Monday Aug 30th. Don't know the results yet (Thursday Sept 2 at 2:30 p.m.)
16) Am doing 1 mile on the treadmill at 2.3 to 2.5 mph and doing it in
26+ minutes. Going to cardiac rehab three times a week (cardiac rehab is paid for and pulmonary is not). Will continue to go to rehab three days a week for the rest of my life. Have found a used treadmill for $100.00 and use it at home 3 days a week. 38 min when I started 16 times ago.
17) Lowest priced accommodation we had found before Sunday night for the
9 days pre-op was $45.00. Now have found a 1 year old facility with kitchen at the airport for $28.43 a night + taxes if staying a week ($39.00 + tax nightly) Only 13.6 miles from Barnes and there is a shuttle service if I want to use it.
18) At 5:14 got call from Barnes. Claudia has negotiated a package price with HMO. That reduces my 20% figure considerably. (originally about $6000.00, my part). Gail (Dr Cooper's nurse) finally got my heart cath results from Monday. Will let me know tomorrow if I still qualify.
14thru 18 written Thursday Sept 2, 1999 Although I wanted to send the news that I had passed the heart cath and do not have right side heart failure as my pulmo said, I am not going to risk losing this again. Will let ya'll know more when I know.
Richard B Young--Ar
Pat, I was going to answer this in one of my "steps" to LVRS tonight in St. Louis, but, as I can't sleep, I'll answer it at 6:11 a.m. By steps, I have been sending in segments the things that have occurred as I made preparation for my surgery. I will have LVRS on the 13th, and my wife plans to be able to tell all of you that night that I went thru great.
The best advice that I can give anyone is to go to the web page and read all the info there and the reports of those who have already had the surgery and the good results reported. I also encourage all of those, you won't believe the number, who have expressed their prayers for me to do so for you and I will remember you after I wake up and thank HIM.
Good luck. Read http://www.emphysema.net/mmedinfo.html Richard B Young--Ar
Wednesday, 9/8/99 I really had trouble trying to do the phase 4 last night. I am going to try to be a little more cogent (that's an Arkie word for nice guy) this morning. You will need to read the message below before you start reading this one. I did get that much off to my family.
20) (Homestead Village is the only place for long term stay if they are all like this and I'm not spamming)
23) The following are the requirements for LVRS at Barnes:
1/ on no more than 10 mg "pregnant " zone before surgery. Prednisone impairs healing
2/ no aspirin or aspirin products two weeks before surgery
3/ no antibiotics 3 weeks before.
4/ can get flu shot two weeks before
5/ pulmonary rehab at home 6 weeks before
6/ bring 1 mo supply of all medications
7/ meet goal of ambulating ( I'm going to walk instead of riding in an ambulance)
on treadmill for 30 min
8/ plan on 4 weeks--1 prior, 2 hospital stay--1 outpatient (please plan to have a support person with you)
Saturday Sept 11, 1999--the fifth phase of being able to breathe again.
26) Had second thoughts starting about 4:30 a.m. Friday morning. Also had bad a bad breathing day.
27) Met with Pulmonologist. 5% chance of fatality, 15% not be any better for longer than year if at all. Stated I am a very good candidate. 80% are now better after five years.
28) Met three others who had LVRS. Two were doing outstanding, third said he would do it again.
29) Met again with Kathy Brown, pulmon's nurse, about follow research
30) Had very rough night Friday night. Hit the puter this morning and Gary Leach fixed me a cup of coffee with honey in it. The cup is half full again.
31) 10:00 a.m. tomorrow for final testing and conferencing.
The following is what I can expect to happen Monday: Surgery 1-1/2 to 3 hours. Will do one lung or two depending how it goes ( I have had by-pass). Will be placed in observation unit for 2-5 days. Family can visit once placed in Observation room. Average hospital stay is two weeks. Must stay in St. Louis One week outpatient after discharge. If appointment with pulmon, 6 min walk and chest x-ray ok can go home.
Expect 6-8 weeks to recover from surgery. may take three to six months to see results.
Remember I still have emphysema so very important to follow prescribed exercise and medical plan.
My wife, Trisha, will let ya'll know how I did in Surgery sometime Mon night. You will never know how much your prayers and encouragement have meant to me in taking this immense step. Thanks, again.
Richard B Young--Ar Go Hogs!
Good News -Bad News.
The surgery is complete and there was a good report on ONE lung. But, due to the scare tissue from Richard's open heart surgery it was a prolonged process that did not leave sufficient time to do the second lung. They began at 9:30 and are still closing as I speak at 12:30.
They scoped the second lung and found the same scare tissue surrounding it.
I have not talked to the doctor but his surgical nurse has briefed me.
Dr Cooper was in favor of doing both lungs if he did not get detained by scare tissue. It took him a long time to free the lung for removal. Dr Cooper has invented a special process for closing the lung that helps prevent leakage but a third stage of that process (the pleura) was damaged somewhat by the interference of the scare tissue but they are still optimistic about an uncomplicated recovery. Please pray to that end.
Richard's vitals remained very good during surgery. He did very well in every other respect outside of the scare tissue. The lung tissue that remains in the operated on lung looks very good according to the nurse.
Even though I am disappointed that we do not have the whole process behind us I have to believe that with all the prayer that has been offered on his behalf that one lung was in God's plan for reasons we do not know yet.
I may know more after talking to the surgeon.
Praise God for His faithfulness to protect during surgery.
Trisha Later in evening: Sorry I had a difficult time finding a phone jack at the hospital that would accept my connection.
Dr Cooper said that he took out about 40% of the left lung (80% of the upper lobe). Richard said to tell you all that he has tremendous pain but that he would do it again. He really is in a great deal of pain, but they had to use the more painful entry site--side vs back or chest--due to his previous chest entry for heart. He has very little air leakage at this point. When they had his pain under control earlier he was already joking with the nurses. Barnes-Jewish continues to impress us with their expertise.
Thank you ALL for you prayers, support and encouragement. I'm not sure Richard could have hung in there had it not been for your support. I know he is anxious to return to you but he will be in an observation unit for 3 to 4 days before going to a room where he will have internet access. They plan to get him on a treadmill tomorrow! Continue to pray for his recovery, pain management and no air leakage. Thank you all for your words of encouragement sent to me as well. I am grateful.
Sept 15, 1999 9:25AM
I am only sending this to you for now until I know better if his progress is going to hold. The doctors staff has discovered "EFFORTS" so they are reading my notes also--want to be accurate.
Richard is doing very well as far as no complications and very little leakage but his pain management has been a trick. Pain specialist have consulted with him several times. He has an epidural (sp?) with a numbing agent, he had morphine in a PCA pump which they changed to toradol last night because of nausea, and ibuprophen type suppositories.
He is in good spirits until his body starts having tremors from the pain.
He sat up for a long time yesterday and even walked a good distance.
The doctor said he has extra pain from all the scar tissue he had to work through. He also has two chest tubes for air drainage which are uncomfortable, not to mention the incision. Even with all of that the doc is pleased and talking about letting Richard out of the hospital by Fri or Sat if he continues to do well. We will have to stay in town for a week after discharge. I will know better today if that "new and improved schedule" is going to hold before I tell "EFFORTS". I let Richard read his e-mails yesterday. The nurse was relieved to know that the computer was for pleasure and not that he had brought his work to the hospital!!! He wanted to type in a note but got nauseous before he could. He may do that today.
Hi Ya'll (as you can by my Arky irony, I,m at least back in the land of the living)
I'm still too tired to say any more than hello, but wqnted you to know that I'm finally on the way back. Right now, am waiting for the drain tube to come out, the pneumonia to be beat and a week of out patient before being ready to go back to Ar. The LVRS is progressing very satisfactory so hope the complications clear up and go away Ya'll never know what you prayers and support have meant as I have developed hospital psychosis. Thank God for friends like you, my Christian brothers and the most wonderful wife I could wish for. Give me three or four days and I'll send you more.
Richard B Young--Ar
September 23, 1999 10:05 PM
WHEN A TELEVISION HAS A GAME ON IT THAT SUDDENLY THE DRUGS YOU ARE BEING GIVEN TURNS IT INTO A PEOPLE EATING MONSTER, WHEN EVERY TIME YOU CLOSE YOUR EYES FOR THE NEXT 3 DAYS YOU SEE ONLY NEGATIVE IMAGES AND HAVE TO HAVE SOMEONE YOU LOVE THERE TO SIMPLY LAY THEIR HAND ON YOU IN ORDER FOR YOU TO RETAIN YOUR SANITY.
Believe me it is real. I will never believe that the tv in the observation unit did not suddenly turn into a people eating monster. All of the things that I saw with my eyes closed were real and the things I saw with my eyes open were warped and distorted.
But, I'm back ya'll. It's 8:45 Thursday night and I am not at Barnes Jewish, I am at the studio. I have a drain tube and can not go "home"
home until it quits leaking. I also have a hemotoma as big as half a grapefruit that hurts, and will have a week of rehab. I feel great ! I am back on line and will be 'watching" all of you in your antics.
Richard B Young--Ar PS Hospital Psychosis happens to some people when hospitalized and receiving intensive treatment the "over" stimulation, tubes, monitors, narcotics, confined space, no window, no concept of night or day and prolonged loss of "sound" sleep causes them to no longer be able to rationally process what is happening to them. Everything becomes a negative--even a threat to their life--in their minds. Discontinued use of some of the pain meds and a WINDOW to the outside world helped Richard a lot but nothing helped like walking out the front door of the hospital.
He became a different person upon discharge--HIMSELF.
Thank you all for caring, Trisha
October 3, 1999
Semi-conclusion. Sunday October 3, 1999.. Everything from the 23 of Sept is anti-climactic but here is the semi -conclusion to my LVRS odyssey.
The drain tube was removed Thursday, We were checked out on Friday Morning and returned to Arkansas Friday October 1.
At this time I have had 40% of one lung removed and the remainder looked better in surgery than the x-rays had indicated according to the docs. I feel that when I return for my 6 weeks checkup on the 15 of November that I will schedule the surgery for the other lung at that time despite the fact that the surgery had complications. I feel that these were out of the docs hands and will not necessarily occur again.
At this time it is too soon to tell if the surgery has helped or not because I am having to recover from the fever and loss of blood and the docs told me to expect no improvement for six weeks. I will keep the group (EFFORTS) informed through e-mail and will be as honest as I can be. Thanks again for all your prayers.
Richard B Young--Ar
October 11, 1999
One month ago today, I had 40% of the top of my left lung removed. I had a comparatively rough time of the surgery and still have enough pain that it awakens me about every three to four hours. Today I walked 30 min on the treadmill at up to 2.7mph, one mile in 26 min, highest heart rate was 120, lowest sat was 94 WITHOUT O2. Just two months ago it took me 38 minutes to walk a mile. Just three weeks ago I was walking 1.0 mph with 3 L O2. Has only one lung LVRS helped me this much? If so I just hope that the EVIL money crunchers that are behind NETT will roast you know where. I am almost at the point of losing it, so if I'm not being politically correct please forgive me.
Richard B Young--Ar
October 20, 1999
Walked 2.0 mph for thirty min today with no O2. First time with O2 since last Sat. Prior to that (Sat) I had not used O2 for 8 days. Had flu shot Thur. Any relationship? Richard B Young--Ar
Jan18, 2000. Saw my last doc appointment before going to St. Louis the
30th. I saw my lung on the xray today and guess what. It has totally moved into the area which was removed just over 4 months ago.
Results of spirometer today, although they will never be good, showed marked improvement. Prior to surgery I retained 254% of expected air retention--after surgery, 150%. Prior to surgery my FEV1 was 28% of expected--today it is 41%. My FEV1 never reached above .85--today is was
1.43. As I said not good, but better than before surgery. And that is with only one lung so far.
Doc told me to try no inhalers, no nebulizers (up draft) with the exception of Serevent Discus at night and see how I fared. That is going to be an interesting experiment.
This is the beginning of the final Odyssey to see if LVRS (Lung Volume Reduction Surgery) will be effective for me. At this point, I am very enthusiastic. I only wish that a cure for the disease could be found so that we all could breathe again.
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