Just an update in case that something happens and I don't get around to posting it here on the page. I received a phone call from the Natinal Jewish Medical Researchy Center and was informed that Midicare and the other governing agency says there is a new proceedure out and they want to delay the start up of my participation until sometime in October. I explained to the lady I talked to that I had already purchased my plane ticket and made all the arrangements to be there on the appointed date. She will talk to the "powers that be" and will call me back tomorrow about it. She will be trying to get me out there so I do not have to change the plane reservations and/or lose the money I have alreacy spent on getting the tickets.. I already have the ticket sitting here looking at me...
Oh well, so much for something run by the government. But maybe a better prodeedure will come of it and I willl be benefited by it in the end.. I will just have to go along with them whatever the decision... Will let everyone know when I know more..
I thank you and God bless...
Well, Friday passed and with a bunch of phone calls out to Denver and talking with the coordinator of the program, they rescheduled me for the 9th of July being I have already gotten all the plane tickets, everything is scheduled to be turned off until I get back home. The phone will be on vacation status which is much cheaper than cutting it completely off and paying a bundle to get it turned back on with another number. Same way with the apartment, I have to pay the monthly rent even to I will not be here, but again, cheaper than moving out and moving back in sometime later.. All is really a matter of logistics.
Sorry I did not post the good news yesterday, but I was so involved with other things tht I completely forgot to. Guess you can say I had a busy day. Thanks to all of you who were concerned and sent me e-mails about it.. If you care to send me e-mail from her plese do so before the 7th of July as of then I will not get them until I return from Denver.
Well it is Saturday night here in Denver and I am over at Oranda's house using her computer to update this page. he trip here was pure misery as It took right at 6 hours to make the usual 3 and 1/2 hour flight due to lightning strikes around the Tampa Airport.
The people at the National Jewish Medical Research Center are about the nicest bunch of people I have ever met. So far not a single one has been out of line or rude in any way towards me or anyone else that I have seen. They are a real dedicated bunch of folks and I am proud to have them working and pulling for me.
I have been undergoing a series of tests each day and so far I have passed each one of them with flying colors. My lung functions have checked out at around the 18% mark, and I was able to walk for 924 feet the first time I did the 6 minute walk. The next time I did it, I was having a bad day and could only walk a distance of 880 feet in the six minutes. Bud tht was plenty to qualify for the distance as it is only required that we be able to was around 528 feet so I passed without a problem.
This week coming up I am scheduled for some heart tests at the University Hospital and they are the last ones I will have to pass befire I will know if I am approved to the Study. Wish Me Luck.
I will be staying with Oranda and her husband for a while and will be able to get on the chat channel from here so look for me there and I will explain more there.
Well, it is Monday evening July 20, and I have only been back from the hospital about an hour and a half. Spent a long time down at the University Hospital having pictures taken of my heart and letting them run a stress test on it. The used a chemical to speed up my heart to around 135 beats a minute and watched to see if it acted funny. Had a Cardiologist right there in case something went wrong while it was going on.
They also shot some dye into the heart to make bad spots show up and I had to lie still for close to a half hour while the pictures were taken.... Will have to go back tomorrow and they will again take some more pictures, but that time I will not have to undergo the stress test first.
I did not feel bad at all while those tests were going on, and I don't think they found anything wrong with the heart. at least I didn't feel anything strange, I sometimes let the heart rate get up to 130 while I am walking my treadmill, just as long as I keep enough oxygen going to my lungs to handle it. Doesn't take long for my regular heartbeat to return to the normal 86 beats once I sit down and start to use the good breathing techniques that I have been taught.
Nothing more for this report, except that I did get around a bit easier today and did not get quite as breathless as usual.. Guess I must be getting used to the thin air here. It is another hot one here today tho... must have just about reached 100 again. Be glad when the heat wave is over.
Sitting around and waiting for time to go to the University Hospital this afternoon so I thought I would update things. I have to go in again today for some more heart test. They will look at my heart today without having put me thru the stress part of it first; that will make it a lot easier on me than yesterday. I was totally worn out when I got back and had to go to bed early to rest up for today.
After the test is run today I will still have the heart catherization test to be run on me. They will be checking my pulmonary arteries to see if I have any blockages and all that stuff so they will know if there is anything to keep the operation from working on me. That should be the last of the tests and I will know if I am to be accepted into the study. I must be able to get and withstand the surgery to be elgible for the study, even if I am not selected to be one of the ones who do get it. I will just have to put my trust in God that I will be one of those who get the surgery and He will see me thru it. All your prayers are certainly going to be needed in the next few days.
If anything interesting occurs today, I will add to this update this afternoon when I return home; if I am not so worn out again that all I want to do is go to bed and stay there like I did last night. Just maybe after this I will find out if I am going to be able to return to Florida and do my rehabilitation there and return here if I am to get the surgery. I would feel much better being in my own place even tho I do enjoy the company of Oranda and her husband. They are both very fine people and very thoughtful. I do thank God they have welcomed me into their home like they have,
Had an early morning appointment at the National Jewish Medical Research Center where they did another cat scan of my lungs. Seems like there is a small spot they have decided that needs to be looked at a little closer. I was not told anything more than that. This time they used a dye that will make the spot stand out more and they can make up their minds on what it is. You know that at this time I am plenty worried about it. I will just have to keep my trust in God that I will be taken care of and He wil see me through this as well. Maybe is is nothing to be concerned about at all and if so I will not think of worrying about it until someone tells me differently. Tomorrow, Thursday is an off day for me and the hospitals. I will stay up late tonight and sleep late in the morning. Friday morning I have to go back to the Univeristy Hospital where they will run a heart catherization and the final exam of my heart. After that all the testing will be done and only the rehab, or the surgery remains to be found out. It is a little ironic tho.. To pass some of the tests I have to be sick enough to need the surgery done, and then to get the surgery, I have to be well enough to live through it. So when I say that I passed a test, it sometimes means that I am sick enough that I passed it, and other times it means I am well enough to pass it. Oh well, what ever it takes to get me to feeling well enough to be able to breathe by myself again. Really that is all I am hoping for. I know I will never be running a foot race, but would like to play the part of the tortoise just one more time.
Well the good news first. They did the heart catherization yesterday and it was a very grueling day for me. But they did not find any evidence of blocked arteries in my heart, both sides of it are clear of blockages and it seem in good shape. That is good news for me as I was plenty worried about that.
The bad part is; they went into the artery at the groin instead of the shoulder because the cardiologist wanted to look at both sides of my heart as he had a suspicion that something might be wrong. Well, there was nothing wrong there and when they remover the cathater they could not use the new proceedure by putting a single stitch in the artery and letting me get up and go home in about an hour.. Instead I had to lie still for around five hours without moving my right leg to keep the hole from opening up.. That was pure misery to me... Then to make matters just a little worse on me; my ride was supposed to pick me up around 8 PM but at that time here in Denver they were having a lot of real bad thunderstorms and some street flooding so the peoson was afraid to drive down to the hospital to pick me up.. I was stuck there with the possibility of a 40 or 50 dollar taxi ride.
But as always, someone is looking after me, one of the people who was working in the recovery room was getting off work around 10:30 PM and offered me a ride to the door and I just sat back, relaxed and waited for him.. He brought me right to the door and refused to accept any payment. Told me that if I wanted to pay him back to just help someone else sometimes and pass it on... Come to find out; he attends the same kind of church that I attend down in Florida. No who says there is no kindness left in this world?
That is all of the major tests that I will have to undergo, and as far as I know right now I have passed that one. They did run a kind of stress test on my heart by having me do some exercise until I could no longer do it, and then the nurse helped me continue moving until they got the test done. I was given about a three or a five pound weight in each hand and with arms straight out, was told to bring my arms straight up center as long as I possibly could. Today I have some very sore muscles around my shoulder blades. Don't know very much about the results of that test as I would not understand the numbers they called out with the measurements that they took before and after the exercise. That will have to be explained to me when I meet with the doctor this coming Tuesday.
I have cancelled my return flight to Florida which was supposed to be Tuesday morning and have an open ticket until near the end of October. Maybe I will know if I am in the Study this coming Tuesday and if I am going to be allowed to return to my home and continue the rehabilitation part of the program there. They do have a place down there to do it, but I am not sure if it is near enough to me for me to be able to drive it the three times a week that will be required for the re-hab. I could very well be the same place where I have been going for the last two and a half years. Now wouldn't that just be wonderful? I will let everyone know just as soon as I know something more which will be this coming Tuesday afternoon here in Denver.
This afternoon I had an appointment to see the doctor in charge of my case and was supposed to get the results of all the testing they have been doing on my these last three weeks.
After agreeing to do six weeks of rehabilitation, and the being reassed to see if I still qualified for the Study; the doctor and I discussed the spot on my lungs that I informed everyone about on the 22nd of this month. I asked him if it was on the cat scan that was taken back down in Florida last year.. He left the room and came back a few minutes later and said that it was not on the one that was a little over a year old, so the spot is real new and should be looked into right away.
The decision was made to drop me from the "Study" and have the operation done to remove the spot as it is too deep to have a biopsy done and while they are in there doing the surgery, they will automatically do the lung volume reduction surgery as I need it done any way and Medicare will pay for it to be done.
So it really looks like the spot is a blessing in disguise as I will get the operation that I need and do not have to go thru the hassle of the "Study" . I will get the operation, have some time here to recouperate and be home before I could even be finished with the rehabilitation that was scheduled with me in the "Study"
This has happened real fast and right now I am all up tight and in a very tight state of mind.. We do not know if the spot it cancer and will not know until after it is removed. It could very will just be a scar from the pneumonia that I had last fall, or it could be something else, but in the opinion of the doctor it is to my advantage to go ahead and have it removed as quickly as possible. What concerns me is that my nephew passed away a couple of months ago from cancer and that is the only case of someone in my family having it that I am aware of.. I don't think I want to take any chances with it,, get it on and get it over with.
I hope each of you will say a little prayer for me and that will help me along the way... and to each of you let me say thanks and God Bless..
Had a meeting with the nurse Bonnie who is the assistant to Dr. Make. The Surgery on my lungs is scheduled for Tuesday afternoon August 4, 1998, It will take around 4 hours to do the comlete job and how long it will take me to come out from under that is not known at this time. Johanna will be there when I wake up and probably before that she may call someone to let them know what has happened and they may be on the chat channel inform those who are interested in what has happened.
I will be operated on in what is considered the number one facility for this kind of operation in the world and the doctor who will be doing it does an average of five a week, so he is not lacking in experience. I really have no fear of this at all,, but I wil admit I am a bit anxious to get it on with and done.
Well, quite a weird bunch of dreams last night as I must be getting over anxious about this operation that is coming up. Woke up in a near panic for no apparent reason but managed to pull myself out of it by the pursed lips breathing technique that I have learned and also by reciting the little phrase, "let go...let God" That really does work for me and I should rememver to do that more often than I do..
While I am in the hospital, and possibly the Skilled Care Facility I will be able to receive e-mail thru my friends account here in Colorado. Anyone wishing to e-mail me just send it to the address below and I will get it.. I plan on staying back here until I am well enough to go back to Florida and that might be a couple of months from now. I really am thinking along the lines of the middle of September.
As I approach the time of the operation, I keep reminding myself that I am here only because I was not strong enough to quit smoking many years ago, even tho I knew it was doing a number on my body. I "tried" many times to quit, and used every gimmic on the market to do so, only to fail in just a few days. It took something as drastic as lung failure for me to finally get the point. Now that I have been quit for over 2 1/2 years and I look back on how much time I wasted by not quitting it really saddens me sometimes.
I have taught myself to quit dwelling in the past. To look forward to the much brighter future that awaits me after this operation, and the day I finally come off oxygen and can breathe without the hose in my nose will be a day of celebration. Life will still have some pitfalls along the way for me, but I will overcome them and I want to pass on to each and everyone that you are also capable of winning the victory over the nicotine addiction. It will not be easy, but it is attainable. With just a bit of hard work, educating yourself on the ways and means of quitting, and the moral support you can get here on the internet from the stop smoking newsgroup, and the chat channels I believe that just about anyone can overcome this deadly addiction.
Give it a try and if you don't succeed the first time, no one has ever told me I did not have the right to try again. Take care and as I think this will be my last update before the operation, God Bless and may He take a real good liking to you..
Johanna here. Please bear with me everyone as this is my first shot at editing anything on a web page. Bud had his surgery at 3:45 this afternoon. Lasted 2 hours. All went well! Did not get to see him till 8:30 and he was very groggy still but vitals were good and the breathing tubes were out. The nodule was removed along with most of the upper left lobe of his lung. Pathology tests will take a few days but Dr. said preliminary tests point to no malignancy. Guess all your prayers worked! I will write again tomorrow after I see him.
Just returned from the hospital. They had our friend up and sitting next to his bed. All things are going wonderful. He is starting to eat today and even cracked a few jokes. The pain is more managable now as they gave him his own button to dose himself every 10 minutes as needed. He sends his love and thanks to all. Tomorrow I will try to have him dictate a little to me so I can put his own words here. Till then......
Visited twice today and saw an improvement tonight over this morning. He is missing the computer and wants to get back to all his friends out there A.S.A.P. Tomorrow he may be moved to a regular room and start some walking. He has enjoyed reading the e mails that I have been copying for him so keep em comin!
Bud asked me to tell everyone hi and thank you all for the prayers, cards and e-mails (and cookies , Reeses Peanut Butter Cups and Mounds Laurie, hehe ). They mean alot to him. I am doing these updates now but you will not see to much of me once he is back. He will have this pc full time till he gets his fill!!!!!!!!!!! To all of you that know Bud only through the puter...boy, what you are missing. He is even better in real life !!!!!!! All that he is going through and he keeps smilin. Already he has one of the nurses asking for his web page!! And his Dr. took a copy of his " THE ANATOMY OF A DAY WITH EMPHYSEMA" Way to go Bud!!!
Bud is in his own room today and progressing well. Best sign yet, he asked me to smuggle in ice cream!! Will keep you all posted.
Today they moved an stationary bike into Buds room so it looks like they are going to get him working real soon. Also may be moved to the rehab floor to get him ready to come home. Looks like maybe at the end of the week.
Tomorrow is the move to the rehab floor. They tired him out today with x rays and exercise. Dr. said probably for a week. Then a week or so here and back to Florida. He is getting homesick (probably likes his pc better than mine :) ) He has been enjoying all your e mails and cards. See you all later.
Well they have started crackin the whip today. Had Bud walk down the hall and start his excercise program. His shoulder is really hurting so they are looking to change his pain meds to help that. He said that most of the rehab nurses were nice but don't think he is ready to do much chasing yet. Laurie, he enjoyed a Mounds yesterday :)
Progress has slowed up a bit. Seems that the drainage tube was not draining enough. He was running a fever and lost a whole nights sleep. Today the fever was down but just a short walk into the hall and back was a real struggle. He seems weak and tired and slept for 4 hours while I was there. Hopefully tomorrow will show an improvement. Keep those prayers coming.
Not so good news tonight. Just spoke with the doctor and they are moving Bud back to Intensive Care. He has developed pneumonia. Was very groggy but as I was leaving he whispered to me " tell everyone that I love them and miss them". He never forgets all his friends. Guess those prayers are needed extra now.I will update this page as soon as I get back from the hospital tomorrow. Send those e mails to oranda@pipeline.com and I will be sure to get them to him.
Sure wish I could say he was up and feeling great but I guess that is going to take awhile. Not much change today but by being in ICU I think he is getting the extra attention he needs. The left lung has collapsed and they may try to reinflate it tonight. I will be back with more as soon as I hear anything. And thanks to all for your kind words.
Bud had emergency surgery today to remove fluids and infection from his left lung. He is in ICU and is still on a respirator. Hopefully we will hear shortly that he is off of it and breathing on his own. His brother and I will be calling the hospital and if anything new developes I will post again here tonight.
Not much new to report tonight . Bud is about the same. They are going to try and get him off the respirator tomorrow. He is sedated right now but I still pass all the news on to him as I feel he hears me just fine. I am amazed to see how full my mailbox is each night from all his friends. He really has helped so many.
Hip hip hurray!!!!!!!!! Bud is off the ventilator. What a wonderful sight for these eyes. He sat up in a chair for about 6 hours today and did breathing exercises too. He is really putting his all into this. He is not out of the woods yet but is showing alot of improvement. He wrote a few things today as his throat is too sore to talk yet. (and did I take advantage of that! hehe and can that man roll his eyes LOL ) I bet I am going to hear a sermon when he gets his voice back:( Thats ok, I can't wait to hear him. Well will see you all tomorrow.
PS he absolutly beams when I bring the e mail--and he will owe
Not too much improvement today but holding his own. He still has one hell of a fight infront of him so keep all those positive, encouraging and anything else you can think of e mails coming.Yesterday was hard on him so today was much slower Maybe with some rest tonight we will see improvement tomorrow.
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At 3:45 this morning Bud passed on. Overnight he had to be put back on the ventilator and then his heart gave out. While I was there yesterday he asked that his brother be called. His brother Les came down. We asked him to hang on for all of us that needed him but that was getting selfish as what he needed was peace. He was an organ donor and they will use his eyes and skin to help others as he has so many times in the past. My wish is to keep his web page going and need advice on how to do that. You will never know how happy all of your hundreds of letters and cards made him. I am so very grateful to have been able to share this time with him. I consider it a present. You have all been thanking him for all he has done for you but please realise that you all gave to him also. You gave him a purpose when others in his condition would have had nothing but dispare. We are who he struggled for. I don't know if many of you really knew his condition. He tried to let us think things were not that bad for him but it took him two stops sometimes to make it from the bedroom to the computer here. Even on the oxygen his everyday life was a struggle. He said he was still here because God had something for him to do. Well he sure did it and did it well. And now he has the peace he earned and so well deserves. Thank you all, and as his last words were to me, PRAISE GOD!