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| Friday, June 24, 2005 |
| 06.24.05 (11:47 am) [edit] |
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I am leaving for Texas on Sunday morning, and not packed. While i'm gone I am going to have my daughter post. I will also try to update here. I wouldn't have signed up for this trip from work, if I had known John would be on oxygen, and home while waiting to see if he will be going on disability or back to work. But i did, and at first i had hoped that John could drive down and see me on my days off, but it's over 17 hours to drive. We sure can't afford to fly him right now. So I will worry about him, but the closer it gets, the more i get excited too. I haven't seen Texas yet, and it is right on the border, so i get to see Mexico. I really wish John was seeing it with me. I get sad when i think like this.
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| Wednesday, June 22, 2005 |
| 06.21.05 (9:16 pm) [edit] |
This weekend has been stressful, but we survived. John is now on oxygen. He is on 4liters and 5 or 6 to exercise. The man who brought in the oxygen drove up, and John went out to meet him, and the man asked him if the patient was inside. John said "i am the patient", and the man was very surprised because usually someone is already on oxygen at about 2 liters before going to 4. John look healthy. He exercises everyday, and is in excellant shape, and his heart rate last year was 48-52 resting. Now it is up to 60+, but this is due to redused oxygen in the blood, and this puts a strain on the heart. He diffently doesn't need that. Someone came by on Monday to test the portable oxygen units. John was getting ready to exercise, and had taken off the oxygen to use the tank downstairs, and answered the door. The lady asked if she had the wrong house.
Here is what i notice: When on oxygen the coughing is not as persistant. His color is better. A couple of weeks ago, he was looking very pale.
I am full of questions. Lung transplants aren't done with living donors, unless it's on children. He will have to be evaluated, and put on a list. This is moving so fast.. we thought we had more time. They life expectancy is 6 years, not 2! The doctor said it was to early to think about transplant, but if not now, when? If the progress continues, he's afraid he will not survive the wait on the list.
The weekend was hard, and I thought he was getting depressed, and why wouldn't he? But that would be so very hard for me to watch. I cry so often now, and we just aren't excepting this to easily, and i'm not dealing with it to well yet. Will i ever?
He is waiting for the doctor's office to send back the release form, to send to his job. We then will no if he is on disability. This man is a CCNA, CCNP, A+, Network+, Senior Electronics Tech. He needs to learn, to work, and this is so very sad to see him watching a movie in the middle of the day, in the middle of the week. We go outside, and we even went to the show, but he is not ready to wear oxygen in public. He will wear it in the car, but it stays there, unless i carry it, and he says he'll walk slow. But he starts coughing if to long without it, if he's walking.
We had chinese this weekend and when we opened our fortune cookies his said, "Today it's up to you to create the peacefulness you long for". He read mine to me and it said, "You are the guiding star of his existence". I cried.
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| Friday, June 17th, 2005 |
| 06.17.05 (5:28 pm) [edit] |
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The oxygen arrived, but i had to go to work, so i wasn't there. He is on 4liters, and 5 to exercise. His job as an electonics technician, is probably history. He has been there for 18 years. They will not let him wear oxygen, and/or even leave it at the door. He will probably have to be on disablitly now. This was sooner then we had expected, or anticipated.
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| Email sent to John at Work by Cathy on 6/17/05 |
| 06.17.05 (6:46 am) [edit] |
Pam, the nurse, called. She is calling the oxygen people. They want you on oxygen, all the time. I explained about your job on the factory floor. She said, that since your levels were 92 while resting.. that maybe you could wear it in(walking in and out), and then take it off, or store it there were you clock in and out. Talk to someone. If you can't store it, I suggest you take your lunch into work with you, as you shouldn't be walking back and forth with out the oxygen. they will bring portables, and something to plug into the wall. She is also calling a surgeon who will call us back, and you will have to go see them, and make an appointment. I'll take care of it, when they call, and see if the oxygen people will come in the morning, or hopefully tonight. I can take off for a half a day, so I'm here if they do, to hear everything. I'll keep you informed. Pam just called again.. and you are for scheduled June 29th at 8am in the same office as Castro, to see Dr. Meyers, the surgeon, and you can make the appointment for your surgery. Schedule it anytime after July 9th. She also called BJ health center with the oxygen order. We should hear from them soon. I love you, and I need you.
Cat
12:35pm-
BJ Health is coming to bring oxygen before 7pm tonight. I will go in late to work, so i can find out what's what. Brittany, my lovely 17 year old daughter, has already offered to donate a lung to her old man. Same blood type. With the progression, John doesn't think he will last on a waiting list for a lung transplant. I can't believe I'd consider something like that, but I almost am.
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| Thursday, June 16, 2005 |
| 06.16.05 (6:50 pm) [edit] |
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John had his breathing test today. They measured the oxygen in his blood. Normally it should be above 90. The higher the better. Last year when taking this test, his heart rate was around 50=60, and his oxygen level was 92-95 while doing the walking test. Today, oxygen was 92 while sitting, and when he started walking.. it went down to 86. They put him on oxygen, and continued. He walked and then dropped to 88 again, so they turned up the oxygen from 2 to 4 and he continued and finished at around 92-95 with the oxygen. His heart rate was between 70-80. The nurse was pleasant, but suggested he not exersize until the doctor called him, hopefully tomorrow, and we suspect the doctor will put him on oxygen. At least while exersizing. John is conserned that if/when he goes on oxygen full time, he will not be able to work at Bassler's. We will cross that bridge, so to speak.
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| Monday, June 13, 2005 |
| 06.16.05 (6:48 pm) [edit] |
I know I haven't posted here in a long while, but John had been doing so well, with no change.
This is an update letting you all know the status of John's lung disease.
John had his second CAT scan yesterday. This is the update on his lung disease. The CAT scan from yesterday compared to last year, showed a rather large decline in lung space. Where there was black space for oxygen.. now it looks like it's snowing in his lungs. The difference is significant. This explains the continued cough, and slight shortness of breath. The doctor suspects IPF that is progressing rather quickly. Without the lung biopsy they prefer not, and actually will not, treat him for any one lung disease, as the first proceedure was inconclusive. He didn't even cough before the first proceedure in November. Not he can't stop. John will scheduale a lung biopsy, where they will actually cut out a piece of lung, for the beginning of July. Probably for the second week, right after i return from Texas, where i am going for work, for two weeks. He will be in the hospital for up to a week, and off of work for several weeks after that.
If John has the progressive form of ipf, then a new treatment called interferone, may be promising. He will eventually need a lung transplant, as there is no real cure for the disease. Hopefully that is not the case, or at least down the road a bit. Of course your prayers are appreciated, and i will keep you informed.
Cathy
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