This week it means dealing with coming off an unsettled week of fronts moving through which meant different reactions in the lungs.
It also means some serious workouts schedules to get things moving in a definite direction.
]]> Thursday at our get together the Physical Therapist had me add a short Treadmill session in with the bike and warm ups.When we were setting the schedule for the weekend I asked whether now might be a good time to start doing at least some minimal hand weight routines also. She said that would be a good thing so except for time and speed I am not back to an almost full routine. I am doing multiple sessions through the day however so hope to move thins along at a good clip.
Hey there's no time like the present to go for broke.
Tomorrow I am to get the Vitals Monitor installed and have a chance to talk to my nurse about a couple little details.
]]>The air became herder to come by and I spent the entire night seated at my PC. There is no attempting going to sleep at a time like this as the o2 simply does not reach the lungs.
]]> While I did finally catch perhaps some cat naps in the morning, Monday continued more of Sunday evening. I called and requested a visiting Nurse and that afternoon we talked to my PCP who recommended a restart of the Prednisone for a 10 MG daily run.Tuesday brought an easing of the situation and now at 3:30 AM Wed morning I find myself once again making an entry. Welcome to my world :-).
]]>But I have workouts to continue and some daily living chores that I have been putting off.
Yesterday my neighbor Pat was over and helped...no not helped, but made a pot of Beef vegetable soup. Oh was that good.Of course now that I know how to do it I think I will be on my own. :-)
]]>I am s l o w l y feeling better and have been able to fine tune some living necessities to make my life easier and more stable. Getting these cheap standard heat controls to give me what I want temperature wise. My house is cooler than it used to be, but my breathing is much freer and consistent.
]]> The PT has been in twice and I am getting back on the task of building up my body strength again.I am also gaining a bit of weight. Not a lot, but the trend is upward for a change.
All in all I consider this a good week. The Monitor that they tried to install on Thursday but couldn't will be reinstalled on Sunday so the daily reporting on my vitals will be getting done.
I am feeling a bit more positive again that I can do what I have to over the next few weeks (and beyond) to get officially listed and then onward to the actual procedure.
]]>After the visit from the Nurses yesterday I was able to calm down a bit.
You may not fully understand what I am getting at, but basically it is good to know that someone will be stopping in from time to time for checking vitals, etc. It's my hope that with them stopping plus the monitoring unit they are bringing I might head off getting something that will send me to the "Big House" for a while.
My Physical Therapist stopped today also and we have restarted my exercising. Granted we are back to the start again, but I feel that once I get through the funk I always have from the Antibiotics that I will be well on my way to getting back into shape.
]]>That evening and throughout the night my breathing became very difficult. I stayed up most of the night getting at best 30 to 45 mins rest early in the morning on Thursday
]]> I sat in my chair for about an hour and a half, and it seemed that things might be settling down.Not to be.
After walking from my chair in the LRoom, to the door of my Office to check email, the intensity of the problem came back and the closest place to sit down was atop the Stool in the Bathroom.
911, was called and soon I was being hustled off to the Hospital where I would be diagnosed with Pneumonia.
Upstairs I was taken but surprisingly I was placed in ICU, and after a day/night there I had settled down enough that they moved me downstairs to the more Public Guest Suites.
The 2nd floor brought more revelations as a Sputum sample came back containing the MRSA Bug. My room was turned into a Quarantined area so that anyone entering had to wear a gown, Latex Gloves, and a Mask.
During this time however I was eating some of the better food in the area, and being fed a steady diet of Antibiotics for my Pneumonia. This was steadily improving, but with the MRSA they added a second Antibiotic so my liquid intake was quite high.
Sunday morning I was feeling pretty good as far as my breathing so my PCP suggested I might be sent home Monday morning.
That is what happened. I will have visiting Nurses stopping by to check my progress, and of course my Physical Therapist will be restarting her guidance to get my strength built back up.
So ends another all to common set of events in my life.
]]>It has been a moderate day for the breathing. Tomorrow will be better.
I am slowly getting my burst of Prednisone tapered down. I think I will contact the boss and see if I should just continue getting rid of it over the next couple weeks. That stuff does its job, but I just don't like being on it unless I really have to.
Oh well, one more round of workouts to so yet tonight.
]]>Exercising 2 times a day, though not strenuous, has helped keep my mind on the most inportant thing for me right now. Stay warm, don't cat a bug, and get my sorry butt built up with more strength.
The biggest problem is that I'm not doing as well on the weight so need to concentrate on that this week.
]]>The basic layout of the site is done, however I am working on adding the full Gallery Program for it so that we will have visuals also. I have every plan to document the Journey to the highest degree possible. I was told we will have Photographs taken during the Operation, as well as what these next to dead Lungs look like. It is close to coming alive so look for it soon.
]]>We got there and I did early Pulmonary Function Testing which did show more slippage. I also did an Arterial Blood gasexam which pinpointed the percentage of O2 in my blood stream.
Then iw was the dreaded 6 minute walk in which they get a measurement of sorts of the body's strength. I had problems with it the last visit so was hoping to do much better.
]]> As it turns out I just barely missed the benchmark for the distance but was very very close.The Surgeon I met today told me that basically right now I am sick enough to warrant the Transplant, but too sick to have it. My weight is a bit lower than they like to see so that was something else he looked at.
However, he said all the other test came back in favor of me getting the procedure if I can get these two areas improved upon.
Later in the day visiting with my Dr/coordinator, she said basically the same thing haowever added that things were looking almost certain for me to get the transplants with some more wotk on my part. I now will be assisted in my home on my basic equipment by a Phy Therapist to get the strength built back up and inline with what they need. I will also be taking a new look at my attempts at gaining weight so that we can get as much improvement as it possible.
A meeting is scheduled for 6 weeks to check my progress, and if I feel better say in four weeks I can call and they will move the meeting up.
Alll in all I felt it was a VERY positive meeting and know that I can do what is needed to get this very special gift.
]]>The adage of packing light for an overnight stay has not applied to me for many years now.
Seems like I am packing for an Army now.
And of course there will be the assorted tanks of O2 of 3 different sizes. That way I choose the size for where I have to go. Although at the Clinic they supply us with tanks that fit in the Wheelchair that will last for much longer than my portables, and seems like the tanks can be changed out just about anywhere with in the building.
But then there is the O2 Concentrator. This we us in the Hotel room to give me a good supply around the room and during sleeping. I can Humidify that air also and it makes things easier on the sinuses.
Lets not forget the mental baggage that always goes along. A certain apprehension that all the meetings and testing goes well. But then we are only talking about things that may mean a possible extension of your life here. So we try not to let that get too heavy on us.
Well time to shut this down and do some more "Packing".
]]>That settled down after a few hours and then the scratchy throat became present.
]]> Along with all this was a slight breathing difficulty increase.I had a Dental appointment to take care of a few cavities and managed to get through that but this continued their slide.
The cough increased although not a lot of phlegm seemed to be produced. What finally did come up really was not showing any signs for concern at this point, however the strength and breathing still seemed to be deteriorating.
Friday I decided that I had to give serious thought to starting a burst of Prednisone which I did. However I was still not seeing signs that the Avalox (an antibiotic that I keep on hand) was needed...yet.
As I write this on Saturday afternoon I am still not started on the Avalox, but am in to my first 24 hrs on the Steroid.(Prednisone).
We'll see how the next few hours progress.
]]>It would seem that I may be coming down with a cold. I had a drippy nose last night and today a bit of a sore throat. So I am watching it and hoping I don't have to take steps to get on some of my heavier medications. Especially with the Cleveland trip.
]]>We had discussed the possibility of going to ER, or calling a Squad, but I was determined to get control and see what the morning brought.
The next morning after very little sleep I was not in a great deal better situation but we decided that we would go on across to the Facility and seek advise from the staff. I questioned a meeting which I had scheduled in another building which meant going by wheelchair outside a small distance and then into the building for the test and then returning to the main building where the rest of the day was scheduled. I was also concerned about having to do a test called the 6 min walk which I simply did not feel I would be able to complete.
The Staff member said they would cancel the test in the other building and to go ahead and do what I could as the day progressed.
I got my blood samples taken (28 vials worth), an X-ray, and went to the pulmonary dept for my function test and the dreaded 6 min walk. Halfway through the PFT I felt that (A) I was beginning to perk up a bit, and (B) that I simply did not want to meet with my Dr. and have to explain to her why I was not doing the tests. So I became determined to finish the 6 min walk at a slower pace...but to at least show her I tried.
Well, I finished it, but my distance was far lower than required and about half of my first test in October. The Dr was able to see that I was in a distressed situation so gave me a list of new test to be done in the home area, and also suggested the start Antibiotics and Prednisone.
Another one of my daughters had joined us and so we were able to meet with the Social Worker on some matters of importance, and then pack up and head home.
I was not in good shape upon arriving at home and would in fact end up being taken into the Hospital for a few days, but that is another story.
Having a Lung disorder is bad enough but having it during the Winter in Ohio everything gets compounded. I will survive and know that I have my work cut out for me before my next visit in January. But We are coming into the Homestreatch and time to do what it takes to pick up the stride a bit.
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