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Sunday, February 28, 2016

Sleep Study Etc.

Dear Diary,

I did the home sleep study last night and as far as I'm concerned it was a total disaster. I haven't had that bad and I sleep in a long time.
Interestingly , the problems I had had absolutely nothing to do with the sleep study itself or with the equipment I was wearing on my head. I just flat out had a bad night, tossing and turning and tossing and turning. It was ridiculous!
We took the equipment back to the Study Center today but have not received any word as to the results. Will probably get those within the next two days. 
I have a suspicious feeling that date of the day were able to record was probably totally insufficient to justify the insurance company paying for a CPAP. Oh well, we tried.

I'm still off oxygen and have been all day today and apparently I'm doing fine without it. I just get short of breath if I exert myself too much.
I tried taking out the garbage today, both barrels from the backyard to the street and that almost killed me. I'm going to have to be a little bit more conservative on what I take on until this thing is finally over with.

We have the pulmonologist visit tomorrow afternoon so as I mentioned before, Karen and I will be both able to get most of our questions answered,  I hope. 

As far as the bladder condition goes, I'm still batting a thousand. As I mentioned in a previous post, there has been no bleeding since I got out of the hospital the last time.
I'm still pretty gun shy about saying I'm really on the mend. Obviously I hope I am but the way things have been going it's kind of a knock on wood situation.

My weight seems to have stabilized at 260 which is a good thing. This is the lowest I've been in a hell of a long time. Just losing the weight itself is going to be a big plus for my general health and the diabetes. 

On the light side, my birthday is coming up on March 7th. It will probably be the only day in the entire year that I'll be able to indulge myself with sweets! 
I will be 63 years young I'm looking forward to hopefully making 64. I guess at this age you have to be grateful for every year you get.

I'm thinking of staying up really late tonight see if I can make myself sleepy. I don't want a replay of last night! I do have a problem with mild insomnia which I sometimes think has something to do with the medications I take say nothing of my level of activity
A lot of times it simply  is just not being able to stop my mind racing. This is one of the classic reasons I posting this blog because it helps me visualize all the junk that's going on in my mind and kind of get a grip on it if that makes any sense.

The wife and I are still sitting out on the patio at 8:50 at night and the neighborhood sounds like construction zone. I have absolutely no clue what's going on. You combine that with the motorcycle traffic and the local airport traffic and gets pretty weird as far as noise levels go. Sometimes I think that's why I am partially deaf!

That's about enough drivel for tonight. 


Friday, February 26, 2016

Saturday Evening

Dear Diary,

We moved  the back patio furniture over to the front patio so we could sit a little bit longer without being burned by the sun. It was the first day in ages that I've actually had the ambition to do stuff like this. Maybe I should use the term energy.
Anyway we're sitting out there right now having our cocktails and getting ready for supper. We've got a nice roast of beef in the oven and it should be ready in about 45 minutes.

I've been off oxygen all day today and I'm still alive, as a matter of fact, I'm not even blue! That's always a plus you know. If it keeps improving like this I'm hoping that I will be 100% off oxygen within the next couple of weeks. What a sense of freedom that would be!

The bladder has been giving me a little bit of an issue today. A slight bleed started when I got up from taking a nap. Before that it was leaking urine continuously. I did self catherization and there was considerable pain involved when the catheter hit the bladder area. Now, for some reason, the bladder seems to want to retain the urine. Probably no big deal as I can re-catheterize if there gets to be too much in there.

I decided to do the home sleep study on Sunday night and take the equipment back the next day. Hopefully I will be able to get a good sleep so they get some kind of usable information. I'm giving it a couple of days so I can see what happens if I go without oxygen overnight. Based on today, I suspect I can go all night with no problem. Saturation doesn't seem to get below 85% at the worst.
I've been thinking quite a bit about it and I've decided that I really would like to go with a CPAP if the insurance company will pick it up. At the very least, it would tend to keep my respiratory tract a little moisturized in this very dry climate.
I'm reminded of that because my lips are dry and bleeding which happens almost exactly the same time every year. The relative humidity is really dropped off so we're probably going to need to use a humidifier pretty soon or possibly the swamp cooler.

As I posted earlier, I'm starting to worry about the cancer recurrence again. It's getting about time to get the PSA checked. The last time it was checked it was 0.3. If it is continuing to increase then this is a significant issue. It will probably result in my having to go on hormones. Probably something like Lupron.
This may affect my life in a very profound way.
It's very depressing to think that I may go from the current set of problems that I have now to a whole brand new set of problems with the possible recurrence of cancer.
I've been very lucky so far but that can't hold out forever so all I can really do is just wait and see how things play out. I plan to get the PSA done within will the next month. Updates will be available. Wish me luck!

Somehow, I suspect 2016 is going to be a very interesting year!


Thursday, February 25, 2016

Must Be The Pollen...

Dear Diary,

The pollen count around here must be really elevated today. I woke up this morning with a slight scratchy throat and a headache,  minor body aches and a host of other things that I don't normally get up with.
My nose is also really stuffy. I thought that was a side effect of being as how much oxygen but now I think it's just simple allergies.

Sitting out here on the back porch with the wife having a bourbon. When we first came out it was in the low eighties and it's starting to cool off already. Just as soon as the sun goes down the temperature drops off by 4 to 5 degrees minimally. 

We went down to get the sleep study stuff today. Kind of interesting and  the whole thing only took about half an hour.
They have this cute little head band arrangement that you wear all night which is actually a fairly sophisticated computer system. Right on a par with "Google Snore".
I don't have any problem with the testing procedure except, little did we know, I have to be off oxygen all night which wasn't recommended by my pulmonologist.
Since the breathing has improved significantly since I first saw her, I don't foresee any problems but we'll see. If anything does occur I'll simply have to abort  the test.

Still taking lasix for the edema. At least it seems to be working most of the time.
Kind of makes me feel like the 'Energizer Bunny' . I just keep going and going and going.

Well, since I've been out on the porch tonight, my o2 saturation is been hanging between 85 and 95%. The only problem is, that because I'm a naturally shallow breathing I have to consciously breathe, not necessarily deep breathing what the type of breathing everyone else was considered normal. If I breathe the way I normally do, unconsciously, the o2 falls to 85.
I don't feel a physical change when this happens but I'm just not sure whether I'm doing any harm to my body or not. This is another question for my next visit to the pulmonologist. 

Gotta go, Lasix is kicking in again!


Midweek General Health Update

Dear Diary,

Good news! I have officially made it to tonight (Wed.) with absolutely no bladder bleeds since I got out of the hospital last Friday. I notice also that the soreness that's been plaguing me so much is markedly improved. The bladder has  been voiding normally.
I've only been required to self catheterize one time since Friday.

I mentioned in one of the previous posts that my shortness of breath is markedly improved. That continues to be in effect.
We're not sure whether that's an effect of the Prednisone or something else. Hopefully, I'll be getting a pulmonary evaluation done within the next month. 

Along those lines, I seem to be getting a lot of recurrent pitting edema in both feet and ankles which may be due to either sedentary living or possibly a side effect of the prednisone or both. Oddly, the lasix I'm taking for the pitting edema seems to be less effective that was when I first started it. It used to leave me looking like a skeleton. Now it just seems to make me pee whole lot without reducing the swelling that much. Good question to ask the cardiologist when I see him again. 

Tomorrow, we go to visit the sleep study people and pick up necessary equipment for the home test. We are checking to see if I may qualify for either an BIPAP or a CPAP if if it turns out that I have sleep apnea.
Interestingly, it's possible I've had sleep apnea most of my life simply not been aware of it. And may have affected my life in ways that I didn't know. Apparently that's very common in people who have it.
Going through all this crap is actually teaching us alive. I guess that's a good thing!

According to our scales, my morning weight is down to approximately 251 pounds which is the lightest I've been in several years.
I can feel the difference in my energy levels even though my shortness of breath still isn't completely gone I have plenty of energy that I can't use. Weird huh?

Going to go and probably try to get some sleep now. 


Monday, February 22, 2016

A Windy Night In Phoenix

Dear Diary,
Out on the porch again tonight and it's really really windy. Not cold but it actually around 14 to 20 miles an hour out of the West. Feels nice though.

Things went fairly well today. I was able to take myself off the oxygen for most of the afternoon. As long as I don't stress myself and walked too fast the saturation recovers fairly quickly, a lot quicker than it was before a week or two ago.

I haven't been getting out to walk in a few days so I'm thinking of going out to the store with the wife tomorrow. I gotta do something to get out of the house. I'll have to be hooked up the oxygen but its not as bad as it may seem. My body is so deteriorated from lack of physical exercise it isn't even funny.

The home health care service failed give me a call today which I tend to view as someone of a blessing. If they do call I suppose I'll talk to them but as I said last night I'm really not thrilled about having strange people coming into the house. Truthfully, the OCD issue is really a major part of this.
I don't tend to talk too much about that but it is way dominating and controlling part of my life. If I hadn't had it since  my earliest memories it would probably have destroyed me.
What are the things that really rattled my chains about the OCD thing his relatives that feel I can't deal with a loved one with OCD even though it doesn't impact their lives in any way. I just went through that was one of mine and apparently he can't stand the thought of having to put up with somebody with this affliction. I may be exaggerating, or it may be the bourbon talking, but I seriously doubt it.
I have a little essay I'm working on concerning the OCD. If I get it the way I want it, I'll probably publish it within the next couple of months.
That's about enough for tonight. Going to pour myself another bourbon and say to hell with it. That usually works. Lol!

Sunday, February 21, 2016

Another Nice Evening

Dear diary,
It's really kind of interesting, we're sitting here on the back porch again tonight and the noise from the street is so intense that I can barely dictate. Imagine living in an environment like that, 24/7! That alone is enough to give you cancer.

Things are still going well on the health front. The bladder is voiding normally although quite a bit since I'm now on Lasix. There is been no blood since I got out of the hospital.
Spent the day today doing absolutely nothing because we have a busy week coming up. I shouldn't lie around all day but it did feel good.

We've only got two doctors appointments coming up next week so we get a little break out of that. That will give the wife and I a little lead time to get our brains wrapped around our situation.
As I mentioned, we're out on the back porch again. Things are starting to calm down a little bit as far as the noise. We're using the computer program, Stellarium to scan the skies for future telescope use. It seems like forever since we've had the big scope out. All the scopes lately have been going up in my bladder. Yes, that was a feeble attempt at humor.

On my tasks and phone calls tomorrow will be a phone call to my insurance company who seems to have decided not to cover my last hospital stay. Stay tuned, this should be interesting.
Well that will probably do it for this evening. More excitement to come as things unfold.


Saturday, February 20, 2016

Saturday Evening Update

Dear diary,
Well, we did get out for a walk today around the block, 2x as a matter of fact. I did get pretty winded but the oximeter showed on o2 level of around 80 most of the time as opposed to 65 or 70.
This is quite a significant improvement.
We're planning on getting out tomorrow for some more walking. Possibly will be able to go up to three or four times which would be good for me.
It's a nice evening here so we're sitting out on the back porch enjoying some cocktails. Seems like forever since we've been able to do this.

Little bit more good news. The bladder has been emptying itself normally for the better part of the day with no trace of blood. That is what it's supposed to do. I will self cath at bedtime to make sure there is no residual there and then we'll see how tomorrow goes.


A lazy Saturday

Dear Diary,
Was able to get a real good sleep last night so today we're enjoying a lazy Saturday. Health issues are currently stable and I'm feeling pretty good.
We're planning on getting at least two walks in today since the weather is so nice.

It's now the middle of the afternoon. The wife and I decided to nap for a few minutes and it turned into a couple of hours, as usual.

Feeling unusually shaky today. This has been going on for some time now, even before I got sick. We're going to have to check into the cause, I guess. I'm wondering if it might be a side affect of all the meds I now have to take. I've had no adverse reactions after stopping the morphine. Hopefully, I won't have to deal with that unrelenting bladder pain any longer.

Self cath going well and no visible blood in the past couple of days. I'm keeping my fingers crossed.
According to the hospital, we are in the process of "retraining the bladder" which may be a long process if it works at all. I'm on my 2nd dose of Pradaxa so we'll see how that goes.
I am definitely between a rock and a hard place with regards to blood thinners! Risky to take them and risky to not. Oh well!

Hopefully, it will be a quiet evening with no surprises.


Friday, February 19, 2016

It's Friday And No Hospitals!

Dear Diary,
We saw the new cardiologist, Dr M today for the first time. The wife and I both liked him right away.
He's the type of guy who is pretty laid back and willing to really listen to what you have to say.
Nowadays, that's quite unusual.
I am now taking the blood thinner Pradaxa which, hopefully will help me avoid any future clotting issues. The doctor's office gave us a 30 day supply because my new health insurance seems to be having trouble deciding whether they want to cover this or not. The usual bullshit.  ;)

The shortness of breath that I've been having is still an issue however it is much improved. Hopefully, the addition of Prednisone will help speed the recovery process along.

The bladder bleeding issue seems to be behaving, at least for a while. (I deserve a break!)

We are still waiting for the home nursing service to call and set up an appointment. I'm not even sure that I want to use them especially since we have so many players on the field already.

To me, what really matters in the long run is that they have a clue as to what they're doing. These services have about the same ratings as nursing homes and I have heard many nightmare stories!
Bottom line is, I really don't want strangers in the house interfering with our lifestyle. We'll just have to wait and see how this turns out, I guess.

We're still waiting on a decision from the "powers that be" as to whether we're going to remove the Vena Cava filter any time soon. I understand, based on my conversation with Dr M that they can be difficult or, in a large number of cases, impossible to remove for a variety of reasons.
I consulted some reliable sources on 'Dr Google' and found this to be true.
We should have a decision on this issue within a couple of weeks...I hope.

I'm off the opioids for a while as pain hasn't been much of an issue since the Foley was removed. No repercussions from that, I'm pleased to say!

It's almost dinner time here and the wife and I are having a bourbon or two and recovering from a rough day. The has really been a trouper through all this! More later.


Thursday, February 18, 2016

Back Home Again

I'm finally back home after another stint in the hospital. I was admitted on Saturday, Feb. 13th and just got out tonight. It was more of the same bladder bullshit that's been going on since the end of July. I've been on a 20 French catheter which is quite large and that wound up getting clogged and the bleeding didn't stop this time. We couldn't clear it so it was off to the ER again, just ten days after the last episode.

Wednesday, February 17, 2016

Still Hanging In There (In case you were wondering)

Dear Diary,
I have good news and bad news this time. The good news is I'm still alive. The bad news is there has been no noticeable change either way. That sucks!
Still on full time Foley catheter for frequent, intermittent bleeds. It seems like I can't even sit in a comfortable chair without triggering one.
Still on full time oxygen as well. I'm starting to feel like a tethered blimp with an O2 line following me around all the time.
This Monday, I get another cat scan and an ultrasound of my legs to rule out any further clot formation. If all is clean & green, they may opt to remove the vena cava filter that was installed while I was in the hospital.


Saturday, February 06, 2016

This Is Gonna Be Short

I haven't posted anything since the end of January. Just as soon as I felt well enough to get out and do a few simple things, I wind up back in the hospital, this time as an outpatient on the observation floor.
No surgery this time as the bleed resolved on it's own with irrigation.
I have no idea if we're really getting ahead of this or not.

Still having issues with the pneumonia and PEs. On oxygen most of the time as I can't even make it to the bathroom on room air without having to stop once or twice to catch my breath.
It appears that I may have to re-train my breathing patterns. I've always was a shallow breather but it didn't seem to affect me as my lungs were in good shape. Let's hope I can get back to that point.

Gotta go rest!