Have I Told You Lately How Much I Hate Hospitals??

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To get it out of the way and I know everyone is tired of seeing pictures of the “Super Moon”,  here is the one that I spent over an hour trying to get the exposure correct.  Not exactly happy with it because it’s still a little out of focus.

A lot has happened since my last post and I’ll try to make it short as to not bore anyone.  But a brief recap is in order.  Back in August I had major breathing issues and I checked myself into the hospital thinking it was my heart.  They did a stress test, an echo-cardiogram and a heart heart cath. and found that I had 70% blockage in one of my arteries where they placed two stents.  My breathing had not improved any.

They then decided to do some breathing tests and ordered a CT scan.  They found fluid in my lungs.  They drew out 2 liters of fluid from my right lung.  I felt great afterwards.  They think that it’s my CML meds causing the fluid retention.

Two months later, in October, my breathing started getting bad again. My pulmonary doctor ordered another CT scan and found more fluid in my lungs.  He pulled just over a liter of fluid off my right lung.  Keep in mind that they haven’t touched my left lung.

Since all the fluid has started building up in my lungs, all three of my doctors (cardiologist, pulmonary and oncologist) agreed that a reduction of dosage in my CML meds.  It was reduced from 100 mg to 80 mg.  But my problem returned even quicker after my last fluid withdrawal.

Last Monday, November 7th, I couldn’t take it any longer.  I had to get some relief.  I couldn’t do anything without stopping and catching my breath.  Tuesday, after I voted, I went to the emergency room. I told them what I wanted them to do and they proceeded to do x rays. X rays showed nothing so they proceed to do another stress test and echo cardiogram.  But not after I sat in the emergency room all day on Tuesday.  I was finally admitted late Tuesday evening and they started doing the tests on Wednesday. Wasted a full day on Tuesday.

I was released on Friday evening but not after having another liter and a half removed from my lungs and another diagnosis of diastolic heart failure.  So, I’m on nitroglycerin patches to help me breathe and a whole lot of other meds as well.

 

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Another Round

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Flying High Over Recovered Strip Mining Land

For those that have been following, my breathing had gotten pretty bad as of late.  I’ve been passed around different doctors for several weeks now and finally I was able to get a little relief.  I had to take a full day off last Thursday but I was able to meet with my pulmonologist and he pulled just a little over a liter of fluid off my right lung.  I feel that he could have pulled more out but every little bit helps.  I’m not breathing as well as I was when I got out of the hospital a couple of months ago but they were able to pull 2 liters out last time.  Their not exactly sure why I’m retaining the fluid but they have an idea that it’s the CML meds causing it. They weren’t able to test the fluid last time because the doctor didn’t tell anyone to test it.  This time he took several samples to send to the lab so hopefully they’ll be able to narrow it down as to the cause.

It’s been 28 days since we’ve gotten any rain here.  The picture above shows an area that is normally very green.  As you can see it’s all covered with brown grass.  Can’t wait until we see some rain.

Trying to Stay Up!

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Pleasant Grove High School

This blog was supposed to be able to help others that are going through the same stuff I am such as CML, Diabetes and being over weight, deal with life’s up’s and downs.  However, all I seem to be doing is bringing myself down.  How can I be helping others if I can’t seem to help myself.  I keep telling myself that once I get my health back on track I’ll be able to use  this experience to help others if and when they go through something similar.

First things first.  I’m still dealing with my labored breathing.  I think the last time I posted that I was going to see my cardiologist.  Well I did and he scheduled a echo cardiogram of my heart.  Really!  The problem is not my heart but fluid retention in  my lungs.  Anyway, had the test done and after a few days I got a call stating that all was fine.  Then he scheduled a CT scan of my lungs this past Thursday, nothing heard as of yet.  I have an appointment with my GP on Tuesday and my pulmonary on Wednesday.  Keep in mind that every time I have to take off to go to the doctor I have to work over to make up for the time lost.  I’m so sick and tired of having to stay late it’s about to drive me nuts.  Of course, that’s another story.

In the mean time…my employer is stressing me out.  I’m not exactly sure what I’ve posted about this but my boss has noticed some memory problems going on with me.  I, of course have denied all of it but it turns out that I am having some memory issues.  They’ve run a bunch of tests including some neurological tests that are not covered by my insurance company.  I’ll be paying for these tests for years to come.  But it seems that I’m having some short term memory loss.  The neuro psychologist  has even diagnosed me with amnesia.  Seriously??  Now my employer is wanting to demote me to a lower pay grade because I can’t do my previous job because of some safety issues.  If it wasn’t for the money issues I wouldn’t mind doing the job I’m doing now because it’s a whole lot less stressful.  As of yet the doctors have not determined why I’m having these memory issues.  They’ve done a MRI of my head and of course they didn’t find anything up there. (Pun) and they’ve pretty much ruled out my medications as well.

On top of all this the associate health nurse is telling me to seriously consider disability.  I’ve checked into it and can’t afford doing the things it’s asking me to do.  For instance, if you make more than $1300 a month you will be denied right off the bat. With two kids in college, one at home, a wife and all my bills there is no way I can live off of $1300 a month.  I have got less than 23 months before I can retire.  I told the nurse not to mention disability again to me unless she want’s to pay my bills while I’m off making less than $1300 a month.  She didn’t much like that comment.

Regardless how I feel, I try to do something fun at least once a week.  Tomorrow I’m going to my girls college for some homecoming festivities.  Getting to the place is not the issue, it’s once I’m there having to walk the seven to eight blocks to where I can view the parade, that’s going to be the issue.  I’ll be able to spend some time with at least one of my daughters tomorrow but the other one will be busy with band stuff.  I’ll see her in passing.
I’ve also bought a drone.  It’s a Phantom 3 Advanced and so far I like it.  I’m still scared that it will fly away on me and I’ll never see it again.  It takes pretty good pictures and real good video.  I’ve already been asked to do some aerial photography of some upcoming events so at least I’ll be able to sit down while I do that.

Anyway, that’s what’s been going on lately.  Maybe I’ll get some relief for my breathing soon.  We’ll see.

Round Robin With the Doctor’s

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I’m literally sitting here fighting for each breath I take.  I’ve been on the phone with three different doctors the last two weeks trying to get one of them to make a decision.  We’re all in agreement that we assume that my CML meds are causing fluid to accumulate around my lungs.  The problem I’m facing is finding a doctor willing to take responsibility and assisting me to drain the fluid.  I first contacted my oncologist thinking he would take me off my drug for a few weeks, he suggested contacting my pulmonary doctor.  My pulmonary doctor suggested for me to see my cardiologist.  I contacted my cardiologist and he suggested that I spend the weekend in the hospital.  I refused that option because my daughters were coming in for the weekend and that’s the last place I wanted to be.  So, I go see m cardiologist tomorrow at 3pm.  What the hell he’s going to do is beyond me.  The problem is not my heart it’s the fluid in my lungs.  I’m so put out right now I can’t think straight.

Life’s Changes

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I believe Heraclitus that once said “The only thing that is constant is change.”  This is so true.  How we handle change is what’s important.  There are those that can’t deal with it and go into some sort of mental breakdown while others it’s like water off a duck’s back, or they hide it very well.  My wife is one that can either hide it very well or she has found a way to deal with it.  I guess I need to talk to her to find out how she does it. She does not, however, like the time change.  She fusses about it all the time.  Me, it doesn’t bother me one way or the other.  That’s what I call the little things.  Little things in my book doesn’t bother me so much.  It’s the big things that, if I sit alone in a room and have time to think about it, I worry about it.  So much so that it bothers me; I lose sleep over it, my attitude changes and my temper get’s shorter.

This year alone has been full of changes and misfortunes.  If I had to list them by importance I’d have to say having my girls moving off to college was one of the biggest changes in my life right now.  All the crap with my health is a close second.  But dealing with my girls gone is quite challenging for me to deal with. It’s what I’m used to I guess.  I’m used to seeing one of my girls sitting in the recliner when I get ready to leave for work in the mornings.  I’m used to the same daughter saying grace at meal times.  I’m used to the hug I’d receive right before I’d leave for work in the mornings and the smiles I receive when I got home.  Now, I see empty beds at bedtime, an empty chair at the dinner table and only a phone call late at night to tell me how their day went.  I guess you could say that it’s the beginning of the end of life as I know it.

Anyone with kids will tell me that I’m not alone.  This has been going on for hundred’s of years.  You’d think they would have come up with a cure for this by now.  I know it’s been going on for years but for me, it’s only been going on for five weeks, two days and thirteen hours. I really miss my girls.  I try not to dwell on the fact that they’re not here and that if  I need to talk to them all I got to do is send them a text and when they can they’ll call me back.  Another thing, they’re only an hour away from me.  It’s not like some kids and be hours by plane from their folks.  Oh gees, I’m glad that they’re close by.

I guess there’s one good thing about missing my girls is that while I’m missing them I’m not dwelling on the issues I’m having with my health. That alone will cause anyone to go into deep, dark depression.

I’ve starting trying to get out more and getting more active.  Yesterday I went on a small hike, about 200 yards or so.  I walked down to this creek that our boy scout troop helped clear a path to several years ago.  It’s being used and I even saw some fire rings being used. One thing that I saw that I didn’t like is the amount of trash left by the campers.  Why can’t people pick up their trash?  I can never understand that.  Oh well, thoughts for another story.

Improving? Not so Much.

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I started back on my CML meds last Monday and to be honest I think my breathing has gotten a little worse. I’ve started climbing the steps at work a little more and trying to maintain at least 10,000 steps in a day. I spoke at length to my oncologist last Monday the day I started back on my Sprycell and he told me that the majority of the people who end up with water retention will do better at a lower dosage.  I’m now at 80 mg instead of the 100mg that I was once on.

I’ve decided not to just sit at home waiting to see if my lungs will fill back up with fluid.  I don’t really feel like getting out and doing anything but I feel that I’ve at least got to try  and get what little exercise that I can get.  I think it could only help matters if I get off the couch and do something.

Yesterday, my wife and I met our son at the university where my daughters are attending.  They’re both in the band, one plays the sax and the other is a band manager.  Yesterday was their parent preview show.  It was awesome seeing my daughter’s perform. I got to meet one of their roommates and enjoyed going out to dinner afterwards.  As usual it was hard for us to leave after visiting with them.

Today I went to my parents house to check on them as well as my bees.  It’s been at least two months since I’ve done either one.  The bee yard was grown up with weeds and it took everything I had to use my weedeater to chop down the weeds just so I could get to the beehive.  After about an hour of cleaning up I went and sat with my parents for a couple of hours.

It was hard to leave my parents. They are both getting up in age and their health is not as good as it used to be.  My mom had to have more surgery a couple of weeks ago on her diaphragm due to finding a hole where her colon and her intestine were coming through.  The doctors seem to think that this was caused by the accident they had back in February.

The above picture is of the band managers.  The young lady is my daughter.  What a  trooper.

Not Quite There but Better!

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It has come a time in my life where I have to ask myself will I ever be as healthy as I used to be.  It seems that every time I get better I have another set back.  Every time I gain some vacation time I end up sick and  using most if not all of it trying to get well again. It’s usually after I gain about two weeks of time when something happens and I lose down to a day or so.  Currently I’m at 24 hours so I’ve got about a month to go before I can reset the clock.  In the meantime I have to be at work and if I have any doctor’s appointments, which I do, I’ll have to work over to make up for the time I take off or else I’ll lose more time.

I’ve spoken to my oncologist and he’s instructed me to resume my CML meds but at a lower dose. I’ve having to cut my 100mg pill in half then cut one of the halves in half again.  That way I take one half and a quarter so hopefully that’s about 75mg. I don’t like doing it this way because I’m not sure I’m getting the dosage right.  The oncologist seems to think that I can get the pill in a 80mg strength tablet and that’s what he really wants.

To say that I’m not concerned about the fluid coming back into my lungs is an understatement.  I’m deeply concerned and I’m wanting to know if there’s a test that can monitor the amount of fluid being stored in my lungs.  Currently the only way is a CAT scan and I can’t keep going in for a CAT scan every few weeks. So, according to my doctor I’ll just have to monitor my breathing on my own.

With all the diuretics that I’m on I’m losing weight.  I’m down over ten pounds since I had the stents put in.  I am feeling better but the breathing is still not 100 percent. I am back climbing the stairs at work but only one floor at a time.  Next week I’ll add an additional floor. I still get quite winded but I’m able to recover much quickly.

I’m still plugging along and hopefully I’ll be able to do more exercise but right now I’m going to take it easy and not push myself too hard right now.  Definitely later though.

Another Visit Part 2

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I got to thinking on the way home from the hospital about just how serious this past visit to the hospital was.  It was just happenstance that they found the blockage and even more so the fluid in my lungs.  I was thinking just how bad I have felt the last few months and that it was the sole reason for me not exercising.  Now that I had all this stuff done I should feel well enough to start walking more and hopefully get on my bicycle soon.

Now comes the hard part.  Wife and I had a discussion about food choices and eating better.  The wife does most of the cooking in the house and she is a working girl too.  She comes home and feels like she’s got to cook something so it usually ends up with hamburger helper or chicken fingers.  Looks like I’ll be searching for heart healthy meals for us to get acquainted with.

All these changes won’t come overnight.  My wife and I have got to start eating better and exercising more if we want to live long enough to see our kids grow up and have families of their own.

 

 

Another Visit Part One

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I knew it was only a matter of time before I ended up in the hospital again.  This makes the third time since January.  This time it was a little more serious than all the others.

I went and saw my cardiologist this past Wednesday and it was decided that because my breathing was so bad he would admit me to the hospital for a heart cath.  I was under the impression that the procedure would be done Wednesday afternoon after i was admitted but all they did was blood work. The next morning a heart cath was performed where they found the left artery 75% blocked.  Two stents were installed and I just knew that would help my breathing.  It did not help at all.

After returning to my room I started talking to my cardiologist and he informed me that he had called a pulmonologist in to see me.  A little while later I got carted off for several tests in which one was a breathing test and the other was a sniffing test.  Both of which I failed.  The pulmonologist came in later Thursday evening and basically told me that after seeing the results he had no idea what was causing my difficulties.  All he could tell me was that my diaphragm wasn’t working.

Friday morning I was carted off again for a CAT scan of my lungs.  After returning to my room I was told that I would have a procedure known as a Thoracentesis,  a procedure to remove fluid around my lungs.  At 2pm they removed 2 liters of fluid off my right lung.  I was told that the procedure wouldn’t be painful.  They lied.  I sort of reminded me of my bone marrow biopsy.  Maybe it was the way they did it but it was in the top ten as far as pain.

I never got to comfortable last night because of the pain but as long as I stayed still it didn’t bother me too bad.  I had to hook up my CPap tonight and the pain was still there.  I’ll be taking some pain meds tonight before going to bed.

My daily medicine count has increased by five.  That makes 17 pills that I have to take on a daily basis.  As long as they keep me alive and my insurance holds up I’ll keep taking them.