Author Archives: Tim Hughes Living with CML

Caney Creek Falls

11 Sunday Jun 2017

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I’m a bit late posting this but I’ve just now got around to it.  This trail head in the Jasper/Double Springs area of the Bankhead National Forest.  If you’re ever in this area I would highly recomend this place.

The trail starts off down hill for about twenty yards or so.  Which is fine but you’ve got to come back up.  The trail itself is rather nice.  It’s farly wide for the most part but does narrow down to a single person for a bit before reaching the falls.

My wife and I followed this trail for about a mile and a half when we saw a young lady sitting on a log off to the side of the trail.  Surrounding her was another female and a male friend.  The lady on the log looked like she was having some heat related issues.  I offered one of my bottles but they refused any help from us.  Evedently, the hill going down to the falls was steeper than I had read.

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Going down this hill was tough on my legs but not near as tough as going up it.  Once to the falls you had to climb down to the creek to get any pictures of the falls.  There were several young people swiming and I feel sure the water was cold.  My wife didn’t venture down to the falls because she was afraid she’d fall.  The same thought had entered my mind as well but I just walked a little over a mile to get here and I wan’t going to let a little climb turn me around.

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As we guessed, the climb out of there was slow for me.  It took me a while for me to reach the flatter area because I had to stop and catch my breath several times.  Once we made it to the top of the hill it wasn’t so bad getting back to out truck.  With the exception of the last twenty yards.

For anyone with breathing issues or congestive or heart issues, I would not recommend this trail.  All others, have at it. Simeple two mile in/out trail.

 

Good News/Bad News

04 Sunday Jun 2017

Posted by in Cancer

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Bad news first.  My Leukemia is back.  Got a call from my oncologist on Friday and he told me that my numbers were back up.  I’m to increase my dosage and go see him in six weeks for more blood work.  Nothing else to do until then so there’s no since in crying over spilt milk.

Now for the good news.  I’ve started doing the low carb diet.  I’m limiting my carbs to 35 to 40 per day.  I started last Saturday and I’ve lost close to ten pounds this week.  I know most of it is water weight but hell, then pounds is ten pounds.  Another plus is that my sugar has been a lot better as well.  It dropped about 30 points this week.

I went hiking yesterday with the wife.  I won’t go into too much detail here because I want to do a review of this waterfall on another post.  It wasn’t but a two mile hike but the steep hill made it much more of an exercise event for me.  We had to stop several times comeing back for me to catch my breath.  I can’t wait until I get back in shape again.

On another note; my weight loss journey started when my weight got to 345lbs.  My ultimate goal is around 225lbs.  Until recently I thought I’d never reach that goal.  I can now see a light at the end of the tunnel.  It’s very dim mind you but it’s there. Today’s weighin was 268lbs. It won’t be long until I reach my mini goal of 265lbs.  It’s taken me five years to get down to where I’m at.  Will it take me another five years to reach my ultimate goal? I hope not.

A Little Slow

05 Friday May 2017

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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The weather here in the deep south has been less than perfect for bike riding for me.  The last two days it’s been a rainy, dreary day.  Today the temperature hardly rose above the mid 50’s mark.  Tomorrow is forcasted to be warmer but not until mid afternoon.  My plan is to either get a twenty mile in on Saturday or wait until Sunday when I should have more time.

My last ride broke the 100 mile mark.  That’s pretty good considering that only six months ago I was considering selling my bike because of my health.  I’m looking forward to much healther days along with miles and miles of riding.

Happy Trails

Good to See Improvement

02 Tuesday May 2017

Posted by in Cycling, Photography

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It’s hard to believe that just over a month ago I couldn’t walk to my bicyle much less ride it.  Today I completed a little under 14 miles and I’m really excited about it.  A couple of months ago I asked my cardiologist if I would be able to ride by bike again and he assured me that I would be back on it this Spring.  At that time I wan’t able to walk any distance at all without getting out of breath so no, I didn’t believe him.  Now look at me!!

I’m just now getting to the point where I’m enjoying my rides. When I first started I wan’t able to do anything but concentrate on my breathing.  I wasn’t able to look around and enjoy the beauty or take in the smells.  Today brought back a lot of memories when I used to ride all the time.  The smell of BBQ grilling on the grill, the smell of freashly cut grass and the smell of dead animals on the side of the road. (You got to take the good with the bad).  My breathing is still off but I know that will get better over time.

Untill next time, Happy Trails!!

 

Birmingham Corperate Challenge

29 Saturday Apr 2017

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I had an opportunity to ride in the 10k bicycle ride in the Brimingham Coporate Challenge. I’ve been able to get some riding done in preporation for this ride.  Just last week I was able to get over thirteen miles in so that really helped.  Our company came in 2nd in the bicyle strole and 2nd overall of all the companies that participated.

All is going pretty well I guess but I had a little scare the other day.  After my longest ride I noticed while taking a shower I was spitting blood.  I washed out my mouth several times and what came out was dark red.  I called one of my cardiologist the next morning and I spend the rest of the day tracking down all my other doctors as well.  I think that the final diagnosis was that I had some sinus issues and my heavy breathing causing my mouth to get dry aggravated it.

Back in the Saddle Again!

23 Sunday Apr 2017

Posted by in Cancer, Cycling, Leukemia, Weight Loss

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It’s been a while since I’ve posted anything but my absence hasn’t been anything bad.  My health has steady improved so much so that I’ve tried to start riding my bike again.  I was a bit concerned when I got started because I actually thought that something was still wrong with my breathing.  I talked with cardiologist about  this and he just informed me that I was out of shape.  After all, it’s been nearly two years since I’ve been on my bike.

When I first started back I was in for a huge disappointment.  I heard about a bike ride that is held on every Sunday.  It ranges from 8 to 10 miles.  Remember those 20 mile rides I used to do every day?  Lol.  Not any more.  After about three miles I knew I was in serious trouble.  So many hills and I couldn’t remember how to clip in my peddles.  In fact, before the ride even began I fell flat on my face trying to clip in.  We stopped so many times waiting on the slower people that I think that’s what actually wore me out trying to clip in to those damn peddles.  I realized then that I needed to ride around the house for a bit and get reacquainted with my bike.  Shorted ride 1.34 miles, Longest ride thus far 13.48 miles.  I’m averaging about 10 mph.

There is a ride in June called the Hot Hundred.  You got it, it’s a 100 mile ride with smaller rides available.  The shortest is a 29 mile ride that I used to ride in.  I have my hopes of riding it this year.  After my 13 mile ride I have my doubts.  I still may get to ride it, after all it’s in June.  It’s something that I’m working toward.  If I don’t this year, there’s always next.

 

Update 2/19/17

19 Sunday Feb 2017

Posted by in Cancer, Cycling, Depression, Family, Leukemia, Twins

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My health has steadily improved over the past several months with the exception of a sciatic nerve pain issue in my right hip.  I’ve been dealing with it since right before Christmas.  It has gotten better but I did end up getting a pain block this past Friday.  Not sure if it worked or not.

A couple of nights before Christmas, one of my daughters and I had a fallen  out.  Because of my health there were some changes made with my job.  One of which was a huge pay cut.  This daughter of mine loves to go out and shop when ever she’s home.  I’ve tried talking to her about my job status but it still didn’t matter.  I cut lose on her, which I now regret.  I left the house upset, jumped into my truck and didn’t make it far before I parked into a parking lot and lost it.  I guess it had been building up for a long time and I just couldn’t hold it in any longer.  I’m doing better now I guess.  I haven’t had an episode like that since but I do miss my girls tremendously when they’re away at school.

Got plans to start riding my bicycle next week.  Found a couple of small groups that don’t go too far and are easy rides.  I think I’ll do better riding with someone else verses riding by myself at least till my health really improves.

That’s it for now.

 

 

Update 12/17/2016

17 Saturday Dec 2016

Posted by in Cancer, Family, Photography

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It’s been over a month since I’ve been in the hospital.  I count that as a good thing.  I’m still very fatigued, short of breath, these nitro patches are giving me headaches and I get fairly dizzy when I stand up from a sitting position but other than that I’m feeling pretty good.  I have all my kids home at least for a little while so that’s making me real happy.

MERRY CHRISTMAS EVERYONE.

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

15 Tuesday Nov 2016

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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.

 

Another Round

16 Sunday Oct 2016

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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.