Author Archives: Tim Hughes Living with CML

Happy Birthday To Me!!

16 Friday Aug 2024

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I turned 61 years old yesterday, August 15th. Several years ago, I would have never guessed I’d live to this age. With all the health issues that I had plus being nearly 200 lbs overweight, I didn’t have a lot going for me health-wise. Now that I’ve lost nearly 150 lbs and increased my lifespan by several years, I hope.

I saw my surgeon last week and she’s impressed with the weight loss. She wants me to lose another thirty pounds and then we’ll start talking about maintaining the weight. I’ve slowed down on the weight loss, about a pound a week. I still weigh myself every day and sometimes it gets discouraging but I know I’m losing inches as well. My wife bought me a new belt. The old one wrapped around me about halfway. I’m going to keep it to remind myself never to turn back.

I saw my primary care doctor and we talked about my last labwork. My A1c went from 8.2 to 5.5. My Creatinine levels continue to drop, now at 1.52. I’m no longer in the danger zone of kidney failure. I’m still at stage 3a kidney failure but they’re no longer talking dialisys. All my cholesterol levels are good. There were more green on this last report than red. I haven’t seen these numbers in quite some time.

Simi Annual Checkup

09 Friday Aug 2024

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I had my lab work done for my simi annual check up last Monday. The results are in. There were at least thirty tests performed on the blood work but there are only two that really concern me, Creatinine levels and A1c.

After many years of my A1c being 10+ or higher and 7.2 the lowest, I’m very pleased to announce that my A1c is down to 5.5. According to this report, I’m not even prediabetic any more. I’ll let the doctors decide when I see him on Monday.

My Creatinine levels are still dropping. My last labs from my oncologist three months ago showed my Creatinine was at 1.78. Today’s results showed them to be at 1.52. Still in class 3a kidney failure but it’s getting better.

Three Month Post Surgery Update

25 Thursday Jul 2024

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It’s now been three months since my gastric bypass. Since April, I’ve lost 35 pounds. Since the first picture was taken in 2003, 135 pounds. I’m now on 7.5mg of Mounjaro which has been a big help in losing weight. It’s also been a big help with controlling my blood sugar. My sugar still spikes but it comes down without having to take any insulin. I go to my GP in two weeks and I’ll do the blood work to see how good it’s been. I haven’t had a soda in three months, or sweets in four months and to be honest, I don’t really miss either one.

I’m still in my boot and I hope, according to my orthopedic doctor, in three months I’ll be able to get rid of it and go to a regular shoe with special inserts. There will be a list of do’s and don’ts that I’ll have to follow and I will follow that list to a T.

Update: May 26th One Month Post-op

26 Sunday May 2024

Posted by in bariatric-surgery, Boy Scouts, Cancer, Diabetic, diet, Disability, Leukemia, Weight Loss

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Thursday, May 24th was one month since my gastric bypass surgery. I’ve lost 35 pounds. I’m eating way less than before surgery which is to be expected. So far, I’ve not experienced any sickness.

The doctor has taken me off of all my insulin and put me on mounjuro. (Sp) It’s a once per week injection of 2.5 mg for 4 weeks. I’m not sure if they’re going to up the dosage after that or not.

If I’m still in my boot and not in a cast, I’m planning on going to Summer camp with the Boy Scouts. There is no way I can hobble around the campgrounds in this boot so I’ve purchased a used mobility scooter. I had to drive 3.5 hours one-way to get it. I just couldn’t pass up the good deal. I’ll find other uses for it I’m sure.

This Boot is Made for Walking

18 Saturday May 2024

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I’m sure I’m not the only one to have to go through the experience of trying to walk in one of these Crow Boots but let me tell you, it’s not for the weak.  I drove myself to a men’s Bible study this morning. I walked to my truck, took the boot off and put on a tennis shoe. Once at the church I replaced the shoe with the boot. With the cane in hand, I walked to the outdoor pavilion where the Bible study was held. I made it fine but this low iron condition I have didn’t make it any easier. I had visions of doing a lot of different things once I was able to walk but I’m just so fatigued. Hopefully I’ll get an iron infusion next week. That should help with the tiredness.

My boot is made of hard plastic with foam inside. It’s made of two pieces. My foot goes into the main bottom piece and the top layer snaps in place and is held together with three Velcro straps. I’m told that I have to wear it all day with the exception of taking a shower and sleeping. Should I be driving? Probably not, but, I’ve had it with my wife’s driving.

I’m really not sure just how long I’ll be in this boot but from what the doctor said I could be in this boot at least 14 months. It’s not bad considering I could be dealing with an amputated foot.

Update: Post-op Day 20

14 Tuesday May 2024

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On the day of my surgery, I weighed 260 lbs on my bathroom scales. That number is off because of my leg cast. This morning, after a cast change, I weighed 253.8. Nearly 7 pounds gone. But, on the day I started my diet in preparation for this surgery, I weighed 291 pounds. That would be 38 pounds gone. I’m happy so far with the weight loss.

Four of the five incisions have nearly healed. The one above my belly button still has the glue and looks rough. I’m assured by the doctor that everything looks good. I have an appointment with my surgeon’s coworker next week as my surgeon is on maternity leave. There are a couple of things that I need to discuss with him. The most important item is my iron levels have dropped dangerously low. I’m taking iron supplements so I’m waiting for my oncologist to call with an appointment for an iron infusion.

Although my iron level is low, I don’t regret having the surgery at all. The weight is coming off and I haven’t seen these numbers in several years. I haven’t had a soda or tea in three weeks, nor do I miss them. I was drinking six to eight Diet Dr. Peppers in a day. I replaced them with Sprite Zero after I realized the sodium content was lower in the Sprites. But still, I drank way too many sodas in a day.

I’m still waiting on my Crow Boot. I went to the orthopedic doctor yesterday hoping it had come in. I was told next week maybe. They put me in another cast and not a Moon Cast. Meaning I can see my toes now. By the time my Crow Boot comes in it will be four months in a cast. It has been a nightmare! I’ve mastered going down the stairs but coming back up sucks. Lately, I’ve been crawling up them. I don’t get out of breath nearly as bad doing the crawl. I don’t go anywhere I don’t have to go to. Well, I went to Bible study this past Saturday but that was just to get out of the house for a little while. My wife is not the best driver I’ve seen. She acts like a sixteen-year-old being behind the wheel for the first time. She over-corrects every move she makes. She literally scares me to death. She will make a fifteen-minute drive last over an hour because she doesn’t do interstates. Don’t get me wrong, I love my wife I just can’t handle her driving. She’s an excellent caregiver and I tell her that nearly every day. In fact, when I do get my Crow Boot, I’m taking her to the beach or to the mountains for a few days to show her my appreciation.

Update: Post-Op Day 6

30 Tuesday Apr 2024

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The day of the surgery started off on a bad foot and it didn’t end there. First of all, I was told to be at the hospital at 5am with a surgery time of 9am. At 5am it’s dark and my wife can’t see to drive in the dark so I asked if we could move the surgery time to a later time. 7am was the latest that I could get there and still have the surgery. We arrived at 6:30am and were told that I was way early and my surgery wasn’t scheduled until 1pm. There was nothing to do but wait.

A little after noon, I was finally called back. My wife and I were sent to a pre-op room where they tried three times before they were able to start an IV. I was asked several questions regarding my meds and my health. I was given a gown and told to undress and slip on the hospital gown. I was allowed to say my goodbyes to my wife and was rolled out of that room into the surgery room where I met at least three more nurses who introduced themselves and I don’t remember anything after that.

I was awakened by one of my nurses yelling my name telling me to wake up. I remember them saying that my oxygen was low and they were trying to get my bi-pap working. They were having a hard time because the had the hose hooked up backwards. In my drunken state, I had to try to tell them they had it hooked up wrong. Why they didn’t put me on oxygen I’ll never know.

One of the things I had asked the surgeon to look at while she was in my belly was a hernia. She informed me that her main goal was to do the gastric bypass and if she had time she would look at it. Well, that changed. Once she got into my belly, she found that my gallbladder was about to explode. It was full of inflammation and was bleeding. It was surprising that I hadn’t had any symptoms. The first step was to remove my gallbladder. With the gallbladder removed she noticed that my stomach had risen up into my esophagus. She then had to fix the stomach issue. Once she did that she fixed the hernia then she proceeded to do the gastric bypass. The surgeon told my wife that I was one sick puppy.

During surgery, they had to run a tube down my throat. I’m still coughing from that. My incisions are still a little sore, all five of them. I’m still in the liquid stage of my diet and I should start to be able to eat pureed food on Thursday. I’m so looking forward to that. I can’t tell if I’m losing weight because of the cast. I just had a new one put on yesterday and it feels heavier than the others. The orthopedic doctor fitted me with a Crow Boot yesterday so hopefully, I’ll graduate from a cast in a couple of weeks to a month. At least in a Crow Boot I’ll be able to walk some and climb stairs better than I am now.

Update April 22nd, 2024

22 Monday Apr 2024

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My gastric bypass surgery is this Wednesday, April 24th. It was originally scheduled for last Wednesday but COVID hit. I am having waves of emotion. One minute I’m excited the next, I’m nervous as a cat in a room full of rocking chairs. But, all the benefits outweigh the negatives. I think my wife is more nervous than I am. Granted, I know this will be a life-changing experience with a new diet and a new way of looking at my life. An extended life I might add.

Stay tuned for more updates.

Update: April 2nd

02 Tuesday Apr 2024

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It’s been a while I know.  A lot has been going on so hold on to your hat.

Monday, April 1st marks the 10th week that I’ve either been in a splint or a cast.  This is my third hard cast since I was put in one.  I have a problem with either the cast getting wet, broke or both.  I’ve had several x-rays and I’ve been told each time that my foot is healing but has a long way to go.  My foot is still swollen a little and it looks like a lizard with all that dead skin just hanging there.  I did speak to the doctor and if everything continues as it has, I should be able to be put in a Crow Boot in about two months.  At least with a Crow Boot I should be able to walk on it some.

It’s like I’m a prisoner in my own home.  I live in a split foyer home.  When you walk in the front door you must either go up or go downstairs.  Seven of them to be exact. Going downstairs is not a problem.  I simply grab ahold of the banister and the handrail and hop down the stairs.  Going up is another issue. Right now, the solution is to use a walker with the front legs adjusted to the step above and hop up the stairs.  I’m exhausted by the time I make it up the stairs.  This is the reason I don’t go anywhere other than for doctor appointments. 

My gastric bypass surgery has been approved and my surgery is scheduled for the 17th of April.  I have to start my liver shrink diet on the 10th and my 2-day liquid diet starts on the 15th. If I told you th.at I wasn’t worried I’d be lying.  There’s a lot to consider even after the surgery. Just my doctors and my immediate family know about it.  None of my friends or even my parents don’t know about it. The reason?  I have a couple of family members that have had this surgery and they are bigger now than before they had the surgery.  Simply put, they gave up on themselves.  I have a point to make.  I’ll eventually tell them after I lose about 100 lbs.

Another reason I’m doing the surgery is my health.  If everything goes well, I will no longer be a diabetic and I will no longer have to use a Bipap machine to sleep.  The money I’ll save no longer using insulin will more than pay for the vitamins that I’ll have to take.

Stay tuned for updates after the surgery.

February 16th Update

16 Friday Feb 2024

Posted by in Cancer, Diabetic, Disability, Weight Loss

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Sporting a new cast, but the latest x-rays reveal my foot is in bad shape. The bones have become brittle and deteriorated, with multiple fractures and breaks. However, the good news is that they can save my foot, though it will take up to 18 months and require special shoes afterwards. I have to be really careful as to not damage my left foot as the bones have become brittle as well.