I can’t believe it’s been over 4 years since I’ve posted anything. It’s not that there hasn’t been anything going on! I think I put it on hold when John went into the hospital and did not come home for 3 months. Whew! That was a close one that, fortunately, had a happy ending. We spent nearly a year rehabing and getting him back to health. It will be impossible to go over all that has happened in the last four years, but I’ll handle it like you would eat an elephant – one bite at a time. I’ll post photos from the past and tell stories about our life with dialysis. It has all been an adventure with ups and downs, ins and outs. Working a website is not my forte – I’d much rather draw you a picture or knit you a sweater, but I’ll do the best I can.
As you can see by this recent photo – he is still happy and up for just about anything. He’s an amazing man with many dimensions. Stay tuned for more stories and photos.
Bray just turned one year old and met Grandpa for the first time. Here they sit in the clinic while we get ready for a treatment. I have to say it was love at first sight for the two of them, but who wouldn’t just love to get their hands on this child?! He is the happiest, most secure child I’ve ever seen. And look at those lamb chops for legs! We had a family gathering with grandchildren ages one to 13 and all three of my children. While they might wear you out, they also keep you young at heart. We had a record high of 112, but the swimming pool gave great relief. The little ones love it as does our Schnauzer Riley. Our treatments went well while the brood entertained themselves, cousins played together and kids reunited. Photo album to follow.
June 21, 2001
Tradition in our house means family celebrations, BBQ’s, home made gifts and lots of laughter. The last celebration we had involved cream pie in the face of 3 kids. This one was relatively tame involving personally designed underwear. These unique and one of a kind gifts have been highly anticipated gifts for the fellas in our family, and this Fathers’ Day was no exception. The grandchildren love to use fabric markers to add a design, say something cute or rude. I remember when they would draw hearts and flowers and say something sweet like “I love you”. As they grow older and more wise, they draw pictures of skulls, little explosions or targets, and say things like “you stink”, “this is a number 2 stain”, or “kick me”. They have all learned to have a wonderful sense of humor, take life lightly and laugh a lot . . . . . even at themselves. In the photo, John proudly displays his new underwear to add to his collection of many.
June 5, 2011
We are on to the next phase of healing for John’s fractured wrist and an arm that has been immobile for 6 weeks – physical therapy twice a week. The first photo is Lynn playing nice – the hard stuff is yet to come. It’s amazing how muscles can atrophy and tendons tighten in such a short time.
John starts playing the games – it’s a lot harder than it looks! Moving a wooden bead from one end of the wire while keeping your elbow on the table is a challenge as is finding 50 marbles in a tub of corn kernels when muscles and movement is compromised. At least they make it fun so that it’s not just another pretty face and a painful experience.
The last photo may look like John is praying for relief . He is simply stretching muscles that have tightened like rubber bands. As soon as he gets some strength and movement . . . it’s back to the gym for workout. Shhhhhh . . . . don’t tell him. He doesn’t know yet that this is his reward!
Notice the Tootsie Pop in Lynn’s mouth? Candy Man strikes again.
May 26, 2011
We have recently tried something new with our dialysis treatment schedule. John dialyses 5 times a week for about 3 hours. Add another hour for prep and clean up. We usually do treatments three days on, one off, two on, one off out of seven days and it works well. If we have something going on in the evening, we start in the morning, if we have something in the morning, we start in the afternoon. But one thing we’ve never done is dialyze in the evening. I’m not really sure why, but our thinking was that we would be tired in the evening, and we are used to kicking back. About a month ago, it dawned on me that we did absolutely nothing in the evening but sit around. It’s too late to start projects or go anywhere. John generally dozes off and on and after sitting for 4 hours in one position in a recliner . . . . who wouldn’t?! So we now start between 4:00 and 5:00 and are done by 9:00 or so and go to bed. Now if that doesn’t make more sense!!!! The first few treatments were a little strange – we didn’t know what to do with ourselves, waiting until 5:00 to start. It didn’t take long though, and we feel as though our days have been liberated. We still have the option of starting late or early based on our schedule, but it’s opened up a whole new world of daytime activities.
My days of working all night as an artist have long past. When I was in business for myself, I didn’t get much sleep. Working nights was my most creative time! But now, even though I am working for fun, I like working during the daytime hours. The photo is my latest production of what I call my “Dawls”. They are made from repurposed wool sweaters and yarn. They become little people and take on a life of their own. I name them and adopt them out. It’s been fun. I wish I would have counted how many babies I’ve made (not what you think) . . . . . but it is probably well over 100 in the last 3 years. What woman in her right mind would do that?! It’s easy, they don’t talk back, they are cuddly and sweet and never grow up. So this is how I will spend some of my new found day time hours.
John loves the computer and reading about just about anything. He’s a curious man with a very sharp mind. He easily fills his day satisfying his curiosities and learning on the internet. We both love being home and feel every day as though it is a “bit of paradise” on earth. We languish over coffee and breakfast in the morning, let the dog swim a few laps (Riley loves the water!) and finally go back into the house and begin our day. It’s easy to spend 2 or 3 hours on the patio in nice weather – it’s usually the heat that chases us into the house. And we still have a full day to do as we please. Why did it take us nearly four years to figure this out?!
May 25, 2011
It seems things come in threes . . . . there have been no more injuries or accidents. The wounds are healing, but the bone is going to be a slow heal. Still in his removable cast, the wrist continues to be sensitive to movement. He sees the bone doctor on Thursday for X-rays so we’ll see what the prognosis is then. He still has a good story about falling, tripping and nearly knocking himself out. Here he is explaining to Katie, age 9, what happened. Do you think he might be embellishing just a little bit? Poor Grandpa!
Another graft tuneup yesterday . . . . those of you that have been following our story know that this is a regular thing – we’ve done this many times. The graft narrows in areas and makes cannulating (sticking fricking gigantic needles into his arm!!!!) even more difficult. Every 3 months of so we head to the surgery center with a bunch of candy. Here is Dawn, aptly named for the ray of sunshine she brings to the day . . . and loving her candy stash. You can see why John is always smiling – the nurses are beautiful! Jamie, checking him in to the OR has worked for AKDHC for ten years. They always make this most unpleasant situation a game for us that’s fun to play.
April 28, 2011
Some people will do anything to get out of working out. After John’s fall and fracture of his wrist, he cannot continue his workouts until he’s healed. However, he’ll not get off that easy – I don’t think he broke either one of his legs! Half a workout is better than no workout at all! He ‘s very accustomed to me prodding him about his health and diet – sometimes with a sharp stick! He thanks me for it nearly every day.
The photos are of me working out with our trainer/son, who has been working with us since August of last year – 9 months ago. These workouts are amazing. Just 15 minutes per week of high intensity training adds muscle quickly. In my past I have worked out with a trainer (3 or 4 times per week) or on my own for many years, been an avid cyclist, jogged, played racquetball and stayed active most of my life, but this tops all of them – even at my tender age of 63. The muscle building opens your world to more activity, fighting disease with more strength, looking and feeling better. Other exercise should be done in between like walking, bike riding, moving in any way that works for you. But with the new found muscle, it’s just easier and more fun.
I will add this about being a care partner. It takes strength – lots of it – to get through the many ups and downs that comes with fighting disease or helping your partner fight disease. Your willingness may be the only thing you have control over, so why not be willing to take care of yourself. If you are going to have aches and pains one way or the other (we all do!), why not have them from adding new muscle and adding quality to your life. Another bonus is I have lost 20 pounds over this last year. It’s better for my arthritic joints and makes moving a whole lot easier.
I’m developing a website for my son for his personal training business. If you want to know more about the high intensity training (HIT), visit www.idealexerciseaz.com. His method and scientic approach is unconventional but effective. I call him my HIT Man.
April 25, 2011
He would like to say he got into a bar fight, or “you should see the other guy”. But the truth is he fell down in the garage hitting the floor first with his head. He’s been called hard headed by many, but in this case it was a good thing. Another trip to the ER for scans and X-rays, but not before we do a treatment. By 7:30pm we were in the ER and walked out at 10:30. Aside from the cuts, bumps, bruises, sore bones and humiliation, the most serious was a fractured wrist. An orthopedic doctor will look at it this week and will most likely apply a cast. As you can see in the photo, his spirits are good as always, and the Percoset is helping with pain. Do you think wrapping him in bubble wrap would help?!
April 16, 2011
Long absence. No excuses. I just took a break. John and I are both fine. That does not mean we haven’t had our bumps. Life with dialysis is full of ups and downs. The downs generally consists of health issues. Otherwise, we have a relative peaceful life. We have much to be grateful for – each other, our family and our dog! I will post a few photos of the fun times we’ve had since I last posted. Next time I’ll get back to more specific subjects. Enjoy!
March 8, 2011
I’ve posted many articles about going to the Arizona Kidney Disease & Hypertension Center for what we call a tune up or a repair on the graft. We had an unexpected trip to the surgery center this last week, just 3 weeks after the last one. It is commonly done about every 3 or 4 months to keep the access in good working order. However, stenosis, or narrowing, of the graft can occur at any time. There are warning signs such as difficult cannulation or excess bleeding. We had difficulty over the weekend so showed up on their doorstep at 6:45 a.m. Monday morning, candy and treats in hand, and waited our turn. As always, the staff was gracious, lively and to task.
The first few photos were taken by me (Dawn loves her candy!) and the rest were taken by an operating room nurse so we could use them in our blog. She did a great job and shot the procedure from beginning to end . . . scrubbing and sterilizing, anesthetic, inserting fiber optics into the graft and taking X-rays to find the narrowing. The last photo is the venogram unit taking X-rays to see if the balloon (venoplasty) was successful opening the graft. The graft is made of gortex and is about the diameter of a pencil. Gortex does not heal itself, but the body does the best it can to heal itself over the punctures from the dialysis needles used every day. It is truly amazing how the body defends itself as the needles are about the size of a fork tine. As time goes on, they may need to do a stent or even a new graft. One day at a time!
Click on photos to make them bigger.