It’s not just a birthday. It’s a MIRACLE John has overcome so many health issues and continues to celebrate birthdays, enjoy family gatherings and watch grandchildren grow. The “birthday hat” is a family tradition – you have to wear it. Christian will be 18 in a few weeks and then we will put it away and start all over next year.
Aside from family and birthday celebrations, we had a lot of chaos in the clinic the last 2 weeks. This was very rare, and it’s stuff you hope never happens! A needle magically came out of the graft during dialysis – think about a murder scene you’ve seen on TV. The force behind the graft is a bit like a fire hose – it’s a vein that has been connected to an artery with gortex tubing so it’s very large and while the machine is on, it has a very high velocity. Even when the dialysis machine is turned off, the blood pumps rapidly out of the exit site because the needles are so big. I got it contained quickly and spent the next 2 hours cleaning up blood. The good news – he did not lose a significantly amount of blood to need a transfusion which I surely thought he would.
Our next excitement was a flood from the 60 liter bag of therapy fluid that fills a cabinet under the dialysis machine. The fluid started coming out from underneath my chair before I realized what was happening. A cap had loosened somehow and there was a lot of fluid throughout the machine. And of course with all of the water, the computers shorted out. We had to have a new control panel flown in and do the installation – I’ve done it before so it easy. The clean up was no fun, but not nearly as bad as cleaning up blood! I told John after the incidents that I will be applying for combat pay. We’ve learned not to say “what next?” because there is always something around the corner. The “ins and outs of dialysis” and most certainly the “ups and downs”.
Young dog meets old dog! Sonny is always welcome in our clinic at home. He loves to come in to get attention from John before and after dialysis. He also comes in to let me know it’s time for dinner or that it’s time to go outside. I’m not sure who is trained more – Sonny or the two of us. He is the best and a wonderful companion to both of us. Can you see this happening in a dialysis clinic or the hospital?!! This is just one of the reasons home care is best for us. Our mantra is “this is the best of a bad situation”.
We ventured out the Botanical Gardens last year when Chihully exhibited his beautiful art amongst natures beauties. Pushing the wheelchair on gravel paths up and down hills was not the easiest, but learned that if we had planned ahead a little bit, we would have been able to rent an electric cart so we could both ride. Now we know! It was worth it and would do it again – the easy way!
This is the top shelf of our second refrigerator in the garage. Next to the OJ is a weeks worth of Albumin or Protein that is infused with every dialysis treatment. Protein is needed for healing. Dialysis patients have a very difficult time keeping their protein numbers up because it dializes out, so you must have LOTS of protein in your diet. If you could eat a dozen eggs for breakfast every day and steak for lunch and dinner, it would probably still not be enough. He receives 63 grams of straight albumin every treatment but still needs to eat at least another 50 grams in his diet. John has lung, liver and pancreas disease due to his Alpha-1 deficiency. Every wound, bruise, infection and illness uses protein to heal faster than he can produce it. The infusions will be necessary forever to keep him well. The IV bags are delivered once a week on ice and are considered “food”. They have a short life even in the refrigerator. If they are left out, the life is shortened to 24 hrs. In front of the G2 is the Alpha-1 Proteinase Inhibitor. A home nurse comes once a week to administer the infusion. This medication will also be needed for the rest of his life. It is also FedEx’d to the house on ice and has a short life. In front of the Alpha-1 Proteinase Inhibitor is Epogen. I give this to John by injection 3 times a week. Due to kidney failure, he is not able to produce enough red blood cells. If his hemoglobin falls too low, he gets very tired (anemia), and worse case scenario he needs to receive a blood transfusion. This has occurred several times. Then the two boxes to the right of the Epogen are short acting insulin and long acting insulin. Both are taken by injection as needed. Close monitoring of blood sugar levels, at least 3 or 4 times a day, are necessary to keep his numbers from going to high or too low.
Then there are daily drugs. We won’t go into that in detail, but there are many. One of meds John takes to remove the phosphorous from his blood because the kidneys can’t, and it can’t be dialysize out is Renvella. He takes 4-6 with every meal. If you have high phosphorous, your bones will get thin and weak and ultimate break. If we were paying a full retail price for this drug, it would cost $9,600 for a 90 day supply. One other renal drug he takes cost $4,500 for 90 days. We are thankful for the financial aid we receive for these drugs because NOBODY can afford to pay these prices. Fortunately, all the drugs in the refrigerator are covered by Medicare except the insulin. We have no grievance with the medical system. It has taken care of us. However, we do not just sit back. We are constantly advocating, watching every action, discuss every diagnosis and treatment with doctors, nurses and each other. Getting old and serious illness is not for sissies!
You are probably saying to yourself, “what the hell is Alpha-1 antitrypsin Deficiency?” Just when we thought we had received all the diagnosis we could manage for a lifetime, a new one came along. During my long absence from posting, John had a heart attack and just to make it more exciting, he had it during dialysis at home. More on that another time. He also broke a hip and had a titanium rod implanted, and another time fractured his pelvis. No he hasn’t taken up skiing, he just went through a period of falling. The worst time for both of us was when he went to the hospital with MRSA. During a 3 month stay, MRSA spread to his spine collapsing L4 and L5. No surgery though – miraculously it fused together on it’s own. And he survived MRSA against all odds.
Earlier this year I took him to the ER again with symptoms similar to the heart attack. It turned out to be a low blood sugar that I was not able to get back up to normal. While he was there, some of his liver test numbers showed signs of cirrhosis. After more tests, more doctors and about 4 months later, the Alpha-1 antitrypson Deficiency diagnosis was made. We were very pleased to learn that there is a treatment for this, but it just maintains his condition. He will receive infusions of the hereditary disorder once a week for the rest of his life. He already has stage 3 liver disease, COPD, and pancreatitis from this condition. Who knew?! You might be wondering how he feels? He feels fine. He always feels fine. He’s got the constitution of a battleship that’s been to war. He’s a survivor. In the photo he’s clotting the site where I just pulled a #15 needle 1″ long with one more needle to go. Yet he’s smiling while the Count looks on, most likely looking for blood .
Below is a brief, but a little technical description of A1AD:
Alpha-1 antitrypsin deficiency (A1AD) is a hereditary disorder characterized by low levels of a protein called alpha-1 antitrypsin (A1AT) which is found in the blood. This deficiency may predispose an individual to several illnesses and most commonly manifests as chronic obstructive pulmonary disease (including bronchiectasis) and liver disease (especially cirrhosis and hepatoma), or more rarely, as a skin condition called panniculitis. A1AD is also more frequent among individuals with Wegener’s granulomatosis. A deficiency of A1AT allows substances that break down proteins (so-called proteolytic enzymes) to attack various tissues of the body. The attack results in destructive changes in the lungs (emphysema) and may also affect the liver and skin. Alpha-1 antitrypsin is ordinarily released by specialized, granules within a type of white blood cells (called neutrophils or polymorphonuclear leukocytes) in response to infection or inflammation. Deficiency of alpha-1 antitrypsin results in unbalanced (i.e., relatively unopposed) rapid breakdown of proteins (protease activity), especially in the supporting elastic structures of the lungs. Over years, this destruction leads to progressive emphysema and is accelerated by smoking, some occupational exposures, and likely by other genetic modifiers of this risk which remain incompletely understood.
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?!