I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: ODAT on March 05, 2010, 05:58:33 AM
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I've been thinking about posting my college science writing paper for a long time. I hope it's in the right thread and that I've done some justice to dialysis.
Kidney Dialysis: Access for Life
In the midst of another sleepless night recovering from the dialysis treatment of the day before, Carole, 76, thought “I’m just going through life tied to a chair.” How, she wondered, had she gotten to this point. Three days a week, four hours at a time, were spent sitting so very still doing dialysis. A few years earlier, she learned she had developed stage two diabetes. Realizing the dangers, she was very careful with her diet and the monitoring of her blood sugar. Unfortunately, even with this level of care, some people can end up with kidney disease brought on by their diabetes. Carole was one of them. Now much of her time is spent going to dialysis, recovering from dialysis, and in between thinking about what would happen if she ever stopped dialysis.
When your kidneys fail, harmful wastes build up in your body, your blood pressure may rise, and your body may retain excess fluid and not make enough red blood cells. When this happens, you need treatment to replace the work of your failed kidneys. For some, a kidney transplant is an option. Because of Carole’s age and other health issues, she was not a candidate for a transplant. That is why her nephrologist (kidney doctor) told her to see a vascular surgeon to “get her veins mapped” to prepare vascular access in order to receive dialysis. “What on earth does he mean I have to get my veins mapped?” she thought. He explained that they had to see if her veins were strong enough for an arteriovenous fistula (AVF). If veins are too small and weak, then a synthetic tube called a graft is used.
Vascular access should be prepared weeks or months before you start dialysis. A surgeon creates access by connecting a large vein to an artery in your lower or upper arm (sometimes placed in leg). The high pressure of artery blood flow allows the vein wall to thicken up and dilate. As the vein enlarges you will see an increase in the size, so much so that it would appear as though a rope is under your skin. If you cannot have a fistula, the surgeon uses a synthetic tube called a ‘graft.’ A graft is a piece of synthetic tubing that is inserted under the skin and sewn to a vein and an artery. As with the fistula, you will notice the appearance of the graft below the skin. The access is necessary so two needles can be inserted and connected to the dialysis machine. Patients must have dialysis three or four times a week to remove toxins. The dialysis machine filters out waste products from blood removed by one needle and returns the purified blood through the other needle.
A fistula is the best approach to receive dialysis if your veins are large and strong enough and there is time to prepare it. Unfortunately, fistulas take months before they are ready to be used for dialysis. A graft does not need to develop as a fistula does so it can be used sooner, often within two or three weeks. “Fistula, graft, dialysis?! I am feeling fine, what’s his rush?” Carole told her family. Six months passed since her doctor told her to see a vascular surgeon and she still had not made the appointment.
Unfortunately, she needed a knee replacement and the orthopedic doctor refused to do the surgery for fear that emergency dialysis might be needed during the operation. “I don’t understand, what could possibly go wrong that I would need dialysis during surgery? Is there something they are not telling me?” Carole worried. The doctor told her that the longer a kidney patient is under anesthesia, the more damage is done to the kidneys. With brief anesthesia, these changes reverse within a few hours, but prolonged anesthesia can cause renal dysfunction that lasts for days. More than 30 percent of surgical patients who suffer renal failure die from it. Only then did Carole realize how important it was to get the access and be prepared long in advance to actually needing to start dialysis.
Doctors do not like to perform emergency surgery to place a dialysis access point in kidney patients. Chest catheters used for emergencies are temporary and there is a high risk of infection. Not being able to have her knee surgery, whether she liked it or not, Carole had to make that dreaded appointment with the vascular surgeon. Now she had to acknowledge that dialysis would someday be a part of her life. After the mapping of her veins was complete, the vascular surgeon determined that Carole’s veins were too small and weak to support a fistula. He would have to implant a graft in her left forearm. Patients do not choose the access point to receive dialysis. The patient’s veins dictate the type of access. They can only choose the way they receive it, either at home or in-center. She discussed a long time ago with her nephrologist how to get dialysis treatments. Based on all the information her kidney doctor provided, Carole decided that in-center hemodialysis would be best for her.
Hemodialysis is performed at a dialysis center. A special filter removes wastes and extra fluids from the blood. The clean blood is then returned to your body. “In order to perform successful dialysis, it is critical to have a functioning vascular access,” said Prabir Roy-Chaudhury, MD, PhD, associate professor in the division of nephrology and hypertension at the University of Cincinnati (UC). Unfortunately, these connections may only last between six and 12 months due to stenosis, or narrowing of the veins. As a result, hemodialysis patients often have repeated hospital admissions and surgeries in order to keep their dialysis access open. In fact, problems associated with vascular access are probably the biggest factors that reduce the quality of life for hemodialysis patients, according to Roy-Chaudhury. “Hemodialysis vascular access dysfunction is viewed as the Achilles heel of dialysis,” he noted.
There are advantages and disadvantages to all types of vascular access. A fistula is the best choice because it can last many years and has less chance of infection, higher blood flow rates, and fewer complications. The disadvantages of a fistula are that it takes longer to mature (develop), and it may fail to mature due to other health issues. Patients with special health issues (such as weak veins), or who may need dialysis as soon as possible have a graft. Grafts can be used in as little as two weeks. The disadvantages of a graft are clotting, infection, swelling, the need for frequent interventions, and the possibility it may affect blood flow to the hand. Catheters are for emergencies and are only temporary. For some patients, fistula or graft surgery is not successful, and long-term catheter access must be used. Catheters that are needed for more than three weeks are designed differently than those used for emergency situations.
Scientists are working on the creation of new blood vessels from patients' own cells. That tissue-engineering development could one day help people with blood vessel problems, but the process is not ready for prime time. The developers described their early tests in The New England Journal of Medicine. First, they gathered cells from the skins and blood vessels of 10 adults with end-stage renal (kidney) disease. Next, the scientists put those cells in test tubes (keeping each patient's cells separate from the other patients' cells) and coaxed those cells to grow into blood vessels.
After making sure that the lab-made blood vessels wouldn't burst under expected conditions, the researchers implanted the tailor-made blood vessels into the patients. So far, results are available for the first six patients, who got their tissue-engineered blood vessels more than a year ago. One of those patients died of unrelated causes. The lab-made blood vessel failed in another patient. A third patient used the lab-made blood vessel for more than 13 months until receiving a kidney transplant. The three other patients haven't had any problems with their engineered blood vessels. According to the article, written by Nicola L’Heureux and Todd McAllister who work for Cytograft Tissue Engineering in Novato, California, those early results show that "this new approach may be feasible."
Renal failure is a truly ugly disease and accessing and maintaining a fistula or graft for dialysis is a problem in itself. Patients undergo continual needle pokes and surgical revisions, and are never free from machines that require three to four hours of their time three to four days a week. Most people would revolt against such abuse, yet seldom do they - and some, like Carole, accept it all with a peace and serenity that is almost gracious. So far there have been no problems with her graft. At the dialysis center, the nurse hooks her up to hoses on a machine that lead to a pair of 15-gauge needles that are stuck into her arm and taped into place. As she reclines in a chair, Carole watches her blood slowly pump in and out of her body through a machine that rids it of the toxins that would kill her if she didn't submit to the life-giving therapy. "That's my kidney," she says pointing to a cylinder on one side of the machine. "That's what keeps me going."
Moved From Spouses Caregivers to Dialysis General Discussion - Rerun, Moderator
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Very good ODAT. May I print this off and give it to my friend's father who insists that I must have a shunt in my arm?
(I have an AV Fistula)
:thumbup;
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Absolutely.
Take care
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Well done! :thumbup;
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May I make just one comment? Please feel free to completely disregard this. Would you please think twice about including the bit about how seldom people would revolt against such abuse and how some even accept it with a "peace and serenity that is almost gracious?" If you are going to comment on the psychological status of people starting/undergoing dialysis, you need to know that it is far more complicated than this. I don't know why, but we tend to ascribe bravery to the chronically ill that they really do not feel. How often do we read about the "brave" cancer patient or the "courageous" quadraplegic? Many years ago when my autistic son was young, the mothers of his "normal" classmates would breathlessly tell me how "brave" I was. They didn't see me at 3AM when I couldn't sleep because I was so heartbroken that my baby would forever be handicapped. I think that people describe the chronically ill as "brave" because of their own fear of how they would react if such a terrible thing happened to them. It's a protection mechanism...this awful thing happened to that person because she could handle it, but it won't happen to me because I wouldn't be able to be "brave" like that person is. I don't know if this makes sense, but I'd for you to perpetuate that image of the brave, suffering victim. I can tell you that I'm going to have to have a fistula done within the next few weeks, and then I'll have to endure dialysis, and peaceful, serene and gracious are not adjectives I'd use to describe my mood. I'm not telling you to remove that part of your paper, but I do suggest you give it a bit of extra though. Or, perhaps you could include more information on how people cope with the emotional assault that is dialysis. Thank you for your time and for your interest in the topic. I'm sure you will educate a lot of people.
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Thank you Odat. That was wonderful. It will be good for friends and family of D patients to read. Hope your mother is doing well.
Love, Mimi
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MooseMom, very good point. I've never thought of that before. People tell me I have a good attitude about being on dialysis. I know! What the hell are they seeing? Because I'm not laying in a puddle of tears on the floor? Well, I have. I don't have a good attitude about dialysis and I think that is what keeps me fighting. Once I give into it then it has won. I know I have to do it but I hate it. It never stays the same there is always a new problem.
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One patient's "good attitude" might be another's achilles' heel. Some people need to fight to survive, others need peace. Some need to be in control and involved, and other's need to trust in another person and hand over the reins. In my experience, when people describe you as "brave", what they are really expressing is their gratitude that you are keeping your rage and grief to yourself so as not to make them uncomfortable.
We all find some equilibrium, some way to stay sane and to find value and joy in our lives despite the hardship. Most people have a cross to bear, whether it is dialysis, cancer, an autistic child, an abusive parent or some other challenge that can be destructive if care is not taken. But that equilibrium is not always one of grace or serenity.
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Very good thoughts. This paper was submitted months ago. My comment on the acceptance is just that. My mother "accepted" that she has to do dialysis. She doesn't like it and has had her complications. She is going in for another graft on Thursday and is scared as she is with any surgery. Face it, the last surgery she had put her in kidney failure and that's when she started dialysis - the day after her surgery. She was involuntarily twitching and couldn't think straight. Took two days of dialysis for her to return to herself.
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Oh ODAT, the same thing happened to my mother! She had been experiencing leg cramps for quite some time, and she kept going to the doctor about them. Then one day, she was having lunch with a friend who used to work as a medical secretary for a practice of renowned vascular surgeons in the Texas Medical Center. My mom happened to mention her leg cramps, and her friend suggested she consult one of these vascular surgeons. She did, and they found an aeortic aneurysm. She had surgery to repair it, but unfortunately the surgery resulted in a complete loss of renal function, and while she was in ICU still recovering from surgery, she had to have a catheter placed and has been on dialysis since. I've watched her struggles very closely because I knew that one day, I myself would be on dialysis. So I can imagine what your mother has been through. I hope she is doing well.
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My comment on the acceptance is just that. My mother "accepted" that she has to do dialysis.
A woman asked me if I didn't think "I hate dialysis" was too negative a name. I said if someone says, "I hate the dentist" no one bats an eye, they all get it. It's necessary, but we don't have to like it, just like the dentist (except the dentist is much less frequent and you won't die without it!)
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Just wanted to share that the phrase "I'm just going through life tied to a chair" didn't magically come to me - Rerun's avatar provided that glimpse of reality.
Mom doesn't share much about dialysis. I know each day when she gets home from dialysis she cries. She is tired and drained from sitting so long and worn out from the process. I talk to her and tell her not to hide her feelings because it will take more out of her than releasing it and sharing it. The reality of life on dialysis is more than people not on it can comprehend.
The procedures themselves are overwhelming. It's scary how much she has been in the hospital. Even if she goes in because of nothing to do with dialysis, she has to stay longer because it causes complications in other ways. Blood pressure is a big one.
I just want her to know that as much as I can feel what she is going through, it is a major life altering condition that deserves as much love and support that we can give. When she looks at me late into the night as I sit by her hospital bed and cries, I ask why, do you hurt somewhere? She tells me that she is sorry that she's in the hospital again and feels bad for me having to be there with her. I tell her that there is no where I'd rather be than with you when you are going through so much.
I'm not my mother's caregiver, I am her daughter. She is a wonderful person who never expected her life to turn out this way. All's I can do is make it better by any means possible.
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You are a wonderful wonderful daughter. Use my words anytime. I gave your paper to my friend's father and he said it was very interesting and he finally understands accesses.
:flower;
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ODAT, I am impressed.