How to Deal with a Chronic Disease
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I Have a Long-Term Kidney Disease that will not Disappear
I was so disappointed.
The doctor I had been seeing for nearly three years had dropped me as a patient for no reason. He didn’t have an excuse for me. He would only say that my new doctor would be my specialist from now on, and it would be easier for me to travel to his office.
I was disappointed that I did not have a say in my choice of doctors because as a patient, my health plan allowed me to always have my choice of doctors. Over the years, my former doctor did not tell me that I was a possible candidate for kidney dialysis or a kidney transplant in the future. He only told me that he would see me in three months. Those three months turned into three years of going through the motions. He had nothing to tell me. Or maybe he was keeping something from me?
By my second appointment, my new doctor had already sent me to take a number of blood tests. What I didn’t expect were the classes on kidney dialysis and kidney transplants that I was assigned to take with his other patients. He had given me a new set of medication and suggested that I talk with a dietitian to plan my meals. I was now looking at controlling my diet and watching my sodium, potassium, and phosphorus levels.
There were times I’ve come close to death. I’ve been thrown off a green broke horse. I’ve wrapped my car around a tree and walked away. But knowing I had a chronic kidney disease was different. It wasn’t something you experienced, and then walked away from to continue your life.
How do you deal with any chronic disease?
No matter what it is, you deal with it. You certainly don’t deny that you don’t have it. A chronic disease last for a period longer than three months. It is considered long term.
When you hear the news, allow yourself to cry, grieve, and get angry.
You don’t want this, but don’t dwell on why you have this disease. Don’t lay blame on genetics or some event from your past. Quit asking why this is happening to you.
Accept what you have.
It is what it is. Don’t plan on a quick fix like hopping a plane to Lourdes or trying remedies that could be a risk to your health. Stick to the healthy basics when it comes to sleep, diet, exercise, and the health care needed to treat you.
Work with your doctor.
You may not like the news, but listen to your doctor and follow his instructions. If you have any questions, always ask your doctor. You can always ask for a second opinion. If you can’t work with your current doctor, find one you can work with. You need to feel comfortable with your doctor.
Make the necessary lifestyle changes. Making some changes in your habits and lifestyle could make a big difference in your health, so make an effort to change. You don’t have to change overnight. You will have to want to change. Once your make the decision to change your habits, start with baby steps. Remember that a lot of people did not follow their doctors’ suggestions to quit smoking, start exercising or change their eating habits. If they did and stuck with the program, there was a chance they still would be alive.
Learn all you can about the disease.
Don't be in denial and stay in the dark. It helps to know what caused your illness and what is being used to cure it. What you learn about your disease can be helpful to family members or friends if they suffer from the same disease down the road. Having a chronic kidney disease means being open to learn about the types of kidney dialysis and the possibility of a kidney transplant. You may not need these procedures now, but you may need them in the future. You need to stay current when it comes to the disease, and it helps to know what medical treatment is open to you in the future.
Meet other people who have your same disease. It could help to know that there are other people who are waiting on transplants and multiple transplants. It is also helpful to speak to people who have gone through dialysis or transplants.
Don’t be afraid that you will die from this disease.
Always stay positive and don’t spend your time worrying if your time is up. If you know time is on your side, make the move to learn all you can so you can take care of yourself. Knowing that you have a chronic disease is a plus. Knowing this, you can act on it.
Will you tell support system?
That’s up to you. It always helps to have a support system of friends and family. The people close to you may notice the change in your habits and wonder why you are going to the doctor more often or are taking more medication. They will notice the change in your energy levels. Be honest when they ask questions about your health. Only you know who will take the news well, and those who will pity you or go into a panic and treat you differently. You don’t want pity. You want understanding. If you do choose to tell anyone, choose wisely.
There is always hope.
I am on a list to get a kidney. Hopefully, I will get one by the time both of my kidneys fail. I am the one who calls the shots, here. My doctor assured me that I make the decision. I decide whether or not I begin dialysis or wait a few years for a donor's kidney.
As long as I am not weak and can move around, I will continue with my life. I will do nothing but carry on. This is what I want for me. I don't want or need pity.
It is always helps to stay positive. When things look bleak, don’t hesitate to talk to family, friends or professionals about your fears.
You are not alone.
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Well, Arlene. I keep coming across and reading the hubs you write. Guess I'd better become a fan. (lol)
Nicely written hub. It will give a ray of hope to people caught up in similar situation. I am a similar sufferer, with the difference that mine was a genetic condition detected early in life - so that I got more time to handle it all, and children are always better equipped. :) Arlene, I would give maximum weigh to the first two points and then the need to know whatever you can about the disease. That makes you comparatively feel in control of the situation. I wish you good health, dear Arlene.
It sounds like you have a very positive attitude to disease, and these will be useful points for anyone in the same situation. Not denying the disease is very important, as is meeting people with the same disease.
"Even death is not to be feared by one who has lived wisely." Buddha. Two of the major events in life birth and death. All know one day we are going to die. But the pain, you know you are going to die and waiting for death to come over slowly day by day.
One of the ways to deal with challenges is to stay positive. What is important is to realize that you have to live with the illness and start looking for ways to improve your life. Remember that it takes less effort to smile!! wish you good health and clicking the following button to be your fan.
rated the hub up^^^ and useful one for those who are coping with chronic diseases.
wow Arlene with such a vibrant spark in your writing, I would of never guessed. Great tips and points here, and just by knowing you through the site, I am sure you will cover all bases with your new doc.
Cindy, the doctor was this older gentlemen, and his focus on me was gout. Which is very common in my family. So the whole time, it was about gout and gout medication. I knew was something was up when all of a sudden he wanted a kidney biopsy. At the last minute, he passed this procedure to another doctor. Instead of telling me that he no longer had the knowledge to help me, he passed me to a new doctor right out of med school. I didn't like how he did it, but I'm glad I have my new doctor.
Thanks, Sue. You might say when you start running out of things to write for the 30/30 Challenge, you start grabbing for issues that can get personal. Hahahaha! Just kidding! It's not that I can run away from the news of having a chronic disease. For one thing, I'm no runner. So I work with my doctor and deal with it.
Thank you for your comments and insights, sen.sush. I am 53, so with the news of this chronic disease, a lot of my questions from over the years have been answered. I am told that mine is the kind which stretches over time. And if I had been diagnosed as a child, I would have been a goner by now. So they say. Sometimes, the symptoms don't stand out for anyone to catch. I don't have children, so it's all about me. Sounds like you've got a handle on your chronic disease. I wish you well, too! I know it's never easy.
Melovy, when I attended my first class, I met a man who was waiting on a kidney and a pancreas transplant. I didn't know there was such a thing as a pancreas transplant. He was also suffering from diabetes. Then I met the heart patient who could not go to In and Out Burgers unless the burger was stripped down to nothing. Something about the way it was cooked? Plenty of sacrifices and changes need to be made in most cases. Changing my eating habits wasn't all too hard. I still have to force myself to eat breakfast!
So true, Philipuae. In my family, I've seen people go quickly, and I've seen the ones who linger. I just want to take advantage of each day I have.
dinkan, thank you for the comments, the vote up, and the follow. I volunteered at hospitals when I was younger, so I got to see a lot of positive and negative people. Attitude is everything. I did dread stepping into a room when I knew a patient was very angry at the world for the cards he had been dealt. Some things are beyond our control, but we have to make the best of what is thrown at us.
jenubouka, this chronic disease that I have has given me a major attitude adjustment. I don't sweat anything, and I bypass mean and ugly people. I don't force myself to do anything that I don't want to do. I draw the line at the physical stuff like bungy jumping, the zip or drinking myself to death. My regular doctor told me that we should protect our kidneys and livers as we get older. True. But I do wonder about all these people who have perfect kidneys and livers--only to waste them away on drugs, alcohol or a dangerous activity that will surely bring death. I believe in enjoying your life. I just don't believe in taking risks like jumping out of planes and climbing mountaintops. I'm not bulletproof. And I'm certainly not an adrenaline junkie. I do love a good meal and a good read, though. That's about it!
I wondered if that was the case. He should have told you that when he was sending you to another doctor. I have had to deal with chronic pain since 14 years of age when I shattered a vertebra in my back. So I understand just a little. Keep your good attitude and the smile I see on your face and you've got the battle half way licked.
I think it was a pride thing with him, Cindy, so I didn't confront him after that. I do understand people can only do so much. Maybe he was thinning out his caseload towards his retirement and giving the long term care ones to someone who was younger and more educated. Ouch! Personally, I would have said something to the patient because you know people don't like to be kept in the dark. But that's me. I have medical people in my family, and let's just say they aren't known for their bedside manner. I figured that first specialist was the same way. I am disappointed in the way he handled my case, but at least I now have a doctor that I can depend on.
You got me there, I am/was an adrenaline seeker. Not so much as I get older, too many what if's pop in my head, but I have been known to do a belly flop off a 85 foot cliff from time to time...
You are right about people abusing chemicals that deteriorate their perfectly functioning body's, I have seen it first hand. Although the art of science has a bit of a the part to play as well, some medications rely on the function of you vital organs in order to "help" the issue.
It is actually a bit comical when you see a medication for "restless leg syndrome" and the side effects range from watery eyes, swollen joints, nausea, loss of appetite, weight gain, failure of the liver, heart attack, and stroke.....I think I will just keep my wiggly legs thanks.
You are an inspiration really, not many can stand up for their views or write as fearlessly as you do.
I've been writing for most of my life, jenubouka, so I just do it. Writing can be healing for whatever ails you. If you can talk about traumatic things from your past or present, it's not always because you are good with it. It's because you've come to the point where you accept it. And you hope, through your words, you've helped someone. I spent 10 years working in prisons, so I saw living human waste each day I worked. I'm not wasting my life like these men and women.
Wonderful Hub, Arlene. And this is by no means an easy subject to write about!
Many, many thanks, Simone. Through HubPages, I was able to get over myself and write about hurtful and depressing subjects that I have experienced. Writing is healing if you can write about what bothers you. I am hoping I am helping someone as I write. People with problems tend to keep it to themselves and feel all alone. Secrets, denial and carrying a burden can actually hurt. They can come back to bite you. Acceptance is the key. You don't have to embrace pain or a chronic illness. No one does.
So very true Arlene, I feel that the writing process is a healing one as well. It has helped a great deal for me, and I am fiddling around with a serious tone of composition, but it is a process as I am finding out.
The prison job gets me every time I read it about you, I have to say I do find it fascinating in the sense of being surrounded by human habitat that is of a latter breed. I know if I worked there, I would be running around trying to save everyone. I am sure you have some stories there, and with your no nonsense attitude, oh I am sure there is a bit of humor.
jenubouka, people are fascinated by prison life. Unless you are my brother, who always tells me not to tell my prison war stories at his dinner parties because I could possibly scare his guests. I do it because even though I've been away for years, I did enjoy the job and remember everyting. I learned a lot about myself when I worked the prison system, but as far as saving these people, there was nothing I could do. My mother-in-law works with kids, and she knows that your personality is shaped from the time you are 4. If I could take you to read all those files, the story is the same. It would break your heart to read what has been done to these people over the years. I feel that these files are identical in heartache, and unless you can rise above your horrible past, you will continue to repeat it. Other than giving encouragement or being able to carry on a conversation with little time I had, I am not one to heal broken wings. I don't have it in me. But I do know that the prison system is merely a revolving door and big business in California. It is very sad when you know that the state puts inmates before education, children, and the elderly. Knowing this, it was part of the reason why I wasn't long for the job. But there are those who put in 20-30 years before retiring. I would simply go cuckoo.
That is the frustrating part, the backward ideals of the system. They say 2/3 of inmates came from broken homes although you are very right about rising above your past.
In Norway the inmates are shipped off to a remote island, no cells, no guns, and live in quaint homes and have to learn how to get along with the house mates, learn to cook, learn to read and write, mind you there is no locks, just water. No escapes, no violence, some stay on the island to help other incoming prisoners.
A man that committed murder was given an ax to split wood for warmth, mind you this was the weapon used, no harm was done, he came back with the split wood and the ax.
Would this work here? I can only wish we could give it a try.
Okay that was off the hub topic sorry about that.
Uh--no. I'm talking about monsters. If you gave them knitting needles and expected them to produce charity knitting, they would sharpen the needles and kill each other. I know better. I've talked to many professionals and family members. There are no success stories when it comes to inmates. I don't know what they have going on in Norway, but it would not work in California. The public has not seen what these guys can do, and I wish they could. They only believe in what they see on TV and in the movies. Just because people go to prison doesn't mean they stop the activities that got them there. Inmates don't know how to "help" each other. They use and abuse--just like they do on the outside.
homesteadbound Level 8 Commenter 5 months ago
Wow, that's a heavy thing to have to deal with, but I can tell that you have a great attitude. Did you ever find out why the first doctor was sending you to the next doctor?
Voted up and interesting.