My Daily Routine/Struggle/Worries.
In my daily life, I have so many routines, struggles, and worries. Several things I need to keep in mind and sometimes, need to think ahead. I just want to try to share it with you.
As you can see in the image above, that is all the medication I need to take. Every day. On time.
It can happen, that I will take some a few minutes later. This is no problem. And it is very rare, that I forget to take some. I am using an app on my phone. This will give me a reminder/alarm when it is time to take my next medication. The app also keeps track of my inventory and will give a signal when something is getting low.
It is also lucky, that my local pharmacy keeps track of things. They also offer, what they call, an auto-repeat medication request service. Normally they will calculate and see how much medication I need for three months. Two weeks before the three months are over, I will receive a message that tells me that I can pick up my medication for the next three months.
There are some medications that I take when needed, or where they don’t keep track of. So this is where the app comes in handy because it will warn me when something is running low and I need to order it again.
I am using medication for my kidney, for lowering my blood pressure, to “relax” the heart because of my heart failure. Medication for cholesterol, stomach protection and blood thinners because of my artificial heart valve.
There is also a tablet that makes me pee. This is to get out most of the water that my body is retaining because of my heart failure.
During the day, I have certain routines or things I need to do.
Every day, I wake up at 8:00. Get out of bed and take all my medication for 8:00 am. Then, I need to weigh myself. This is to check and see, how much water my body had retained and if it is needed that I will take my pee medication. My normal weight should be around 81Kg. But if I see, that in 2 day’s I had gain 1-2Kg or more, then I need to take the pee medication. If I don’t take it, I will feel bloated during the day. Heavy breathing and swollen ankles. I also need to write down my weight in some kind of dairy. This is later for the hospital to see how things are going. It is also one way for me, to keep track of my weight.
Then at 10:00 am, my next tablet. This is a half tablet. In the beginning when I started with this medication, I felt dizzy during the day. When they reduced it to a half tablet, it was better. This tablet is for my heart failure.
At breakfast, I take tablets for my kidney. I really had to get used to this, because for this one I cannot set a reminder on my phone. I don’t have breakfast always at the same time. And at lunchtime, I need to take two tablets again.
At 18:00 I will take my blood thinners. The number of tablets I need to take, depends on a schedule I got. Every two to three weeks, I need to check my blood for the anti-clotting value, or INR.
At dinner time, again two tablets. Then at 20:00 one more tablet and 22:00 again one tablet. Then when I go to bed, I will take the last tablet for the day.
Also, one or two times a week, I will check my blood pressure. This is already under control with medication, but sometimes it is good to check it yourself. Just to give yourself some reassurance that things are okay. Sometimes I also check it, when I feel lightheaded. Sometimes I also do an extra check after something like vaccination or change of medication.
Things I Need to Keep in Mind.
During the day, I also need to keep an eye on my liquid intake. Because of my kidney, I need to drink at least 2L per day. This can be any kind of liquid. But because of my heart failure, I have a liquid intake limit of 1.5 to 2L per day.
The liquid can be anything. It can be tea, water, juice, but also things like soup, yogurt, and the juice of fruits. This all adds up. So I am also trying to keep track of that. Again, I am using an app for this. Every time I drink something, I will record how much I think I had taken. So during the day, I can see how much I already had drunk and how much I can still take.
Because of my heart failure, I also need to keep an eye on my salt intake. I have something like a low salt diet. If I eat salty things, my body will retain more liquid. So the less salt, the better. This means that I almost check everything, to see how much salt is in it. If it is too high, I will not take it. If I ignore it, I can see it the next day, because my weight had gone up, and I need to take my pee medication.
This is not always easy. And to be honest, sometimes I will ignore the low salt diet and eat things I actually should not take. But at that time, it just feels nice to take it.
Like chips or other salty snacks. Sometimes you really long for it. It is not easy, but I can still control myself. And maybe to just satisfy my longings, I will just take 1 piece. Just to get the taste.
I also like cheese. Especially the old cheese. But this kind of cheese is very salty. So far, I have managed. Only now and then when I see a tasting plater in the store, I will take a very small piece.
Because of my artificial heart valve, and the blood thinners I need to take for it, I need to watch out for what else I eat. One of the advice is to try to avoid vitamin K. This will counteract the purpose of the blood thinner. Vitamin K can be found in example bananas. The one that I like the most is plantain. If we have them, I only will eat very little from them. I also don’t eat it, one day before I need to check my blood. Else it could give a wrong or distorted reading.
One more thing I always need to keep in mind, that when we go out, I need to bring some medication with me. Because we are not always sure, what time we will be home. To be on the safe side, I will bring some medication with me. This way I will not skip one intake. And sometimes to be really sure, I will take everything with me, what I need for the rest of the day. Plus a bottle of water. Just in case.
And when we go on a holiday, I need to plan extra things. I always keep a box of all my medication, on/with me. I also will bring more then I need. And if can, I will keep my medication in/on two different bags. You never know what can happen. I also have different letters with me. In case customs or doctors will question me.
For my pacemaker, I have something like a creditcard. On this card are all the needed information in regards of the pacemaker. Like brand, and model.
On my phone, I have a special app that is called I.C.E. (In Case of Emergency) This will show emergency phone numbers, my health problems, and what they need to look out for. This is very handy.
And of course I also have worries.
Because of the blood thinners, I bruise easily. And when I cut myself, it takes a while before it stops bleeding. This is why when they want to do a blood check, I always tell them that I am using blood thinners. Then they will use some extra bandage.
Also with cuts, I need to be careful of infections.
During this COVID-19 pandemic, I am also extra careful. Because of all the medication and health issues, I am very susceptible to bacteria. Even a simple cold. If someone around me has a cold, within two days, I also have it. Things like that make you extra careful and hesitant.
Also with my pacemaker/ICD. There are also things you need to keep an eye on. One of the things is, to stay away from strong magnets. They can interfere with the pacemaker and it could go off track. In the airport, for example, the metal detector is not good for the pacemaker. I also cannot have an MRI scan, because that is also using a strong magnet. Every year they also need to check the pacemaker to see that things are okay. And if the battery is still good. And if there is no reported malfunction or error. I also need to be careful that I don’t get a punch or blow or push, where the pacemaker is placed. This also could damage it or break one of the wires.
Getting Tired of Things.
Dealing with so many things, sometimes you get tired of it. Fed up. You had enough.
Lately, I have that every time my alarm goes off and it is time to take my next medication, I think “AGAIN?” Is it time again? I know it is needed and I will take it but in the back of your mind, there is a small voice asking when this will be over. But it will never be over. It is part of your life. And you need to live with it. Like it or not.
Also for example the last weeks. Almost every week, I would be in the hospital because they want to have a blood check. It is because of the kidney. They had discovered glucose in my urine, To make sure that I don’t have diabetes, they wanted to check my blood. Once they found that I don’t have diabetes, now they want to try to find out, why it is in my urine. Maybe there is something else wrong with my kidney.
Of course, you feel happy and relieved that you don’t have diabetes, but now you are also thinking, what else is wrong with my kidney. One more “worry” to add to the list. What health issue will they discover next?
For now, I will have 6 weeks “rest”. They will check the blood and urine but some tests can take almost 6 weeks before they will have the results. I can choose if I will worry about it during those 6 weeks or put it aside and don’t try to think about it. Just hope and pray for the best. That is all I can do for now. And the doctors and specialist will do their best. At least they make serious work of what they found.
It is not easy to have to live with a medical/health condition. It can take over your life.
But I am very well aware, that I am not alone in this. That I am also not the worst case. I know that there are people out there, that have it worse than me. They use more medication, they have more checkups, they are more limited in what they do. But I know the feeling. I know and can imagine what they are going through. And I have respect for them, that they still keep on going and don’t give up.
During the years, I also have learned that it is okay not always to stick to the rules and limitations. It is okay to “sin” once in a while. If you stick to everything you read or hear, you get even more worried. It then looks like you have no life at all. Everything you do is wrong, everything you eat is wrong. So I learned to loosen up.
Every day I thank God that I am alive and can enjoy life. Maybe with some limitations, but I am still alive. And I need to be thankful for it. Being thankful for all the doctors and the work and effort they put in it.
Deep in my heart, I know that there should be a reason why I am going through this. Learning from it and sharing it with others. Showing that I/we are not alone in this. But also realize that things could be worse. We need to do our best to make the best out of it. And it will not be easy.
In all of this, I am also thankful that I am part of a church community. Part of a few bible study groups, where I can share the things that I maybe am struggling with.
One thing that is also helping me, is writing about it. Share it with others. Telling my experience, my thoughts, my feelings, my story. As I already mentioned, showing others that they are not alone in it. That others also maybe are going through a difficult health/medical situation.
I hope you got some insight of my life, my daily routine/struggle/worries.
As always, please take care, and stay safe.
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