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What I hate about Pulmonary hypertension
What I hate about Pulmonary arterial hypertension
1) Stress during changing container with my medication. Will there be alarm? Did I do it right?
2) Permanent exhaustion. It´s one of symptoms. I need a lot of, really lot of rest. And muscle fatigue.
3) Showering is problem. I have to cover my catheter with plastic film to protect it from water. I have it attached in my left arm, so of course, I need help with it.
4) Constantly carrying bag with machine, which is giving me every few minutes dosage of my medication through tube. That tube has to be changed every three days. Of course, I need help with it. Again.
5) Logically, that bag is with me 24/7, so during sleeping too. I am afraid every night, that bag will fall from bed and pull out my catheter from my arm. In that case, I would need to call ambulance immediately to avoid sepsis.
6) I will never swim again in my life. I love water so much. It calmed me. I will never again lie in bath or be in the sea.
7) I am forbidden to carry things heavier than 5 kilograms. I was always so proud on my strenght in my arms, so proud, that I can help my old mother. She is 71. She can´t carry heavy things. I can´t lift my niece. I can´t lift daughters of my friends.
8) How to get on holiday? I need lot of medical supplies (syringes, 50 ml of solution of NaCl, needles, disinfectant, medication Veletri, tubes, containers, spare machine) plus clothes and hygienic things of course. I don´t think, that all of this is lighter than 5 kilograms. And I need to get in and from the train with it. And I can´t lift my left arm above my head. It´s forbidden too. I have no idea, how to get to my Fantasy festival, to which I am looking for whole year.
9) I am allowed to drink only 1,5 l of fluid. It´s a really insufficient for me, but I can´t drink more, because more fluid would be dangerous for my heart. My heart wouldn´t be able to pump it. I take diuretics to avoid storing water in my body, mainly in my liver. I lost 11 kilograms during almost two weeks in the hospital. So much water in my body. I am constantly thirsty.
10) I have to be on low salt diet. Food has no taste.
11) I have to watch my weight. I mean it.
12) Palpitations and low blood pressure.
13) Pain jaw. Every time I bite into food or drink a little water, terrible
blinding pain.
14) It´s incurable disease. Per my doctor I am high risk patient and he put me on the most aggressive meds.
15) It ruined my life.
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