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    • #11680
      Martina
      Participant

      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.

    • #11681
      Brittany Foster
      Keymaster

      Hi Martina,
      I’m sure many of us can relate to these feelings of frustration and hate that you are experiencing. There are so many days where I hate this as well. Even though I know hating it won’t make it go away. There are days where I wish it would. The palpitations, low blood pressure, and fatigue are probably my worst complaints and the hardest symptoms to manage. It can be awful when you feel as though you don’t have the energy to do simple things. What are some ways that you manage your frustrations and your symptoms?

    • #11686
      Beverly Repouille
      Participant

      Martina, I know exactly how you feel. I was diagnosed 2 years ago and felt my world had collapsed around me. I couldn’t do all the things I loved doing. I went through denying there was a problem, to feeling sorry for myself, to being angry. Then finally I realized that no one could change how I reacted to this disease except me. I’m working on finding other things I CAN do. It’s not easy – but it’s better than being angry all the time.

      We are here for you! HUGS!

      • #11689
        Kathleen Sheffer
        Participant

        You have a great attitude, @beverly-repouille. It’s normal to feel anger and sadness, but ultimately they aren’t productive emotions. Sometimes I will cry and scream until I’m all cried out – that’s the point where I decide to pick myself up and focus on what I can do. It helps to talk to other people who understand those emotions so we can get them out and then move forward.

      • #11691
        Brittany Foster
        Keymaster

        Hi Beverly,
        I can relate to your feelings of anger and denial. Do you follow my columns? I actually wrote about denial and anger with pulmonary hypertension. It is one of the hardest parts to get past when we are working towards acceptance of our condition. Some doctors make it sound so easy like “you need to accept this”. I feel like saying, “thanks captain obvious ! ” You’re right though if we focus on the things we CAN do it gives us some motivation and makes us feel like we still are ourselves.

    • #11688
      Joanne Sperando
      Participant

      I don’t know why, but I HATE filling up my pillbox. I have two other illnesses in addition to PH so I take about 28 pills (Rx & OTC) a day. And that doesn’t include the 5 digestive enzyme pills I take before I eat anything. I hate site pain and how my pants get tight from the swelling. I hate not working-I miss my friends and standing apart from most of the rest of the world. I hate that I can’t play volleyball and I have to worry about being on blood thinners. The list goes on….but, I am grateful to still be here (20 years in July), I’m grateful for the most supportive friends and family around me. Here’s a technique I use sometimes to help myself: I ignore it. Sending love to my fellow warriors. Let’s hope tomorrow is a better day.

      • #11690
        Kathleen Sheffer
        Participant

        I get most emotional when I have to do health maintenance things like filling my pillbox or previously when I had to mix Remodulin. It’s a reminder thrown in my face that I have the disease and I’m not like all my healthy peers. It helps me to call or text my friends who do the same routines so we can complain about how tough it all is together!

      • #11692
        Brittany Foster
        Keymaster

        Hi Joanne,
        I too am so uncomfortable with the swelling from PH ! Either the medications or fluid retention. Many don’t realize how uncomfortable that can be! Especially for us as woman to experience extra bloating and swelling. It has been one of my most difficult symptoms to manage with medication because I have had to go up on lasix a few times (yet another med to add to the pill box). I am writing a column that I will share today on the PH News columns and it is about weight gain and weight loss with PH.

        I am so glad that you also have a good support system. That is so important and something that gets me through the hard days too!

    • #11779
      Robin Baker
      Participant

      I hate not being as accessible to my grandchildren and not being able to care for my father. I hate the iv in my arm. I have allergies to the adhesive and have to change my site alot. It’s itchy and painful. Ugh water I miss swimming. I’m going to the conference in Orlando and my first thought was great my first time to see the ocean and I can’t swim. I miss working. People don’t realize how useless you feel when you can’t work. Every one says I wish I had an excuse not to work and I think really try it. I am lonely as heck. I am home pretty close to all the time unless I have a doctor’s appointment or can force myself to go to a special occasion. I hate that my family thinks it’s all a scam to get attention. But it’s not all bad. My husband is amazing. And I have gone from a wheelchair to walking up to five miles. I no longer faint. I’m going on 12 years since my diagnosis and I definitely feel better than I did. I try to take each day with optomism. It’s getting easier.

      • #11780
        Brittany Foster
        Keymaster

        Hi Robin,
        I can relate to your feelings and frustrations with this condition. It is hard when we aren’t able to keep up with younger kids. I have difficulty thinking about the fact that I can’t keep up with my nephew and I would technically be one of the “young moms” out on the playground if he were my child. I feel like people would hold me to the same “you’re so young” standard and expect me to have the energy of a 27 year old but I just do NOT ! I wish there was some way you could swim and enjoy that again ! It’s hard when we have to miss out on things that were once fun and enjoyable for us. I am glad you are attending the conference in Orlando. It’s amazing to be able to connect with others and share our stories. Everyone has their own stories and struggles and reasons why they have this condition. It’s fascinating to hear from others and develop bonds pretty quickly! I hope you continue to keep the positive attitude and hold onto the great things that have happened since your diagnosis too! The right attitude is so important and a crucial part of living life with this!

      • #11781
        Kathleen Sheffer
        Participant

        Robin, you are on point with your comments. Not being able to work has a huge impact on quality of life that healthy people don’t recognize.

        I’m so excited you’re going to Conference! I will be there as the Conference photographer so I hope to meet you.

        Why is your IV in your arm? Is it a picc line? My IV site was always on my chest. There are some creative ways to safely get in the ocean (maybe you’ll learn some more at Conference). When I was a kid I had a drysuit with shorts and short sleeves made to keep water out so I could get in a pool. I can’t say it was even close to comfortable, but made me feel like my life was less limited.

        There are also some better adhesives for IV sites. My skin gets infection level irritated by Tegaderm dressings so I switched to a Primapore dressing. I also used betadine and saline instead of alcohol for cleaning the site. Obviously discuss with your team. Your complaints are valid and real and I tend to try to solve problems that don’t need solving, but wanted to offer some of what helped me over the years – little changes can have a big impact.

        Looking forward to Orlando, even if not in the ocean! 😉

    • #11795
      Kaye Norlin
      Participant

      Martina, Wow! You deal with a lot and we can empathize with much of it.
      I agree with most of your list. These things were difficult for me:
      1) The stress in general, having the disease, filling the medications every day, having enough ice for a trip. Do you have any yoga classes in your town? I do know that yoga helped me and there are videos on YouTube for Pulmonary hypertension patients that are good; you can do them at home.
      2) Being exhausted 5 minutes after I got up each day and still having to go to work.
      3) Showering takes so long because of the prep. I did find that Glad Press and Seal under the Aqua Guard kept it from getting wet and when it did get wet, I had to call my husband to come home and help me change the dressing.
      4) Not being able to run a quick errand without bags, emergency contact information, and oxygen.
      5) I completely agree with you fear of the catheter being pulled while sleeping. I probably didn’t sleep more than 2 hours at a time when I had mine.
      6) You can’t ride horses with an oxygen tank very easily. They are heavy and, if they start to hiss, the horse may spook and run or buck- scary either way.
      7) I can’t carry much either and I hate asking for help. I love to garden and I have had to that with a long O2 line and a bench I had to move all the time. My husband had to do a lot of the hard work there for that I just love to do.
      8) Vacations/holidays were difficult. I did get to the Renaissance festival last year but used an electric cart to get around easier with my oxygen. I haven’t stayed in a hotel anywhere for 2 years. Even going to visit my mother is difficult with all the extra things I had to carry.
      9) As for the salt thing, I cook with lots of spice and have avoided added salt for 30 years so adjusting to the low sodium foods was not a problem for me. I do love hot spices and garlic.
      11) I really gained a lot of weight all over my body; I didn’t know how much until I almost died and they pulled 40 pounds of fluid from my body. I looked very pregnant and hid it with large long flowy tops that sometimes didn’t look at all attractive, but they also hid my pump.
      12) For jaw pain: Nasty stuff but I tried to take a very small bite for the first bite and then I didn’t have pain after that for the meal. Don’t know if that will work for you. When you can’t eat anything else, ice cream works for me; I can’t do that often because of the dairy, medication side effects, and my old cancer issues.
      13) I too had issues with the dressing; I always had welts and rashes and it itched terribly ALL the time. I even have a scar where I scratched myself so badly it bled and left a 1-inch scar. Kathleen had good suggestions if you can try them. the pharmacy gave me some bandages for sensitive skin and they didn’t bother me as much’ they are called IV3000. I have some extras that I could send to you to try.

      Mostly I was terrified that I would not be there to see my children settled in their lives and careers. I was afraid that I would die before my mother did; she already lost one child to heart disease at a young age and she was always worried about me. I was afraid to even cough in front of her or tell her how tired I was.

      I always had to be cheerful in front of my children so they wouldn’t excessively worry, since I almost died from PH once and had cancer in the past. I felt a strong need to protect them and even my husband, who frequently denied the seriousness of PH since I was doing well until a few years ago. Now (post-transplant) we have new concerns but life is better. Still too many restrictions but it is ok.

    • #11919
      Robin Taylor
      Participant

      Robin B.
      I missed people, too. I volunteer at my local animal shelter. I have made several close friends and I see many people from our community at events. I do what I can do, until I can’t anymore and everyone understands. It helps with feeling like you are contibuting to something and it takes your mind off of your problems for awile.

      Oh, and the thing I hate most is having a tail (my O2 tube)24/7 and all the digestive issues.

    • #11685
      Brittany Foster
      Keymaster

      I’m so sorry to hear how hard you are struggling with this. I only hope that there is some type of relief to better manage the symptoms that you are experiencing. My advice would be to be honest with your doctors about how hard this is for you and how much this is effecting your quality of life. I would also suggest maybe talk therapy or something. Maybe your doctors have a therapist that they would recommend who works with people with health conditions. Especially if you are experiencing depression as you said. Nobody should go through that alone. You can always feel supported here too.

    • #11703
      Brittany Foster
      Keymaster

      Martina, I can definitely understand your frustrations and I’m sorry you feel so attacked on their page. This is a space where you can safely vent out your feelings and get support from others who see this disease for everything it is including the good AND the bad. I can get why it is good to keep a positive attitude, because without some type of optimism there would be no healing and hope. But, to ignore the negative is just unrealistic. Some days you just need to vent and that is perfectly okay here. We are with you!

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