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    • #27567
      Jen Cueva
      Keymaster

      It’s no secret that PH has a multitude of symptoms. Then add to that, the side effects of medications that we take to help with these symptoms. Some days, the side effects of my PH medications can be worse
      than the symptoms. Do you find this true some days, too?

      If you had to name the worst symptom or side effect of PH, which would you choose? Has this changed along with your PH journey? Let’s talk about this.

    • #27574
      Colleen Steele
      Keymaster

      @jenc I don’t even have to ask Cullen. I know he would say that migraines have been his worst symptom. It’s a toss up which caused him to miss school and activities more – PH or migraines.

    • #27586
      Jen Cueva
      Keymaster

      Hi @colleensteele, thanks for sharing. I have headaches but never migraines. Poor Cullen, those migraines must be horrific. That is interesting that you are unsure of, which caused him to miss school more. That poor kid, he is one tough cookie. I cannot imagine dealing with all that he has and at such a young age. The tremendous support at home certainly helps.

      I think that palpitations and chest pain are probably the worst symptoms for me. I have had a struggle with this for years now. What about everyone else? Oh, jaw pain is another, and once you have it, you will know.

    • #27597
      Carol Volckmann
      Participant

      Another great topic Jen – very helpful for each of us to just put it put there and share. I don’t have migraines but know a number of folks who suffer from migraines- they are do debilitating and painful. Jen, suffering from chest pain and heart palpitations has to be so very scary I am so sorry you suffer from these. Is there any help from your doctors?

      My worse side effect was unstoppable pain when I was on subQ. I am now on IV without pain. Now my worst side effect is bowel incontinence caused by Scleroderma. Trying to get it under control with PT/Bio-feedback and an implantable stimulator. There are worse things many more (migraines, chest pain and heart palpitations) so I will deal with it.

    • #27604
      Colleen Steele
      Keymaster

      @cdvol3gmail-com symptoms shouldn’t be compared. They are all difficult to deal with in their own way. I’m sure bowl incontinence is pretty miserable too and I’m sorry you are dealing with that!


      @jenc
      migraines always come first to my mind because Cullen has been and still dealing with them since he was a child. But I’ve pushed to the back of my mind how horrible the heart palpitations and chest pains were for him. They use to scare him so bad as I’m sure they do you. When I think about it those probably were his worst struggle because they are physically painful but also emotionally scary. They are a double whammy.

    • #27605
      Jimi Mcintosh
      Participant

      Shortness of breath, palpitations and heart flutters. I still do not have a clear diagnosis, some doctors are saying that how is it possible to have an oxygen level of 97 to 94, after 6 minute walk test, strenuous exercise, wheezing and near fainting. When I go below 94, it is heart cath, hospitalization and head scratching. Go figure

    • #27610
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, please do not discount your bowel incontinence. It must be frustrating when you have had the stimulator and not seeing the improvements that you had hoped for, yet. I agree with Colleen, side effects and symptoms should not be compared. As you know, our bodies react to things differently. I hope and pray that with a little more PT and time, you will see some relief. Thank you for sharing this with us. It cannot be easy to talk about and share.

      -Big hugs from Texas

    • #27611
      Jen Cueva
      Keymaster

      Hi @colleensteele, I love what you said to Carol about not comparing symptoms. I think side effects and symptoms always tend to affect us in different ways. I cannot even imagine being at such a young age and dealing with migraines, palpitations, and chest pain and tightness all at once. How old was he when the migraines started? Do you or anyone else in the family suffer from migraines?

      Big hugs to you and Cullen, although he may not be a hugger. <3

    • #27612
      Jen Cueva
      Keymaster

      Ughh @jimi, how frustrating this must be for you! My oxygen levels fluctuate, and it has always puzzled my medical team. You mention the flutters and SOB. It reminds me why we have such SOB that we think any minute that maybe our last breath. Do you struggle with this when your SOB is at it’s worst?

      Do you also have COPD? This morning, my brain is mush, still sipping my coffee, but I thought that I read this on a post before. I may just need to finish my coffee, hehe.

      Take care of yourself, Jimi-

    • #27677
      Jimi Mcintosh
      Participant

      Yes asthma, COPD, bronchitis, afib, enlarged heart. Kidney is still 3-4 ,
      They encountered heavy bleeding and stopped the planned opening up
      of the vessels in
      My kidney. They extended the time the stents were to be removed. Guess they will decide to remove stents or leave them Oct 20. Eye surgery was 90 % successful and the macular hole was closed, scheduling cataract surgery b/4 Xmas.

      My issue is the failure to have a firm diagnosis, a treatment plan and knowing where I stand for the future. I wake tired after 6 hours of sleep. Gasp for air when walking. Hard to remain positive, cannot plan for anything. Glad to still be here. So many are suffering more than I am.

    • #27680
      Sandy
      Participant

      Jimi, I can SO relate to your symptoms, frustration, and fear. My most life-altering symptom is also shortness of breath and I, too, do not have a definite diagnosis yet. Even after 4 days in the hospital recently for congestive heart failure, and every test known to mankind (including another right heart catherization), my cardiologist and pulmonologist are not clear on a diagnosis or treatment plan (other than increased lasix to keep fluid from accumulating). It’s very frustrating and frightening so I’m trying to adopt a new attitude: I want to focus less on WHAT I have and focus more on managing my symptoms in order to recoop some of my activity level. So far, that’s working better for me. . . will keep you posted.
      Be well everyone and thank all of you for sharing so freely. It’s a huge help to me in this journey.

    • #27687
      Jen Cueva
      Keymaster

      Thanks, @sandydenn, for your support to Jimi., I am sure that he is appreciative. I am sorry to hear that you, too, are in the same boat with no definite diagnosis. I did not realize that, but I knew you had been in for CHF. After the RHC and echo, etc., they are still unsure? What are they doing for you besides the Lasix to help with the fluid?

      When do you follow- up with them?

      This is all frustrating, frightening, and a bit overwhelming for your body and mind. You are not alone. I love how you tend to change your mindset by focusing on managing your symptoms. Hugs and prayers are with you from Texas.

    • #27688
      Jen Cueva
      Keymaster

      Hi @jimi, I am so sorry that things are so frustrating for you. Not knowing and having that firm diagnosis yet is a struggle, and with all that you have going on, a diagnosis and a plan are needed.

      I am sorry to hear of the bleeding that postponed the kidney surgery. It sounds like all is going wrong for you, and I hate that. I hope and pray that things will start to look up for you soon.

      One positive is the eye surgery, so let’s hold on to that and pray that a few others will fall into place. I am grateful that you could share with us, but my heart aches for you as I know how waiting can be on our bodies. We are all grateful that you are here, too—big hugs from Texas.

    • #27693
      Sandy
      Participant

      Thanks for your encouragement, Jen. At the moment, increased lasix, daily weight journaling, no salt added to food, and controlled fluid intake is my regime. My pulmonologist wants another CT Scan so she can compare to ones done in the hospital but needs to be sure fluid is out of my lungs so she can see the inside of my lungs clearly. Bloodwork tomorrow and follow-up visit with cardiologist . . . tons of questions. Both doctors keep telling me that my symptoms and test results are very, very puzzling and that they just don’t have a clear answer yet. I do, however, feel like we’re getting closer. My breathing has improved dramatically in the past 2 days so I believe that my lungs are nearly drained of fluid and that’s a relief. The story continues . . .

      BTW, I loved the pictures of you on your new bicycle. It has to feel absolutely wonderful to be able to join your family and friends on biking adventures. I noticed in the pictures that you were using oxygen. Do you have one of the packs that makes its own oxygen (Inogen) or do you have the replaceable cartridges?

      Be well everyone.

      • #27704
        Colleen Steele
        Keymaster

        Good job @sandydenn making the effort to do what you need to do to improve your symptoms. I’m sure there are days when it isn’t easy. Keep up the good work. I’m sorry that answers are coming slowly but it sounds like in are in excellent hands and that your team will keep at it until they figure out how to best help you.

    • #27694
      Jen Cueva
      Keymaster

      I am so happy to hear how ell the Lasix and your new routines are helping you. I can imagine the breathing is much more improved. You are right. You are moving in the right direction.

      I am excited that you have questions before your appointment. Do you have them written in your phone notes or somewhere, so you do not forget them? I am known as the list queen, but often leave them at home, so I use my phone notes.

      Thanks for your kind words on my bike pics. I use the small refillable tanks using a home fill system. But I also have an Inogen that I use if I am away for more than an hour. I also use him to fill a concentrator at night and while at home. I hope this answer helps. If not, I can share more.

      Good luck tomorrow, and keep us posted.

    • #27706
      Colleen Steele
      Keymaster

      @jimi I feel so bad about your recent update. My heart goes out to you. You have been through a lot lately and to not have answers and a plan yet must be so hard. I know it’s frustrating to wake every morning feeling tired and out of breath. Hopefully your medical team will develop a helpful plan for you soon but until then allow yourself guilt free rest. I’m thinking of you and will keep you in my prayers.

    • #27730
      sue
      Participant

      The shortness of breathe bothers me more than anything, but sometimes i get very dizzy but i just pretend i am old and drunk. Well i am old. but do not let that bother me, it only happens when I walk. My oxygen level is very good when i am out of breathe but my heart rate goes over 100 until i sit and get my breathe back. I take no medicine for PH, a year ago I tried OPSUMMIT and had uncontrollable bowel incontenance and then they gave me a medicine that started with a T and I gained weight and got a terrible stomach ache I could not get rid of, and it was worse than the shortness of breath, so my cardiologist said that since I was doing so well getting my lung blood pressure down I could go without, but the shortness of breath has gotten way worse since a year ago.
      I have an appointment with my cardiologist next week and will see what he says. My cardiologist has me weigh daily and lay on what they call a pillow and send some information to the hospital or his office and if something goes terribly wrong they call me and tell me to change my medicines. I have a couple of blood pressure medicines, a blood thinner( I have these diseases because my muted gene causes me to make my own blood clot) a couple pills to get rid of the water.
      I have gotten a pacemaker a couple years ago. I have lots of side effects of my blood pressure pills, tried 15 blood pressure pills and had side effects on all of them, so was a long time trying to go without, doctors finally told me I had to take the pills, so now take tons of Immodium and lomitil.I get very bad back ache if I stand very long. and I cannot walk to the mail box and back without being short of breath. What else am I going to get? my extremities go to sleep a lot, but have pain only in my back. I sleep a lot more than I used to or at least lie in bed, it does not hurt at all in bed. I do sometimes get coughing or sneezing spells but not sure if that is the PH or something else.

    • #27740
      Jen Cueva
      Keymaster

      Wow, @sue-bouse-team, I am so sorry to hear of your struggles with PH meds. I am happy that you have been able to keep your pressures lower. I am sad to hear that you are experiencing more shortness of breath. But grateful that your doctor is keeping a watch non you and you have an appointment next week.

      It sounds like your gut is sensitive to most meds. I hope that you are getting some relief from taking the Lomotil and Immodium. I can only imagine how busy this will make you, if not. Diarrhea is exhausting and dehydrates us so quickly. This depletes ur electrolytes, too, and causes other issues. Are you able to stay hydrated?

      I am happy to see that despite all of your concerns, you are keeping your humor! That is important and can get us through many hard days.

      Please do keep us posted on your appointment next week. I recall from before that you research a lot! This will help you and your doctor to make the best decisions for you. Kudos to you on staying educated! Take care of yourself, Sue, and let us know how we can best support you. If things get worse, you will go in earlier, I am sure.

    • #27741
      Jen Cueva
      Keymaster

      Hey @jimi, you are in my thoughts and prayers. I hope you are resting and that you and your medical team will come up with something very soon. In the meantime, rest and let us know how we can best support you.

      How are those grandbabies doing?

    • #27754
      sue
      Participant

      Today my breathing is better, last saturday was terrible , but does anyone know what makes one day bad and another better? is it your diet or the amount of salt in your body or?????

    • #27756
      Colleen Steele
      Keymaster

      I’m so sorry @sue-bouse-team that you have experienced occasional bad breathing days. There are any number of things that can trigger worse days than others. If you are retaining fluid, yes, that can affect breathing. Change in medications or dosages, stress, sleep depravation, even migraines could trigger bad breathing days for my son. Sometimes it can even be environment. A sudden change in weather often had a negative affect on my sons breathing.

      If you haven’t already, you should report the episode to your doctor, especially if you start experiencing them more frequently. There are more concerning things that you would want to have ruled out, such as heart related problems, or PH progression.

      If you start noticing more days of breathing struggle try keeping a journal of your symptoms. List dates, times, what you were doing and when you last took your medication. That information could be helpful to your doctor.

    • #27760
      sue
      Participant

      Thanks for the information, you have all had so many more serious things than i have that I know you are the ones to ask. All my research does not always give me the answers i want. I really do not have pain except once in a great while when I am very short of breathe my chest hurts, but if i sit and get my breathe back, it goes away. Have had this for at least 6 years, and think it started long before that, I have PH because my body makes its own blood clots and one lung was 1/4 and one lung 1/3 full of clots before they caught it, and by then also had congestive heart failure. The only thing that has ever bothered me is being short of breathe so cannot walk very far, distance changes depending on the time and day, it changes.I have always been extremely active and ran all over and kept very busy, so this slowing down and not being able to do anything some days, is very different for me. Mentally I do pretty well, just know there are somethings I cannot do some days I just accept that. I know I would be in a lot of trouble if I get covid19, so just missed my grandsons wedding, but figure I would rather still be here to see his children, so they all talked to me from the wedding and took lots of pictures. I am just lost as to what to expect, but you mention stress as a trigger and that may be it, I was doing well today until my sink got stopped up and I had to call the plumber but tonight my breathing is way worse. So guess I have to not let things stress me. Anyone have any ideas on how to do that?

    • #27763
      Jen Cueva
      Keymaster

      Hi @sue-bouse-team, Colleen offered some excellent tips and information. Because you have CHF, too, I am certain that you have a routine down to help keep the extra fluid off. Are you on daily diuretics and also have any as needed when your swelling increases? I am sure that you weigh each morning and notify your Doc of any changes more than 3 pounds. Are you also on a heart-healthy diet and/or fluid restriction? I was in congestive heart failure when I was diagnosed.

      So many things, as Colleen mentions, can affect your breathing. Yes, each day is different. Some days one hour, my breathing may be better than later in the day. Stress is a huge factor, too, because it added to your symptoms.

      I am sorry that you missed your grandson’s wedding. I know that it was to protect yourself. I hope that they at least videoed it or something so you could participate somehow.

      Limiting stress is not easy, but I find that starting my day with my devotional and gratitude journal sets my day’s tone. Things happen, and life is stressful, but I have to let go of what I cannot change and remind myself that it is a bad day, not a bad life. Tomorrow is a new day.

      Waking up and finding out your sink was stopped up and needing the plumber can be stressful, but remind yourself, this WILL be OK. Meditation and simple yoga are helpful too, also counting to 3. I am sending you hugs from Texas.

    • #27785
      Joanne Sperando
      Participant

      The worst symptom of PH is severe shortness of breath. I’ve been fortunate enough to tolerate it but if I push myself too hard, I can’t breathe and that is just depressing. I love to dance but I know if I go too far, I’m in danger of fainting. And as for side effects, the absolute worst is the gut issues. 22 years of vasodilation has destroyed my gut and I now have ulcerative colitis. My GI doc is amazed at my colonoscopies that he can see each and every tiny blood vessel, blown out from our meds. UC is an embarrassing, life-altering illness and at times, worse than the PH.

    • #27791
      Colleen Steele
      Keymaster

      @joanne-sperando-schmidt PH is so much more than the disease itself. It is side-effects and co-existing conditions often triggered by the PH or treatments. People have no idea all that a PH patient actually goes through, that’s why I appreciate these forums so much.

      I’m so sorry that you struggle with UC on top of everything else. Is there any treatment or diet that has helped you deal with it?

    • #27912
      Joanne Sperando
      Participant

      I’ve cycled through many different drugs. I seem to be doing better on my current therapy that includes an immunosuppressive drug, Xeljanz. I’ve tried different diets but they’ve had no impact…I avoid lactose, that seems to be a consistent thing.

      • #29259
        Jen Cueva
        Keymaster

        My apologies, @joanne-sperando-schmidt, for missing this update. I am grateful that you have found some medications that treaty your PH and UC. I hope this continues to work for you. I am certain that avoiding lactose helped a great deal. Did it make a big difference as you adjusted to a lactose-free diet?

        Any others want to share which symptom or side effect that you struggle with most?

        • #29271
          Colleen Steele
          Keymaster

          The side-effect that Cullen struggle with most was migraines. It felt like he missed school because of them more often than from his PH symptoms.

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