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    • #15995
      Brittany Foster
      Keymaster

      Many of us all have different PH stories but we can all understand the frustration of medications and the many side effects that can go along with taking them. Sometimes we have to fight through side effects in order to see the benefits. Currently, I am not taking PH medications in particular but I am on treatments to help with my underlying condition that is contributing to my PH.

      The treatments and medications that I have found most helpful for me and that have helped improve my quality of life are: oxygen therapy with activity (without it, I would feel dizzy with walking and just would feel tired a lot of the time) and my bipap machine at night. Another medication that I didn’t like in the beginning but without it, I realize a huge difference, is my beta blocker medication. At first I was more tired and felt even more run down. But after adjusting to the medication it has helped my heart rate and has decreased arrythmias greatly.

      What medications or treatments do you feel like have helped you the most with managing your PH or PH symptoms?

    • #16023
      ronald cole
      Participant

      Dear Brittany Ron Cole here.

      I have been reading your articles. I just returned home from the Hospital with a heart attack scare, went in an ambulance and just stayed most of a day and night, no heart attack. I have a few thoughts about some of your concerns. I too have a cpap, not a bi-pap I also get 2% oxygen fed into my mask. I always face my hose when I am going to sleep so most of the oxygen goes right up my nostrils. It helps put me to sleep. On the ECHO’s I have had to many to count, YES, by all means, tell the person to please apply the least amount of pressure needed to get the proper readings. I have had echo’s where the pain was terrible when the person is pushing so hard, I just say, hey you’re hurting me, then they ease off. I just had an echo two weeks ago and the person really was terrific, he did his thing and I hardly knew he was doing that. Brittany, I felt so bad when I saw your frail and they are doing that. You have every right to tell them to cut back because your frail and it just plain hurts. If there is anything I can offer you, just ask. Just know I am following you daily, the feeding tubes and I do not know which surgery your getting, sounds like your looking forward to it.

      Just hang in there, one day at a time rather than taking the entire load daily, perhaps your working to hard to keep up with all of us. Just know you have one Man out here praying for you nightly to let you know your not alone with the Malady, I have a feeling this is just a little storm before the sunshine in your life, I predict God sees and hears you and will always do what is best for you, even at the time you wonder why, suddenly something excellent pops out, I am praying hard for you. Your friend, Ron Cole Dallas, Texas.

      • #16025
        Brittany Foster
        Keymaster

        Hi Ron,
        I can’t even begin to tell you how much your words of encouragement mean to me ! It’s actually so great for me to still be able to connect with you all here on the forums and moderate the forums because it helps me receive and give support to others and that’s the best feeling in the world to know that there are great people out there who have my back in all of this ! A surgery will be planned to fix the main blood vessel (the aorta) in my body. There isn’t an exact date yet but the surgery will be in about 3 to 5 weeks they think. This will get rid of the feeding tube and will allow me to eat again and enjoy the finer things in life that many of us take for granted.

        I’m so sorry that you were in the hospital again and I hope that you are making progress towards getting back to your normal! Let me know if there is anything you need too. I will be sure to speak up when the echos are hurting and will let them know for sure. It’s so important that we continue to speak up for ourselves and our care because WE are the ones that are in charge of our OWN bodies ! Thank you for all your care and support. It means so much to me and I’m thankful to have a friend like you.

    • #16024
      ronald cole
      Participant

      Brittney, an afterthought. I was taking Matroproal a Beta Bocker, was super tired, now I have an internist who said cut your dose in half, 1/2 at night and 1/2 in the morning. Results… I got my energy, less depressed and my BP and arrhythmias did not increase, so the dosage is important, and always revisit that dosage depending upon your weight. Too much med can adversely affect you when sometimes less is more. you have to monitor and ask questions about all your meds and dump any duplicates and always question the doses because we are people who fluctuate, those 3-month visits are not enough work in your Internist or cardiologist 1 or 2 times along with the Pulmonary people. Just some thoughts for you.

      Ron

      • #16027
        Brittany Foster
        Keymaster

        Thank you for this information Ron! I am also on Metorprolol and take a higher dose at night but only half of that dose during the day and it seems to help me a lot with the arrythmias and fluctuations of heart rate that used to make me so dizzy. It keeps it more at a steady rate. I went through a period of a lot of adjustments with this medication though and it definitely made me feel more tired and depressed before I got used to it! Thank you again for your great input.

    • #16057
      Barbara Malcom
      Participant

      Brittany how long have you suffered with PH? And what other ailments do you have to make you be on a feeding tube or was it all due to PH?

      • #16064
        Brittany Foster
        Keymaster

        Hi Barbara,
        I was actually born with PH because of a large hole in my heart between the lower part of my heart. When that was repaired the PH improved but I had a breathing condition called central hypoenitlation syndrome which is another rare condition that they are treating me with BIPAP and oxygen because my PH is secondary to having low oxygen levels because of the breathing disorder. Mine is considered mild but the underlying condition definitely isn’t “mild”.

        The feeding tube I am actually going to have open heart surgery so I can get off of it. I was born with a vascular ring so basically my aorta (top part of the heart that comes off and gives blood flow to the body) is wrapped around my esophagus and closes it off so I have been suffering with awful reflux until it got to a point where I couldn’t eat anything by mouth without throwing up after. So they are going to correct it for me with a major surgery, just awaiting on the date !

        Also, I can see that you are being treated by your cardiologist and are on blood pressure medications and are you also on medications to control your a-fib or prevent you from getting that again? I am also on these medications and take lasix and metoprolol to control my heart rate and blood pressure.

    • #16060
      Barbara Malcom
      Participant

      Brittany you had asked me about whether my cardiologist was treating the underlying problem. The cardiologist I’m seeing now is the one that found the PH after a heart cath. Heart Cath was due to Afib that put me in the hospital because they couldn’t get my heart regulated. I was put on cardizem about 30 years ago due to palpitations ? It was to regulate my heart rate. I have also been on blood pressure medication for a long time, now on avapro. Also on lasiks

    • #16089
      Jimi Mcintosh
      Participant

      Adempas and Traclear, allowed me to walk further, work harder and to sleep better. My kidneys and liver didn’t like them. Dosing was a big challenge
      Where can I hide for 15-30 minutes to administer my treatment. Comments, “ is that a purse you are carrying”, no this is just my pump I use to stay alive

      • #16093
        Brittany Foster
        Keymaster

        Hey Jimi,
        Don’t people realize “man purses” are a thing now !? jeeez, people need to stay up to date on the fashion! … But on a serious note, I’m glad that those medications helped you and have you those benefits. Have the doctors done anything for the kidney or liver? What types of kidney and liver side effects did you have from them?

    • #16148
      Robin Webster
      Participant

      When I was diagnosed I was first put me on metoprolol but I passed out and it led to the discovered of an electrical issue with my heart that required implantation of a pacemaker. I was put on lasix and spironolactone and then eventually sildenafil. (I’m also on 3 liters of oxygen at night only.) My condition seemed to improve as far as daily function, but the pressure into my lungs stayed in the 80s. Then my sildenafil was doubled and I seemed to feel even better, but the pressure stayed in the 80s. This past year I was also put on opsumit. My most recent RHC showed my pressure dropped to 54, so I’m overjoyed. My doc and I are hoping that with continued care on this combination, my pressure might go into the 40s by the next RHC.

      • #16163
        Brittany Foster
        Keymaster

        Robin,
        I truly hope the best for you with that next right heart cath that you’re having. The combination of meds for you is probably what did the trick and helped to bring your pressures down! That’s great that you only require the oxygen at night. I’m so sorry to hear about the electrical issues of the heart and how they were discovered after the use of metoprolol. Did it end up putting your heart into heart block and causing long pauses in your heart rate? I was given a pacemaker for this underlying issue and THEN was put on metoprolol afterewards to control the a-fib that I developed and the extreme fluctuation in heart rate. Now that I have the pacemaker the doctors aren’t as worried about my heart getting to slow since it’s set at a set rate of 60 for the “low threshold”

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