This topic contains 1 reply, has 14 voices, and was last updated by  Brittany Foster 1 year, 1 month ago.

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  • #12278
     Martina 
    Participant

    How do you live normally with taking diuretics as furosemide?
    I take three pills every day of Furon (name of diuretic medicine here in Czech republic), but then I spent several hours going on toilet every few minutes. How can I go anywhere in such state? How do you do it, when you have to pee so often? I can´t imagine to go to cinema or theatre, or travelling by bus or car or train anywhere. Is there solution? Thank you!

  • #12286
     Brittany Foster 
    Keymaster

    Hi Martina,
    Unfortunately that is what diuretics do and how they work. When people take them they have to frequently go to the bathroom. For me, this lasts about 2 to 3 hours and then stops and is regular again. I would suggest asking your doctor about a good time to take them so that going to the bathroom doesn’t take up your entire day. Maybe early in the morning? Definitely ask about it!

  • #12296
     Beverly Repouille 
    Participant

    I take 3 pills daily as well – 2 in the morning and one about 2 pm. Like Brittany, I have about a 2-3 hour time frame after taking the meds of needing the toilet. Sometimes, it doesn’t bother me until after I’ve taken the 2 pm pill. Good luck and keep us posted! HUGS!

    • #12310
       Brittany Foster 
      Keymaster

      Beverly,
      Thanks so much for the response. It definitely is hard to manage the symptoms but unfortunately it is necessary for many of us to take these! I wish i could skip it some days but the next day and sometimes the same day I pay the price.

  • #12322
     Pam Muell 
    Participant

    I am on 60 mg of Lasix,I take it first thing in the morning,I don’t seem to have to urinate as much as I did in the past.I do try to drink plenty of fluids throughout the day,I also was just diagnosed with type 2 diabetes but have been trying to control it by my diet.I see my doctor tomorrow,my AC1 is at 6.8 and she may want to put me on something for the diabetes.My ankles do not swell but I think I swell around my belly,it always looks and feels bloated which seems to push up on my lungs making breathing more difficult.Take care Martina.By the way my sister maned her daughter Martina after our grandmother on my daddy’s side of the family,beautiful name!

    • #12324
       Brittany Foster 
      Keymaster

      Hi Pam,
      I remember when i first started it and took 20 mg i had to urinate so much and so frequently. After getting used to it and adjusting too it , it doesn’t seem as often that I am running to the bathroom. I feel for your discomfort with the bloating around your stomach. My legs don’t swell or bother me as much as my stomach swelling which just def adds to the trouble breathing . It’s vicious.

  • #12346
     ronald cole 
    Participant

    Dear Martina, Brittney is exactly right. #1 the fact that your urinating that much from the beginning means your body was bloated and needed a good flushing out of the water.If affected in this way, just stay home for a few days and We promise that you will almost become regular after the original flushing out of your body. this includes, legs, other limbs, your belly and your entire body had much access to water. Stop the salt, at the beginning double up on our potassium and limit your fluids during this initial. My dear, we have all been through to the point that draining out the water, have large urinations actually will feel good in the future. Do not Worry, just have fun.
    Ron Cole…Pissing Expert.

    • #12357
       Brittany Foster 
      Keymaster

      Ron,
      Great advice about the salt intake! Martina,I would also consult with a doctor and see if they have any restrictions on fluid intake. Fluid is also found in things like fruits, lettuce, etc. There’s hidden amounts of it that you may be consuming during the day! Ask a doctor about how much fluid is best for your given your dose !

  • #12374
     ronald cole 
    Participant

    DEAR MARTINA,
    I AM NOT GIVING YOU MEDICAL ADVICE ONLY SHARING WHAT I KNOW AND DO.
    Martina, I was told the Maximum is 2 liters a day. When you take, let say 3 water pills, like120 Mg of Lasix, I would double up on your Potassium 5 out of seven days and take these pills all at once about 10 AM so your urination does not keep you up. Honey, each case is different, If you’re thirsty all the time, keep a small glass in the kitchen, and spaceout your cold water because it is refreshing. Do not worry so much dear. a little too much or not enough water on a given day will not harm you. You could also buy sugar-free popsicles and have a few of those each day for your pleasure. THE STAIRS. just do one stair at a time, eventually, you will reach the top. Do not start out looking to climb them all in your mind, one at a time and don’t put a time limit on your journey, also don’t dread going up and down. This PH will have its peaks and valleys, just accept your challenges one day at a time. do not sit there and fret. Personally, I have been fighting with this lousy Oxygon Provider, I have had NONE in my CPAP machine at night and I have to get up, go outside 3-5 times a night and breath in deeply just to get by, so life’s a beech. Work, I would suggest while you able to apply for all the assistance you can get now, go for every dime you can get, also use catholic charities, you do not have to be Catholic. They have folks that will help you, at no charge to you. Ask your Doctor to get you Home Health Care, at least you will have a nurse coming by 2-3 times a week and if you’re in dire straights they can guide you. Just take it easy, do not fight this challenge, just kind of flow with it in your mind and thank God for your good days, Girl, You are not alone, believe me. I wish you peace and comfort. Ron Cole USMC

  • #12378
     ronald cole 
    Participant

    Martina, You call him and demand Potassium, this could be the reason your feeling bad. In the meantime eat one Banana a day and 6 oz of real Orange Juice. Keep Bananas around like one ever two days. they are only 90 calories.

    Ask him about your blood work, perhaps your natural potassium is too high but I doubt it. Tell him on 2-3 Lasix a day you looked it up and how many should you take I think perhaps the amount I told you. but I am not a Doctor.

    Call and demand and try to get a pharmacy who delivers, no sense wasting your energy running back and forth dear.

    You can write me anytime, when I am free I will answer you for sure, it takes time dear, read all you can on this site but seeing something here does not mean it applies to you.

    God is your Co-Pilot, do not forget that.
    Ron

  • #12393
     ronald cole 
    Participant

    Hi Brittney,
    The Medication I take for stomach bloating is spironolactone 50 mg daily.

    I take it in the Morning, perhaps you’re taking the same thing under another name.

    Join the site. Drugs. Com. You can find anything there, great site.
    Look it up and study it before you call your doctor.

    Hope this helps you.

    Ron

    • #12406
       Brittany Foster 
      Keymaster

      Thanks for the info Ron. I’ll be sure to check out that site! Didn’t even know they had a site like that 🙂 Very helpful!

    • #12442
       Kathleen Sheffer 
      Participant

      I took Aldactone too, Ron. Same time as Lasix. Never had any issues, except peeing constantly.

  • #12412
     Rosemary Martin 
    Participant

    had an appointment with my cardiac specialist last night. He wants me to drink so i don’t get dehydrated. New regime..Mon – Wed – Friday 2 pills (20 mgs each) in between 1 20 mg pill. feet were swollen again last night. I asked him if i should be eating bananas he said no. However, i do have to have blood work every 2 weeks.

    • #12422
       Brittany Foster 
      Keymaster

      Hi Rosemary,
      I took experience some swelling even with the diuretics. It doesn’t take it away completely, just is supposed to make it less. I hope that you continue to stay hydrated with it because swelling can also be a sign of dehydration and these pills can dehydrate us quickly. They are doing the right thing by giving you some type of regimen. Give it a few days of being on it to see more improvement and if it gets worse don’t hesitate to let your doctor know. I hope the blood work tapers off a bit for you! I had to do a lot of bloodwork in the beginning but now it is just when I’m feeling symptomatic or having more muscle pain as that can be a sign of low potassium levels. Stay well!

    • #12447
       Beverly Duffield 
      Participant

      Aldactone (spironolactone) is NOT the same as Lasix (furosemide). Very important to realize the differences! Very, very important in regards to potassium metabolism. Too high or too low in potassium can kill.

      • #12448
         Kathleen Sheffer 
        Participant

        @beverly-duffield My understanding was that Aldactone worked to combat some of the effects of Lasix, which is why I took them simultaneously.

  • #12415
     ronald cole 
    Participant

    Rosemary
    Your feet are still swollen, Proves he does not know anything about PH. Do some Research and find a Cardiologist who understands the Total Disease of Pulmonary Hypertension, that’s what I would do.

  • #12441
     rosemary martin 
    Participant

    Ronald, this man is a specialist in PH – Guess different strokes for different folks.

    • #12459
       rosemary martin 
      Participant

      Ron, I still can’t get over the way you responded when i posted about my specialist.

      • #12468
         Kathleen Sheffer 
        Participant

        I’m sorry about Ron’s reaction, Rosemary. Edema is a common symptom of PH and its presence does not prove whether or not a doctor knows what he’s doing (I know you know this). Dehydration isn’t good for anyone, so his recommendations make sense. You may need to increase Lasix to every day to get all the fluid off you, but this comes with its own risks. Your doctor can see from a comprehensive metabolic panel blood test that your potassium level is within range, which is why he isn’t asking you to change your diet.

  • #12518
     Erin McDermott 
    Participant

    I’m very new to this, just diagnosed in March & stil going through testing too. My symptoms become bad in January and the one every Dr doesn’t understand is the water retention just in my abdomen. But it sounds like I’m not the only one who has this! I have low blood pressure and potassium so my primary Dr had me try sprolactone but it didn’t work. Further testing did find an Atrial Septal Defect (hole in my heart) which also causes PAH, especially with adult onset of symptoms. My current cardiologist doesn’t specialize in either area & my Pulmonologist wasn’t helpful since I don’t have any lung disease for him to treat. Hopefully I’m one test away (next week) from being referred to the right specialist!! Reading that others also have water retention in just the abdomen makes me feel better. I knew it had to be from this, just the Dr’s not knowing their stuff! My face & neck also swell, but gravity helps as I sit up during the day.

    • #12520
       Brittany Foster 
      Keymaster

      Hi Erin,
      From my own experiences, abdomen swelling is common for me ! I have been treated with duiretics for that (lasix) but my blood levels are monitored as it can lower potassium even more. As far as the ASD, i would make sure to see if you can get an ACHD specialist because an ASD is usually a heart defect that you were born with that grew or caused problems when you got older. I know this because i had a VSD repaired as an infant but it was very large that it caused PH and damage even at a young age for me. Definitelt see if you can get in to see a CHD(congenital heart disease) specialist and a pulmonary hypertension doctor. All the best!

  • #12521
     Rosemary Martin 
    Participant

    Welcome, Erin. I still don’t have a handle on this disease..Hopefully more answers will come for you next week

  • #12545
     Erin McDermott 
    Participant

    Thank you Brittany and Rosemary!! I also have an autoimmune disease called Ankylosing Spondylitis as well as Ehlers Danlos Syndrome, both of which are pretty rare and took quite a battle to get a diagnosis and to the right Dr’s for treatment. So thankfully I have experience advocating for myself and proper care. That’s how I got to where I am today too, by asking rather than waiting. I found out at my last appointment my cardiologist couldn’t see the size of the ASD nor does he have experience treating them. He tried to dismiss the ASD & my symptoms, which have decided to get worse in the last couple weeks. But,now he’s doing a test to measure the size of the ASD & get a better idea of pressures. Then I’ll get a referral to the Adult Congenital Heart Disease clinic in Portland, just 45 miles away. I don’t know if they deal with PAH but will find out & get another referral if needed. The Pulmonologist I originally saw doesn’t seem to have a clue.. I was very frustrated after those appointments. Felt like I was begging for them to care & take my symptoms seriously. I’ve been fighting chronic pain for 9 years and that’s quite a battle. But add these symptoms on top and I’m a mess!! I thought I was fatigued before. Turns out there’s a whole different level of fatigue I couldn’t even imagine.. The beta blocker has lowered my heart rate but that made the water retention worse! Hopefully after the test on Tuesday I’ll be one step away from the right Dr!!

  • #12661
     rosemary martin 
    Participant

    along with the swollen feet, does your feet turn red and rashy looking?

    • #12662
       Brittany Foster 
      Keymaster

      Hi Rosemary,
      Yes! They get bright red and get rashy around the toes. My dermatologist said this is a sign of hypoxia and is actually called something but i forget the name of it!

  • #12665
     rosemary martin 
    Participant

    i was beginning to get a bit frightened….was thinking celulitis? or worse? Do you do anything for it?

    • #12666
       Brittany Foster 
      Keymaster

      Rosemary,
      They gave me a cream like an antifungal cream that works on the splotchy part of it that looks like a rash around my toes. Other than that I make sure to ice and rest my feet when I can and keeping them elevated helps the color to return to somewhat normal usually (besides the rash). The rash for me is on the sides of my feet and around my toes. Almost looks a little swollen and red around the toenails too. But she did say this was oxygen related so it made me feel better about it. I would get an opinion from a doctor though and maybe yours could refer you to a dermatologist just to make sure it’s not anything to worry about! Probably just another one of our bodies warning signs.

  • #12715
     Erin McDermott 
    Participant

    My feet get like that as well! I thought maybe it was from having Reynauds and something had changed. Reynauds is an over-reaction to cold, blood vessels constrict in my hands, feet & lips turning them white, red or purple. My toes turn purple, sometimes red as they get warm or more blood flow again. But they have had a rashy texture around the toes for quite awhile, I’ve just never known why!

    • #12733
       Brittany Foster 
      Keymaster

      Hi Erin,
      Yes! Mine are the same way ! I would suggest a dermatologist if it starts to bother you. As I said before, Mine was the one who told me this was actually hypoxia related. And there I was thinking it was some weird athletes foot or something ! It was like a rash that would sometimes peel like how a sunburn does !

  • #12983
     rosemary martin 
    Participant

    here is the latest in my sage – as of this morning am taking torsemide instead of the lasix.. 30 mgs. necessitates me splitting a pill to make 30..seems to be working much better – also gave me spironolactone – now i need blood work once a month. told me not to eat bananas and celery which i was doing. my last test last week showed up a bit on the potassium. who knew that xtra potassium could be a bad thing..

    • #12989
       Brittany Foster 
      Keymaster

      Rosemary,
      I love to stay updated on how you’re doing and changes in medications that are working for you. I’m glad you have a doctor that is keeping such a close eye on you and is keeping track of your blood levels and electrolytes on these medicines. I didn’t know that about potassium either! I know some people who even take potassium pills! Glad it is working better for you! Keep up the posts and sharing here 🙂 we love hearing from you.

  • #12984
     rosemary martin 
    Participant

    once a month was wishful thinking..it is now once a week at HUMC heart center..opens at 7:30 will be there b4 i go to work.
    also saw pulmonary yesterday. that i put under oxygen

    • #12990
       Brittany Foster 
      Keymaster

      The once a week checks and blood work will become like second nature to you in no time! I hope you have help for this too and ttansportation if you need it

  • #12991
     ronald cole 
    Participant

    Good Morning everyone,
    I am going today o my PH Specialists at UT Southwestern. I take 3 water pills and one of the spironolactone, this has been my drug program for the last three months.

    I had a felt panel a week ago and all was well including taking just one Potassium. I have other issues, take many other drugs including Tresieba for Diabetes and lots of Heart meds as I have had 2 open heart surgeries and a new heart valve. I think I mentioned I was wounded in my back near my spine and most days I have heavy pain and weakness in my legs because of that. I refuse to take Pain Pills so they give me shots in my lower back which lately have become useless. in 30 days they are doing another procedure called facet injections which could help my back. I have good days and bad days but for me, it’s about sleeping well, I have been on CPAP for 20 years and that’s an on and off situation. I do read these columns often and get much great information from all the great comments. I am a full grown man, if I see something different than mine I just feel that must work for that individual, or in some cases not work. The dramatic weakness comes on certain days and I am not here to cure myself, I am here to just have support knowing I am not alone. I am trapped in a building with many stairs, now I am diligently working on a complete lifestyle change, like moving and getting better situated. I will post what my PH Specialist says after 90 days on my program, perhaps he will have some new approach.
    Ron Cole

  • #13078
     Jan McCrory 
    Participant

    I was diagnosed with PAH a few months ago and was put on Viagra. It made my blood pressure so low that I was dizzy all the time and it caused excessive head sweating that I could not tolerate. So, I am now on Opsumit 10 mg. I seem to be tolerating it ok except for retaining fluid in the feet and my stomach. I had an old Rx. of Hydrodiurill 25 mg, so I started taking 2 every morning which helps somewhat. I think I need to be on something stronger so I am going to make an appt. with my primary Dr. to see what she recommends.

    Thank you, everyone, for your thoughts and advice.

    Jan McCrory

    • #13082
       Brittany Foster 
      Keymaster

      Hi Jan,
      as you can probably tell form this forum, there are many others with PH that experience swelling especially in the areas you are talking about. I am also on a diuretic of lasix and go anywhere from 20 to 40 mg depending on the level of fluid retention. I weight myself each morning and decide how much of the medicine to take. You should definitely reach out to your doctors about this. If you see a cardiologist and PH specialist this would be the best person to talk to about these symptoms and the ones that are best to prescribe it! Best of luck! Keep us updated.

    • #13103
       Chris LaRose Mev 
      Participant

      Welcome Jan.

      Do you have a PH Specialist treating you?
      Were you diagnosed with a Rt Heart Cath?
      What were your Pulmonary Pressures?

      chris

  • #13130
     Erin McDermott 
    Participant

    Jan – I too was recently diagnosed & still doing some testing as well as waiting to see a different Cardiologist who knows what they’re doing! But I retain water just in my face, neck & abdomen. My primary Dr had me try Spironolactone because my potassium tends to run low & my blood pressure is normal. It didn’t do a thing!! He won’t give me anything stronger so 7 months later I’m still carrying several pounds of fluid on my abdomen. I really hope I get in to see the new cardiologist soon & he can help me get the fluid off safely! Be very careful, you don’t want your bp to drop too low which can happen with some diuretics at a high dose. I was warned of this by a specialist in the ER while vacationing in FL. She came right before an ER Dr was going to hook me up to IV lasix to get fluid off to hopefully lower my heart rate. She told me he would have put me into shock. Yikes!!

    • #13142
       Brittany Foster 
      Keymaster

      Hi Erin,
      WOW what a scary thought about being put into shock by IV diuretics ! You are right though, doctors should monitor the dosing very carefully to make sure the blood pressure isn’t too low on it and to make sure you are still staying properly hydrating and keeping your nutrients in your body! Also, my kidney function is checked periodically with being on lasix too! Thanks for you response !

  • #13143
     rosemary martin 
    Participant

    Yesterday, was weekly blood test – Showed slight decline in potassium – now i am to eat a banana every day. Everything else remains the same. I asked if i could increase the water pills as my feet are still swollen when i get up in the morning. No other changes were prescribed other than the banana. Tuesday i go for the blood gas, chest xray and pft at the hospital. So far this is what i need to see if medicare will pay for the NIVU – After the hospital have a meeting with the NIVU people at pulmonary’s office.

    Keep smiling,

    • #13153
       Kathleen Sheffer 
      Participant

      Rosemary, I’m sorry you are still having problems getting your levels right. Did they agree to have you increase the diuretics? What does NIVU stand for? Sorry I haven’t heard that acronym before.

  • #13147
     Michael Morale 
    Keymaster

    The last 10 years of my father’s life, he suffered from congestive heart failure. The doctor put him on Lasix, and as his condition worsened, she kept increasing the amount that he took. I’m not sure if all diuretics are the same, but Lasix will rob your body of potassium. Eating a banana or even eating an avocado helped. Once a month, he would go in and they would give him intravenous Lasix. They would always check his potassium and his liver function before administering the intravenous Lasix.

    • #13159
       Brittany Foster 
      Keymaster

      Good point about the potassium Michael! I even know of some people who are on potassium pills. I had to be on them when I was hospitalized one time. The nurses said it is actually common for people to have low potassium while in the hospital (I wonder why!). But the bananas is a good natural way to get it. I always have one with my medication in the morning. I didn’t know about the good sources of it in an avocado too! Just a good excuse to make some homemade guacamole hahaha!! 🙂

  • #13183
     ronald cole 
    Participant

    Hello to Everyone,
    My PERSONAL EXPERIENCE is strange. I just met with my team and they want more water off. They increased my water pills to 4 a day that is 160MG.
    They told me to take 2 in the am and 2, 6 hours later as they said water pills flush through your system every 6 hours. I started doing exactly what they said along with increasing my potassium. What happened was I started gaining water weight right away, after a week I called the Dr, He told me to go back to just 4 in the mid-morning, since then I take them at 9 am and by about 2 PM the urination has stopped and I am definitely lighter. I think these water pills work differently for everyone. If your drinking lots of coffee in the morning like I am, perhaps it’s pushing the water out faster. My urine is never dark yellow, it is always very light, that means it is fresh urine pushing through the kidneys. Just thought I would share my situation. I am not doing well lately, Weak as hell, eyes closing every day, tired and exhausted. I guess for me it’s like an elevator a little bit down every day. I still pray for everyone here, I find if I pray for you, instead of myself I feel non-selfish. Ron

    • #13184
       Brittany Foster 
      Keymaster

      Hi Ronald ,
      Always good to hear from you. I’m sorry it sounds like you are going through so much. You certainly are doing the right thing by addressing this with your doctor and it seems like they are trying to get the right amount of adjustments for you. I know it’s so hard when you’re still experiencing symptoms though. Feel free to vent here any time. Is it very humid where you are? The weather has been just awful and has increased my swelling a lot and pain in legs.

  • #13463
     Rosemary Martin 
    Participant

    had my cardio appt yesterday…blood tests showed dehydration. now back to 30 mgs of teremeside (sp) M – T- W – in between 20 mgs. along with spironolactone – btw will be 3 weeks tomorrow that my feet are no longer swollen which he attributes to my overall feeling of well being – still red tho…blood work every 2 weeks still on the digoxin as well.

    • #13464
       Brittany Foster 
      Keymaster

      Hi Rosemary,
      I’m glad to hear that your doctors are keeping a close eye on you. It’s good that your feet aren’t as swollen . When my feet were swollen they were just so painful and it was hard to walk. Having that relief makes a huge difference. Thanks for keeping us updated!

  • #13603
     Rosemary Martin 
    Participant

    last appointment Doctor has me doing the 30 torsemide M – W – F – 20 on the other days along with sporanactone. Was doing ok – when suddenly feet began to swell again..They were perfect for a few weeks but rash was still there. I have terrific ankle cramps several times in the course of the night. I read that eating a pickle would help. I did that from last Thursday on and didn’t have any cramps. This weekend the swelling started. I think i sabatoged myself by eating the pickle. Didn’t do pickle last night and ankle cramps came back with a vengence Going to call office later and see if i could go back to taking 30 everyday….tho need suggestions on how to deal with dehydration.

    • #13609
       Brittany Foster 
      Keymaster

      Hi Rosemary,
      I’m sorry you are experiencing the ankle pain and the swelling again. That sounds terrible! I hope your doctors are able to provide some insight into what’s causing this flare for you and can get you on the right medications so you can feel more comfortable. As far as dehydration, I always drink water as well as hydrating drinks like gatorade with lower sugar. Something else that is good that had electrolytes in it is pediasure the clear kind called pedialyte. Cocounut water is also good for hydration and something that I am a fan of! Ask a pharmacist about a drink that would be good for hydration and has electrolytes that can help balance out the water intake helping you get the most benefit from water you drink.

      • #13616
         Rosemary Martin 
        Participant

        i do drink a lot of water but not enough. i go for blood work again tomorrow..will see what this shows..thinking the cramps could also come from dehydration.

      • #13618
         Brittany Foster 
        Keymaster

        Good luck with the bloodwork tomorrow ! Maybe adding some extra potassium would be good for the cramps too! Even if you’re not low on bloodwork, potassium does help!

  • #12323
     Brittany Foster 
    Keymaster

    Wow Martina,
    It sounds like so much has happened to you in such a short amount of time. I’m sure there were so many thoughts going through your head at once! What helps you the most in these situations? Are the people you are with helpful in advocating for you and your needs or do you feel like you are alone with that? And i think it all depends on the person with how much they are using the bathroom , how your kidneys are, and how much water you have to get rid of. If you are concerned about it though def bring it up to the doctor who prescribed it!

  • #12337
     Brittany Foster 
    Keymaster

    I so wish that there was more help for you! That sounds terrible that doctors were unable to understand. Something that my doctor is in the process of doing now actually is writing something that explains my medical conditions to doctors that may not know my history as well as a detailed description of my treatment plan. That way there is no confusion and other doctors who are not familiar with my history can’t just “do what they want.” this will be on a sheet of paper for me signed by my doctor as well as in the files in the hospital so they should read it before treating me (attempting to anyway). I would ask your doctor who you trust and who knows about PH to do something similar for you!

  • #12347
     ronald cole 
    Participant

    Hi Brittney, Ron Here

    All this proves that we MUST be our own advocates. The Doctors we have, we are lucky that they know the PH game. many folks in outlying regions know nothing about PH and do not care to learn. It is up to us to guide them through the process, and not giving Medical advice, but putting their minds at ease, as you and I know it’s one day at a time, we never know how we will hold up the next day.
    Hope your OK sweetheart, do not hesitate to contact me if I can help you in any way. Sincerely, Ron Cole…Dallas, Texas

  • #12356
     Brittany Foster 
    Keymaster

    Ron,
    You are so right! Self advocacy is so important. I couldn’t imagine being in a country with very little knowledge about it. Some places I go to even in the US i fear when they don’t know much about it. Advocating for myself has been something i had to learn the hard way over the years.

  • #12373
     ronald cole 
    Participant

    Dear Brittney, I wanted to talk to you last night when you emailed me, I am on a Laptop but I was awake in bed with my iPhone and wanted to talk to you, I was having a rough night. would it be possible to have each other’s email in case of emergencies? just a thought, I wanted to answer you but can’t log in with my I phone. Ron, it is totally up to you, if you don’t want to just don’t respond.

  • #12375
     ronald cole 
    Participant

    Britney, There is a medication I take just for stomach bloating, my belly went down and I lost an additional 10 lbs. I take on in the morning. If your interested write me and I will get the bottle and give you the name, it works over time you will feel the difference in about 5-7 days. the Doctor at the pulmonary Clinic gave it to me. Dact. this website we ore on is located right on the University of Texas Campus, I see the Logo on their Building when I pass by.
    Ron

  • #12388
     Brittany Foster 
    Keymaster

    Feel free to reach out on the forums any time Ron! Or you can send me a message me on the forum!

  • #12389
     Brittany Foster 
    Keymaster

    Martina,
    even eating a few extra bananas might do the trick to help ease at least some of the symptoms ! Check out other foods that are high in potassium too. You can always ask a pharmacy too if they have anything they would recommend that you don’t need a prescription for in the meantime!

  • #12391
     Brittany Foster 
    Keymaster

    Thank you for this info Ron. I didn’t know there was a medication just for stomach bloating. I am on a few stomach meds for reflux that help with the bloating. Mine is Zantac and I also take tums to relieve any heartburn. I am curious what you are on for that !

  • #12494
     Beverly Repouille 
    Participant

    @robert Wow! That’s a lot of allergies! Don’t feel that just because many of us are on potassium pills that all of us are. I’m sure there are lots of people out there that aren’t. I would rather my doctor had gone a more natural route as yours did. I’m so tired of pills. HUGS!

  • #12693
     Chris LaRose Mev 
    Participant

    Martina, my PH Specialist let’s my primary care physician (PCP) handle things like Potassium, Iron, Magnesium, B12, Vit D, etc. i have regular check-ups including CBC blood work and we discuss results of tests and what to do, like diet, Rx’s or supplements.

  • #12511
     Brittany Foster 
    Keymaster

    Beverly,
    I definitely understand your desire for more “natural” ways to help things. I’m sure there are plenty of doctors out there who are educated on natural medicine to help! Have you ever seen someone that specializes in this like a holistic specialist? They have a few in my area of Rhode Island that I have gone to for supplements and they have worked with my own doctors. Maybe doing some research on homeopathic medicine specialists in your area would be good!

  • #12515
     Beverly Repouille 
    Participant

    Brittany, I know there are several in my neck of the woods (same “neck” as yours!). I spoke with my primary care physician just once about adding some natural remedies to my medical regimen. He looked at me like I was crazy. I’ve not tried again. But he’s a really great doctor and he hasn’t steered me wrong yet, so I’ll keep him.

  • #12516
     Brittany Foster 
    Keymaster

    Beverly,
    LOL! I know this look all too well!! In no way do I replace my PH meds or heart meds with all natural remedies but I do use some things like ginger and different types of teas to help with things like nausea and upset stomach! I use natural things more for anxiety and GI symptoms and stick to traditional medicine and everything my doctors say about PH and my heart conditions! I’m glad you have a great time! We are in great hands 🙂

  • #12993
     ronald cole 
    Participant

    Kathleen Dear, EXactly. This is a tricky Disease and I think we can see what might work for me does not mean it will work for others if it was that common, PH would have a cure. You make sense, I follow you. Ron

  • #13185
     Judie 
    Participant

    Martina
    When I saw your picture I wondered if you were flushed. I didn’t want to suggest anything because we are all different. When you list all of your “allergies” and your asthma it makes me wonder if you can have a mast cell disease. If you see an allergist ask about this because of your trouble with food. Since eating a banana can cause throat swelling another symptom of mast cell disease you should NEVER eat a banana again. There are mast cell treatments which here in the US some doctors give it off label but given you are diagnosed with asthma already you qualify on label to recieve the drug. It is an injection called xolair in the US. I suggest as someone mentioned already have all of your diagnoses and meds printed out along with literature you can get online describing your diagnoses. The Canadian Mastocytosis Societ has a comprehensive list of 58 signs and symptoms please go to mastocytosis.ca click on symptoms and go through the list. It’s likely this is a major source of your problems. Addressing this can be a major factor in getting you stronger and feeling better. It is basically a malfunction of your innate immune system.
    Addressing this can greatly improve your other diagnosis bc your body won’t be at war with everything entering your body.
    Print stuff on PAH and keep it on you in your purse or a folder that is with you at all times. It will help keep you safe. I also have to carry epi pens in case of anaphylactic shock which can occur. Throat swelling can be the start of anaphylactic or anaphaltoid reaction. Read the difference as you may be in a constant state of anaphalactoid reactions.
    Feel free to ask me any questions. If you think it is mast cell disease I can send you articles and things you should have with you at all times. I have a daughter who suffers many of my chronic diseases and we rely on each other as you do your mother, but if you became unconscious and she is not with you things they may attempt to do in helping you may actually harm you.
    Here in the US one can buy potassium supplements over the counter without a prescription. If you have documented low potassium and are on a diuretic that is not potassium sparing you need to get the potassium back in your body to offset what the drug is causing your body to deplete.
    Healing thoughts to you.
    Judie

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