This topic contains 20 replies, has 9 voices, and was last updated by  KRISTINE 1 year ago.

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  • #11727
     Brittany Foster 
    Keymaster

    As of lately, I have been diagnosed with different conditions that doctors feel are related to the fact that I have been low on oxygen for many years (which can happen with pulmonary hypertension). The condition that has caused my vessels to constrict is called central hypo-ventilation syndrome. This is a condition that changes the way the lungs exchange gases. It has made my lungs restrictive to the point where I am working with a 22% lung function and managing as best I can. With reduced oxygen levels and reduced blood flow due to a cardiac condition, it’s no surprise that other bodily systems have been affected.

    As if breathing wasn’t enough of a symptom to manage, it can be overwhelming when more systems of the body are impacted by the bodily stress we are under to get through each day.

    The systems that have been affected are my GI system with reflux, bloating, nausea, diarrhea, and changes in appetite. My cardiovascular system including mildly reduced ejection fraction, narrowed blood vessels, blood pressure changes and fluctuations, and irregular heart beats. The brain, and muscles of my body are also under stress. I have brain fog, memory troubles, reaction time is slower, mental illness including depression and anxiety. My muscles are also noticeably weaker and have lost a lot of strength and stamina.

    Have you noticed that other bodily systems have been affected after your diagnosis or prior to your diagnosis? How do you manage the different ways your body has changed? Do you experience any of the above symptoms related to different systems of the body? If so, you’re not alone !

  • #11740
     Beverly Repouille 
    Participant

    I’m with you on the brain fog and other mental problems. So frustrating. My doctors and I are also watching my kidney function as it runs a little high. My mom passed away from kidney failure. She was on dialysis for the last 3 years of her life and I do not want to end up like her!

  • #11745
     Brittany Foster 
    Keymaster

    I’m sorry to hear about your mom Beverly. I know a lot of people with heart of lung conditions who watch their kidneys . Especially if they are on any medications that would effect them.

    And brain fog is the worst! I always seem to be telling the same story I’ve told before as if I was saying it for the first time ! It can be frustrating for me and those who I’m around too.

  • #11748
     Kaye Norlin 
    Participant

    I can empathize with your symptoms, Brittany. I had all those. With the digestive issues, I was also dealing with cancer-related issues that I will likely deal with for the rest of my life- it makes planning trips interesting. In October 2016, my PAH reached the end-stage point; my kidneys and liver shut down and my BNP (heart function measure) was over 5000. Basically was I very nearly dead, but they were able to turn it around. I was very bloated when I went into the hospital, looking like I was a 65 year old pregnant woman which is not a good look; I came out 30 pounds lighter. I didn’t know that was all fluid! I had always been very physically active but got the point where I could not do much; I still can’t exercise like I used to do but it is getting better. It is frustrating to not be able to carry grocery bags. I have to write everything down or I forget- I can’t decide if that is age or PH-related. Last fall I started having episodes of my heart racing and they monitored it until after my lung transplant; I just started taking medicine for this A-Fib. This disease is horrid clearly doesn’t just affect the lungs; it affects everything in your body and the people around you.

    My doctors had me in pulmonary rehab from December 2016-September 2017 which helped and there is someone there to monitor you and it is in the hospital so that was good- just in case. I have 3 lb. weights at home that I use for arm strength and do one arm at a time until they tell me I can do more weight. I still do yoga; chair yoga is a wonderful way to start if you have a good teacher. Rana Awdish’s Yoga for PH is on You Tube. I have an exercise diary so I can see that I am getting better or worse. I also keep a food diary and have done so for years so when I have digestive issues, I can see if there is a food that I need to limit or cut out. With the side effects of PH drugs and Anti-rejection drugs and my cancer past, I have learned not to go on long car trips with people who can’t empathize with needing to stop a lot; I know where the cleanest bathrooms are where I travel frequently. I think one of the hardest things for people to adjust to is that we have to be careful about what we eat (sodium and processed foods mostly). It can be tough to find restaurants that will cook food that won’t kill you, depending on where you live. For my family, the food decision falls to me and sometimes I feel bad that they can’t go where they may want because there is nothing on the menu that is safe for me- no names mentioned here but I try to avoid chain restaurants.

    • #11753
       Brittany Foster 
      Keymaster

      Hi Kaye,
      Thank you for sharing this with me. I’m sorry that you are going through a lot and managing a lot of symptoms. But, at the same time it’s comforting to know that I am not alone and that people understand how I’m feeling and can relate to my frustrations. I’m so glad that the doctors were able to get you feeling a bit better. I can only imagine how scary that time of your life must have been. It’s good to hear positive experiences with pulmonary rehab too and I’m glad your team suggested that for you to help build some strength.. thank you for sharing what you do for workouts. Yoga is something that I enjoy too!

  • #11772
     Kaye Norlin 
    Participant

    Brittany,
    Thanks for the kind words. I can tell you it is getting better for me- managing the diet is tough because I can’t eat some of the foods that I love. that is a small trade-off for life free of cancer, O2 tanks, Flolan pumps, and PH. I hope you get your issues figured out. Keep us posted.

  • #11864
     ronald cole 
    Participant

    Hi Everyone, I just finished this article and I relate to it 100% I have been living with a lung pressure of 103. On May 24 and 25 I am going to UTTexas University hospital for 2 days of testing. I have signed off on additional experimental testing using some kinds of different gases being injected into my lungs and then MRI’s taken of the results. It is not FDA approved but that’s fine with me. I am a retired Marine Officer and 77 yrs old, anything I can do for the cause I am all in. I will also be getting many other tests, the right heart cath, etc.
    I am so weak in my legs I can hardly walk, I live totally alone with no family and tough it out. When I try to cook my legs are so weak I hang on to the counters. It is a super chore to shower and shave, but I do it. I refuse to allow my body hygiene go down with me. I feel terrible. I am only on the sidifil three times a day and will be getting some additional medicine, ( perhaps) after the two days of testing. I dread the 30-minute drive to the Hospital but I will do it. I have days where it hurts to even sit in my recliner. I am good some days then out of nowhere start to cry. This disease is incredible, It is really something. I sleep eight hours, do not use oxygen, but have used a CPAP for 25 years, have had two open hearts and a new aortic valve so I have done my time. I pray for you younger folks, God bless all of you who are suffering. Ron Cole

    • #11866
       Brittany Foster 
      Keymaster

      Hi Ronald,
      I truly feel for you and can relate to some of the hurt you are experiencing from this illness. I’m glad you were able to relate to my article, but it’s sad to hear at the same time knowing that you are going through so much. Do your friends and family know about your condition? I hope someone is able to go with you to the hospital when you get all your testing and procedures done. I will be thinking of you. Please keep us updated ! Stay as strong as you are!

  • #11963
     VK 
    Participant

    Hi Brittany,
    Just posting to give you and everybody else some supplementary info that might help. I’ve got GERD too but it’s due to my upper body being too small to support everything inside it. I also think you’re spot on with the idea that mood issues will happen because of, well, a lack of oxygen. And also remember we have to deal with a lot of societal pressure – People expect us to achieve things that we can’t.

    • #11976
       Brittany Foster 
      Keymaster

      Hi VK,
      the pressure does build up! especially when we are “looking okay” people expect us to act the part. The added stress definitely gets to me ! How do you manage your GERD ?

      • #11988
         VK 
        Participant

        Hi Britt — My GERD management is unconventional so I can’t exactly promote what I do because it is by no means clinically approved. Also, it’s due to not having enough room around my guts, so it might be different than what others experience. Because GERD involves not just acid but also reflux, I’ve felt the way to solve the problem isn’t to reduce the acid, but instead to reduce the reflux. — The last thing I personally want to do is mess with Mother Nature and mess up my protein absorption (proteins need acid to be broken down and usable).

        I’ve taken postural accommodations for thoracic insufficiency, including having an air mattress with foam wedges underneath it to raise the bed head. In addition, I never fall asleep on my back, because that not only makes GERD worse, it also aggravates sleep apnea.

        Instead of an antacid I convinced (of all people my psychiatrist) to put me on mirtazapine, an antidepressant whose prime side effect is munchies due to making the stomach work in the right direction. It’s very unconventional and you should talk to a doctor about it because antidepressants can cause psychiatric effects like mania and worsened depression.

        I don’t want to seem like a medical expert because the only expertise I’ve got is as a patient. Please refer to these resources for actual expert research:
        https://www.ncbi.nlm.nih.gov/pubmed/28408802 – An article on how mirtazapine has helped with gastroparesis (stomach paralysis, which directly will result in GERD)

      • #11992
         Brittany Foster 
        Keymaster

        Thanks for sharing this ! So interesting and glad that that medication is helping for you. I have tried some medications like that to help with other things. Anti nausea meds actually help with my headaches and migraines. Out of the ordinary for treatment of those symptoms but seems to get the job done ! They first gave it to me in the hospital. It made me a little jittery but helped with the headache ! Always good to talk about these different options with doctors who are willing to get creative and listen!

      • #12001
         Kathleen Sheffer 
        Participant

        Wow, this is so interesting. I took Remeron right after transplant to help me sleep, but I asked to go off it a couple weeks later because it knocked me out so quickly that I got anxiety every time I took it (don’t like not being in control). But I do still struggle with gastroparesis (a result of nerve damage during surgery) and GERD so I may have to reconsider. Thank you for citing your source, too!

  • #11999
     Joanne Sperando 
    Participant

    I’ve had PH for 20 years this July. In the first year, after several months on PH meds, the gut issues started. I was able to manage them easily with immodium in the beginning. But as my PH meds increased and new ones were added, my gut issues worsened and I was diagnosed with IBS. I kept needing more and more medication to control the symptoms and one night, the pain was so bad I almost ended up in the ER. IBS then progressed to Ulcerative Colitis, which induces misery on a daily basis. I guess you can’t vaso-dilate every blood vessel in the body without paying a price. I now take 6 medications for my gut including one drug that must be infused every 4 weeks. I’ve also developed Tinnitus (from sildenafil or digoxin, no one is quite sure) and Hyperthyroidism (dysfunctional thyroid is often seen in people with PH). I was also diagnosed with GERD which came with the sildenafil. I’m grateful to still be here and I know I’m fortunate, but the gut issues are really awful and I hope that the drug companies will try to find meds to help us that concentrate on different pathways.

    • #12000
       Kathleen Sheffer 
      Participant

      Amen! I was treated for PH for 16 years and had a number of medications to try to help my stomach issues. In the last few years before my transplant my stomach aches and basically chronic diarrhea heavily impacted my quality of life. Gut issues kept me in bed more than deoxygenation and related fatigue. I got so frustrated feeling like my doctors didn’t understand how much pain I was in and weren’t giving this issue the attention it deserves. You make an interesting point about vasodilators and I too hope for progress with other pathways.

      Have you found that eating certain foods aggravates your symptoms? Any natural ways you’ve found to combat this?

      • #12016
         Brittany Foster 
        Keymaster

        The reflux I get is very painful and sometimes feels like it’s under my ribs that are hurting so it’s a game of “is this my lungs or is this my reflux?” I hate having to evaluate my symptoms to see what medications I need to take more of or figure out how best to treat it based on the root cause. For natural things I take fiber which actually binds me when I’m having diarrhea. Also more bananas and rice bind me up so it’s not as watery and painful. Ginger helps with stomach discomfort and settles the stomach too. I love ginger tea and mint tea

  • #12512
     Jan RVing 
    Participant

    Thank you for this information. I have recently started the acid reflux issue and intestinal issues. Was wondering yesterday if it was my apendix. I have been having sharp pains for over a week. I see the pulmonologist in two weeks so will bring it up to him. The reflux hurts from the stomach up the back of the throat.

    • #12517
       Brittany Foster 
      Keymaster

      Hi Jan,
      I can relate ! In fact, when I first started having these complaints the primary care doctor thought it was appendix and sent me for an emergency CT scan. I guess better to be safe than sorry! But turns out it was my GI system. My gut bacteria is all out of wack from the different medications I have been on and for treating recurrent bronchitis with frequent antibiotics. It’s upsetting because now I am advised against antibiotic use and have to just let respiratory infections run their course and it can take weeks for me to feel normal from this. Definitely bring up the connection with GI issues and PH to your doctors. I am on a medication for acid reflux and take a few extra strength tums to help too. Reflux is NOTHING to mess with and GI issues can be extremely painful. I feel for you . Keep me posted on what the doctor says.

  • #12539
     KRISTINE 
    Participant

    So I’ve just gained a lot of insight from what you folks have shared in this particular conversation topic.
    I get the very same thing with acid reflux with this pain that is like a spasm between my ribcages and it feels like it takes hold of my esophagus and squeezes then lets go. I thought it was and still think maybe it was due to AdCirca. Another strange occurence is this one, bearing in mind I also have copd, but i have had happen 3x in the last week in half I can’t breathe. It is a very weird thing no air will come in and no air will go out. It”s stuck the first time it happened I thought for sure I was dying. I just got my rescue inhaler and puffed in it over and over and each time my lungs opened just a little to get air. The following 2x I didn’t freak out as bad and didn’t allow it to get so bad and went to the nebulizer treatment, which now gives me acid reflux also. Many people speak of hospital stays and or E.R. visits, what things send you to E.R. and hospital? Also if someone could elaborate on the foods that bother your system, and how you are bothered. (what symptoms to look for not necessarily actual food items) Perhaps I might need to pay more attention to that for myself.

    I am shaking my head in a state of confusion reading that some folks have lived for so long with PH. If my lousy memory serves me correctly though, the WHO groups beyond 1&2 can live longer, but with Idiopathic PAH my understanding was that the life span was not very long? I realize there have been a lot of medication advances which shed a different light on lifespan, which has led to a increased life span. My biggest issue for me personally is I have hashed and re-hashed in my head about quality of life vs. quantity of life, as it relates to my shortness of breath. (abreviated sob for all the new people cuz it took me a while to figure that one out).

    The other question I pose to the group, those on oxygen therapy. Isn’t it the case that the oxygen therapy doesn’t actually fix the shortness of breath, it is only beneficial in so much as it increases the oxygen level in the blood. Now I don’t know if that is applicable to WHO group 1 idiopathic or if it is indicative of COPD. If the PAH isn’t my demise than the COPD will be for sure. I just feel so much compassion for the young people and not so young people who are afflicted with this “thing” through no actions of their own.

    • #12540
       Brittany Foster 
      Keymaster

      Hi Kristine,
      I also have severe obstruction and reduction in diffusion capacity (amount of air in and out of the lungs). This makes breathing so difficult on top of the PH. My arteries and vessels are so reactive to this because when it senses that my oxygen levels are low, they get very tight and further limit the amount of blood flow reaching parts of my body and oxygen that goes along with that. I am also on oxygen therapy. And for me, the oxygen doesn’t fix my shortness of breath but it does improve my oxygen sats so that my heart doesn’t have to work as hard. So it benefits me because it reduces the workload of the heart (and it has to compensate a lot for this condition).

      I have some trouble with wearing the oxygen, but when I don’t have it on or on days when I need it all the time it makes a difference. Even going from 76% oxygen to 86%oxygen is a huge relief ! I get the throat tightness and feeling as if I’m not taking in any air too but my doctors think that is more the obstruction part of what I’m experiencing and have had to use inhalers plus a nebulizer treatment 3 times a day just to stabilize that. For me, it gets worse in the heat and humidity !

      For the reflux and GERD, some days it feels like I am being stabbed in the side. I am only 27 years old and it actually is different during different parts of my menstrual cycle. When the hormones increase and fluctuate, I get more of the burning sensation. Similar to how pregnant people feel heartburn I guess! Spicy foods I have to stay away from and anything too acidic like fruits I try to eat less of or have in cereal with milk to kind of balance out the acidity. I take a few tums a day too and a medication to help with the reflux called Zantac. I used to be on omeprazole which is also a common medicine used to treat this.

      I hope this advice helps ! I’m just speaking from experience ! Feel free to chat with me more here 🙂

  • #12543
     KRISTINE 
    Participant

    Britt, et al.
    I’ve been thinking as far as compassion I feel for people who have this through no fault of their own, in reality isn’t the reality of the situation most medical conditions and diseases are acquired by people through no fault of their own. I guess my smoking and who knows what else has led to my being in this position. I think it is a combination of lots of things including working around chemical vapors for so many years.
    I was glad to read about so many who mention a relationships involving a significant other. Being single without a s.o. and believe I shouldn’t get involved in a relationship due to the fact that I can’t breathe enough to partake in any intimate activity. There I think I said that pretty well without using crass terminology. Yeah for me I get a gold star for the day. I’ve been known to be a little crude. I digressed. I’m still not on a good enough medication regime to gain maximum help with this condition. Partly due to no insurance, but that is about to change. I just found out my boss is retiring and closing the business at the end of July. So my life is about to take on some serious changes. I can’t get a job in this condition. It has helped to hear that depression pretty much encircles many people in this group, in so far as I don’t feel alone with that. I can foresee the near future without a job to take up some focus, that it is going to be very easy to become consumed by thoughts of my medical condition.

    I take 2 Walmart brand Pepcids and Tums daily, let me tell ya, I can get acid reflux from a glass of water. So true. I go to my pulmonologist on Monday. I’ve also noticed everyone speaks of so many different dr.’s as a team to deal with the PH, and PAH. I really want a team. I keep having a problem with me lower leg below knee where blood flow is not good due to restricted yeah whatever Britt said. I got a misquito bite, scratched it, became infected, I had 2 antibiotic shots and am finishing my 3rd round of antibiotics 2 rounds of keflex and now a round of something stronger can’t remember what it’s called. It’s the leg from hell and the mosquito bite that wouldn’t quit. So Britt what has caused your condition and at such a young age, cuz you already said you weren’t a smoker, and what WHO group do you hale from? You weren’t kidding in an earlier post about our health status being similar.

    Ya know it’s funny how a persons life and experiences are what helps mold who they are, I have a background in healthcare from my earlier days. I worked as a asst. soc. worker, and cna in long term care, then did home health care, and experienced my mom’s husband who had copd and I used to clean his house and shop for him after they divorced and copd took him over. That guy and several patients I provided care for were on oxygen and all of them sat in their recliners and watched t.v. all day till they passed away. When I was told I had to be on oxygen due to my experience all that flashed before me was; yes I too own a recliner, but through the depression I still refused to just sit down and watch t.v. till I die. I gotta say though my oxygen cord gets tangled and jacked up all the time, which is a frustrating scenario. The dog lays on it, etc. At times I realize why people sit down and watch t.v. till they pass, because untangling the oxygen cord is overwhelming. I can’t sit down to watch t.v. and wait to die cuz you see all those people in my life who did that all had cable t.v.. I don’t have cable, can’t afford cable, and with only network t.v. wholly crap have you seen much network t.v.lately. I can’t sit down and watch t.v. till I kick the bucket, t.v. sucks. ok i hope everybody got a good laugh out of that one cuz we gotta laugh when we can. watch that breathing now, don’t laugh so hard you lose your breath, I don’t know about you but it doesn’t take much laughing for me to lose my breath. Work is done for the day, I’m going home to untangle my oxygen tube and work around my garden and house with sucky network t.v. on in the background.

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