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    • #23178
      Libby
      Participant

      Question for oxygen users: when your doctor decided it was time for you to be on oxygen, did you feel you needed it as well or not? When you started on oxygen, did you feel a difference like energy levels increasing? My o2 saturation is always at 90 or mid 80’s with minimal exertion. I can walk on flat ground for a while but any inclines I get very out of breath. I don’t particularly think I need oxygen but feel I am getting there. HOWEVER, my feet and over all blood circulation is getting real bad. I wondered if oxygen would help with this?

    • #23191
      Jen Cueva
      Keymaster

      Hi Libby,
      I use oxygen at night and with exertion, walking, etc. At first, I did not think that oxygen would help, but after sleeping with it for a few months, I noticed some differences. For me, every day is different. I also experience decreased circulation in my lower legs, feet, and hands. Oxygen for me does help with this.

      It helps to use oxygen as directed by your doctors. At first, I only used it at night but through the years, I learned that when I do wear it, it helps. Yes- I was stubborn. I know that we are all different but it sounds like you may benefit from oxygen. Keep us posted.

    • #23198
      Colleen Steele
      Keymaster

      @libby from the get-go my son was placed on supplemental oxygen at night, but when his doctor told him he need to start using it 24/7 there was a lot of argument and tears. He really did not think he needed it to that extend. It was explained to him that it might seem like he didn’t need the extra help because he had become so use to not breathing properly. His doctor informed him that by not using the oxygen he was forcing his lungs and heart to work extra hard which could potentially make him decline faster.

      When he gave in to using his O2 all day and night he admitted to feeling a lot better. Like everything else PH related it became his norm and he was grateful for the assistance.

    • #23199
      Tatiana Zacarias
      Participant

      Hi Collen
      What kind of oxygen does your son use at home

    • #23204
      Jo Ann white
      Participant

      Libby you have just the same symptoms I had with inclines and leg swelling. I wound up in the hospital after episodes of dizziness/
      faintness/queasiness that turned out to be caused by my brain not getting enough oxygen. I left the hospital on oxygen 24/7 at 4-5 liters during the day depending on exertion and 6 at night. Everyone is different but it really sounds like you need oxygen and your heart may be damaged if you ignore it. Since I am on Medicare this qualified me for 24 sessions of pulmonary rehab—a once-in-a-lifetime benefit which was very helpful. I now get around pretty well with condensers at home and d oxygen tank with a bonsai regulator when I am out. Because regulator gives oxygen only when I inhale through my nose the small tank lasts me about four hours so I can still go shopping, out to dinner and to the theater.

    • #23206
      Julie Placzek
      Participant

      Hi Libby
      The unique thing About the human body is the blood vessels in the lungs will constrict when Oxygenation drops. The body’s role for this is to shunt the blood to one area to improve oxygenation there. However, as we all know, that is the basic definition for pulmonary hypertension. (Oxygen is also a Vasodilator.) That is Basically how several pulmonary hypertension medications work, they act as a Vasodilator.

      So if you do not use your oxygen as ordered by the MD, well you can figure out The consequences. I strongly recommend that you follow your doctor‘s advice.
      Julie

    • #23208
      Jo Ann white
      Participant

      I now do a half hour a day of aerobic exercise on an exercise bike or arm cycle. Find this helps with swelling and keeps muscles around my lungs and heart strong. Rehab said this was critical to avoid further decline.

    • #23209
      Nancy Fant
      Participant

      I knew I needed oxygen but my doctor thought I was fluid overloaded. I do feel better with it and got a POC (portable oxygen concentrator) which is so much better than the tanks.

    • #23210
      Jo Ann white
      Participant

      Portable oxygen concentrator is great if you need no more than 3 liters, just like bonsai regulator is great if you need no more than 6 liters. But even at 3 liters poc is heavy and noisy and batteries don’t last long. Be sure to try before you buy.

    • #23215
      Brittany Foster
      Keymaster

      Jo Ann, I remember you talking about that equipment for your oxygen. I am glad that you are able to get around for as long as you are able to with that helping to conserve some of the oxygen. It seems like it keeps it more at a pulse type setting with that since it is working when you are breathing in. like I said in an older post, I found out that this type of oxygen delivery isn’t optimal for me so I have been having to use the tanks and just putting it at the continuous flow. The problem with that is how quickly that runs out! I’m sure you know what that is like.

    • #23218
      Brittany Foster
      Keymaster

      @julie-placzek Thank you for your feedback to Libby. I know that it was and still can be hard for me to accept that oxygen really improves some of my symptoms I experience. When my oxygen levels drop I can literally feel the constriction and tightness happening within my body. I mostly feel it in my chest and my neck when my levels get low. It’s amazing what oxygen can do and how it can open up the vessels so that we can have better oxygen to places that need it in the body. You are right that it’s so important to follow what the doctor is recommending even on the days when we try to convince ourselves that we don’t need it or don’t have to use it.

    • #23221
      Brittany Foster
      Keymaster

      Jo Ann, Exercise and moving around is really SO IMPORTANT to get rid of the extra swelling or fluid retention. I always get bad fluid retention after a hospital stay and the more that I move around the days after I get out, the better it is. Sometimes I also need the help of my diuretic but I try to do things more naturally and let the body heal on its own terms. Walking and being up and about as much as I can helps with that.

    • #23222
      Brittany Foster
      Keymaster

      @nancyfant I am glad that you have the POC. I also have one and find it really helpful when I am going on longer trips or need to travel. Even though the POC doesn’t give me all the oxygen I need, it is still better than having nothing at all. Were you able to get your insurance to cover your POC? I know people have trouble with that piece of it.

    • #23225
      Colleen Steele
      Keymaster

      @tatiana-melo-zacarias my son received a heart and double lung transplant 5 years ago. He no longer has PH or needs oxygen but when he did he used a home oxygen concentrator (HOC) and when out and about he used cylinders.

    • #23227
      Donna Dee Tubbs
      Participant

      Hello I am on Oxygen, my saturation is 4 leaders at rest. 6 leaders walking down the street. We have 58 steps to our front door. I have 2 concentrators that are hooked together the tubing Y off and I’m on a 50’ line allowing me to come up out steps on 12 leaders …. My Dr tells me that my transplant will be soon. I have been on and off oxygen for the last 14 years as my Dr.s orders. So it worked as it should until last summer when the Remodulin didn’t do it anymore. That’s when I was put on the Transplant list. Follow what your Pulmonologist tells you. This group has so much knowledge and allowing me into each of your personal successes.
      Donna

    • #23228
      Brittany Foster
      Keymaster

      @donna-dee-tubbs Thank you for such good feedback about the group! I really do hope that it has helped a lot of our members. It can be hard to want to follow doctor’s orders but in order to keep more years in our life, it is necessary. I hope that you are able to get your transplant soon and that is so tough that the medication stopped working for you. That must have been a huge disappointment. How long did it work for you for?

    • #23229
      Brittany Foster
      Keymaster

      @colleensteele I recently had to go back to using the tanks or cylinders too. Did you guys have a home filler system? This makes it easier for me so I don’t have to keep calling supply companies.

    • #23230
      Donna Dee Tubbs
      Participant

      When I was using subcutaneous Remodulin the lavender button wouldn’t stay in. My body would turn red, swell up to the side of half inflated football and pop out. The longest I could keep one in was for 3 weeks. that last time it abscess and I had to have the surgically removed. I now have a Hickman and a infusion pump…while I was in the hospital UCLA my teams (yes 5 teams) of Doctors decided to list me for transplant. There is a lot emotions. November, December, January, and tomorrow the last day of February. I have made it to the top of the list. Dr. Sagger told me yesterday that I was “really close”.. Funny thing I had to have blood test. There was 4 patients in the lab at the same time as I was.. One man 10 days out of the hospital was amazing you would never believe. A lady that was only hospitalized for 9 days after her transplant 20 days ago, she carried her pillow, 2 other gentleman both transplanted sense the first of the year..Oh and no oxygen tanks.. I will keep reading your blog, you and your group have so helpful.
      Thank you

    • #23234
      Brittany Foster
      Keymaster

      @donna-dee-tubbs My best thoughts are with you! That is amazing that you were able to see a few that had transplants that were doing so well. One of my friends has CF and had a lung transplant and he was out of the hospital in 6 days. It was tied for the record of quickest recoveries. It is amazing how much progress can be made in such a short amount of time. What a wonderful gift ! Always feel free to come here for support any time. We are with you!

    • #23268
      Jen Cueva
      Keymaster

      Hey @donna-dee-tubbs, I am so happy that you saw a few people who inspired you while waiting for your transplant. Cool that you are at UCLA, Dr. Saggar isn’t bad on the eyes either. Hehe
      Do you also see Dr Channick there? He was my PH doctor for about 10 years, but I am now in Texas. He was at UCSD, Boston, and recently he moved back to SoCal. I adore him.

      Best of wishes to you and know we are here. I am excited to hear more about your upcoming transplant. A local PH friend here had her transplant several weeks ago and is doing amazing!

    • #23281
      Alfred Gronroos
      Participant

      I started on oxygen about years ago at night only. We were off the grid so I had to use tanks but VA supplied them so it wasn’t bad. After falling and braking ribs I was told to use 24/7.We lived in Colorado at 8700′ . Being in Colorado I had seen a lot of people using oxygen so it was easy for me to accept the fact. I am from Minn originally and no one carried oxygen unless in a hospital. I have a home concentrator, a cpap which is going to be replaced with a bipap when the VA finds one for me. I use 4 liters and do use the pulse regulator at 5 to help the small tanks last longer. But I think I will have to go with the bigger tanks and the cart. So hard to navigate with the cart while shopping and one hand is pulling that around. Unfortuneately we all have problems. Al

    • #23286
      Brittany Foster
      Keymaster

      @alfredjohn I know what you mean by pulling the tanks and it being hard to do anything else when your hands aren’t free to do something like pushing a cart around. Something that I have done is put the oxygen (even if it bigger) right inside the carriage and push it with the groceries inside. I usually use a larger oxygen cannula so that it has a longer cord that allows me to do that. You can always ask for an oxygen connector piece to extend the cord and make this easier.

    • #23713
      Stephanie Mitchell
      Participant

      I recently started on oxygen. I’m on 2 lpm 24 hrs a day. At first I thought I really didn’t need supplemental oxygen but the oximeter readings don’t lie and even at just 2 lpm, I can tell an almost immediate difference in how better I feel when I go on oxygen.

    • #23720
      Brittany Foster
      Keymaster

      @stephanie I feel the same way about the oxygen! I think that I tried for a while (and still admittedly feel this way too sometimes) to pretend like it wasn’t necessary or like I would be okay without it. But, there are days when I am feeling symptoms and check my o2 and it reads 80 or even sometimes in the 70s. It is a reminder of “okay, time to do the right thing now”

    • #23737
      Jen Cueva
      Keymaster

      Hi Stephanie, I, too, did not think that I needed to use my oxygen at first. It took me a while to realize that it would benefit me. Using it at night has been a struggle, as I will do it for a while, then stop. Of course, my medical team reminds me to use it. I do find that when I do use it, especially at night, I can feel the difference.

      Lately, I have been much better with this, because I realize that it helps me throughout the day. I also wear oxygen when I am walking, etc., and as needed.

      Like Brittany, I often will check my oxygen sats, and it shows lower than my norm. So, I will use it for more than a day.

    • #23739
      Stephanie Mitchell
      Participant

      Jen, It is amazing what even a little bit of oxygen can do to perk you up. I wish just the oxygen would do that for me today. A little bit of background on me… I have Myasthenia Gravis, a neuromuscular disease that affects the muscles that control my breathing and also some other core functions like swallowing and elimination. Because of my MG, I use a ventilator at night and as needed during the day. I use a full face mask for the vent with the oxygen bled into the vent via a high pressure blender. Today, my MG is flaring and I’ve been on the vent since going to bed last night. It’s a real pain having to wear a full face mask as you can’t easily communicate and making in impossible to eat or drink with it on. Since I felt like I might be on the vent after waking up, I did place a nasogastric feeding tube last night so I could get some nutrition and fluids. I have these flare ups probably a couple-three times a month and they last for a couple of days or so. I do have some more severe flare ups, typically a couple of times a year, in which I have to be hospitalized and intubated for up to a week or so. My pulmonologist has been trying to talk me into having a tracheostomy as that would allow my to easily be connected to my ventilator and would allow me to eat and drink without having to use a nasogastric tube. I’m still on the fence about having a trach. I can see the many positives of one and the negatives of having to maintain it when I don’t need the ventilator. When not on the vent, I could cap it off completely and use my nasal cannula for oxygen or I could utilize the trach with an oxygen adapter and a speaking valve to that I could speak with it uncapped. Anyone have any experience with a tracheostomy, either personally or with someone you know? If so, I’d love to hear your feedback and recommendations.

      Thanks,
      Steph

    • #23758
      Brittany Foster
      Keymaster

      @stephanie you ask really good questions ! Thank you for your honesty and for sharing your story with us. It is so interesting to see all those impacted by PH but the different conditions that have caused them. I was tested for MG recently by my pulmonary team because of the similarities in what I’m going through with the breathing, use of the vent, respiratory muscle weakness, feeding trouble and the use of my feeding tube. I was told about the trach option but that is not something that we are discussing right now with my medical team. I know that for some, it really does provide a lot of relief. I am a part of a group online for central hypoventilation sydrome which is the sleeping condition that I have and need the vent for. They have always offered good advice about trach tubes and using them and getting used to them. Maybe others will have experience with this here though!

    • #23766
      Stephanie Mitchell
      Participant

      Thanks Brittany. Do you have a link to the central hypoventilation syndrome forum? I’d like to read up and maybe reach out to them about having a trach. As much as I don’t want one, I’m thinking that having a trach might be the best choice for me overall.

    • #23775
      Brittany Foster
      Keymaster

      @stephanie it is a Facebook group for adults with sleep apnea. You can type in Adults with Sleep Apnea on Facebook and it should come up! The particular group that I am talking about it a congenital central hypoventilation syndrome group. So the kiddos were born with this condition and a lot of the parents are the ones that are on the group. Are there any MG groups too or support groups online? I know the online community really has helped me a lot

    • #23848
      Stephanie Mitchell
      Participant

      Brittany, do you have central or mixed apnea?

    • #23855
      Brittany Foster
      Keymaster

      @stephanie I have both central and obstructive so it is mixed. What are you diagnosed with?

    • #23875
      Stephanie Mitchell
      Participant

      Brittany, I have mixed also, but the majority is obstructive with just a small component of central. Enough that I have to have a vent/bipap with a backup rate in case the central apnea kicks in.

    • #23894
      Brittany Foster
      Keymaster

      @stephanie I find my vent to be way more helpful for this too with the backup rate ! When I am sick or have to take medication that may lower my respiration rate, I am especially grateful to have that equipment ! Were you snoring, is that how they first noticed your obstructive apnea? I don’t snore, I just stop breathing and breathe very shallow. I have been that way since I was a kid. My mom always checked on me while I was sleeping to make sure I was still breathing okay because my chest went up and down so slightly .

    • #23903
      Stephanie Mitchell
      Participant

      Hi Brittany, I was first diagnosed with OSA and they later found out that I also had CSA. My Trilogy vent is set for a backup rate of 12. I too breathe shallow and often I will trigger the backup rate as I’m not breathing spontaneously fast enough. My mode is AVAPS which provides an average tidal volume of air at the minimum rate of 12 breaths per minute. The inspiratory and expiratory pressures vary in order to give the required minimum volume, but they are set at baseline high enough to deal with the OSA.

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