How oxygen therapy helps with pulmonary hypertension

[julie-shrive]

I am self funding an oxygen chamber with MS Therapy Centre [ don’t have] in uk as when asked hospital on answerphone to convert CPAP to oxygen as ineffective was sent Warning Letter.Could it be Technicians on remits are in charge with no discretion so blame? , Could it be that the Fund holder are allowing Funds to be misappropriated by LAs CCGs [committees their employees] ??!!

[judi-svendsen]

I have a small concentrator that get me out and doing the many things I’m involved in and I’m not restricted to home.

[brittany-foster]

Hi Judi,
It’s so great to hear that your concentrator helps you have more freedom so you aren’t are restricted at home. I have a portable one and tanks for when I go out. The portable one that I have needs charging and the batteries don’t seem to last as long since I am on continuous flow! How long do your batteries last you in the concentrator?

[judi-svendsen]

Hi Brittany, sorry so long to answer you. My Concentrater lasts a good long time like 6 hrs on 4ltrs, but I carry a plug with me to my stitching groups and plug in, I also have one in my car that I use all the time when I’m driving somewhere. I have the Inogen and it was costly but I think it was money well spent as I’m an active person. I have Oxygen tanks at home that I always use in my sewing barn and like now when I’m at my desk and they (Lincare) replace them weekly.

[brittany-foster]

Thanks for the info Judi! I am glad that your oxygen concentrator is working well for you and seems to last awhile. Do you have extra batteries for it or do you just charge the one that you have? Just curious because I am looking into it. Can you hear the puff noise? Does it have a continuous flow option or is it just pulse flow? That has been my biggest struggle in fining a POC that is good for me because most of them are pulse flow where you can hear the little burst of oxygen coming out almost like a popping noise. That bothers me a lot on my POC.

[ann-goddeyne]

I have just started needing to use oxygen on continuous flow. Switched to liquid oxygen and my portable lasts 2 hours. It’s light so I like that but the short time worries me

[brittany-foster]

Hi Ann,
I am on continuous oxygen flow too and it does make it run out quicker than the pulse flow. I use oxygen tanks but they aren’t liquid oxygen I know that the time is limited on them so like to have a home filling unit for mine so I can always have a few charged and a couple tanks charging at home so I can swap them out and continue with what I was doing outside of the house. The home filler makes this easier for me. Is there a home filler unit for the liquid oxygen? Not sure how it works ! How long does it take to recharge them? Are you able to request extra tanks to have to keep with you as back up? Just throwing out some suggestions! As I said, I don’t know much about the liquid oxygen so please feel free to educate me further!

[Deleted User]

I was just wondering if others with PH have a problem with ascites? I have been told that I have severe PH and right heart failure. When first diagnosed about 2.5 years ago, I had lots of edema in my ankles and feet. Though still swollen, they are better since being on lasix. What is not being helped with diuretics is the fluid in my belly. I’ve had a small abdominal hernia that has become huge. I was told to live with it as I was at high risk for surgery. The swelling in my abdomen has become so much more that I cannot sit straight up for very long because of increased shortness of breath. I think the swelling is pushing against my diaphragm making it difficult to breath. I sit semi reclined. My O2 sats stay stable and I am not yet I am constantly sob. I am able to tolerate 20 minutes of walking at a somewhat slow pace by treadmill. I was up all night last night because every time I started to fall asleep, I woke gasping for air. Had to doze in my recliner. I felt if I tried to sleep in bed, I would have died in my sleep. Obviously I’m not having a great morning. I can’t seem to get my pulmonologist to take me seriously because I do ok on my six minute walks. The swelling in my abdomen has gotten so big that many of my button down shirts don’t fit any longer. BTW, I have noticed some Raynaud’s symptoms when I get out of the shower. Hey guys, I’m just feeling sorry for myself today.

[brittany-foster]

Hi Mary,
I’m right there with you . I have had one of those days and was lucky to get in to see my therapist and spent most of the session today just crying. It was what I had to do to let go of the aggravation and hurt I was feeling from my body. I’m sorry you are having a hard day and are experiencing these symptoms. I do have some extra fluid retention in my stomach and also manage chronic problems of the reproductive system and hormonal fluctuations can play a big role in my shortness of breath and swelling. I know the feeling as if you can’t breathe because of this. Something that helps me is to stay propped up and not lie flat because laying flat or on my left side really makes me worse. I would suggest heating pads if it is also painful for you. I use thermacare brand for menstrual pain (even if you don’t have cramping from this reason it could still help relieve some discomfort). Maybe ask your doctor if you can take something for the swelling too like a high dose ibuprofen. There are many on here who suffer with GI issues too and it is tied into the PH effecting different parts of the body and how slowly I process food because of lack of oxygen and blood flow. Maybe worth mentioning to your doctor to see if they can get you a referral for GI to address the swelling !