Having a hard time breathing
Posted , 7 users are following.
just a brief history I am a 57 year old female. I was diagnosed with bronchiectasis in June and then in September I got what is called a pulmonary cement embolism. (very rare, in told) Yes, it is an embolism in the pulmonary artery in my lungs that is made of cement that they used to fix my fractured vertebrae. This happened following a procedure I had. I started having problems breathing and ended up in the ICU for a couple of days. At this point I was sent home on blood thinners and oxygen. after 7 weeks I was told I could stop both and since my oxygen was doing well I was happy to quit it. in the last week or so I have been really struggling to breathe. Sometimes my oxygen will show normal and sometimes it will be around 83-86. this typically happens when I get up to do something like go to the bathroom or walk to the kitchen for a drink of water. I am back to wearing my oxygen 24/7 and yesterday I saw my pulmonologist again and he put me on 30 mg of prednisone and i had an X ray of my chest done and some blood tests done and a couple of pulmonary test done. the blood work all turned out fine. And he ran like a CBC and anemia panel and inflammation panel. the chest x-ray was where I'm a little confused. he said that my lungs were not fully inflating with air so his suggestion was for me to breathe deeply. he is a very conservative doctor and as much as I appreciate that I find that that treatment is a bit, well ridiculous. It's not like I'm not breathing. I am making an effort to breathe deeply since they told me to start doing that. but of course every time I get up the symptoms return. Does this seem to you like an appropriate treatment?
0 likes, 42 replies
janet24 amkoffee
Posted
Hi Amkoffee...oh man, I'd be worried to with a pulmonologist like that!!! Have you asked if there is a procedure to remove the cement?
Hope you get some answers very soon...
Janet
amkoffee janet24
Posted
that makes me feel a lot better able my opinion. I just think it sounds crazy as a "treatment" but I wanted to bounce It off others to see what tall of you thought. as for the cement being removed there is a procedure but I'm told it's very dangerous and since blood is flowing past the cement it is not an option for me because the risk s out weigh the benefits. and the emergency room doctor and my pulmonologist all said that my body would deal with it the way it does. No details on how. the emergency room doctor did say the worst case scenario would be a pulmonary infarction. I think I'm going to have to find me another pulmonologist. I've only been seeing him for a short time and my previous pulmonologist I was with for 10 or more years and he's the one who diagnosed me with bronchiectasis. but I got very frustrated with him because he wasn't giving me the information I needed to know about my bronchiectasis. When I called him on it he said I didn't ask the questions. Well I didn't know what questions to ask and besides he should just be forthcoming with everything I should know about a disease he just told me I have. so I'm starting to think I jump from the frying pan Into the Fire. I hate starting over with a new doctor.
retirednana amkoffee
Posted
i think i have a solution. clinics like MAYO and CLEVELAND CLINIC are 2nd opinion places. They also have online visits. For ANYONE. Check into that. If not, find a highly qualified pulmonologist and visit specifically for a second opinion. Its done all the time. You dont even have to tell your current doctor you did- just the one youre getting the 2nd opinion from.
janet24 retirednana
Posted
I totally agree and was going to suggest that too...it's not so easy in the UK though.
AmKoffee...please keep us posted.
amkoffee retirednana
Posted
I really like this idea and will. definitely look into it. I cannot go to the Mayo Clinic or Cleveland Clinic for an appointment it's just too far for me to drive but I will certainly look into an online or phone call appointment.
elizabeth49611 amkoffee
Posted
I have bronchiectasis with asthma.
It sounds like you are not getting the mucus in your lungs up. Having mucus sit in the lungs can cause shortness of breath and infection. Also, you may have asthma as well. It wasn't until I talked to my specialist about the treatment of my asthma that he then prescribed an inhaler. It did a world of good.
Breathing deeply helps strengthen the lungs. Your pulmonary specialist should have given you a flutter valve or an acapella to use. It's a hand held device that you take a deep breath and then breath into as hard as you can. It helps loosen the mucus in the lungs for easier coughing up.
I also have a percussion vest that I use with my nebulizer to help loosen the mucus.
Talk to your specialist, if what meds you are taking are not working for you, have him/her try something different. What works for one person may not work for you.
Beth
aitarg35939 amkoffee
Posted
Regardless of whether you have a mucus issue -- and Sjogren's complicates the heck out of that issue- failure to fully expand the lungs is a big issue. For some unknown reason, North Americans tend to only use the upper part of our lungs. No one knows why but they've done the comparison studies.
It's a hard habit to break. The tips that I was given was that the abdomen should rise and the lungs should expand enough to tickle the right kidney. I cannot do that all day, especially with trying to do a full exhale, then hold 3 seconds before next inhale. But just doing it for 10 minutes here & there throughout the day helps. This helps prevent pneumonia, so it's a good habit to develop.
Have you checked in back issues forum to see if anyone there has a cement problem like yours? Since you've posted about it several times here i think it's safe to assume that no one here has experienced that.
amkoffee aitarg35939
Posted
I have not. I don't know how but that's because I've never tried to do it. I will look into it. Thank you for your suggestion.
Sabra amkoffee
Posted
amkoffee,
So sorry for what you're going through.
No the treatment -actually lack of treatment- does not sound like enough as obviously it's not fixing the problem at it's cause, unfortunately often the norm in western medicine.
I don't know much at all about embolisms, but cant they get that cement out of there? I would start searching the internet to see if there is any real specialist/ scientist/ researcher who would take something like that on.
Sending a prayer.
(Just noticed that Janet had just given you the same idea)
louise17255 amkoffee
Posted
Hi Amkofee,
I am sorry you still seem to be having such a hard time. I have been having issues with difficulty breathing too. I used to measure my blood oxygen levels and they were often in the mid 80s especially after doing something that requires effort like getting up from the bed. When I realized measuring the levels made me anxious and even more breathless, I stop doing it. At the pulmo's office it is often low as well but I am reluctant to go on oxygen since it may be a way with no return. My pulmo noticed on the X-rays that my right lung appear to have less capacity and more scar tissue. Is that why your pulmo said you needed to breathe deeper? When I had a bronchoscopy a last July they found a hint of Micobacterium Avian and my pulmo is considering treating me for that. I am reluctant because the treatment consists of 3 different antibiotics for a year or more. I am afraid of the side effects and unsure what to do. Right now I am getting over the worse cold virus I ever had. Anyway, sorry to hear you are still struggling but you are still relatively young and may have many good years ahead of you. In terms of using the Percussion Vest, with your broken rib it may be counter indicated. Also, I actually have not found it that helpful. I find I get just as much mucus out with just the sodium chloride in the nebulizer and adding glutathione plus. Other things that I find helpful with the breathing stress is trying to meditate. It may also be worthwhile to ask for a referral to some a physical therapist who specializes in breathing problems. But maybe you have tried that already. Anyway, good luck again. Keep up the good fight.
Louise
aitarg35939 louise17255
Posted
Hi Louise
Great points about the vest and the tech-induced anxiety. As to the Glutathione Plus, I perked right up. I use glutathione for brain issues with aphasia and word sorting. Looked up the Plus formula. The main thing that's helping you with mucus is the NAC, short for N-acetyL-cysteine. Folks have to pay attention while using that stuff as it can have strong effects on personality/mood. Made me rage at 100mgs daily. Interactions with other meds & supps are likely.
It is sold by itself as NAC and also as MucoMyst & whatever that company calls its tablet formulation. When I first came into the COPD forum exactly 3 years ago, everyone in the UK used MucoMyst regularly. Don't know why no one talks about it now.
louise17255 aitarg35939
Posted
Hi Agitarg,
Nice to hear from someone in the UK. Here in the US I had never heard of MucoMyst. Thank you for your input. It seems there is a fashion in everything.
Louise
aitarg35939 louise17255
Posted
I'm a Texan, in Texas, Louise. MucoMyst or MucoMist, used to be widely available here, too, some time back. Some of my docs know it, the ones who tried me on NAC.
amkoffee
Posted
The drug name in the US is Acetylcysteine my pulmonologist prescribed it to me and I cannot tell you how much it helps. he says it's essentially Robitussin. It comes in a weird form, because it comes in a bottle that you use a syringe to pull it out. but the lid does come off quite easily and then you can put it back on if you are not supposed to use all of it. I hope this helps.
amkoffee
Posted
I forgot to mention that this medicine smells horrible. Kind of like old smelly socks. But it does not have a noticeable taste. It's also kind of sticky. so if I wear my glasses while I'm using it I have to clean them afterwards. And it is supposed to be used in a nebulizer.