Finally Pulmonary Doc tests

[JANET127]

Hi..I saw my new Doc and took the testing. She said my lungs are at 38%. I know my heart is at 40, which I knew. She is sending me to Pulmonary rehab to learn! I have a paralyzed diaphragm sitting in the middle of my left lung,so that lung is done. Does anyone else deal with this? This was all damaged from chemo..20 years ago. My doc said if my oxygen goes into the 80's put my oxygen back on. If its 90 and above and I feel ok, I can leave it off. Any suggestions?

[RibvanRey]

Hi Janet. I assume that you have an oxymeter which reads your blood oxygen levels from your fingertips. In hospitals these monitor your levels and trigger an alarm at 89%. So your Doc recommendin that you use oxygen when you drop below 90% is pretty normal.

It helps to protect the heart and brain from damage.

Regards, Rib

[JANET127 in reply to RibvanRey]

Thanks for your input! YesI need my Brain Protected Big time! lol Janet

[Mardi]

I hope you get a good result from rehab. That is so scary having 38% lung function . Mine was in the low90's and I was worried! Twice I was able to get physiotherapy treatment of an hour a visit ( in Australia) and the deep breathing exercises I do for at least half an hour in the morning and when I'm driving ,have helped a lot- I don't know if we have the rehab course for lungs - probably but I'm not sick enough to know. -I'm asthmatic and have mild bronchiectasis and PV (chronic type of leukaemia). I have discovered muscles that I didn't know helped with breathing . Some of them have probably never been used! When I had had a week in hospital with pneumonia 8 years ago, they put the oxygen on if it got under 90% . How much Chemo did you have? I've never heard of a paralysed diaphragm. Good luck

[JANET127 in reply to Mardi]

Thanks for your input! I think what your talking about is my oxygen reading. That in in the 80's and 90's. What the doc said about 38% lung function ...I have no idea. I thought someone on here would explain it to me. I had chemo called CHOP. I didn't know it had a high rate of causing Heart damage. and being so close to my heart caused the lung damage. Except I had been a smoker for years. quit 22 years ago. Leukemia is a sister cancer to the one I had. Non Hodgkin's Lymphoma. That is the one Jacky Kennedy died of. Janet

[Ergendl]

One of the members of the singing group I run only has one lung because of a similar problem. He says proper singing training (which is a part of what we do) has made such a difference. It's worth trying as well as PR.

[JANET127 in reply to Ergendl]

Thank you for your input! This gives me hope! Janet

[Roysieboy]

Hello Janet. Do not know anything about your condition but I go to Pulmonary rehab and have done since last August. You meet a lot of nice people there and learn a lot about coping with conditions such as yours. I have got emphysema and copd and found it invaluable. I would like to wish you the very best. Good luck. 👍🤓

[JANET127 in reply to Roysieboy]

Thank you for your input! It sounds like I will like rehab! Janet

[madametobacco49 in reply to Roysieboy]

Just started pulmonary rehab--Im hoping it goes well--Sounds like it did you good. 6 in our group! Reading your post gave me a boost this am--ty, MmeT

[Roysieboy in reply to madametobacco49]

Good luck to u. Hope all goes well. 👍🤓

[madametobacco49 in reply to Roysieboy]

thank you --just heading there--MmeT

[Hidden]

I also have a paralysed diaphragm on my right side as a result of an accident in which I fell on some tree stumps and broke 2 ribs. It wasn't diagnosed for 3 yrs after the accident. I kept being told I had anxiety breathing. A consultant happened to see on a CT scan that my diaphragm was higher on one side. It appears that if you have no other problems it's possible to manage well, ( both sides, and you do have a problem). You look like you do have other problems aswell, which will make it more difficult. I tried to get pulmomary rehab as I have a lung injury aswell and have about 70% lung function, but was told they only did it for people with lung conditions, and not injury.

I have now found a private chest physio who is taking me through an exercise tolerance programme, which is helping a lot as I had got into the habit of poor posture, and not being able to control my breathing.. It is useful to have a professional to help you make the most of what you have.

[JANET127 in reply to Hidden]

Thank you for your input! I feel connected when I find others with the paralyzed diaphragm. Janet

[Offcut]

I have right side paralysed diaphragm and avoid bending over as you may well know anyway as it takes my breath away when I do. I have found I can no longer swim since the paralysed diaphragm as I cannot breath and swim at the same time.

As for PR I did find it very good and informative as you are given exercise and talks on how best to deal/cope with the lung conditions. Unfortunately Now I have been diagnosed with High PH I am now exercise intolerant!

I have had an oxymeter and do find it very useful not to badly priced either.

Be Well

[JANET127 in reply to Offcut]

Thank you for your input! Yes, totally can't breath when I bend over! Thank you for validating me! Janet

[Hidden]

When I was diagnosed, after a sniff test, (not sure why it's called that as you just breathe in) I was just told it's paralysed, can't do anything, might account for your breathlessness. I was googling it on the way home, and found a good article which reassured me. (cannot find it now). There are a number of articles which are mainly from the US.

The bending over and the swimming are just right. Just tried trimming the edge of the lawn, and have had to give up. I have found lying on my back difficult, and lying on my left side, presumably because I'm squashing my good side also difficult. I was seeing an osteopath because of shoulder problems, and she noticed that my right shoulder blade did not slide over the ribs as it should and everything had seized up and felt it was because I was not breathing properly on that side. It seems it can have a range of effects, so getting help with breathing exercises seems a good idea.

[JANET127 in reply to Hidden]

Thank God I am a back sleeper! Wow breathing sure can effect more things in the body, that I knew of! Anything to help! I know I can't swim because of my heart damage, but one day years ago my Grandson yelled to me when he was swimming. I float on my back really great, and went after him that way! Got him back in to safety! When theres a will, theres a way! Janet

[Lazarus]

It sounds like your lung function is at 38% of the predicted value for your age, height and weight etc. But you do need to check with your doc when they say 38 % , what they mean by this. You HAVE to be 38% of something, you can't just be 38%. The lung function tests can check all sorts of things so, I advise you to get some more info and ask what each of the figures means for you and what action you can take. Hope that helps

[JANET127]

I listen great...but at times I get overwhelmed and can't remember what was said. I think the Doctor said I have 38% function in my lungs? Yes and it had to do with my weight/height! Thank you for your reply! Janet

[GLITZY75 in reply to JANET127]

It sounds like it is 38% predicted, it's obviously not great but I suppose it can be worse. My mom was around 20% and still functioned ok for awhile--considering what she was dealing with. All you can do is the best you can. This disease truly breaks my heart.

[tomc]

That`s interesting about you O2 level,Ihave been told anything between 88 and 92 % is ok for me me as "COPDrs can copw with less oxygen.

[JANET127 in reply to tomc]

Interesting for sure! I am learning! Thanks for your reply! Janet127

[GLITZY75 in reply to tomc]

I actually do recall the doctor saying that to my mom while in the hospital. She said even occasional dips to 85 were not the end of the world-- The context in which was said involved many other things-- it is not ideal, but COPdrs can live with that.

[1155Cat]

Pulmonary rehab is the best for those of us with lung problems. I was diagnosed in 2010 with COPD, I smoked in years prior for probably 25 years maybe a pack every three days or so. I also cleaned housing using bleach and ammonia, MEK floor stripper. When I was diagnosed I was at 19% lung function and they were ready to put me on the transplant list.

I decided to have a second opinion, and that doctor sent me to Birmingham Alabama from Florida to see a doctor in reference to lung reductions. I was a perfect candidate, two weeks later they took my upper right lobe and that put me up to 27% lung function. Three years later they went in and only wanted to take half of the upper left lobe but ended up having to take the whole upper left lobe, and that put me up to 37% lung function. This has prolonged me having to have a lung transplant !! So Pulmonary Rehab and me are really good friends !! It helped me so much, and I also made some great friends. I have never been on oxygen.

[JANET127 in reply to 1155Cat]

Wow Cat..you've been thru it! At first 19% lung function! Oh my! I can't imagine! Now we are about the same. I smoked for years too and would clean my kitchen floors with Bleach mixed with Ammonia! I did't know..I was young and stupid! Actually I think my lungs are breathing better since I had a operation in October. Total Hysterectomy and a mass was strangling my bowels! Doc kept saying I was constipated! I was not! I could have died if I didn't keep pursuing it! Now I have a big Hernia in my belly cause I had Pneumonia when they operated. Second Hernia...but I feel I am breathing better! Odd! I have a paralized diaphragm from chemo years ago. It is in the middle of my left lung. My stomach /intestines are coming threw that hole , now this one! So I am mystified on whats happening. Before when I bent over..I would lose all breathing. Now that's not happening? Good!! Janet127

[1155Cat in reply to JANET127]

Wow 😯 you have been thru the wringer !! God Bless you !! I feel your pain ... this iis all so frightening. I try to walk a few miles every day, I am thankful that I’ve never had to be on oxygen. I also have a hernia that Has to be repaired along with three umbilical hernia’s. I have to have a CT scan every six months, along with a bronchoscopy because of a spot they found on what’s left of my left lung.

So how can they fix the hole where the intestines come through ??

[JANET127 in reply to 1155Cat]

Hi CAT! I have cats too! So what are they going to do for your Hernia's? I have a Hiental one that I spoke about, now I have one called Incision Hernia from the operation. If that one ,the intestines come thru I have to get to the Hospital STAT! Are these really dangerous? Scary is right! Janet127

[1155Cat in reply to JANET127]

I have a vertical hernia .. right in between the stomach muscle .. they fixed it once about eight years ago, but it came through again. They want to hold off on doing my hernia surgery until they have to do it, because they don’t want to have to put me under anesthesia if they don’t have to. Once it really starts causing me pain, it will need to be fixed regardless. It can be dangerous if the hernia gets choked off and it starts hurting.