Oxygen starvation, palm of hands turn blue, fingernails and lips

[daizy2]

I have heart failure etc.. but this unrelated.

At times, there are symptoms of oxygen starvation, feeling of unwellness, and sometimes, fingernails, lips go blue.  More recently, there was such an episode and the palm of my right hand went blue.  I know that when this happens, my oxygen sat goes down because once, I went to A&E, explained the symptoms.  The doc took my oxygen sat and this was down to 90%.  It was probably much lower, because by the time I saw the doctor, symptoms had subsided.

Any idea what these are.

I now know that there are nodules on the lungs but was told not to worry about these.

Thanks
Daizy

[Smellydiaper]

I too suffer from blue hands.  Two years ago I had the same problem but the cause was a four inch piece of my port athat was left in my ehart.  I still carried out my daily routine but my hands were turning blue, difficulty breathing, and my legs were throbing.  The only thing that helped was exercise.   I had the tubing removed and have felt much better. Last night my hands turned completely blue.  I do have metestatic breast cancer in my lungs but basicly I feel fine.  Does anyone know what could be the cuase now?

[jannieb54]

When I was first diagnosed doctor called it Interstitial Lung Disease.  Stages were not mentioned to me.  In fact nothing was informed to me.  Shortness of breath was my first symptom.  Then I jumped to being told I was in the latter stages of PF.  The only medication I've been on is Prednisone also.  Didn't help my lung scarring at all.  I walk and get around.  But have learned to move slowly!  If I sit for to long then get up, I start the spasm of coughing and coughing until I spit up clear phleghm.  IThis has been happening much more often to me.  That along with it goes the stomach queasiness and nauseous feeling and then headaches.  I cough continous and then headaches that start in my brow area and move to the back of my head and neck area.  I feel coughing is doing something to my head to cause this.  Seems like the continous coughing jars my head then the headaches come on.  As for my stomach this I had at the beginning of PF, but it went away for a long time, and now has come back.

Diagnosis and a good pulmonologist is the key to me.  I live in a small rurual area and drive 45 miles to a city to a clinic where only 1 pulmonologist on staff that my insurance will allow me to see.  Today, I received a letter from this doctor saying he is leaving as of November 16.  He has given me the name of another doctor in the same city.  I've been told the doctors associated with a teaching hospital are very good.  I would have to drive 3 hours for that care.  Trips are very hard on me.  Getting in and out of vehicle, making sure I have enough oxygen, then changing from long term oxygen tank in vehicle to small portable tank when I walk.

It will be 5 years come December 1, for the PF.  I read and most articles predict 10 year life span with disease.  But I can tell my body has gone down in the past year.  I don't re-coop from coughing like I used to.  The smothered feeling I get when moving around or coughing is getting much worse.  Very scary feeling.  I still have my appetite though.  Has your husband tried any supplements from health food store?  I have a friend in Texas who is taking one.  In our local paper a man with COPD listed 2 he swears by.  My lung doctor approved me taking supplements.  But transplant doctors in St. Louis frowned upon it.  Said they aren't FDA approved.  Not a fair statement to me, when so many of our prescription medications come from herbs and flowers etc.
There is a difference in PF and  IPF. .  Idiopathic pulmonary fibrosis I was told is the deadliest.  Sometimes don't know what causes it.  Mine was caused by my Rheumatoid arthritis.  My friend in Texas her doctors think her heratburn (GERD) caused hers.  This disease is becoming more pronounced it seems to me than it was 5 years ago.  Jerry Lewis the commedian has it.  Robert Guillet the singer just was diagnosed with it and is waiting to see if he'll be approved for a lung transplant at the age of 74.  Alot of the 9/11 first responders have it, some have already died from it, some still suffering.  If only they could find a cure or what causes it.
Is your husband able to walk or does he use a wheel chair or scooter to get around?

[gennie777]

I am so glad that you responded to me, So Sorry about the IPF: No my husband is not on any medication now at first he was put on predisone but is was not helping so they took him off it,
they also told my husband to lose some weight but it just started falling off on its own, he has lost 65 pounds sence January and he looks alful most of it he lost was his muscle mass he was in a 42 size and now he's in 36 size pants, this is extreamly hard on me to just set and watch him see the very life be sucked right out of him, he coughs some but but it's most early in the mornings and late at night, last week we went to the doctor and they told us that his lung volume is at the lowest the nest step is respiratory failure and you know what that means, it's almost a all day job just to help him and take a shower, he also has acid Reflux (Gerd) real bad, he sets in his recliner all day long and every once in awile he gets out and rides in the truck, you ask me if he has pulmonary Hypertension, The Doctor said he has it, but it's due to the IPF some test they done told us he doies have high blood preasure in the lungs. Oh yea when you found out you had the diease was it in the early stages and how long have you had it?

Thanks
Waiting to hear from you!
Gennie

[jannieb54]

I have pulmonary fibrosis too.  I am 54 and have had it since 2003-4.  I am on O2 24/7. 2 liters at rest.  3-4 moving around my house.  4-5-6 when I walk outside.  I have been to St. Louis to see if candidate for lung transplant.  I passed everything but weight.  Told me to lose weight.  Hard to do.  When I am so tired all the time.  I cough on any exertion.  Lately my stomach gets queasy and hurts as I cough so much.  Plus have been experiencing terrible headaches.  Does your husband take any medication for the IPF?   I know my PF is terminal also. So very scary and disheartning. But my pulmonolgist has told me he has had patients live 10 years or longer with PF.  Only cure is transplant.  But I am scary and wary of that also.  I have a friend who has been a surgeon for over 35 years told me I would be signing my death warrant. He is also in his 70's too and works at a VA Hospital. He told me to stay on the oxygen therapy.  Which I do because I couldn't breathe otherwise!  But I have days, when breathing and coughing and feeling so bad, that I would so consider transplant, but my husband is set against it.  Scared to lose me, I know.  Just wish they could find a cure or a safe medication.  Prayer I feel is what keeps me going.   About the turning blue!  The only time I have done this is walking and not using my oxygen.  Or taking a shower and my feet and hands turn blue, This was in the wintertime, when my hands and feet were cold and then in warm/hot shower.  Does your husband have pulmonary hypertension?  Or Reynaud's Syndrome? Changing temperatures from hot to cold maybe .

[gennie777]

my husband has IPF, it is a terminal lung diease that causes the lungs to harden, witch causes your sats to fall on any kind of exercise, my husband is on 5 leaders of oxygen all the time and if he gets up or doies anything at all, "as simple as turning over in the bed" his sats will fall into the 60's, three months ago he was put on the lung transplant list at Vanderbilt Hosp: In Nashville TN, This is our only hope: Unless the good Lord Heals him. And The other day he was just setting in his recliner and his hand and fingernail turned real blue, so I checked his sats"O2 leval and they were 94. This really puzzeled me because I thought that it was a sign that you were not getting enough oxygen in the blood, but this was not the case, ""'Any Idea what is going on"""

Waiting to hear from someone!

***@****

[Glasscrafter]

Your heart failure and cold hands might be related. Is your heart failure from pulmonary hypertension? The cold hands are probably from Raynaud's phenomena and are caused by vasoconstriction. I have the same thing happen when I exercise and I have PH. Have you been checked for PH? 60% of people with PH have Raynauds.