My COPD Reality

[Lindabelle]

Diagnosed 7 yrs ago - mild case. Last CAT scan 5 yrs. ago. Drs. act indifferent/dismissive to my concerns/ complaints. I go about every 6 months. Feeling physically unwell everyday is new normal. Have lost faith in physicians & am worn down.

[nymima01]

Hello - I am new to COPD (stage 1), but my pulmonologist was a good listener and got me on a proper inhaler to treat my condition. My PCP had me on a rescue inhaler, which did nothing, so I got myself a good pulmonologist. I knew there was something better on the market that would be better than a rescue inhaler. I am now on Flovent 2 x a day. She also put me on steroids for 5 days due to an upper respiratory infection I had at the time that was contributing to my asthma-like breathing. I know everyone is different, but a good pulmonologist should listen to your issues. There is help there to help ease the difficulties of this condition. I hope you feel better soon.

[Lindabelle in reply to nymima01]

Thank you. I know I must find better medical care.

I had to get a new PCP 2 years ago due to mine of 35 years becoming concierge and I couldn't afford the annual $1500 membership fee. My new PCP (took me 6 months to become a patient) sits typing word for word on computer rarely looking at me during appointment and has never suggested seeing another pulmonologist.

A real perfect storm.

I'll do better

[nymima01 in reply to Lindabelle]

Yes - Demands on the doctor to write all treatment plans etc during one visit have put a real damper on visits! I see a host of different doctors due to other health issues and each one has a different way of coping with these pressures. One of my doctors has a person in the room with us who types up what is said and the treatment plan. Another doctor does it herself and I have to wait for her to catch up with her typing before I continue with my concerns. And yet another sees me and runs directly to his office after the appt and enters his data into the computer before he sees another patient. I like the approach of having the extra person typing away as I speak to the doctor. It keeps the appt concise and to the point. We here in the USA have a chance to comment on our care with the providers after each visit and I always recommend the extra person. I don't know how that translates to their profit margins however!

[Lindabelle in reply to nymima01]

What a great idea! However in our area, hospitals are partnering with Drs. & running the practices out of the hospitals. Profits and protecting Drs. time is paramount in my opinion so having another person in there taking this word for word would probably show no cost effectiveness. I could be wrong so I will suggest your experience.

[valeriejean in reply to Lindabelle]

this disease is progressive you will find you are in for the long haul. Be glad your PCP is documenting your condition. In the end it will help a Pulmonary doctor and possible enable you to get disability and medical when you are bad enough to not be able to work any longer. It took me six months to get a pulm doc and a PCP doc where I live. That's the state of the medical profession these days and overpopulation and aging. If you are like me your memory is spotty. Keep a list of any questions and bring them to your appointments. Read the blogs and watch the videos on line. very informative. Might I suggest Noah Greenspan he's a pretty smart man. good luck

[Lindabelle in reply to valeriejean]

I'm blessed in an odd way, I was diagnosed at 63 yrs. old and retired early. I didn't have to go to work once diagnosed. I have great admiration & empathy for those who are suffering and still work. You are special folks! I'm now 70 and my original PCP said if I did all the right things I could live a normal life and life span. Was he being overly optimistic? Was I being too naive to believe him?

[Joaniemdc in reply to Lindabelle]

I think it's a good idea to remain optimistic

I'm stage 4 with my Copd and keep doing everything I need to remain calm and positive . Being diagnosed 25 yrs ago.im now 73 Quit smoking approxmately 5 yrs before my diagnosis. I tell all my grandsons I want to stick around for their graduations, marriages, and see them become parents. Through the Grace of God so far all but 1 will be a HS.Senior and my oldest grandson has been a dad for 10 yrs now .I'm not about to give up until I hear the trumpets blowing for me.

[Joaniemdc in reply to Lindabelle]

Just keep trying to find one.They are out there . Don't give up,

[Suzyolive]

Please see a different doctor and tell him specifically what you want. Do you want a cat scan? Do you want a different medicine? Have you been to pulmonary rehab? If not then go!

[Lindabelle in reply to Suzyolive]

Thank you for your input. I'm not someone who has told a Dr. what I want because they are the professionals. But I see your wisdom in this and you're right. I'll take your advice. I'm out of state until mid-March but will tell the Dr. what I want then.

[Suzyolive]

Please see a different doctor and tell him specifically what you want. Do you want a cat scan? Do you want a different medicine? Have you been to pulmonary rehab? If not then go!

[LORBIC]

Hi Lindabelle;

Find yourself a good pulmonary doctor, one that will listen and share your concerns. It may take going through a few before you find the right one. PCP are not trained to handle lung diseases. Sounds like you need different meds, they don't all work the same for each of us. I'm on 3 inhalers and a pill, plus I take 250 mg of Zithromax daily from Nov. to April and if I do have a flare up I increase it to 500mg.for 14 days. Depression can also cause you to feel unwell, instead of another drug in my system I see a therpist who does talk therapy weekly and it really has helped.

When was your last PFT ?

Don't give up we are here to help each other, let us know what tests have been done and what drugs you are one.

[Lindabelle]

Thank you for your encouragement.

My original pulmonologist prescribed Advair - 2x daily. I had a very mild case of COPD. I quit smoking immediately for 8 months. During those 8 months advair caused me thrush and I couldn't tell any difference in my shortness of breath which I'm convinced is caused by stress. Yes, fell off the no smoking wagon but sporadically. I am now smoke free.

Depression may play a part as you say. I have gained 22 pounds since diagnosed 2010, my Mom & Dad died 2009 & 2010. I am an only child. I have Xanax for occasional anxiety attacks (15 tabs prescribed for a year).

Last PFT 2012. Had 3 CAT scans (2010, 2011 and 2012).

Am on levothyroxin for hypothyroidism and generic Nexium (stomach/nausea problems). Told everything medically done for stomach has been done.

No, won't give up and will take everyone's advice.

[valeriejean in reply to Lindabelle]

My PCP recently brought it to my attention that GERD can exerbate COPD. She advised raising the head of my bed by a couple of inches to keep the stomach acid down. Also prescribed Omeprazole, generic for Nexium which has done a very good job for me.

[Lindabelle in reply to valeriejean]

On the Esomeprazole mag 40 mg a day and ranitidine 150 mg a day. Have bad nausea for 3 years and had GERD in 2000. 2015 endoscopy showed stomach pre-ulcer condition and completed regimen to take care of that threat . Sometimes diaphragm breathing helps the nausea.

Thanks for the info.

[valeriejean]

the reason they seem dismissive is there is nothing they can do. When the time comes that your Pulmonary Tests show you require nebulizers or oxygen then those can be of help for you to breathe. I'm not saying you can't slow it's progression by not smoking or exposing yourself to harmful chemicals so don't get disheartened. I have had very severe copd for over a decade and am on oxygen 24/7. The best thing you can do at this point is maintain a positive attitude, check the videos on line about the disease, educate yourself and if at all possible take pulmonary rehab. Short of that get your self exercising to maintain strong muscle tone ( treadmill is best ) to help get oxygen to all of your organs, as they are all affected. Keep the faith....if short of breath learn about purse lip breathing....Good Idea also to purchase a pulse oxymeter. If your oxygen saturation goes below 90, it's time to see a pulmonary doctor. good life breathing well.

[valeriejean in reply to valeriejean]

Good nutrition is very important also.....

[Lindabelle in reply to valeriejean]

I do have oxymeter and has stayed at 96 saturation for last 3 years. I do purse lip and diaphragm deep breathing but admit forgetting to engage in techniques because of my panicking. Thankfully I have a treadmill and use it but not like before my diagnosis. I'm now overweight & very fatigued so lucky if I can do 2-3 10 minute walks daily at about 2.5 -2.9 miles per hour. I used to do a 20 minute mile. Now trying to do treadmill every other day & in between , music in my ears and dancing to the 60's. I'm a very healthy eater and now trying to eliminate meat from my diet. Nutrition has always been excellent but have developed an awful sugar craving, anything sweet . Looking at supplements to dial down this craving. Human body is amazing. Thank you for the excellent info.

[valeriejean in reply to Lindabelle]

I have been watching Noah Greenspan on Ultimate Pulmonary Wellness and he advises slowing down the treadmill yet making the incline steeper. Evidently it has been found to be more beneficial. I also turn my oxygen up to 5 LPM which enables me to go for a half hour.....this is excellent as my breathing is very labored....due to this exerbation. try it....maybe it will help you. goodluck

[Lindabelle in reply to valeriejean]

Once again, thank you for the info. My treadmill only has one incline which I have always used (old treadmill).

[Hay133]

You need to push them change gp if you need to have you had oxygen gases taken

[matina336]

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