Re: Diagnosis

Ainhisg · ‎03-09-2010

@grandme I posted earlier about my mother living until the age of 93 after having part of a lung removed because of pulmonary fibrosis. I was back on the boards reading this morning and wanted to add that she was 75 when she was diagnosed with it and had the operation. Don't give up! If possible, get a second opinion, and please come back and post about how you're doing. You can tell that we all empathize with you and care.

And I'm with the others. Bedside manner is SO important. Maybe not as important as knowledge, but it is right up there. I remember leaving my last PCP for a new one, and when I was telling her about an ailment about which the other doctor wasn't too sympathetic, she said, "You've suffered long enough." Just those few words almost brought me to tears, because I felt heard and felt like she cared. I was so glad I kicked the other doctor to the curb!

sligo · ‎10-20-2010

@grandme, PLEASE get a second op!! Many blessings, Sligo

sligo · ‎10-20-2010

@grandme, PLEASE CALL your PCP Get a second op!! Sligo

PamfromCT · ‎05-22-2014

@grandme, I am so sorry for the way this doctor treated you.

I hope you move on and find a compassionate doctor who explains your situation with respect to you and your family.

Do you happen to live anywhere there is a large and well-known medical center? Trust this doc was not at one. Did not act that way, from what I have seen.

I know of two people personally who were given very discouraging news. Both people contacted a well-known hospital and arranged to see a specialist they needed.

Both are doing remarkedly well some years later. I don't know if that is possible, but maybe worth considering such a visit. You can call a large medical center, explain your problem, and they will assign you with the appropriate specialist.

There are always new treatments and medications. Some doctors are reluctant to refer patients to places where options are available. don't know why? Ego comes to mind. Neither of the two people I mentioned were referred to a larger medical center. They did it on their own. I am praying to the Great Healer for you. All my best.

qualitygal · ‎10-04-2010

For your own well-being, you need a doctor that's more caring. No matter what. You have enough on your plate. Do it for you. Compassion is needed. Wishing you the best in your trying time.

granddi · ‎03-16-2010

@grandme wrote:
My doctor sent me to a pulmonoary doctor because my ct scan still not clear from pneumonia from March. He coldly said I have lung fibrosis and 3-5 provided I haven't had for years. Quite a shock. Anyone familiar with this. No cure. Thanks for listening

Please do not accept this.

Please seek out other medical options such as Mayo--ASAP

They are working on a drug combo called D+Q which has some real promise for pulmonary fibrosis( and other)

D= dasatinib(a cancer drug) Q= quercetin

This is a treatment called senolytics

Interesting that this D+Q therapy has shown a 16% increase in bone density. Also appears to increase cognitive ability.

For others interested just search senolytics, its facinating.

Jersey Born · ‎03-10-2010

@grandme - I am so sorry you had such a negative experience with such an unkind doctor. Doctors don't know everything, and they don't have a way to determine your exact remaining life expectancy. Every person is different.

That said, please look up "holistic remedies for pulmonary fibrosis", being careful, of course, to speak with a caring medical professional, or a kind holistic doctor, who is given a full list of your prescription medications, to find out if anything holistic that you might want to try, could have unwanted interractions on any prescription medications you are taking. While there may not be any current cure for what you have, there might be some healthy, anti-inflammatory remedies to slow down the progression of your illness, and/or perhaps even make you feel less symptomatic and more comfortable and relaxed.

Wishing you the very best, medically and emotionally, and also wishing you many, many more good years-- many more than that unkind doctor stated.

Alsace Gal · ‎11-25-2014

@grandme wrote:
My doctor sent me to a pulmonoary doctor because my ct scan still not clear from pneumonia from March. He coldly said I have lung fibrosis and 3-5 provided I haven't had for years. Quite a shock. Anyone familiar with this. No cure. Thanks for listening

@grandme

I'm so very sorry for your diagnosis and the way you were treated.

I agree with other members, please seek out another opinion, please.

Whatever the outcome, whether it's 5, 7 or ten years, you deserve to live a comfortable and joyful life, especially with your family.

I'm praying for you.

xxx

chrystaltree · ‎05-10-2010

Wow. What a monster. I know some specialists lack any type of bedside manner. But this was beyond that. I know that while there's no cure there are medications that slow the progression of the disease and make breathing easier. Did he prescribe anything for relief of your symptoms? Maybe go back to your PCP and relax what happened and how awfully you were treated. With the diagnosis your PCP might be able to address your symptoms and explain the disease and it's progression.