Ben Robinson

I mentioned I was rejected for lung transplant because I offended a jerk doctor then realized he did me a favor. He said I was frail and I said I could kick his arse. I curl 45 what do you do wimp. Pulmonologist = Lung Transplant Salesman. Outcome Percentages are poor.  I stand proud and tall of my self advocacy aka big mouth.  So I looked h…[Read more]

I too appreciate this information and those taking the time to convey it.  I was recently declined for a lung transplant probably because of my outspoken mouth calling the doctors antics and contradictions as i see them.  After all of that testing trials and tribulations.  I left feeling like they had done me a favor when hearing all that you go…[Read more]

At 30,000 feet on a plane, my interstitial disease lungs go bonkers and the saturation levels drop like a rock. Be sure to take plenty of oxygen on the plane.

I have the enlarged prostate and difficulty with urination for which i was prescribed Flomax.  After two months it is working well.  Not a good issue to have when you are on Lasix for fluid also.  All i do is pee.  I have also Lost weight and have gone from my former body builder mass to skeletor the bag of skinny bones. The fluid also acc…[Read more]

Prednisone has been my most effective medicine. 40 mg bursts for five days every three weeks have worked best and minimized the side effects. The doctors also have me on 7.5 mg per day in between but I am not sure what that does.  Every three week burst peels down another layer of inflammation. My lungs are now significantly healed from that…[Read more]

Keep fighting til the end is my motto on this. Go down swinging and take some doctors with you. LoL  Cheers!  Difficult days coming for me a test, a doctor, a drivers license renewal and a vaca with the grand kids   All a struggle and an imposition on others with my condition at hand and oxygen in tow.   Battle Speed!  Raaah

I think I am seeing benefit from it. Just a lot of pills to take every day. I think it is helping along with my other meds.

I dropped down to 100 mg OFEV and have zero side effects now after a three month pause between the 150 and 100 then started the 100 a while back.

Yes I am taking both. I have PH and PF.

Lnour

Dr Lobo is a nationally reknowned doctor whom I had appointments and discussions with regarding stem cell therapy and is the credible source of my information.  He was brought up by another participant in this forum to which I responded   It seemed quite pertinent to the subject

The lung institute at least used to do stem cell therapy f…[Read more]

I am not sure but it might be helping me. I improved but I am not sure if it is the prednisone bursts, the Wei, the disease cycle, the oxygen adjustments, the Tyvaso or the Ofev.  I am not going to chance stopping the Wei in case that is a contributor to the upturn.  I was breaking the capsules because I didn’t want to ingest all of that pla…[Read more]

The Place is called the Lung Health Institute on line and are probably the oldest private cellular treatment around that Hopkins doctor told me they were after them.  Dr. Lobo really did impart the dangers to me as I described.  I wish you all the best of luck and hope that you do find something somewhere with the stem cells, but I do think L…[Read more]

I had to take medical classes on line to be a doctor to manage my doctors and my disease. I agree that second opinions from such high level places are a smart thing to do. But I have found that they all lack knowledge of interstitial lung diseases. There are 200 types. Did they tell you that? I found mine on NORD for rare diseases. One major…[Read more]

Dr Lobo is my Doctor and I went to see him for that reason. He has had to abandon that program due to bonding amd money. He also made it clear that his systemic stem cell injection is not for everyone and has dangers as I described to some level above   He is however a very good pulmonologist but it was a four hour drive and my PH didn’t like th…[Read more]

Yes I have PH lungs which is a complication and it is the most debilitating aspect of my disease. My lung PFT scores hardly decline but then there is this pulmonary hypertension from the narrowed hardened lung blood vessels and all which is worse.

Sounds like Pulmonary Hypertension to me   Classic symptoms that I have experienced. Most Pulmonologists miss it too.  Unfortunately a right heart Cath is needed to precisely diagnose. This is often caused be lungs also or calcified arteries and veins or both.

These posts were very helpful as I am taking the Transplant plunge this fall.  Thank you very much.

Not approved by FDA and only available at private companies of suspect success rate lets say.  There is also some danger involved in the treatments injected.  China has a good trial going where they inserted by bronchoscopy instead of systemic injection.  But I would stay out of Wuhan, LoL.  It all sounded good to me too and I looked deeply int…[Read more]

I take Gabapentin.  It works quite well.  Two tablets will give you a good sleep, one will be mild sleep and not effect your wake time.

I have had the most success with Prednisone than any other drug.  It is just that the dosage was critical for me to get dialed in.  There was significant concern about Side Effects enough that my initial Pulmonologist would not prescribe it, allowing PF to chew up my right lung for 4 years.  After changing Pulmonologists, we dialed in at 7.5 mg pe…[Read more]