So we got great news...

[LindseyRN]

Not. Cancer.

Praise God!

***BIG EXHALE***

Dad's pulmonologist said at his appointment yesterday that he had never assumed a malignancy incorrectly until my Dad became his patient. He also said how happy he is to have been wrong! He made us a copy of the report of the CT that was done prior to my Dad's cancelled biopsy. It basically said the nodule had shrunk by half its original size and the "extreme disease" in Dad's left apical lung that was seen on his initial chest CT has improved indicating that it was an inflammatory process all along. His pulmonologist will be monitoring his lungs closely with follow-up CTs and, hopefully, the inflammation that is there will completely resolve.

Of course, my family is relieved, but we are not resting on our laurels. My mission at present is getting Dad a better ENT. The one he has seen four times now is horrible, no other way to say it. He not once looked at my Dad's CT of his sinuses even though Dad took him a copy. He was dismissive when my Dad tried to talk to him about his chronic sinusitis due to WG. He also basically told Dad without doing an exam at his last appointment that since he has WG, Dad's rheumatologist should and would take care of everything.

I called and left a voicemail with his rheumatologist's nurse today that we would like the doctor to recommend an ENT with whom she has a working relationship and who also has experience treating WG patients. Hopefully, she can direct us to a great one.

So my Dad's only complaint right now is the continued upper respiratory symptoms, specifically sinusitis and nosebleeds that have been occurring every 1-2 days. He has only had one that was "red" and not "pink," but it makes him hesitant to blow his nose, which of course he feels the need to do often. He is also has a little anxiety about going anywhere and possibly having a nosebleed. Ugh, I really wish he didn't have to deal with this.

Can anyone give us any tips for controlling his nosebleeds? He already does sinus rinses and nose spray.

[Debbie C]

Lindsey..so glad u got good news on your dad. Sorry I don't have any advive about the nosebleeds.Just wanted you to know I am happy for you and your family. Hopefully the nosebleeds will stop on there own also.

[windchime]

Happy to hear the good news. Keep working on getting a good ENT.

[drz]

I found the steroid nasal sprays like fluticasone propionate helped heal my nasal areas and reduce bleeding. I use it PRN whenever I get blood in my nasal rinses and it seems to help me. Also increasing the number of nasal rinses with extra strong solution of soda and salt is recommended by my ENT as he said one cannot over do the rinses. I also usually use double or triple strength rinses compared to what comes using just one of the commercial packets in the rinse bottle. I mix my own salt and soda mixture for the rinses which makes it much cheaper to do.

Adding Alkalol to the rinses might help things feel better but don't know if helps heal the nasal passages. I think the NeilMed NasoGel is best way to keep nasal passages moist between the salt and soda rinses as keeping the passages moist helps with healing and reduces nose bleeds. Getting the passages healed up is a challenge but the best and maybe only way to reduce nosebleeds.

Another thing may to get a good ENT to check for sinus infections which can make things worse and also creates other problems.

[LindseyRN]

I found the steroid nasal sprays like fluticasone propionate helped heal the nasal areas and reduce bleeding. I use it PRN whenever I get blood in my nasal rinses and it seems to help me. Also increasing the number of nasal rinses with extra strong solution of soda and salt is recommended by my ENT as he said one cannot over do the rinses. I usually use double or triple strength rinses compared to what comes using just one of the commercial packets in the rinse bottle.

I'll work on getting him some Flonase, thanks. Is it safe to put 2-3 packets in the bottle he uses to rinse?

[drz]

I'll work on getting him some Flonase, thanks. Is it safe to put 2-3 packets in the bottle he uses to rinse?

Yes, or buy the extra strength rinse packets but making your own is real easy and cheaper and just as effective. Get salt without iodine like sea salt or canning salt and mix it three to one with regular baking soda and store in glass jar.

[BrianR]

Not. Cancer.

Praise God!

***BIG EXHALE***

Dad's pulmonologist said at his appointment yesterday that he had never assumed a malignancy incorrectly until my Dad became his patient. He also said how happy he is to have been wrong! He made us a copy of the report of the CT that was done prior to my Dad's cancelled biopsy. It basically said the nodule had shrunk by half its original size and the "extreme disease" in Dad's left apical lung that was seen on his initial chest CT has improved indicating that it was an inflammatory process all along. His pulmonologist will be monitoring his lungs closely with follow-up CTs and, hopefully, the inflammation that is there will completely resolve.

Of course, my family is relieved, but we are not resting on our laurels. My mission at present is getting Dad a better ENT. The one he has seen four times now is horrible, no other way to say it. He not once looked at my Dad's CT of his sinuses even though Dad took him a copy. He was dismissive when my Dad tried to talk to him about his chronic sinusitis due to WG. He also basically told Dad without doing an exam at his last appointment that since he has WG, Dad's rheumatologist should and would take care of everything.

I called and left a voicemail with his rheumatologist's nurse today that we would like the doctor to recommend an ENT with whom she has a working relationship and who also has experience treating WG patients. Hopefully, she can direct us to a great one.

So my Dad's only complaint right now is the continued upper respiratory symptoms, specifically sinusitis and nosebleeds that have been occurring every 1-2 days. He has only had one that was "red" and not "pink," but it makes him hesitant to blow his nose, which of course he feels the need to do often. He is also has a little anxiety about going anywhere and possibly having a nosebleed. Ugh, I really wish he didn't have to deal with this.

Can anyone give us any tips for controlling his nosebleeds? He already does sinus rinses and nose spray.

Like everyone else, I have been waiting to hear this news. I am so happy it finally came! It will be tough for a while but will for sure get a lot better. I had to live with a terminal cancer diagnosis for my wife for 36 hours (we had a 3year old at the time) and I had pretty much lost it. Waiting as long as you did for the good news (and it is!) must have been hell. Be vigilant, get good docs and prepare for re-entry...your coming back to earth soon!

[mishb]

That's excellent news Lindsey. I'm so happy for your dad.

I think in the beginning most of us would have received a cancer diagnosis of some sort - it's the easiest option for the doctors I think

For the blood noses, I also found that the Flonase made it worse.
I have used two different types of creams of the years........Bactroban and also Kenacomb Otic.
Kenacomb worked better and is used after sinus or ear sores or operations

[windchime]

Lindsey, I've had good luck with Dymista nasal spray. It's a combo of Flonase and Azelastine hydrochloride which is an antihistamine. I find it works well for me for the rhinitis. I don't have sinus wegs issues though.

[Dirty Don]

Lindsey, I've started using Alkalol recently. Have been using Neil Med rinse infrequently, and Ocean saline daily. The Alkalol is variable by strength, pretty mild and clears out sinuses well. It is at drugstores, cheaper, and, for my situation (WG lite w/ damaged sinuses that bleed once in a while) seems to be an easier application and just as efficient. Best to you & your dad (I told you it wasn't cancer!! LOL!).