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. :predrage:

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. :sad:

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.

[LindseyRN]

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.

Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?

[pberggren1]

Be careful the Flonase. It can have a rebound effect and make symptoms worse. Try just using in for a few days first.

[drz]

Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?

Take a small spoon and and open one packet and put on it to see what two or three times that amount looks like. I use as much as I generally can get on the back of a handle of a cheap plastic spoon i got from McDonalds as this makes it easy to put salt-soda mixture into the squeeze bottle with spilling any of it. There are little grooves on back of the handle to hold the salt-soda mixture while I slide it into the bottle and then add the warm water and shake it up to mix it.

[MikeG-2012]

Thank you! He uses the squeeze bottle kit from the drugstore. How much mixture should he use per bottle?

The formula from my ENT is 1 teaspoon pickling salt and 1/2 teaspoon baking soda per 1 liter of water. I mix mine in one of the large pampered chef pitchers with the mixing plunger built in. I've been running 3 liters 2 times a day for the past year now to keep my sinuses open. I use those seemingly useless little Rubbermaid containers you get in the multi packs to pre-measure out the amount of baking soda and salt for the amount of water container used. This may sound like a lot of rinsing, and it is, but the results paid off!

If he feels like he has to blow his nose, have him rinse out the crud instead. Moisture is what he needs in there to keep the bleeding down and the crusts from building up too heavy. My sinuses used to look "like a child's skinned knee after he fell off his bike", but with extreme persistence, my sinuses have started to recover and show some signs of normalcy in the linings, albeit 6 months later. Mine were so bad I was on three different narcotic pain relievers for the associated migraine headaches from the destroyed sinus linings.

It takes a fight to get sinuses back under control. Part of the fight is finding a good ENT that will do an endoscopic cleaning periodically to dislodge the hard to remove crusting. Since my flare up in September/October, I've been to the ENT's office every 2-3 weeks for this type of procedure. I will say that I have a tremendously good insurance policy, and have never had to fight for these cleanings, nor pay out of my pocket for them. So for me, the periodic cleanings have truly been a Godsend!!

Tell dad he just has to be more stubborn than this stupid disease, and he can certainly get ahead of it! I'm proof of that!

[annekat]

Lindsey, what a relief to hear that the mass in your dad's lung was definitely not cancer! I'm so happy for you both. It's also great that the treatments for WG have worked so well to shrink it. Good luck finding the right ENT! The old one was obviously not it.

[LindseyRN]

The formula from my ENT is 1 teaspoon pickling salt and 1/2 teaspoon baking soda per 1 liter of water. I mix mine in one of the large pampered chef pitchers with the mixing plunger built in. I've been running 3 liters 2 times a day for the past year now to keep my sinuses open. I use those seemingly useless little Rubbermaid containers you get in the multi packs to pre-measure out the amount of baking soda and salt for the amount of water container used. This may sound like a lot of rinsing, and it is, but the results paid off!

If he feels like he has to blow his nose, have him rinse out the crud instead. Moisture is what he needs in there to keep the bleeding down and the crusts from building up too heavy. My sinuses used to look "like a child's skinned knee after he fell off his bike", but with extreme persistence, my sinuses have started to recover and show some signs of normalcy in the linings, albeit 6 months later. Mine were so bad I was on three different narcotic pain relievers for the associated migraine headaches from the destroyed sinus linings.

It takes a fight to get sinuses back under control. Part of the fight is finding a good ENT that will do an endoscopic cleaning periodically to dislodge the hard to remove crusting. Since my flare up in September/October, I've been to the ENT's office every 2-3 weeks for this type of procedure. I will say that I have a tremendously good insurance policy, and have never had to fight for these cleanings, nor pay out of my pocket for them. So for me, the periodic cleanings have truly been a Godsend!!

Tell dad he just has to be more stubborn than this stupid disease, and he can certainly get ahead of it! I'm proof of that!


Mike,

This information, along with the info from your thread, has already been passed along to my Dad. He is eager to take all your advice and we are all so thankful for your help! We will tame this thing.

My Dad's rheumatologist tried calling him tonight in order to talk to him about a new ENT recommendation, but he and my Mom were out. She then called me around 8:15 pm and said she got the voicemail message I left today for her nurse and agrees he needs a new ENT, one who has more knowledge and experience with WG. She said she would call the ENT tomorrow and get Dad in to see him ASAP. I could tell she was taking down everything I was telling her so she could relay his symptoms verbatim to the new ENT. She is definitely not Miss Personality, but I am impressed by her and Dad trusts her. I am so happy your sinuses have improved so much!! You've given us hope that Dad WILL get better! I will keep you and everyone else updated on his progress.

[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. :predrage:

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. :sad:

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 :sad:

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!).

[Alysia]

Hi Lindsey,
I am so glad that your dad doesnt have cancer and that he is getting better. I believe that he will be better more and more as the treatment will proceed.
as for nasal rinses: after some trials with couple of them, and with some ointements, I stopped them all, because the fluids were coming to my ears, filling them more, and making ears infections. it was painful and also hurt my hearing at those times.
I don't know why it was like that in my case, while others are doing daily rinses.
The only thing I do is to blow in a warm shower. sometimes I waited couple of days for big chunk to get out, meantime hardly breathing.
since the rtx, my nose becoming more and more free from "productions".

[drz]

Hi Lindsey,
I am so glad that your dad doesnt have cancer and that he is getting better. I believe that he will be better more and more as the treatment will proceed.
as for nasal rinses: after some trials with couple of them, and with some ointements, I stopped them all, because the fluids were coming to my ears, filling them more, and making ears infections. it was painful and also hurt my hearing at those times.
I don't know why it was like that in my case, while others are doing daily rinses.
The only thing I do is to blow in a warm shower. sometimes I waited couple of days for big chunk to get out, meantime hardly breathing.
since the rtx, my nose becoming more and more free from "productions".

To avoid getting water into the Eustachian tubes they recommend not rinsing if nasal passages are blocked. Also using a less forceful rinsing procedure like a NetiPot or very gentle squeezes on a squeeze bottle helps avoid getting water into Eustachian tubes and risk of infection from doing so.

[annekat]

Hi Lindsey,
I am so glad that your dad doesnt have cancer and that he is getting better. I believe that he will be better more and more as the treatment will proceed.
as for nasal rinses: after some trials with couple of them, and with some ointements, I stopped them all, because the fluids were coming to my ears, filling them more, and making ears infections. it was painful and also hurt my hearing at those times.
I don't know why it was like that in my case, while others are doing daily rinses.
The only thing I do is to blow in a warm shower. sometimes I waited couple of days for big chunk to get out, meantime hardly breathing.
since the rtx, my nose becoming more and more free from "productions". Alysia, I wonder if your eustachian tubes are somewhat chronically open like Don's, which might create more of a problem with water getting in the ears? But then, Don says he does nasal rinses, so maybe he can comment on this. Somehow, it sounds like there is too much pressure when you do the nasal rinse, which forces the fluid into to the e-tubes. Maybe if you screw the cap on a little looser? Or maybe using a Water Pik the pressure can be controlled better? I know you have given up on this but would like to know as much as you would what the problem is.

Oh, I see that drz has posted an insight into this.

[Alysia]

To avoid getting water into the Eustachian tubes they recommend not rinsing if nasal passages are blocked. Also using a less forceful rinsing procedure like a NetiPot or very gentle squeezes on a squeeze bottle helps avoid getting water into Eustachian tubes and risk of infection from doing so.
I did my rinses very gently. maybe the nasal passages ARE blocked. I remember the ENT said that I have "adhesions" inside, that can be removed only by surgery. thanks drz and Anne.

[Deborah T]

Greetings fellow RN - I am a Weggie and a practicing RN. It's hard to know so much and so little about a disease at the same time. Praise God that your dad does NOT have a malignancy. WG is easier to treat than lung cancer.

It is hard to find good ENTs that know about this dz. I went to ENT referred by my Rheum d/t perforated nasal septum. He poked at it with a q-tip and announced that the q-tip wouldn't go through so he was not worried. He was
rather cauvalair about it, I told him to use a smaller instrument, but apparently he decides whether a perforation is a perforation by poking a full-sized q-tip clear through. What an ass. Anyways, I am currently looking for a local ENT
that can make recommendations. I also use the sprays, but it does not cut down on the runny noses or bloody noses. I understand there are good ointments that can be used, but I need to get the name and see if script or over
the counter.

One thing I tell my patients after nasal surgery is to not "blow" the nose. That seems less disruptive to inflamed or healing sinuses or nasal septal tissue. If he does blow his nose, do so with mouth open to decrease the pressure.
High blood pressure and putting head in downward position can also exacerbate nasal drainage. Keeping that blood pressure low is important for us. Does he check daily?

Good luck with your dad. Prayers your way -
Deborah T.

[Dirty Don]

Alysia, if it's the surgery you might be worried about...my experience was that my ENT did a wonderful job for what she could do. She did the deviated septum, which I didn't think I needed, but she was right...I could breathe so much better afterwards. But, my point is that the actual surgeries ENTs do are pretty safe and less complicated than when they went in with tools that left one's sinus area pretty torn up and bleeding. My septum was done bleeding by that night and I had no packing. Just saying ENT toys are pretty good and they don't cause the 'nose' pain they used to cause. Best to you and your nose!!! LOL!

[Alysia]

Alysia, if it's the surgery you might be worried about...my experience was that my ENT did a wonderful job for what she could do.
thanks Don :thumbup: you are blessed with good ENT, which is not so common.... I am not going to do surgery soon, since it seems that I can breath :wink1:

[annekat]

Well, Deborah, I'm not totally thrilled with my ENT, because he is not a great communicator, for one thing, but he's a darn sight better than the one you got, Dr.Q-tip! Mine said I had a small perforation in the bony part of the septum and was able to get a good enough biopsy sample to confirm my Wegs dx. Of course, my recently discovered saddle nose made it sort of a foregone conclusion.

The one over the counter nasal ointment I know of is Ayr, which my ENT recommended and I think someone on here mentioned recently. There may be better prescription ones, I don't know, but I think the Ayr is largely Aloe Vera and works pretty well. Its been wehilke since I used it.

[debhaz22]

YAY Lindsey!!!!!!!!!!
GREAT news!:thumbsup: