Daughter here trying not to drop her basket

[LindseyRN]

Just a quick update. My Dad's PET scan is scheduled for Tuesday morning 2/18 and then he will follow up with his pulmonologist on Monday 2/24 for the results.


He is still feeling pretty good he says. I can hear him sniffling when I talk to him on the phone though and he admits his sinuses are continuing to drain. He says his sinuses symptoms are worse if he goes outside into the cold air. Is this true for anyone else? I'm curious about it.


He is hardly coughing anymore. We had a 30-minute phone conversation the other day and I made it a point to listen for a cough the entire length of the call. He did not cough one time. I am really glad about that. He also says his headaches are getting fewer and far between.


My Dad's next appointment with his rheumatologist is Friday 2/21. I'm sure at this appointment she will be increasing his prednisone from the 20mg/day dose he is taking now and start him on Rituximab. I am still working on getting him up to Cleveland Clinic, but he is insistent that we wait and see what the pulmonologist says about his lung nodule first. I'm hoping that since he is no longer with a cough, maybe his lung issue is beginning to clear up. I am hoping and praying for this so much.


I hope you all are feeling well and staying warm and dry today. We are getting a lot of winter weather here in the Southeast...at least a lot for us! I can't wait for warm weather to get here, but for right now, yay for the snow day!

[Dirty Don]

Don't know what a 'snow day' is anymore...BUT, your dad seems to be on the right track. I'm hoping the nodule is a leftover from WG damage and not what you think. I have a couple small ones left from the first onslaught of WG...may be just that. Glad for your dad...keep it up!

[windchime]

Glad to hear that he has things scheduled and they seem to moving right along. Good luck with the PET scan. I found and old CT Scan of mine that also showed spiculated borders. It turned out to be WG's. I too had a PET scan after that. All was well it was only WG's. Keep us posted please and enjoy your snow day.

[MikeG-2012]

He is still feeling pretty good he says. I can hear him sniffling when I talk to him on the phone though and he admits his sinuses are continuing to drain. He says his sinuses symptoms are worse if he goes outside into the cold air. Is this true for anyone else? I'm curious about it.

I've come in from the cold and blew out an obscene amount of crud, so I guess my answer is yes, the cold does have an effect. Seem plausible that the cold does reduce inflammation, and that cold air would make sinuses feel different after being out in the cold for a while.

If he hasn't already, you should get him on a frequent nasal flushing routine. Go with the squeeze bottle type of rinsing devices, as they work 1000 times better than the trickling through netti-pots. Go to your local pharmacy and look for NeilMed product--that is the most common brand out there. Without my nasal rinsing regimen, I would be in serious trouble with the damage the disease has done to my sinuses. Was just at the ENT today, and he said the lining is continuing to improve at each visit, so I am to keep up my same rinsing activities.

[MEustace]

Hi Lindsey -
I just joined this site a few weeks ago almost for the same reasons for my mother. The only difference is that she's having a "flare" as she was diagnosed 20+ years ago with this.
Keep yourself armed with the knowledge of what you learn from this site and other places of information.
My mother is currently in the hospital and the plan is to start the Ritux soon after they make sure there is no other infection.
Have your dad keep a notebook himself so he can take hold of his symptoms and medications and always have handy.
Good luck! I'm with you in spirit!

[LindseyRN]

Hello everyone. I hope you all are doing well. We had snow and an ice storm here last week that kept most of the state homebound for three days and today the high temperature was 76°! Tomorrow it's supposed to reach 82. Weather in the South is nuts, y'all!


I've been kinda MIA for a week with nothing much to report. I wish I had good news to share, but all that has happened is my Dad went for his PET scan yesterday. I called him from work after and he was so emotional. My strong, robust Dad was so frightened and kept choking up while telling me about it. I wish I could take all this away from him and put it in me. My family is really struggling with the what-ifs. I'm sure the prednisone Dad has been taking isn't helping his emotional state either. My heart really aches seeing him this way.


Physically, he says he feels good. His only complaint has been his sinus issues and that had gotten better until it turned warm this week. I've noticed weather changes really affect his sinusitis. I mean, why would it not? Change in weather has always affected my sinuses. He hasn't had much of a cough at all in 10-12 days and his headaches are fewer and far between.


I'm going to my Dad's rheumatologist appointment with him on Friday and I am going armed with a list of questions for her. One of the things I would really like us to discuss besides his treatment plan is if it would be beneficial for my Dad to start taking something that would help his labile moods while on prednisone. Also, maybe something that he could take occasionally to help him sleep. (I have already discussed this with him by the way.) My Dad is not due to go back to his PCP until mid-May and says with all his recent specialists visits, he refuses to move his PCP appointment to any sooner. Do you think these questions are appropriate for his rheumatologist?


Thank you so very much for being educators and a "sounding board" for me. ((( great big hugs )))

[MEustace]

I would say that ANY questions are better than none at all. Perhaps an exercise regimen would assist with alleviating a stressful situation plus probably stressful thoughts on all of this. If your Dad can talk with someone that would also be helpful too - I think it's better for the person going thru this stuff to be able to associate with others going through the same events/symptoms.
All the best - keep your strength about you -

[Dirty Don]

A good comfortable workout/physical regimen has helped me a lot...also helped keep me from falling into the WG abyss many times. Also, I use Lexapro regularly (serotonin loss) and keep Xanax at my hip...helps with both worrying and sleep and no side effects. Best to you & your dad...his reactions at this time are very understood...at our ages, mortality is also an issue at times and it needs balancing...sighs...

[Lilly]

Gosh, it sounds like things are moving along rather well....He has come a long way! And you are doing a fantastic job of taking care of his appointments and other issues he needs help with. It is so difficult to see someone you love being afraid, and especially your normally strong robust Dad, breaking down a little while talking with you. My Mom says the same thing about me that you said about him. She wishes she could take it from me, she would take it on herself. That breaks my heart, but its Love, and I am fortunate to have a Mother and family I do. Your Dad is so lucky to have you and your family. Going into the Dr. office with Notes is the BEST thing you can do! Also write down the answers he gives you (like you were not planning on doing that!!!) I think it is TOTALLY appropriate questions to ask regarding the medication to help him. I know it may be difficult to your Dad to have to take more medication, but if it is for the best for him, he really needs to if the Dr. agrees......Getting enough sleep is so important, and that darn prednisone will keep your eyes propped open ALL NIGHT!! So just a little something to help him sleep, and something to keep him from being down and depressed are 2 things that I think are good for his health as he is fighting this disease! I wish you and your Dad all the best, and cant wait to see what the Rheumatologist says. I think you are doing SUCH a GREAT job with your Dad! That is something else that is healing,......your Love and Caring. Keep on letting us be a "sounding board" for you! YOU need support too, and thats what we are here for! ((HUGS))

[Lilly]

Hi Mike, I use the NeilMed bottle too, have for years, but I was wondering how much damage your sinuses have? Like, do you still have a septum? Do u have lots of crusting and have to really clean your nose a lot? You may have posted this info before, but I havent seen it, and was wondering. My sinuses are the main target of this dz.