i had whooping cough for 8 mths before they dx it...it usually isnt common for adults...but it is on the rise...maybe ask doc esp since you are struggling to breathe

Hey Glider,

I really do not have any medical suggestions as I don't suffer from upper respiratory issues, but I do wish you would see a Dr sooner rather than later due to your recent hospital visit...

I breaks my heart to hear you feeling so sick...you are so active and intelligent, and you never let CVID hold you back! I admire you very much for that :)

Get the fevers and breathing checked out...I'm sending good vibes your way...I hate to think of you missing activities!

Hey, so sorry. I wasn't very specific with the breathing. I have an abnormally huge regimen to keep up with for my lungs. Because of a multitude of disorders I cannot clear my lungs effectively so culture bugs a lot more frequently. I was just on IVs for a fungal and bacterial colonization going on, but am not improving like we expected. I stay active n hopes that I can maintain my lung health, but have had to quit every workout n the last 2 weeks. The issue of it being so much worse at night is something I have attempted to address multiple times and it's been dismissed, and they think I will just feel less comfortable because my body is working harder. I think it's an excuse for them not quite knowing. I am just miserable, and think I may carry a strong demeanor at times that doesn't allow them to truly gauge how sick I am. My lung functions are awful, and at my clinic visit last week I was told that they will try to decrease my infections with the infusions but I will always cough, have sick lungs, and struggle but they will make me as comfortable as they can. I had a minor break down!! I have too much to accomplish to feel so restricted!


So I think my next question is if anybody would know how to find resources in Texas for top immunologists? I am hoping to get a travel consult set up with somebody that can address the issues in bulk, get things figured out, and facilitate a plan. I've done this once before and think amazing things can be accomplished, but due to the complexity of everything need a doctor that can tackle this issue with confidence. Know any immunology centers or docs in Texas that would be worth putting my faith in? Ya'll are all such amazing and beautiful people:)

Hey Glider,
I hope you are feeling a little better this morning. I lived in TX for 8 years, but in the Dallas are, so this recommendation is going to be a road trip for you...here are two links to UTSW-one explains the research and medical advances that UTSW is working on right now in the field of Immunology and the second is a link if you want to check out Doc and request an appointment.

http://www.utsouthwestern.edu/education/medical-school/departments/immunology/index.html

http://www.utswmedicine.org/conditions-specialties/allergy/immunology.html

If you REALLY want to travel, I can recommend some good Docs in Boston at Mass General which is currently ranked the #1 hospital in the world. I live on the east coast now and am lucky to have a great Immuno, and Rheumy there. However, East Coast folks, do not have the same bedside manner as Texas Docs, so prepare for a bit of culture shock! Let me know if you want the name of my Docs at Mass General-I will message them to you

Your other options are to set up appointments at the Mayo Clinic and John Hopkins. As far as I know they do not turn anyone away, but you may be on a waiting list for a few months. So, you could hop on a waiting list and try some other options while you are waiting.

Feel Better, LuLu

Lulu, just wanted to say THANK YOU for taking the time to recommend and post those links! I did some research, and spoke with their office which also led me to two hospitals in the Houston area, so I have hope that with a few places to choose from I can get a promising consult! You're the best!

Glider,

I so hope that you get an awesome team of doctors...I love your posts because you are young and refuse to let CVID keep you down. I admire that you continue to go to school and work, and participate in activities despite CVID.

Keep us posted on your new team of Docs, and hold on to that spirit...you are going to kick CVID in the butt!

If you get discouraged, post, you know tons of people here want you to succeed!

Best, LuLu

Hey glider

Have you contacted the immune deficiency foundation and asked for a list? If you specify that you need an immuno who treats lung complications and you are willing to travel they may be able to help. What is you lung dx? Mine is GLILD - a very rare form of interstitial lung disease caused by Cvid. I've flown to Denver and Wisconsin to see docs about mine so there are docs out there scattered around but who treat people like us :). Me personally, I don't run fevers and would be in my docs office as fever is associated to an immune response when introduced to a virus, bacteria or fungi

Kelli, I did speak with IDF. I was told the doctors they have available may not be any more experienced than any other immunos because the doctors actually add themselves to the list and there aren't any true regulations on it. So hit or miss there. As far as lungs go I have bronchiectasis, and tracheobronchomalacia that cause the majority of the complications. But, I am also pancreatic insufficient on enzyme replacement, and have a heart condition so things get messy. I just got off of IVs for a multiple resistant bacterial infection and fungal infection colonizing in my lungs, which happens often, but it isn't clearing this time and things are getting crummy! Infusions aren't going well either, and it's difficult to get those under control when I'm so sick. There are a lot of things falling through the cracks with my immune office that need to be addressed so I don't continue living in the hospital!

Glider,

When it comes to CVID, I tend to be kind of a Prepare for the Worst, Hope for the Best type of person, but for you, I expect the best freakin' outcome there is :)

Dunno, just have a good gut feeling (if that is possible over the internet) and you just have too much going for you to be defeated by stupid CVID.

It is absolutely time to get yourself a top notch team of Dr's at a well known hospital-get all your specialists if you can under one roof, at a highly accredited hospital. You deserve Docs who are ranked top in their fields.

Don't worry about insurance-Top Hospitals have tend to have generally have payment plans or co-pay waivers, but you will have to ask. You will have to ask to have your co-pay to be billed, then call the billing Dept and Ask about their Indigent Patient Program. Again, you MUST ask,no one will offer this to you. Also, most top hospitals have in-house collections, so if you have past due bills they never get reported to the Credit bureaus-very cool!

Do you know where you are going yet for your consult? Just found this article on the best ranked hospitals in Huston...there are also links for Dallas, Austin etc....

http://health.usnews.com/best-hospitals/area/houston-tx

Keep us posted on your health and treatment...also, if I can put any of my old Social Worker skills to use, let me know, happy to help

Now get some rest so you can kick CVID in the face :)

Glider - I'm sorry it sounds like you we're given bad info about the docs on Ida's list. I recently asked this question of the Vice President of education and volunteers at the idf and her response was:

Many hours have been spent creating the physician list, which is updated by the patient advocate on a regular basis. All physicians must treat PIDD, communicate with IDF and share information about their practice via email, phone

They may not have "sub specialties" though. Keep listening to your gut and pressing for answers. We are here for you

Thanks kelli, your previous response is more of what I was expecting, and would have given me a confidence boost if that's the information I had received. I really appreciate all the positive thoughts and resources you guys have given me. @Lulu, I am fight for the best kind of person. I like to separate out my strengths and how they allow me to push through this madness. It's been difficult, and I may be looking at another hospital stay this week which really needs to not happen. I just got out, and have too many commitments that I can't abandon. But, super sick so Ill take it as it comes! You guys are so amazing. Thanks always for your help!

I know you don't want to hear this but you may need to slow down for a while. I had to take a medical drop one semester to let my body regain strength. It does not mean you won't finish but you need to slow down sometimes and heal completely. I was working 40 hrs a week and going to school full time even through the summer. I got to the point that I could not function effectively and I needed a break. I had to pay for college myself with the help loans so I know it is not easy to hear it could take longer and cost more. I just had to remind myself that in the long run it is better for me to take care of myself when needed and it is OK to let some commitments go. Classes can wait a semester, your health may not be able to recover if you wait a semester. Some damage can not be undone.

Glider, where in Texas are you? I live in Austin but am seeking a new dr. as well. I am going to see a Dr. Julie Patel in Houston this week. She is an Immunologist and a Rheumatologist. I am hoping she can see things from a new perspective. Anyway, I don't know if that is helpful to you at all but if it goes well, I will certainly report back to you.
I also want to second Marilyn... take a rest! I taught college for many years and learned the hard way and through my student's examples. When we push too hard and lose what health we have, sometimes there is no getting it back. Take care of what you have and be gentle with yourself. The University and the courses will be there when you feel a bit better and they will give you a medical leave. I hope you start feeling better soon. If you wish, feel free to let me know if I can be of any help locally. Katie

I am going to school in San Antonio, but Austin is my hometown so I am up there on a regular basis. I would love to talk further with you!! I am really excited to see there is someone else so close. When I had made efforts to be in touch with other PIDD patients, the closest person I was given lives in Pennsylvania! Anyways, definitely let me know how that appointment goes! I am looking into going to the Texas Children's Hospital Immunology Center in Houston, and can hopefully find out this week if that goes through.

Currently I am in India but my house is in Austin. I will be back for a visit in July. I know there is at least one other person here in Austin. I will post to see if people can get together.