Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I just received the results of my lung CT scan, and I have bronchiectastis as as results of CVID. From what I have read, this is a known complication and also incurable.
My immunologist who ordered the CT scan just sent me the results Friday by email without comment. I had to beg for the results because I was about to go to my PCP to tell them that the Advair and Flonase were doing nothing for my constant productive cough and postnasal drip. (The immunologist is 1.5 hours away, so I can't easily get an appointment with him.) The PCP added Spiriva to my regimen and gave me a list of pulmonologists to get an appointment. I now have to wait until March 21 to see one.
I am very upset and scared. Doctors are not supposed to just send you bad news by way of a radiologist's notes. I can't ask him any questions, like how serious it is and what can be done. I guess the pulmonologist can take a look at the scan and provide a better answer than the immunologist.
I've also taken a ton of Diflucan, and it's done nothing for my yeast infection. The immunologist says he has lately been seeing strains of candida that are resistant to Diflucan. He says I should go to the OB-GYN and do a fungal stain , culture, and test of antibiotic sensitivity, whatever all that means.
Anyway, I keep getting different diagnoses, and treatments that don't work. The Immunologist previously diagnosed me with "cough variant asthma," but he didn't have the CT scan results at that time. I don't even know if I have asthma; as far as I can tell, the bronchiectastis accounts for all the upper respiratory symptoms.
I had been so happy that I was going to get relief -- Advair to get rid of the alleged asthma, lots of Diflucan to finally cure the yeast infection, and Flonase for the postnasal drip. Instead, none of it works and I am in limbo with this scary new diagnosis.
Also, the PCP either failed to notice or ignored on Friday that the CT scan results said I also have an infection in the lungs. Maybe he was just looking at the clinical picture vs. the CT scan with regard to infection. The scan was also from Feb. 17 because the immunologist wouldn't give me my results (too busy I guess!!). So, I will have to call the PCP to see if I should be on an antibiotic.
Does anyone else have bronchiectasis? If so, what treatments have you used? Did these work for you?
With the CVID and bronchiectasis diagnoses, I now have this vision of myself getting more and more disabled and dying early due to lymphoma and/or heart failure. Previously, my family members died of heart attacks (different from heart failure) or stroke. The people in my family have been living longer and longer, and I had looked forward to a relatively healthy, relatively long, life. Now I am out here alone with my fears.
Valerie
My immunologist who ordered the CT scan just sent me the results Friday by email without comment. I had to beg for the results because I was about to go to my PCP to tell them that the Advair and Flonase were doing nothing for my constant productive cough and postnasal drip. (The immunologist is 1.5 hours away, so I can't easily get an appointment with him.) The PCP added Spiriva to my regimen and gave me a list of pulmonologists to get an appointment. I now have to wait until March 21 to see one.
I am very upset and scared. Doctors are not supposed to just send you bad news by way of a radiologist's notes. I can't ask him any questions, like how serious it is and what can be done. I guess the pulmonologist can take a look at the scan and provide a better answer than the immunologist.
I've also taken a ton of Diflucan, and it's done nothing for my yeast infection. The immunologist says he has lately been seeing strains of candida that are resistant to Diflucan. He says I should go to the OB-GYN and do a fungal stain , culture, and test of antibiotic sensitivity, whatever all that means.
Anyway, I keep getting different diagnoses, and treatments that don't work. The Immunologist previously diagnosed me with "cough variant asthma," but he didn't have the CT scan results at that time. I don't even know if I have asthma; as far as I can tell, the bronchiectastis accounts for all the upper respiratory symptoms.
I had been so happy that I was going to get relief -- Advair to get rid of the alleged asthma, lots of Diflucan to finally cure the yeast infection, and Flonase for the postnasal drip. Instead, none of it works and I am in limbo with this scary new diagnosis.
Also, the PCP either failed to notice or ignored on Friday that the CT scan results said I also have an infection in the lungs. Maybe he was just looking at the clinical picture vs. the CT scan with regard to infection. The scan was also from Feb. 17 because the immunologist wouldn't give me my results (too busy I guess!!). So, I will have to call the PCP to see if I should be on an antibiotic.
Does anyone else have bronchiectasis? If so, what treatments have you used? Did these work for you?
With the CVID and bronchiectasis diagnoses, I now have this vision of myself getting more and more disabled and dying early due to lymphoma and/or heart failure. Previously, my family members died of heart attacks (different from heart failure) or stroke. The people in my family have been living longer and longer, and I had looked forward to a relatively healthy, relatively long, life. Now I am out here alone with my fears.
Valerie
I am guessing from your post that you are newly starting on this journey after diagnosis. I have bronchiectasis that was discovered by my immunologist when he did a ct on my lungs after aI got diagnosed. I also have had asthma that was out of control for a few years and back drainage (post nasal drip) that was problematic. This was part of the mess I was in when my doctor started with me and I am a work in progress. He has my asthma under control now, cleared up a sinus infection that was really stubborn, and we are working on the post nasal drip and inflammation in my sinuses. The asthma, he put me on Dulera. Same high dose equivalent to the Advair I had been on, but the Advair was not doing anything and he said after a few years on it, it was obvious I needed to try a different medication. The Duleera was something he had good luck with other patients. He put me on Augmentin, and prednisone for starters. And then Dymista (instead of Flonase). The Dymista is really expensive but the manufacturer gave me a coupon to reduce the costs quite a bit for a while. I am not on Dymista anymore but am on Budesonide, which is a glucocorticoid steroid nasal rinse. And I am finally getting some relief with that. I have two more weeks to do which I am really looking forward to being finished.
Okay, that's what my doc's been doing with me. Basically what I understand with bronchiectasis from my immuno, is that you manage the symptoms to not do more damage to the lungs. My immuno has me contact him right away and not wait for days of being sick but I can even call him that first day. He keeps stressing that. I am having to retrain my thinking because I've spent so long trying to just get over things by myself. And then he sends letters to my Internist so she knows what he is doing.
And with my infusions, I have plans to live a long and health life with well managed CVID. My infusions are offering me some positive results and I am really feeling quite good for the first time I have in decades!
I also wanted to comment on your statement about Lymphoma. I know that can be scary to think that you have a higher instance for getting it. I think that if you were to develop Lymphoma, you'd have a greater chance of surviving it because of the CVID and being well monitored by a team of doctors than a person who got it and didn't have in place an extensive medical team. I've had Lymphoma, its no pick nick but it is survivable. Anyone can get cancer, in different forms. My brother-in-law passed away 16 months ago unexpectedly from an aneurysm. I say that because life is so unpredictable. We savor the life we have and do things to be healthy and the rest is out of our control. I had a very poor prognosis when I was diagnosed with very advanced Lymphoma. I defied the odds and am still here. My Oncologist ended up with the same form of Lymphoma I had and she would ask me about my treatment when I came in to see her to help guide her on her own treatment plan.
Life is complex. Those of us with CVID are dealt a different complication but it is manageable to some degree and we can live long full lives. I am glad you are here on DS Valerie and look forward to you raising more questions about your need for answers and your fears and frustrations. And you successes and celebrations. Sending you a big hug - Zen
I was just in the hospital with what they are calling atypical pneumonia that showed up on a CT scan. They did a brochoscopy to send cultures to see which strain of bacteria. I haven't been diagnosed with that lung disease you have, but understand the fear and just wanted to reach out and say Im here for you. Why I brought mine up is if it isn't a bacteria they find in the culture, it could be a lung disease. I will keep you in my thoughts and prayers. I go for my 3rd ivig tomorrow, so I am new at this also.
Zen had a lot of great things to say and has been doing this longer, so it helps me keep the hope. Please keep us posted and I look forward to seeing more of you on the board.
Dianna
I always have had drainage and since starting IVig and now SCig - I have had less drainage. If I do - it is clear. Lung damage is scary - now that you have an awareness of what's going on - just remember as soon as you start getting sick - get on an antibiotic. Treat all infection aggressively.
Having CVID with lung issues isn't easy - but it is manageable. This is my first winter without pneumonia in four years. I am hopeful that means my body is getting a break!
You are not alone in your illness - there are many friends here that will help you handle whatever CVID throws at you. The information shared here has given me comfort and confidence in dealing with CVID. God bless you.
You aren't alone. I've not been diagnosed with a lung disease yet, but I suspect a diagnosis is coming. I have been having severe SOB, chest discomfort and have been turning blue on a regular basis for a few months. I have pretty much been told that there is something wrong with my heart or lungs, one or the other. My guess is the lungs since the nebulizer helps. They are scheduling a cardiopulmonary stress test to try to determine which one is causing my problems. I'm also on Advair and am getting very little relief. I was on it years ago and it helped, so I suppose things have gotten worse since then. I am scared too, but I try to remind myself that once they know what it is, they can better manage it. I'm here for you if you want to talk.
Bug hugs,
Ashlee
Sending you warm thoughts and prayers. Although, we need to be vigilant with our health and understand what we need to do to get our health optimal, you cannot dwell on what may happen down the future.
I know what you mean when you say the list of ailments seems to continue to grow, I think we all can relate.
Although, my upper respiratory sucks, my lower respiratory seems to be rather strong for the exception of a few asthma attacks here and there......
Regarding Lymphoma, keep an eye on your lymph nodes for increase in size. My lymph nodes in my neck have been enlarged since 02/09 and one popped out under my left arm a year ago. With the new one under my arm, I am now seeing an Oncologist to keep a very close watchful eye to catch Lymphoma in it's most earliest stage. My spleen is also big and juicy.
Not every CVID patient will get Lymphoma or Leukemia or a Lung Disease.
Every time, I get a new diagnosis, I learn about it as much as I can and adjust my diet to do what I can to get my health optimal.
I am very surprised no one mentioned that your CT Scan showed an infection, you do need to follow-up and see if you need to be on antibiotics.
Regarding the yeast infection, Greek Yogurt and probiotics really do work, if you haven't already, give it a try. Both are in my diet daily.
Hang in there, you will get through this.
Light and Love,
Denise
You found a good group here. I have very very minor bronchiectasis but have another lung disease that is progressive. From what I understand about it, you manage the symptoms and once on IGG treatment that will stop the progression of it. The damage that has been done is irreversible. Couldn't agree with Zenaby more, manage symptoms, don't wait forever to go to doc (with any lung issues) and you should plan on living a long and full life...now that you are on treatment, its a whole new game :)
All of the words written here are sound
Also I use a nasal lavage one or several times a day. It is a saline nose and sinus rinse works wonders. It helps to clear the passages I have little to no IgA that protects lungs sinuses. It is a part of daily routine.
I use palmacort nightly for lungs and generic flonase for nose