should I push for testing?

themrsstacey

New member
Ok, I have never done this before, but I need some advice. A little bit of history-my husband(27) had very frequent lung infections as a child. His bedsheets always had a salt residue on them from his night sweats(which he still has). They had him tested for cf, but his results were borderline, & he was never retested. The summer before we got married(he was 20 years old), he ended up in the ER for diagnosed pleurisy. From that point on, he has had a chronic cough, & allergy symptoms that don't ever go away. Fast forward to current. He is exhausted. He can't sleep at night, & his sinus infections will not go away(blows his nose constantly green). He gets winded while walking normal, or picking up one of our small children. He can't exercise without feeling like his chest is going to explode. He has had a few dizzy spells where he had to sit down & catch his breath in the last couple of weeks. Also starting these past few weeks, is strange bowel movements(he is going sometimes up to 4 times a day, where normal for him was once a day) He had mrsa infection over the summer, that we almost couldn't get rid of. Im just throwing all of his symptoms out there. We finally got health insurance at the beginning of november, & sent him in for a physical/bloodwork. His bloodwork shows low platelets, high cholesterol(despite a VERY healthy diet which we started two years ago, hoping to help him feel better), & a vitamin D deficiency, which we don't really understand, because he drinks whole milk daily, & is outside all the time. With his cholesterol bloodwork, they sent us to a cardiologist, saying he could have a heart problem. Which kinda lines up with him not having energy, & being winded. As soon as the cardiologist listened to his heart, & had him breath in & out, he said he was prescribing him an inhalor, & sending us to a pulmonologist for chest xray & a full workup. He said my husband more than likely has asthma, & some type of lung infection. His pulm appointment is monday, & I don't want to sound like a crazy person, but I don't think asthma would make him feel so bad for so long! But that's why I'm here! Should I just let the pulmonologist do his job, or should I push for a sweat test to be on the safe side? There could be a million things wrong with him aside from cf, & i know that. I just don't want to push for an unnecessary test, if I'm crazy for thinking he could have cf. Help!
 

Aboveallislove

Super Moderator
Rushing for dinner so sorry ths is short but if he had borderline results and these problems he should be treated for cf...even if they never get a positive result! He should get in ASAP to a cf doctor at a cf clinic for both a sweat test And full genetic testing....more later.
 

Kristan

New member
Yes...if your insurance allows you to go to a CF doctor and you can get a relatively quick appointment that would be ideal. If not, a good pulmonologist will order standard tests to try and put the pieces together. Basic CF blood panel, Alpha-1, IGE if allergies are involved, and a MUST, a sputum sample. If your husband has never had a CT scan than they may order that and as well. CTs are expensive, but all the other tests are easy to get covered by insurance and would be a great starting point. At some point he should have a Pulmonary Function Test.

I have an HMO, so I have to work to get treatments covered at times. You should never feel like these tests are unnecessary. He deserves to have a treatment plan and not a band-aid. He is a husband and a father and the health system needs to do better for him. Advocate for all the information that is needed. Treatments will be life altering!

Regarding bowel movements...you mentioned he was treated for MRSA, so hopefully he has been taking probiotics. Definitely mention it to the doctor.
 
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