A Special Recommendation

I have been making a lot of changes in my life to improve my health, and have stumbled upon a few products that seem to really help. One of them is a Himalayan Salt Inhaler. I bought it after finding that I recovered more quickly than usual after a respiratory infection when I used sea salt in my vaporizer at night. I have now been using it for a few weeks, and it helps my lungs so much! I've been using it daily, and when my lungs feel so congested that I'm afraid I might be getting sick again. The amazing thing is that, unlike anything I've tried before, it takes away the congestion! I also seem to have more strength and energy than I've had in many years! I'm so excited and have more hope than I've had in a very long time!



There are many different brands of salt inhalers available, but this one is ceramic and has holes (many small and one big for filling) in the bottom like a salt shaker. It arrived with 2 packets of pink Himalayan sea salt crystals. The manufacturers recommend using a packet of salt per month. Just as in ceramic salt shakers, you pour the crystals into the bottom of the inhaler and there is a little plastic plug that fits in the hole. Inside the inhaler, below the mouthpiece, is another layer of ceramic with salt-shaker holes. To use the inhaler, you shake it and with the mouthpiece up, inhale deeply. After holding your breath as long as possible, exhale through your nose. That allows the salt to treat your sinuses as well. The manufacturer recommends using for 10 minutes twice daily. That sounds like a bit of a burden to me, so I sit with it next to me as I go through my day. I even take it to work with me and use it at my desk! I've gotten some weird looks, but I don't care...it makes me healthier! :)


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My November '11 Appointment with the Immunologist

I saw my Immunologist yesterday, and I was able to put my mind at ease over some of my concerns regarding stopping my infusions. I have been worried that I had no antibodies to the kinds of diseases that children get immunized for, and my immunologist showed me my most recent test results (2 months after stopping infusions),  and said that I have antibodies to those diseases. The part that I'm lacking is in defense against pneumonia-causing organisms like mycoplasma and other nasty things like that. He said that it's actually pretty common for CVID patients to have antibodies to most other diseases and just be lacking in defense against pneumonia. That really puts my mind at ease.

The one thing I forgot to ask him about is my hair falling out. I am a woman with long straight hair, and I wash it, condition it, and comb it. Lately it's been falling out by handfuls. I'm getting concerned and don't know whether it's CVID related. However, there are quite a few people in my support group who have the same issue.

I have now been off of my infusions for 6 months and off of Trileptal for 4 months, so yesterday they did some bloodwork to determine whether my antibodies are recovering now that I'm off of the Trileptal. I should know the answer in a few weeks! It would be so amazing and wonderful if I could recover and not have CVID. Of course, I may still be IgA deficient after this, but that would still be better than full-blown CVID!

On the downside, I'm on my 3rd round of antibiotics (in addition to the prophylactic ones) to kick what I believe is pneumonia. Originally I was sick for 4 or 5 days and seemed to recover on my own. I thought it was a good sign. Then about a week later I realized that I had not only a sinus infection but that it was moving into my lungs. I called for antibiotics, and they told me to take triple my normal dosage for 4-5 days then call to let them know how I was doing. I called on the specified day, and since I seemed to be feeling better and hadn't heard from them, I dropped back down to my maintenance dose the next day. That night I went to bed early and woke up about 9:00 PM with significant chest congestion. I made myself some hot lemonade to help loosen my chest up, and went back to bed. When I woke up the next morning I was so sick and so weak that I had difficulty walking just the few feet to my bathroom. I called the Dr back and they said to take double my normal prescription twice daily for 3 weeks (that was a week ago). I've done that, and have felt my strength returning, but I'm still so weak that I need a wheelchair rather than walking any distance. When I saw my Dr yesterday he believed that I could well have had pneumonia, said I was very pale, and put me on a 3-week course of Cipro. He said it's good at fighting all the nasty little beasties that cause pneumonia.

I started the Cipro today, so hopefully I'll feel much better in a few days/weeks.

Tenth IVIG Treatment

Today I had my 10th, and possibly final infusion. I say possibly final because my doctor is in the final stages of getting me switched over to Hizentra Sub-Q! I'm so excited!

The infusion went really well despite the fact that I have either pneumonia or bronchitis right now and am on another round of Levaquin for it! Anyway, I wanted to avoid the battles that we endured last time, and I realized that one thing I'd done which contributed to all of the conflict last time was that I had them keep it at 25 for a whole hour. I was pretty dopey from the premeds and I so when the nurse asked me if I wanted to stay at 25 for an hour I thought I had enough time left in the day to get my whole treatment in easily, so I said "sure, why not?". Because of that mistake it ended up being a very stressful infusion that time.

So this time I went prepared. I told my mom ahead of time what speeds I wanted and how frequently I wanted the transitions. I then wrote them down for her to show the nurse. Because I did that, there was no conflict, and I came up with an arrangement that's slow enough to take care of me without causing them to freak out. I had them start at 25 for 30 minutes, then transitioned to 50 for 2 hours, after 2 hours I had them go up to 75, and keep it there til I finished. I walked into the office at 8:30 AM, and left at 4:00, so I think we did well all-in-all.

Tonight after getting home and having my post-infusion cupcake reward, I took a benadryl, and some medication for my migraine that I've had since yesterday. The migraine is slightly improved, but is still a "back-burner" headache...meaning, it's still there, but I can deal with it.

I hope that I don't feel bad after this one, and I hope that the Hizentra is a good thing for me to use. I have heard a lot of success stories from those who have switched, and it could make my life so much better if that turns out to be the case for me.