(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi guys. Many posts about making home made ice cubes versus using the ice maker in the freezer. I do that also but I go one step further. We purchased a Berkey water filter about 4 years ago. It has a carbon filter and filters out more bad stuff than any other filter on the market. It's portable and doesn't require any installation. We take it with us when we camp and/or travel. (We are snowbirds). The unit we have costs about $300 but the filters last about 6 years depending on how much water you use. (Spendy investment but not if you calculate how much you will spend on filters over that time period). I have metastatic breast cancer and as a result my immune system is compromised so I feel really good about using this for all drinking and cooking water. (We use a personal water well for 6 months a year). We get no personal enrichment in promoting the Berkey other than making others aware of this wonderful product. Look up their website on the internet to get more details.

Thank you so much!

Wandering, thank you for your thoughts .. but our Forum is VERY concerned about Mycobacterium. Upon a bit of research I discovered one reviewer who said:

Big Berkey must be used everyday or bacteria will grow in dry filters, If you go on vacation have some one baby sit your Berkey, take it with you, dry out filters for 3.5 weeks turning everyday or just buy new filters for $107. Berkey needs to inform customers about this. I had to call Berkey to find out this information.

Frankly, even this one opinion was enough to concern me .. but then it appeared that the a big selling point for this product was removal of fluoride. On this Forum .. our concern is not taste .. it is concern of possible removal of mycobacterium.

So thank you for thinking of us .. but I am concerned that anyone on our Forum consider this product without REALLY researching it .. possibly reading reviews on Amazon.com? Best to you on your travels! Katherine

Yes I believe that is the unit that we have. After the water is filtered the bottom holds about 1-1.5 gallons. We don't use ANY plastic containers for our filtered drinking water. It takes some shopping around to find glass water bottles but that is what we use. If the filtering flow gets slow, they have instructions on how to clean the filters - not replace them. We have had ours for about 4 years and have only cleaned the filters a couple times. Quality product and the current price has actually come down since last year when friends bought one.

Thanks so much. Just the fact that I can work is a blessing to me... as is this forum.

David - what a great quote! My issue is that a suspicious node is in a place that a bronchoscopy or biopsy at the hospital can't reach. But I am feeling better - even looking into the future. I value these good, strong, times so much. Best to you, Kathryn

Kathryn, as usual .. you are busy "counting your gratitudes" .. good for you! Truthfully .. all I have to do is look around me and I am made aware of just how blessed I really am .. there are indeed so many others so less fortunate .. each in different ways. I really try to keep that in mind. There are ways I have difficulties .. but there are SO many blessings .. why not focus on the blessings? Makes the day SO much brighter! As I say to my husband "Rainbows and Butterflies!" when he gets a bit grumpy! Hugs to you on this journey! Katherine

I have Stage IV, Metastatic Breast Cancer. This not "curable" per my doctor and everything I have read. My father died at 53 from heart attack number 4. I always thought that would be my fate. Now I at least know the enemy and can work with my oncologist to figure out how to extend my life and make it as comfortable and productive as possible. The biggest positive of this journey is my husband and his support. He is really the only close family I have but he is my best friend and the love of my life. I hope and pray for all of you and I hope all of you have a support system. So important. Love to all.

Wandering, I SO understand. My dear husband is on chemo .. Stage 4 .. not curable either .. and obviously I have this MAC .. but as with you two .. we live our lives as fully as possible and has happily as possible! My husband just got back from a "road trip" with our daughter to watch our grandson who is in his college senior year play his final game as quarterback for his football team. They drive 7 hours each way! This ends a nine year journey of road trips for the two of them .. a bittersweet trip for the two of them .. great talks and great fun! All a part of living our lives to the fullest while we can.

We also are each others best support system. As we say: Our kids love us .. our grandkids love us .. but as three in the morning .. It's just you and me Babe! That tells it all! You and I are indeed blessed to have that support system .. MANY do not. Are you aware there is a Mayo Clinic Connect for Breast Cancer? There you may find the same kind of wonderful support we have on our Forum for our MAC people?? Maybe check it out? https://connect.mayoclinic.org/group/breast-cancer/ Sending you a hug! Katherine

Yes, I think I was on the breast cancer connect. Don't know what happened and I think I might not now be on the blog but I'll check on the link. We don't have any children and nobody from my family knows about me except my sister. For me that's the best thing - no need for everyone to worry. We have spent this summer in doctors offices, clinics, labs and hospitals. He had a stent and skin cancer surgery and I had my usual stuff. I was wondering how we would spend our time after we retired - didn't think we would be doing that but here we go.
Heading for Arizona on Friday for the winter. Right now it's 60 degrees in Montana. It's usually snowing by now.