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MamaScarlett.... I do my treatments in the morning while my son does his morning lessons (9:30) and then in the afternoon while my son does his afternoon lessons (2:00). We do half of our morning lessons while I vest in my bedroom and then we move to the school room for the rest. I bring my...

I have CF and and I homeschool my son. We do year round school so that when I am doing a tune up we can take off for 2-3 weeks at a time. I create my own lesson plans... based on our state's requirements for the grade we are doing. We don't do school online... school time is one time of the...

I had a bad experience like Greatbay. I had nausea, joint pain, depression and a huge list of more side effects from the meds. I had to stop taking them because the treatment was worse than having the disease. I was only able to stand the meds for little over 6 months. I agree again with...

I am considering getting a second opinion on my CF care and MAC. I have family in Nebraska and used to attend the Pediatric CF clinic there from 15-2 years old. I know I would need to be seen by Adult program. Any one recommend a CF doc there??? I have heard of a Dr. Murphy.... Really...

I have what my docs call pre-diabetes. Here is my advice to you.... Eat lots of whole grain carbs, brown rice, and avoid sweets (No SWEETS). Also drink 6-8 glasses of water. I have found if I get dehydrated even a little bit my sugars go out of wack (especially the next morning). I am able...

I was treating my MAC for the past 6 months.... I had to stop the meds. I have horrible ringing in my ears. I have been off the meds for a month now and I still haven't gotten my hearing back. I was on amikacin for 3 months and zithromyicin for 6 months. The ringing drives me crazy and at...

I have had trouble with my feet since I was diagnosed as pre-diabetic. They tried to tell me it was a fungal infection. Bought fungal cream and it only took care of it temporarily. I have tried neosporin and all sorts of foot creams. My feet don't itch but they are flakey and look like a...

I have a dog. I am more afraid of her walking in our muddy backyard. Our dog is a little princess and she keeps herself very clean.... we think she is part cat the way she keeps herself so clean. There is no way I would give up my dog. She has gotten me through the tough stuff the past few...

I have been doing MAC treatment for 6 months. I gradually started getting side effects from the drugs and finally got so miserable I could not stand it (joint pain, joint swelling, "lady issues", bloating, horrible migraines and almost constant regular headaches and lower back pain, and...

I went to have a drug level blood test today for my MAC. They could not find a vein... anywhere. Horribly painful. They finally had to do a deep vein IV (just like getting a PICC but no long tube to my heart). Horribly stressful and now my arm hurts... and my wrist... and my hand. I WANT A...

Now that I have MAC I have to get a CT scan every 6 months to see if and when the hole will close up. They can check my previous scarring while they are at it. I imagine that I will be doing this from now on. MAC is a part of my life!!

My veins are not visible either. You can see a few on the inside of my arms (where they put PICC lines). Blood draws are murder. Multiple pokes... veins roll, pop and blow out. My arm are so sensitive that I have to wear super soft shirts. I was a port but doc won't do one yet.

At my clinic I sit in the large waiting room until a tech comes to get you (anywhere from 30 min- 1 hour). Then I do your PFT's with a tech. Then if there is a room available they will take us back to a room. I then am taken to the room. We wait for 30-45 minutes for a nurse and then after...

I googled all the medications that I am on for MAC and CF.... I am having insomnia something horrible. The only thing that comes up is that zithromycin can cause insomnia. I am on 500 mg every day. Anyone else have this experience?? How do I get some decent sleep while following my MAC...

Not from my spouse but from other family members-- Yes! Until they live your life, feel your exhaustion, feel the discouragement.... they have no clue. The can make all the suggestions in the world and point out all the reasons in the world that you dropped the ball. The reality is this...

I am being treated for MAC (mycobacteria avium complex). I had my CT scan on Wednesday. The doc said that their is some progress on the healing of the hole in my lung. No idea how much... inches, centimeters. They are not happy with the little progress. They want to start me on even more...

The radiology department just called my doctor and said they found an esophageal dysmotility. I was having a CT scan for my MAC. Anyone else have this??? I can't move forward with treatment.... my insurance deductible started over and we can't afford the tests. The MAC treatment is costing...

Yesterday I had my 3 month long PICC line pulled. Tonight my arm stings. It feels like it is burned. I have small pimples where the bandage had been and where the statlock was the skin looks like leather. I have gently washed the arm off with warm (not hot) water. When I touch the arm with...

Let me clarify something... I am schedule to do the oral drugs for 12-18 months to start out. I am doing IV amikacin for 3 months and then be moved to inhaled Amikacin. I suffer from insomnia and when I do sleep it is very light. I am on oxygen to help my sleep issues. We do need to...

I have been doing the 3 drug regime for MAC. I haven't had a night sweat since I started the 3 drugs... almost 3 months. Last night I woke up in the middle of the night with my chest and neck soaking wet. I felt sweaty but not super warm. What does this mean?? Is the MAC drugs not working...