Hello everybody...hope y'all are doing well. I have had this belly thing going on for a year and have been questioning my doctors (gastro and primary care) about it and they kept telling me it's part of the descending colon. A couple of weeks ago I told my hematologist's nurse practioner who upon examination agreed that the perpendicular structure is the colon. She said she couldn't palpate my spleen even though I told her the CT scan a year ago showed my spleen to be diffusely enlarged. She said it would have to be at least double in size for her to feel it. Anyway, I had a check up today with my primary doctor and I think he said he could feel it...don't remember and of course my non supportive husband didn't come in the exam room with me...long story short I am having the scan tomorrow and am scared to death of what it will reveal. I have had so many different doctor appointments this month that my head is spinning and, the end of the month I go to see my pulmonologist because a chest CT scan a couple years ago is suggestive of MAC....mycobacterium avium complex. This could be the reason for my chronic cough and shortness of breath. When I was diagnosed with it he said he wasn't going to treat it because I was asymptomatic. I have been so worried, depressed and angry that some days I just want to give up. Trisomy12 no 11q and no 17p deletion and unmutated. If any of you are the praying kind please keep me in your thoughts and prayers as I will you.
Best Regards,
Dianne
Written by
Ladydi49
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Dianne I will be keeping you very much in my thoughts and my prayers. You are really going through a very difficult time right now, please know that you have all of our support. I'm also sending you my most positive hopes for the outcome, please do let us know.
Thank you so much DebKat999....I will most definitely be back with an update. Tonight before I wind down and try to sleep I will listen to a meditation tape: Steven Halpern Deep Theta Music for Brain Entrainment....it's awesome!
That's an excellent idea! I've been wanting to look into meditation as well. Recently I saw a book called "Meditation For Fidgety Skeptics", great title I think!
I heard about the CD through a fellow nurse friend, liked it and then ordered it online. I use to walk 2 1/2 miles several times a week but have been too tired and short of breath which is so frustrating. I'll have to Google that book you mentioned...thanks😊
It's the feeling of not being listened to plus the not knowing and uncertainty that's making you feel depressed, anxious and angry and that's completely understandable. Hope you get some answers soon. Praying for you Dianne and sending good luck wishes.
I am sending you big hugs, big prayers and super positive thoughts for a good outcome. I have a similar "Myco" but it's a coinfection of Lyme disease called mycoplasma. I have anemia, thyroid , and lately major vision issues with a husband that doesn't support me at all even though he had major surgeries 3 times and I was there for him and stayed overnight at the hospital and went right to work for as long as 6 weeks. No support definitely adds to the worry, depression, and anger. It makes it so much better to have support ❤️ Thinking of u and please let me know how things go
Hello Lymeforyears OMG I can relate. My hubby had quadruple heart by-pass surgery, lithotrypsy to dissolve kidney stones, a cataract surgery that medical neglect resulted in him losing his eyesight in that eye, a successful cataract surgery on the other eye that came out perfect (he's diabetic and doesn't eat right even though I always cook healthy foods), yells at me for the least little thing (I worry he's getting early dementia). I have always been there for him but he isn't there for me...won't go into the doctor's offices with me...doesn't accept the potential seriousness of my cll and mac. By the way, over the years I have been tested for everything including Lyme (we are both from western MA close to the Connecticut line. I retired 4 years ago after working as a nurse for 30 years and I feel a special bond/caring with everyone on here and am grateful for the support.....
I will be sending u daily thoughts and prayers now lol. Are u sure your husband doesn't have a long lost brother?? Lol. What's really crazy is my first husband was like that too (he passed of a heart attack). I was born to be a caregiver I guess but it's just my nature. If I was appreciated one day I might faint lol I worked for a doctor at University of Chicago as a secretary for 20 years and when he developed Parkinson's I became his home care CNA. 😀 There are a lot of good Lyme docs on east coast that I may work with in the future. Hoping for great results for u. Hang in there ...❤️
Hi Diane, I am definitely sending up prayers for you. I just had my review this morning at M.D. Anderson (I am in a trial with Ibrutinib/Venetoclax) and while I'm not Trisomy 12, I am 11q and unmutated. I also have MAC. I think I was diagnosed with that in 2007 or maybe it was 2009 and my pulmonologist hasn't treated me either since I've been asymptomatic. I don't really have a shortness of breath except for my anxiety issues. I don't think they can be absolutely sure that you have MAC without doing a bronchoscopy which I had done to confirm the diagnosis and then it takes at least 6 weeks for the results to come back. My husband is as supportive as he can be but he also has his own issues with MCI - mild cognitive impairment. He knows I have CLL and knows it's cancer but has made no effort to understand it and probably wouldn't anyway. I understand very little myself but I am trying. I don't have a spleen due to some surgery I had back in 2000 for a tumor on my pancreas - which fortunately was 'pre-cancerous'. Please let us know how you progress and what your results are. I'll be thinking about you
Thanks Paula...had my scans yesterday then in the afternoon I had a dental appointment - no cavities but need to have a crown replaced...quote for cost is very expensive...yikes. bad night last night...up coughing most of the night and now I'm like a zombie...so tired. I'm getting discouraged. I think my current state of affairs are pulmonary and not related to my cll. That being said, I have an Appt with pulmo the end of the month...kind of nervous about it...will post updates as soon as I hear anything...
Hi Dianne, It sure does sound like you have your hands full with all that's going on. It seems that when it rains it pours. I hate to hear about you needing the crown. I've got an upcoming dental in April and even if nothing is wrong I dread it. I know what you mean about the coughing. I had a spell of it a few months ago and I think I must have bruised something because it got to the point that it hurt to breathe. Thankfully it resolved but it was scary for a while. Please let me know of your progress and what your pulmonary says. Best wishes.
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