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I'm still around!

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I'm still around!

Post by Little Audrey on Wed Mar 29, 2017 1:46 pm

Hi All!    So nice to see this group is still alive and well!      I have been VERY busy with multiple health issues.   A lot of research, appointments, and trying to keep up with the daily things that need to be done, has kept me busier than I'd like.

I hope everyone is doing well!!    Nellie, how are you and your dear hubby doing?    I hope things have improved for you both since I was here last! 

  I have 7 stops to make today to run some errands, and I have a morning appointment, so I must finish getting ready.  I just wanted to stop by for a few minutes to say hello.    I promise I will be back soon to leave a decent post to fill you in on my life since hyperparathyroidism, and I'm hoping to hear about the rest of you!

Love you all!!
Audrey

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Re: I'm still around!

Post by Hadleigh on Wed Mar 29, 2017 8:27 pm

Hi Audrey
Good to hear from you. Yes well we are still here but the group is far from alive and kicking, barely any posts these days. We probably won't renew when the time comes so sadly the forum will fade away.

Both Edwin and I still have ongoing problems, his worse than mine but we keep plodding on.

I hope you have had some luck in solving your health issues, trouble is we cure one thing and something else crops up, no fun is it.

Take care
Nelly x
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Re: I'm still around!

Post by Little Audrey on Sat Apr 01, 2017 12:56 pm

Oh, Nelly, I am so sorry to hear the forum isn't doing so well.  It was so wonderful of you and Edwin to get it started for us all when we so badly needed a new one.  This breaks my heart.    Even though I don't get a chance to get on here often, it is so nice to you you're all here.

I am also sorry to hear about yours and Edwin's ongoing health issues.   I was hoping to hear some good news regarding this.    I will pray that things improve for you both.    

I myself am still dealing with the side effects of fluoroquinolone antibiotic poisoning.    I can't even remember if I talked about this here previously.  Because of these drugs, I was on crutches for 4 months, unable to walk without assistance due to the severe heel and foot pain I had.    I now suffer from peripheral neuropathy, double vision at times, Eustachian tube dysfunction, tinnitus, tendon pain, daily twitching in various parts of my body (at least this is not constant now!), and more.  I think it has totally damaged my endocrine system, as since I took the drugs, the hypothyroidism has worsened, I had the hyperparathyroidism and had the 2 adenomas removed in November of 2013, and I now am dealing with adrenal insufficiency, for which I have to take steroids to survive.      I did have an iron deficiency, but that has been corrected with supplements.    I wake up every day and wonder what's next!

I broke my toe last March.  Got it caught on the metal handle of a full bucket of cat litter.    Broke it completely.   In my lifetime, I have broken my nose, the top of my foot, my wrist, and 2 other toes.    This was the worst by far!     It's been a year, and it still hurts sometimes.

Last July, after taking a low-dose antibiotic for 7 months to prevent UTIs, which worked perfectly til this time, I acquired a UTI by a very resistant bacteria.  It was Pseudomonas aeruginosa.    I was told only 2 oral antibiotics would kill this bacteria.   They were Cipro and Levaquin; both fluoroquinolone antibiotics!   I was told I could have opted for hospitalization and IV antibiotics, but I had 2 aging, sick kitties here at home, and I would not leave them.    Having been affected so terribly by the Cipro I took for 3-1/2 years for the recurrent UTIs, I opted for the Levaquin, knowing it wouldn't be any better.    The side effects all worsened.    They have now subsided quite a bit.   Some of what is left will most likely be permanent.

I had an abdominal ultrasound done to look for kidney or bladder stones, to determine whether this might have been the cause of my recurrent UTIs.   They didn't spot any, but something unusual was found.     A stone in my appendix.   I did a bit of research and learned that these stones will continue to grow, eventually causing appendicitis, and because of the stone, the appendix would be more likely to tear at this time.      I decided I did not want to wait for that to happen.   This ultrasound also revealed what the interpreter called 2 hernias.    I found a surgeon who would be willing to remove my appendix without appendicitis being present.    She looked at my ultrasound pictures and said that one of the areas where the ultrasound interpreter saw a hernia, was actually not hernia at all, but it appeared the fascia in my abdomen had pulled away from the abdominal wall.    She said she had never seen this before!   Shocked    She said she would take a look at it while removing the appendix and repairing the umbilical hernia.   Turned out there was nothing she could do to fix this, but it doesn't cause me any pain, so I don't care.

And, this is rather gross, but I've been coughing up mucus about 20 or 30 times a day for the past 6 years, since I started taking the fluoroquinolone antibiotics.   These drugs can affect the lungs also.   They damage all of the tissues in our bodies.  They also damage our DNA.   When I had my pre-op x-ray for the appendectomy/hernia repair surgery, they spotted some densities in one of my lungs.     A couple of months later, after I was all healed up from surgery and had the time, I made an appointment with a pulmonologist to find out what those densities were.  He looked at my x-ray results and said it didn't look serious.  He said I might have just moved during the test.   He suggested another x-ray to get a better look.    Since I had had so much radiation (2 sets of x-rays on my broken toe, 2 x-rays on my spine, a CT scan, and a chest x-ray), over the past year, I told him I REALLY did not want another chest x-ray!     He then suggested a sputum culture.      I had that done a few weeks ago.   Turns out, I'm now dealing with an infection in my lungs caused by another very resistant bacteria.  This time it is Serratia marcescens.    The pulmonologist suggested Levaquin to kill it!   I told him I did not want any fluoroquinolone antibiotics, unless they were the last option to save my life!    Then he suggested Cipro!    ???    Another fluoroquinolone!    I told him AGAIN that I did NOT want any fluoroquinolones!!    So he suggested Bactrim.   This is what I am taking now, and I'm praying it will kill this infection, because I am aware that many antibiotics might be necessary to kill it.    I am guessing I am now getting these more resistant infections from taking so many antibiotics through the years for the recurrent UTIs.    I am very frightened about this, as I am very aware of what happens to people in my situation.    It's not a happy ending.   

After I acquired that Pseudomonas infection last July, I found a WONDERFUL urogynecologist who prescribed something new to prevent UTIs.   She was aware that my bladder lift surgery several years ago stopped the UTIs completely for 3-1/2 years, but then they started again.    My other doctors kept telling me my bladder had not fallen again, which is what anybody with common sense would have surmised.    This new urogynecologist told me the bladder HAS fallen again, but not enough that she would want to perform another bladder lift.   She did prescribe something new to prevent the UTIs.  She prescribed Hiprex.    If I'm not mistaken, I don't think this is available there in the UK.  That is a shame, because it works GREAT!     I have not had a UTI since I started taking it 8-1/2 months ago.   Before I started taking it, I was getting UTIs every week!    

So this is what I've been up to lately.    Not much fun, but I know others are much worse off than I am.    I just keep praying that things will improve.     I will continue praying that things improve for you and Edwin too, as I know you have both suffered terribly with your own health issues.

It would be a shame to lose contact with you both if this forum does shut down.   I was wondering if you are on Facebook.   Maybe we could stay in touch that way.   There is always email, if that would work for you.     Not sure how we would share this info to get started though.   Don't think we want to post it on here.   

Well, I need to get to work here.   I think our granddaughters are coming down to visit us this afternoon, and I have a ton of things to do before they arrive.   Please take good care of yourselves!!

Love,
Audrey

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Re: I'm still around!

Post by Tigerlily on Sat Apr 22, 2017 8:15 pm

Audrey hello!
Still up on that horse, I see! Which is a blessing for us all, believe me!
I've never even heard of a urogynecologist but I am so glad you found a useful one to help you with your longstanding problem.
And I have to salute your care for your ageing kitties - bless you for that. Our Tiger and Lily are now 17 and we love them just as much as you do yours. Kitty-kind will reward you for your intensive care for them. Bless you!
I was cured of my hyperpara and my calcium now lives at around 2.29 with an appropriately mid range PTH. I've been left with quite a few bone issues but I seem to be managing them with 2000 iu Vit D daily, plus K2 and Magnesium in the form of a magnesium oil spray.
The stuff is fantastic. I rub it in at night over my painful shoulders and I get a good night's sleep - plus the ... erm .... slight laxative effect is a bonus.
Apparently anyone taking supplemental Vitamin D (hello Nelly and Edwin!) might also benefit from magnesium in the form of a transdermal oil spray. When I've rubbed it into my shoulders I rub the remainder on jy hands into my painful hands, and that seems to help as well.
In the UK I get my Mg spray from a website titled something along the lines of www.qualifiednaturopath ..... Will post correct link later if anyone needs it.
Love and Best Wishes to you, Audrey - always good to hear the next instalment in your health odyssey. Back on that horse, girl!
Love from Tigerlily xx

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Re: I'm still around!

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