I'm Back!!!

Hi Everyone!

You can't keep me away!!! I'm here to stay and how lovely it is to be here!

The conclusion drawn from my wonderful spell in hospital, was that my emergency admission to hospital by ambulance on Sunday morning could have been avoided by proper after care following surgery on Saturday... It was pointed out by several different doctors, that an overnight stay in hospital and continuing monitoring of blood levels including calcium and PTH should have been offered. The surgeon never came to see me though quite a few other doctors did because they found my case interesting! There were complications with my other disease, but that probably should have been taken into effect when surgery was planned. I always thought my surgeon was an idiot and he proved it. I wonder what he'll say when I have the follow-up appointment next Monday?!

I had a very interesting talk with a senior consultant who was looking for interesting patients to test out one of her students: in fact I became part of his "exam", bless him.  (I think I overwhelmed him with problems!) She wanted to point out that my experience shouldn't be counted upon as common practice in the hospital. I should hope not! My discharge notes were also interesting: I found out all sorts of information pertaining to my other disease that I knew nothing about. I need to seriously consider how you get copies of your medical records.

As far as how I feel goes, the world is bright and my HPT depression has lifted. The incision doesn't hurt, but the dressing is annoying and it's a longer incision than I thought so my surgeon has gone down even more in my estimation. I don't feel as great as I thought I should but then the stay in hospital and other complications it involved probably have a lot to do with that. The main thing is, it's all over, the adenoma is gone and I can move onwards and upwards from now on.

Thanks to all of you for your support since I've been on the forum and especially recently. Just don't expect me to leave because I'm (hopefully) cured! I'm still sticking around and I still care about you all and the ups and downs of your pHPT lives.

Love and many hugs... because as you'll be relieved to know, I'm STILL good at hugs

Brigitte xxxx

Brigitte,
    So glad to hear that the depression caused by PTH disease is gone.  What you went through was not fun but the outcome was so positive.  
     Get some rest and enjoy each new day!!! 

Nancy


Lets hope the next person doesn't have to go through what you went through as far as inadequate monitoring. 

Brigitte
Very happy to hear your doing better. Please don't leave the forum as you have a lot to offer. As far as how to get medical records in the US I just talk to the doctors records girl and she will get them ready for me to pick up. Pretty easy here. Jasmine will know how to do it UK style. Hugs Kathi

UK hospitals have a department that deals with medical records requests.
You should find some info and/or a request form on the hospital's website.
Otherwise, ask when you are there on Monday.
There is likely to be a charge for this service, but they are bound by law to provide you with requested medical records.

It sounds like your aftercare was the opposite of Nelly's experience at Southmead Hospital.

Edwin

Thank you,  Edwin. I eventually found the info on the hospital website and will get that organised when I feel a bit more up together. 

I'm glad Nelly's hospital experience was superior to mine as I wouldn't want anyone to have to go through it as I did! 

Brigitte xx

Well, although Nelly's surgical aftercare was very good, that can't be said about the ward where she spent the night.

Edwin

Hi Brigitte,
Its lovely to hear you so upbeat and positive, i hope you stay on the forum, its so nice to hear that the depression has lifted, you can have some dark days with this illness!!

I wish you all the best as you recover and your body heals, i was saddened yo hear you had to go back in to hospital, that must have been upsetting for you.

Here's to a speedy recovery   

Take care

Diana xx

Hi Brigitte,
Just wanted to write and ask how are things now?  I have been thinking about both you and Nelly and hoping that things are going much better now.  I have been pretty busy recently with Mum not being so well and then feeling pretty rubbish on top does not help.  I just feel stuck in limbo land at the moment with nothing happening much on the HPT front.  Anyway I hope you are feeling heaps better, would love to hear that things are going well for you.
Take care and hugs from Sue

Ditto Brigitte, I was about to ask how you were doing.

Nelly

Thank you for your concern Ladies. I have had quite a lot of problems since the op and haven't really felt great at all. I'm waiting for the point whereby I feel cured and go out and tackle the world head on.... Eventually. I've had a series of fluctuating blood results, noticeably white blood cells, sodium and the calcium has been low normal. The GP doesn't recognise that anything should be done about calcium, so long as it's in normal range, since your body has to learn to recognise normal levels. Right. Don't you think it might be a bit difficult for the body to adjust, Doc?! Apparently not. You can go from 2.98 down to 2.27 and everything will be fine and dandy. I just have to cope with it myself since I can recognise the tingling feeling. It has got better though, which is probably just as well since he's not going to test calcium again until the Endo tests it in December. As for the other blood tests, I've been tested for loads of things and it's been recognised that there must be an infection in my body somewhere (no one knows where) but then the next week the blood tests will be more or less normal. It's like playing hide and seek. Historically, my blood levels of various things can go up and down like yoyos and it's put down to taking a first generation anti epileptic but you can't just stop taking that since it would do more harm than good. I've had off and on problems with the old waterworks since several weeks before the op but no infection ever shows up. I'm having a bladder scan next week, so that should prove to be fun... I have to have a kidney scan at some point which is being organised by the genetics specialist I saw regarding my other disease. She said it should be done after I had got over my op, but no one knows when that might be. Apparently they can't just scan your kidneys at the same time as your bladder if there's a kidney scan already in process. What?! 

Also going on are some complications with my other disease and contradictions over what I was told whilst in hospital and what appeared on the discharge summary which still haven't been resolved and means I still can't drive the car. It's all very involved as the GP and I are still looking for confirmation of details provided in the discharge notes about my condition that neither he nor I were ever made aware of. I still don't have an appointment for the MRI I apparently need either. I'm afraid I'm back in limbo land again really! 

So that's where I am really, still waiting to feel great because it hasn't happened yet. My GP thinks that maybe my body needs a long time to recover because I had become so poorly before the op and had a bit of a disaster just after it. He's referring me back to the hospital so at least I might be able to get stroppy about why information about me hasn't been shared with me! 

In the meantime, I'll meet you all in the Limbo Land Cafe. 

Love and hugs 

Brigitte xxxx

Brigitte I wonder if you do have a kidney stone as I had a bad uti about 3 weeks before my op (not something I'm prone to) and I'm still having on and off issues, Mr M agreed that it was more than likely the stone causing it (unlike my GP who said not!) as I have no obvious infection but lots of back and abdo aches.

Never ending isn't it, I feel like a walking disaster

Nelly

Oh Nelly, I'm definitely a walking disaster! It has been thought that I might have kidney or bladder stones but we've never got to the finding out stage. I do have loads of low stomach and back/side pains which come and go. I've retreated back into my shell since it has been pointed out that by some people that I'm always ill and perhaps I like being ill or have got used to it. With friends like that, who needs enemies?! It just makes me doubt myself and feel like I'm never going to get out of the hole I landed in with pHPT! There must be an answer somewhere, for you and for me. 

Love and hugs 

Brigitte xxxx

You, like the rest of us can't help being ill Brigitte, if the people who say these things could walk a day in our shoes then they would soon change their tunes, I wish my sometimes not so helpful GP could experience what its like, she might then be more sympathetic instead of sighing and wanting to run for the hills when I walk in

It is difficult having chronic illnesses as you do forget what feeling well is like and it becomes more a case of the less crappy days being the good ones, not sure that makes sense . Since I was about 12 my life has revolved around hospital appts, tests and various ops, I wonder how many hours out of my life that would be, lots and lots and lots and lots

It is still early days for us so we have to stay positive that better times are round the next bend, just hope the road isn't too long !

Sending positive vibes to Southampton and you know we are always here to lend an ear anytime.

Nelly

Thank you Nelly   I'm sorry you've had health problems for so very long; it must seem never ending. My childhood was riddled with misinformation and my rare disease didn't get a diagnosis until I was 26 and since the crossover of symptoms once the pHPT came into it, I'm now told it has been completely mismanaged for the following 22 years! And for the last 5 years I've had one thing after the other and 7 operations, so I'm quite ready to feel better now! I know there are lots more people worse off than I am but I really want to lose that vulnerable feeling of being lost in a hospital/health system where no one can apparently help. I think I counted too much on a fix-all magical parathyroid op. As you say though, you have good days and bad days and today is not a good one. 

Thanks for the positive vibes! I'm sending some back to Somerset for you  You know you've been terribly good to me already, so thank you extra much for the listening ear. 

Love and hugs 

Brigitte xxxx

Bless you two, Nelly and Brigitte.

I'm sorry to hear things are not progressing too well for you both after the op, but your support for each other is inspirational (and very instructive) to us all.

Love and Hugs from Tigerlily xxxx

I second that Tigerlily.
Brigitte & Nelly,
It's such a big pile of poo that you are still having recovery problems you have both been through so much and surely it wouldn't have been too much to ask for a quick and simple recovery, that's what you deserve.
Having to put up with useless unsympathetic medical staff or those who just don't do their jobs properly is something most of us have experienced and I too would love them to feel what it is like to be one of us, just for one week !!!!
Brigitte I understand how you feel when people make silly comments about you always being ill...... Lucky lucky them that they are fit and healthy all the time. I sent my two sisters and brother a letter of explanation and a copy of genetic report, obviously saying sorry to give bad news but thought they should be told so that they can get checked out if they wanted to, only my twin sister has bothered to reply.
I do hope you both start feeling much better soon.
Love Amanda xxxx

Oh, my goodness, Brigitte, I just now read your comment here about some people thinking you like being sick! That's unbelievable! Obviously, those people have never had to deal with serious health issues. If they ever did, they would understand. You are right; with friends like that, who needs enemies!

It so sad hear of so many struggling post parathyroid surgery. I too was thrilled to have my surgery, because I just knew it would be the answer to my prayers, and I would once again feel wonderful and be able to get back to the life I knew several years ago. I guess it just wasn't meant to be. We can't give up though. We must march along until we win our battles! And we WILL win these battles!!

I was wondering too, you mentioned that your sodium has been low. I was wondering what your potassium looks like. Low aldosterone causes low sodium and high potassium. My sodium was usually low/normal, and my potassium was high/normal, but I did indeed have VERY low aldosterone. You might want to get your aldosterone and renin tested. You might possibly have an adrenal issue going on here. Just a thought.

Nelly, I'm sorry you too are dealing with so darned much! At least I was a healthy child. My problems started later in life. You poor soul.

And I too, as much as I hate admitting it, wished that all of my doctors who refused to diagnose me, would all experience this disease themselves! And I wished they would have to go from doctor to doctor to doctor being laughed at and fighting for years to get diagnosed. I know that sounds awful, but that's just how I felt.

Onward we go!

Audrey