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Author Topic: Is this a matter of 'routine'?  (Read 3433 times)

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Offline joanne

  • Member
  • Posts: 8
Is this a matter of 'routine'?
« on: June 16, 2008, 08:05:05 AM »
It's almost 2 weeks since mum tested HIV+ and I've just learnt she has to have an Endoscopy and Brain Scan either today or tomorrow. I can't get an appointment to see the Consultant until tomorrow, so information is sketchy as it's come through my mum. She said they have told her she has lots more viruses in her blood???? I'm not sure if by this they mean her 'Viral Load' is high, I'm just guessing. Are these tests cause for concern, or is it just a matter of routine to see how or if the infection has progressed to cause something more sinister? Have any of you, or do you know anyone, who has had to have the same tests?
Also, she has started medication now, I have yet to find out which type, just know its 6 tablets taken all at once, barring one. Whichever 'the one' is, she missed yesterday, as she was asleep. The nurse left it on her bedside table and mum never spotted it. She seems to think that because she is on an infectious diseases unit, her HIV+ infection is strictly confidential to most staff there as a couple of nurses she has spoken to told her they didn't know what she had??!! I find this very alarming when it is those people who are giving her her meds, meds which have to be administered religiously. Today, she is shaking considerably, but this is possibly the worry of being told about the 2 scans? I am so worried.
Any information on the above tests will be hugely appreciated thank you.

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: Is this a matter of 'routine'?
« Reply #1 on: June 16, 2008, 09:49:44 AM »
Hi Joanne,

Yes, "lots of viruses" means that your mum's viral load is high and this can be a cause for concern. As for the endoscopy and the brain scan, well they aren't what I'd think of routine examinations relating to HIV itself. Given that your mum is in hospital it sounds to me like she's probably exhibiting symptoms of other conditions.

These conditions might be HIV related or they may not. The examinations will determine that one way or another.

As for the medication, you're right it does need to be taken properly. The nursing staff should ensure that your mum takes her tablets when they give them to her and in front of them, so they know it's been done.

MtD

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: Is this a matter of 'routine'?
« Reply #2 on: June 16, 2008, 09:57:11 AM »
Hello Joanne,

Your asking some questions, which are difficult for any of us to really answer. I am sure your mother is receiving the best of care. I understand how concerned you are, I know this isn't easy.

If your mother has agreed, you need to ask the doctor more questions, and get more specific answers. Such as her viral load, and current t-cell count. Ask the doctor specifically what they are checking for, when it comes to all the tests, that your mother is getting right now. Ask the doctor about any opportunistic infections, that you mother may currently be diagnosed with ( or waiting for a diagnosis)

When I had started on meds, back in October of 2003, I had 16 t-cells and a viral load over 500,000. I was hospitalised back then, for one day, due to bacterial pnemonia, and was on an IV. I was 51 years of age, when I started on meds, and had my aids diagnosis, it was also 17 plus years into HIV infection.

The medications that I was on back then, were Bactrim, Zithromax, Prednisone,Diflucan, shortly after that I was started on my antiretrovirals. At that time it was Viramune, Zerit  and epivir. Try to get the names of the medications that your mom is on.

I had an endoscopy done back in 2003, because at that time , I thought I was suffering from GERD. ( I knew what was actually going on though) In reality, I had a very severe case of candida ( thrush) all the down my esophogas (sp) I have had one MRI done that was for bulging vertabrae in my neck. This had occurred all around the same time.


Your mother is going through a difficult time right now. I remember very well, how difficult it was for me. Continue to be there for your mom. Comfort her, let her know things will be OK. I also know thats not always easy to do. She needs your strength and support right now.


Ray




 
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline joanne

  • Member
  • Posts: 8
Re: Is this a matter of 'routine'?
« Reply #3 on: June 16, 2008, 10:08:51 AM »
Hi MtD,
Thank you for replying.
Yes she was finally admitted into hospital after her weight fell to 86 lbs. The Doctor initially wanted to record exactly how much she was eating as all CT scans etc. were coming back clear. I think they thought she was depressed and possibly suffering Anorexia, until they did this final blood test for HIV.
Her other symptons have been persistent oral thrush, which I think has been affecting her throat and oesophagus as she struggled to swallow. Also, terrible mouth ulcers. Both have cleared for now, just these two tests tomorrow. Things will hopefully be clearer once we get the results and I speak with the Consultant.
Thank you again for posting.

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: Is this a matter of 'routine'?
« Reply #4 on: June 16, 2008, 10:17:21 AM »
Her other symptons have been persistent oral thrush, which I think has been affecting her throat and oesophagus as she struggled to swallow. Also, terrible mouth ulcers.
Thank you again for posting.

This is most likely why they may want to do the endoscopy. I also had the terrible mouth ulcers. My lips, looked terrible, and it was painful to eat, swallow or drink any fluid. Had to do it through a straw. The lips started clearing up, pretty fast. and within two weeks were very much improved.

I will be thinking of your mom, and wishing her the very best...


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline joanne

  • Member
  • Posts: 8
Re: Is this a matter of 'routine'?
« Reply #5 on: June 16, 2008, 10:23:18 AM »
Hi Ray,
Thank you for posting.
I will right down everything I need to ask, as I'm sure there will be something I forget.
My mum has 110% support from myself and the few other family members she has chosen to tell. I can only imagine how she must be feeling.
I tell her I love her constantly, hold her hand and give her words of encouragement every day. No one should have to go through this alone and I feel so sorry for those who have had to suffer the pain of rejection at a time when they have needed support so badly.
Thank you again.
Joanne

Offline md

  • Member
  • Posts: 196
Re: Is this a matter of 'routine'?
« Reply #6 on: June 16, 2008, 02:15:45 PM »
Hi Joanne,

It is difficult to say what is and is not "routine" because every patient is different and what really matters is that your mother is now getting the treatment that she needs.

That being said, it isn't unusual for doctors to order a whole battery of tests when confronted with a new patient just to make sure that they have not missed anything. That may be particularly true in your mother's case where the hospital doctors clearly realize that things have been missed in the past.

So, at this stage I tend to think that the more tests the better.

I really hesitated about bringing up the next point, because I do not want to worry you needlessly, but on reflection I think that it is something that needs to be said. It sounds from your description as if your mum is on her own now and that you are really the only person who is there to help her through this. You haven't mentioned where you live (although I suspect that it may be in the UK) - if you were in the US I would encourage you to have your mother complete an advance health care directive and a power of attorney that would enable you to make health care decisions for her and to manage her affairs in the event that she ever became incapacitated - I don't know what the law is in the UK regarding making health care decisions for sick relatives and I don't know what the equivalent documents would be, but I think that this is something that you should look into and discuss with her. I realize that it is upsetting to have to think about things like this at a time when all you want is for your mum to get better, and I am not suggesting that it is not going to happen, but take this incident as a wake-up call that these are things that you *might* need some time in the (hopefully) distant future.

Good luck and best wishes to your mum, hoping for a speedy recovery.

 


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