Falling t-cells and lesions on liver - never felt better!

[gemini20]

It's been quite some time since I posted; been trying to get back into the Forums but work and life have been a bit overwhelming so far this year.

I started 2009 on good form having spent a month in Australia for Xmas and New Year. I got back to London and my blood results showed t-cells had climbed to 491 (27%) and still undetectable on my regime of Reyataz/Norvir booster. This was my highest t-cell count for nine years and gave me hope that I would crack 500 on my next results in April.

In early April I experience excruciating pain in my lower back/pelvic region which was so severe I was barely able to move for 2 days, actually thought I was going to wake up paralysed as my mobility was so impaired.

Thankfully with mega doses of ibuprofen I did dull the pain sufficiently to be able to get to my hospital. While the walk-in doctor thought it was just an inflammation of my lower back, an email from me to my HIV doctor led him to suspect possible kidney stones, maybe due to the Reyataz and he requested a scan.

As I had to wait two weeks for an appointment to have the ultrasound, my doctor decided to err on the side of caution and suggested switching meds again so I returned to Prezista/Norvir which had been my regime when I restarted treatment in October 2007.

Bloods taken on the day I switched showed t-cells had actually fallen to 415 though % had risen to 35 and I was still undetectable.

While waiting for the scan I had a period which wasn't due and that made me think that the excruciating pain might actually have been a burst ovarian cyst rather than kidney stones but nonetheless I thought the scan would give me the answers when it eventually happened.

Today I returned to get the full results of the scan plus new blood results after a month of switching drugs.

My t-cells have fallen again and are now at 368 (31%) but still undetectable. I have been 100% compliant with my meds so it's a little disappointing to see numbers falling.

The scan report showed no signs of kidney stones or ovarian cysts but it has identified lesions on my liver.

I wasn't expecting to hear that news and coupled with the falling t-cells I'm beginning to wonder if the relatively good health I've experience through my 18 years of being positive is about to come to an end. I now have to get an appointment for a CT scan of my liver and go back in 6 weeks to see my doctor to find out what I might be dealing with.

If anyone has experienced lesions on their liver and can give me a clue as to what might be going on that would be appreciated.

In the meantime I head off on Sunday for 3 weeks working holiday in Copenhagen so thankfully that will distract me sufficiently from worrying too much about my liver! Despite todays news I've actually been feeling pretty good for the last month so I'll have to remember that when the panic sets in!

Best wishes to all,


Emma

[bear60]

I just want to say HI and hope you continue to have good health.  Its good to hear from you.

Joel

[leatherman]

It's always good to catch a post from you Emma.

Thanks again for remembering me and emailing me a few weeks ago. I just sent off a reply to you since I was waiting to get back my lab results (which came in pretty good for me; but that's in the email, and in a post here, which you can read later) It's May again, so I've already been thinking about you, and the reasons we first chatted - Ian and Randy. I'll say an extra prayer and think extra-happy thoughts for you as you deal with this liver issue.

Much love from me
and the boyz send slurppy kisses too!!

[Robert]

hi em.

sorry I can't help you with your liver issues.  Things have been going pretty good for  you lately.  Maybe this is just another little bump in the road.  Let's hope so.

In the meantime I think a trip to Copenhagen will do you a world of good. 

I really do hope things will be OK.

robert

[aztecan]

Hey Emma,

I have dealt with hepatic steatosis, but never actual lesions on my liver.

I will have you in my thoughts. Please let us know what the doctor says.

HUGS,

Mark

[AlanBama]

Hi Emma, sorry I am so long in seeing this thread and responding.....

I hope this is just "one of those things" that can be treated, and won't be that big a deal.   I have no idea about lesions on the liver, have never had any experience with that.

Please do keep us posted hon.

Love,

Alan

[gemini20]

Thanks everyone for your kind thoughts.

Just checking in from Copenhagen to let you know I have managed to schedule the CT scan for next Friday 29th May. I'm back in London for four days before coming back here for another week's work/holiday and with a bit of gentle persuasion I got the radiography department to fix me an appointment sooner rather than later.

I emailed my HIV doctor today and he said if I contact him after its done he will call me the next day with any news rather than wait til 24th June for our next planned appointment. That makes me feel a whole lot better as I'd be worrying for sure. Hopefully the radiographer will tell me there and then what she/he can see but sometimes health professionals prefer to share with their colleagues rather than the patient.

Anyway I'll post another update next weekend; in the meantime I'm banning myself from Googling 'liver lesions' as its guaranteed to start me thinking the worst!

Cheers,

Emma

[leatherman]

I'm banning myself from Googling

  ROFL
thanks for the update
think "happy" thoughts. The cockers told me to tell you to google images for "puppies" instead 

[AndyArrow]

I'll be keeping you in my thoughts & wishing for good news on the 29th.  Sounds like you've got a really good HIV doctor who cares about your mental well being as well since he knows you'd be worrying the whole time.

Hugs,
AA

[gemini20]

Update:

I flew back from Copenhagen late on Thursday evening (delayed flight – thanks Easyjet) and eventually got home about 1.30am and crashed after a quick bath as I knew I had to be at the hospital for 10.00am the following morning.

Unfortunately around 3.00am I awoke with crippling stomach pains, the sort that make you cry out in pain (and I have a very high pain threshold); I tossed and turned in bed for nearly two hours and when the vomiting started I realised that I might have a problem!

Ended up waking my friend Robbie who had been staying and we got a taxi to the Accident and Emergency Department. As it was 5.30am I had to wait for about an hour before I saw a doctor. Thankfully as my HIV clinic is attached to this hospital they have a policy that all positive patients who are admitted via A&E are seen by an HIV doctor.

I was still doubled up with pain when I eventually saw her and she suspected I had a bout of colic!

That was a new one for me, never had that before so had no idea what I had been dealing with. I was discharged with anti-spasm drugs and pain killers and told that if I was still feeling unwell after my scan later that morning I should go up to the HIV day care ward.

So Robbie and I headed back home for a couple of hours rest and then back to the hospital again for the CT scan. As usual in these situations I had to drink a litre of water in the hour preceding the scan; unfortunately I managed to vomit the whole litre back before I’d even got into the CT scan room. Fortunately I didn’t have to try and drink the same amount again as they were going to inject me with a dye anyway.

Those doing the scan gave nothing away but to be honest I was still feeling so awful after my escapade in the early hours that all I wanted to do afterwards was get back home and sleep.

The upshot was my doctor emailed on Sunday to say that everything appeared normal and we could discuss things further when I see him on 24th June. That is reassuring but then begs the question what had the ultrasound doctor seen which got described as ‘lesions’.

Anyway a good couple of days rest and I returned to Copenhagen on Monday evening and have another week here before returning to a week of school talks starting next Tuesday.

Happy that this little episode is now over and hopefully I won’t be having ultrasounds or scans again for a very long time.

Emma

[leatherman]

what's going on with you Emma? first all that good news with the mandela org, then talking about pain and lesions; then feeling better, now more pains. And a trip to ER! that's never a fun time in any country I would imagine. LOL You know I worry about you.  I'll think an extra dose of good thoughts your way. Keep us informed!

mikie

ps i noticed the announcement in alan's bday thread. are you sure none of your pains are just age-related? ROFL Sorry, sorry. I know you can't be having any age-related pains since you're only turning 24 this year. right?   

[Jeffreyj]

Hey Emma,
So sorry to hear of these weird and painful episodes. I wish I could give you some answers but I can't.
Just wanted you to know that I'm thinking about you. And worried as well.

I hope everything goes well. After all, us Geminis are tough people even if we are getting older!
Love you lots, please keep us posted if you can.
Jeff

[Jeffreyj]

Emma,
It's the 24th of June....I was just thinking about you. You are in my thoughts and I hope things go well. Sometimes things aren't as bad as they may seem. I hope today that's the deal here.
Love and a huge cyber hug!
Jeff