Update-Initial Labs are back-Have me a bit stressed

[TLD412]

So just yesterday I got my first cd4 labs back and to be honest I expected low #'s but the count was 20. I'm not going to lie that was not what I was expecting. I haven't presented with any of the main OI's although I have had weight loss and skin problems. I was expecting below the technical "AIDS" line but that number I really just can't get over it.

I am a bit of a worry wart and I'm doing my best to accept it and just get the ball rolling to get better but it just doesn't feel like it is going fast enough. I got the results via the quest app on my phone and waited and waited for my ID doc to call me but he didn't. So I ended calling his office and had to speak with the nurse because he wasn't there. When I told her my results she seemed surprised lol. I mean I thought that they would receive them as I did. Anyways I told her that with this being how it is was it
necessary to keep my next appt scheduled 6-weeks out because that seemed like a very long time. I mean the doc did the confirmatory test, a cd4 count, and a viral load which has not come back yet. Even though he did all these he has yet to do a genome test which I know can take the longest. The nurse sd that she would relay him a message and see what he would like to do and we would go from there. I'm really hoping for a call back today. Fingers Crossed

If no call back though I have been looking into going to a different doctor. He is considered more of a specialist I believe but is in Houston which is about a hour and a half away. I used to think it would be more convenient to be closer to home but honestly I believe my life and sanity is worth the hour or so drive every month or few if that's what it takes lol.

My primary concern at this moment is just getting an infection somehow. I do not want one before I get prescribed my hiv regimen.  I have a work conference this upcoming beginning of the week so that has me a bit paranoid about encountering some contagion. Planes are such close quarters!

Oh well I know that stressing isn't going to accomplish anything so I'm just going to have a lot of "wooosahhh" moments. It just felt nice to vent and get it out there. I keep going back to what a member has said in this group several times that I've seen, "how did you feel five minutes before you got those numbers?" This is very true. Really I am the same and was less worried earlier while not knowing. It's amazing how anxiety can magnify all your feelings lol. Oh well, I'm going to do what I have to do get past this.

We will prevail!

[AusShep]

I hope you hear back from your doctor today. I'd think he would want to put you on preventative meds and get a blood draw for resistance testing ASAP.

[mecch]

Sorry about the immune response. But good you know. Continue to be pro-active.
I previously asked about the GP - do you have a doctor in town you have seen over the years? If so, where is he/she in this followup? If the specialist has such a tight schedule, does the GP?
If you don't hear from the Specialist today or tomorrow, you should see a GP ASAP and or call the Specialist and insist that you are coming in for a walk in and followup, next week.  Enough is enough.

[vertigo]

In addition to VL, you're also still waiting on the Western Blot, correct?

Also, is it your absolute CD4 count that is 20, or is that the percentage?

(I don't know how familiar you are with the labs, which is one reason why patients normally receive the results from their doctors, and not independently.)

Either way, you need to get engaged in better care, either thru your GP or HIV specialist.  Personally, I would be thinking of making the drive to Houston.

Good luck and keep us posted.

[TLD412]

End of day update: I ended up speaking to the doctor's nurse who finally got the message to them. After she spoke with him she called me back and said that they were going to call in a prophylactic prescription to my local pharmacy. They ended up calling in Bactrim which I've seen mentioned a lot in these threads. While speaking with her I asked about my appointment and she didn't mention anything about changing it. I brought up the genome test and told her basically that I wanna go ahead and go forward with that because it seems idiotic to wait a month to go for a visit to have to wait another month to discuss treatment. She said she was going to talk to the doctor and get back with me and see if she could go ahead and place the lab order, apparently he has been out of the office. I mean I hate to seem like a pest but if cracking the whip is what I'm going to have to do then that's what I'll do.

Response to Mecch I do have a primary doctor that I see for basic things. They are who sent me to the gi who in turn sent me here. If this office can't gets its ducks in a row fast I will be contacting my pcp and seeing about getting into a different doctor in Houston!

Vertigo thanks for your reply in reference to the Western Blot yes it has been confirmed. The 20 count is my absolute count and my percentage is 3% which is pretty low lol. But I know I can rebound once I start treatment.

Oh well I'm gonna do what I have to do lol. Houston is definitely on my mind. I just hate everything being a long process.

[zach]

any reason you can't ask your GP for a genome test, results to made available to your ID Dr upon his return. that would make your next appt with him more productive and move up the timeline to arv's

blood can be drawn anywhere, sent out to the lab, and results disseminated

[mecch]

I mean I hate to seem like a pest but if cracking the whip is what I'm going to have to do then that's what I'll do.

You are not a pest. The truth is, the squeaky wheel gets the grease.  I learned in life to be insistent about such matters AND to be polite doing so because the bureaucracies, and individual people, in fact usually have zero negative intent to me, and / or, the standard processes are out of their control often enough. So the politeness is key.  In a nutshell "please give me the service I need and you provide. Please. And thank you kindly. I very much appreciate it. You've helped a lot, thanks again."

[TLD412]

Update on the update lol. Sorry for delay in posting but has been hectic week. Work, work, and some more well work. Anyways I'm kind of starting to believe that I've been harassing the poor girl at my doc's office for no reason. I say this because I picked up the lab request order form and it was actually dated and time stamped for my last appointment visit.  It had all the tests listed there but I didn't recall seeing them last time.

Hmmm well what had me really lost I suppose is of course my obsessive nerves and the fact that on the MyQuest app they do not show the full lab order rather just the results whenever they are done. So if one test is still processing you are unable to see it being ran. So this whole time I think the tests have actually been ordered when I'm calling her everyday to get them lol! Oopsieee 😁. My viral results actually came in earlier in week and they are as follows: 90,843 copies/ml and the log is 4.96%.

I'm not discouraged by these so I'm looking forward to getting on meds and dropping that considerably. Now I guess I'm just waiting for the genotype test from that order to come back, it hasn't yet. I'll probably wonder if it was ran until it comes back but I don't wanna do same test multiple times if not necessary!!!! Anyways taking it one day at a time. I did however get a prophylactic, bactrim, so I'm glad with that and the tests things are lining up. Breathe in, breathe out!

Thanks guys.