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Author Topic: Sudden lack of communication  (Read 3558 times)

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Offline wolfter

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Sudden lack of communication
« on: September 14, 2011, 01:59:08 PM »
I constantly rave about my doctor and I still believe in his abilities but am concerned that he might be keeping something from me until our appointment in person.  If he is, I guess I understand but I'd like to think that I've dealt with this issue long enough that I'd be able to accept and deal with any issues that arise.

This Spring, I had the anal surgery and I've yet to have the complete results discussed with me.  I know it was high grade neoplasia and the surgeon wouldn't discuss the pathology results with me but instead referred me back to my ID doctor to review the findings.  My doctor didn't receive the reports even after repeated requests until just before we left for Seattle. 

Now the part I'm concerned about;  in August, my doctor ordered labs (which weren't due) and I thought no big deal.  A few days later, his nurse called and said I needed to have the labs redone.  OK, not a biggy.  Then they contacted me and wanted to schedule another scope.  I refused and said we'd wait until after Seattle.  My doctor scheduled a regular visit with him for the end of this month.  I was given my lab orders which I  recently had drawn. 

Today, I received a letter and new lab orders from my doctor.  It simply stated that he was requesting additional tests and there were almost 2 full pages of orders.  I sent him a email asking for some clarifications on what's happening and what he suspects.  I guess I'll be patient but I'd rather know what he suspects than be in the dark.  This just seems strange to me. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline newt

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Re: Sudden lack of communication
« Reply #1 on: September 14, 2011, 05:47:27 PM »
It may be a question of style, but personally I wouldn't be happy with it.

- matt
"The object is to be a well patient, not a good patient"

Offline Theyer

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Re: Sudden lack of communication
« Reply #2 on: September 16, 2011, 05:15:35 AM »
May be may be not.
It could be a lack off communication on what the lab requirements are after your particular op.
Either way you have been feeling OK yes?
I hate these periods, trying to second guess, heres to it being cleared up soon
Take care theyer


ed---spleling
« Last Edit: September 16, 2011, 05:17:06 AM by Theyer »
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Sudden lack of communication
« Reply #3 on: October 03, 2011, 06:43:31 AM »
Talk about a weird situation getting weirder.  My scheduled appt is next Tuesday with my ID doctor.  I rec'd yet another message that I have to have additional blood work done today.  They already sent my orders to my lab.  I've never had this much blood drawn between appointments in all these years.

A host of possibilities have taken over my mind.  Perhaps I spontaneously shed the virus????lol  I'm just concerned they found something and are doubly verifying the results.  I'd assume it's not too serious as I would think he'd contact me immediately.  Back when I was diagnosed with the crypto, he called me late in the evening and ordered me immediately to the hospital.  So, I assume it can't be as bad as all that.

8 days and this mystery shall be solved.  Hopefully, it'llanticlimacticatic!

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline hope_for_a_cure

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Re: Sudden lack of communication
« Reply #4 on: October 03, 2011, 07:13:21 AM »
The communication (or should I say lack of) does seem odd.  You will find out no doubt but it may be a good idea to express your concerns regarding his M.O. face to face with him when you see him next.  I sure hope all is ok buddy.

Offline Hoover

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Re: Sudden lack of communication
« Reply #5 on: October 03, 2011, 10:05:59 AM »
When you go in for the labs, do they at least tell you what the tests are?

Here in CR we get our labs done and take the results to the doctor.
I like knowing my labs before the doctor so I am never hit off guard and have my facts in hand.

Here is to hoping your doctor is just being overly cautious!

Cheers from the island,
Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Jody

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Re: Sudden lack of communication
« Reply #6 on: October 03, 2011, 06:30:08 PM »
Sending good vibes your way Wolfie for good news and good results.  I hate the not knowing and the guess work as well whenever it happens. 

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline wolfter

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Re: Sudden lack of communication
« Reply #7 on: October 04, 2011, 06:59:51 AM »
When you go in for the labs, do they at least tell you what the tests are?

Here in CR we get our labs done and take the results to the doctor.
I like knowing my labs before the doctor so I am never hit off guard and have my facts in hand.

Here is to hoping your doctor is just being overly cautious!

Cheers from the island,
Hoover

This lab won't even release the results, let alone discuss them with the patient.  They upload them to "Webview" that I'm able to see once my doctor receives them. 

I'm only slightly worried because of past medical issues that were misdiagnosed.  Back in the early 90's my liver enzymes skyrocketed and my liver completely shut down causing other organ failures.  I turned a bright orange and was diagnosed with HepB.  It wasn't until 2 years ago that I found out I was correct that I wasn't infected with that virus.  So, I have that lingering question of what actually caused it and if it's something that's been here all along?

It is what it is, but I no longer blindly accept anything the medical community tells me.   Even when I see the lab results, I don't know what most of them are.  I understand the primary ones, but am still learning the others.

Thanks for the kind words all.

Wolfie

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline bocker3

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Re: Sudden lack of communication
« Reply #8 on: October 04, 2011, 07:33:27 AM »
It is what it is, but I no longer blindly accept anything the medical community tells me.   Even when I see the lab results, I don't know what most of them are.  I understand the primary ones, but am still learning the others.

Hey Wolfie,

One would imagine that if anything truly serious was going on, the lab would get the results to the doc pronto and he would call you in or direct you to the emergency immediately.

As for any results -- feel free to PM me with questions.  I haven't worked in the field in a long time, but my B.S. degree is in Laboratory Science.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline skeebo1969

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Re: Sudden lack of communication
« Reply #9 on: October 04, 2011, 07:37:31 AM »

  Hey Wolfie, this is just an idea I came up with:  why not call your doctor and ask him what's up?  If I couldn't call my doctor in such a situation I would be switching doctors with the quickness.  While I do agree with your mindset about not "blindly accepting" what the medical community tells me, your actions regarding the lab tests contradict this thought.  

  

I despise the song Love is in the Air, you should too.

Offline Ann

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Re: Sudden lack of communication
« Reply #10 on: October 04, 2011, 07:45:00 AM »

I'm only slightly worried because of past medical issues that were misdiagnosed.  Back in the early 90's my liver enzymes skyrocketed and my liver completely shut down causing other organ failures.  I turned a bright orange and was diagnosed with HepB.  It wasn't until 2 years ago that I found out I was correct that I wasn't infected with that virus.  So, I have that lingering question of what actually caused it and if it's something that's been here all along?


Have you ever been tested for hep C? Occasionally acute hep C can cause problems like what you experienced. Hep C wasn't discovered and identified until the late '80s and a diagnostic test only became available around '92. It wasn't widely tested for in the early '90s because many doctors weren't very aware of it. If I were you, I'd make sure that I'd been tested for hep C.

Good luck, hope you get this sorted out soon. While I'm used to waiting three months for my regular blood test results, if my doctor were to order tests that were out-of-the-ordinary, I'd be anxious for the results too, for sure. Hang in there!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wolfter

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Re: Sudden lack of communication
« Reply #11 on: October 04, 2011, 07:46:42 AM »
I did contact him when I rec'd the previous request for additional labs.  I initially accepted his answer until I processed it.  I didn't bother when I rec'd this request because I see him in person next week.

His stated concern with the previous additional lab request was he was worried that I hadn't completed eradicated the cryptococcal meningitis.  I'm still researching, but I'm pretty certain that wouldn't be verified with blood work.  I had numerous lumbar punctures while I was sick with that illness.  It's my current understanding that is the only accurate way to test for the fungal infection.  
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline bocker3

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Re: Sudden lack of communication
« Reply #12 on: October 04, 2011, 07:53:00 AM »
I did contact him when I rec'd the previous request for additional labs.  I initially accepted his answer until I processed it.  I didn't bother when I rec'd this request because I see him in person next week.

His stated concern with the previous additional lab request was he was worried that I hadn't completed eradicated the cryptococcal meningitis.  I'm still researching, but I'm pretty certain that wouldn't be verified with blood work.  I had numerous lumbar punctures while I was sick with that illness.  It's my current understanding that is the only accurate way to test for the fungal infection.  

While it might not be "verified" with a blood test -- it can be ruled out with a blood test.  Before doing something as invasive as a LP, I would certainly want my doc to do a screening test first -- especially, if the fear is a subclinical issue.  Ultimately, your doc has to talk with you about what he is concerned with -- in fact, once he has done so, you should probably be very direct with him about how his "secrecy" has affected you.  Insist that he be open -- or tell him that you will be gone.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline wolfter

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Re: Sudden lack of communication
« Reply #13 on: October 04, 2011, 07:53:32 AM »
Have you ever been tested for hep C? Occasionally acute hep C can cause problems like what you experienced. Hep C wasn't discovered and identified until the late '80s and a diagnostic test only became available around '92. It wasn't widely tested for in the early '90s because many doctors weren't very aware of it. If I were you, I'd make sure that I'd been tested for hep C.

Good luck, hope you get this sorted out soon. While I'm used to waiting three months for my regular blood test results, if my doctor were to order tests that were out-of-the-ordinary, I'd be anxious for the results too, for sure. Hang in there!

Thanks Ann, I don't think I've been tested for Hep C.  I'll add that to the list to discuss with him.  I encountered that illness around 91 so it's possible.  I bug him every time I see him trying to figure out what caused that illness since I KNEW it wasn't what I was dianosed with.  Maybe he did order tests to try to solve that.  

Wouldn't it be logical that I'd be over it 20 years later if it didn't kill me?   lol  I've not researched Hep C and only vaguely remember it from nursing school.

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Ann

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Re: Sudden lack of communication
« Reply #14 on: October 04, 2011, 08:22:01 AM »
People can go for years with a chronic, asymptomatic hep C infection. Sometimes it never causes any real problems. So yes, you could have been carrying it for twenty years without knowing.

About 20% of people will clear the virus on their own. You could be one. They would first test for antibodies and if this comes back positive, it doesn't necessarily mean you have an active/chronic infection. You have to have a hcv VL test done to determine if you cleared it on your own or have a chronic infection.

Yesterday, Tim Horn published an updated Hep C Lesson - you might want to read it.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline james3000

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Re: Sudden lack of communication
« Reply #15 on: October 04, 2011, 09:30:10 AM »
Ann is 100% right about Hep c and the length of time can take. I would have thought that the tests for all the hepatitis  would be routine.
Seems that there is some lack of communication from your Doctor ask for a full copy of your medical file and go through all the results they highlight any bad results on the tests.

Offline wolfter

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Re: Sudden lack of communication
« Reply #16 on: October 05, 2011, 06:46:49 PM »
The mystery will be solved quicker than I thought.  Got home from work and there was a message indicating my doc wants to see me tomorrow instead of next week.  At least he didn't order me down there immediately or I'd be worried. 8)

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

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Re: Sudden lack of communication
« Reply #17 on: October 05, 2011, 07:00:24 PM »
The mystery will be solved quicker than I thought.  Got home from work and there was a message indicating my doc wants to see me tomorrow instead of next week.  At least he didn't order me down there immediately or I'd be worried. 8)



Greg, don't worry, it's probably nothing maybe a medication change of some sort, keep us posted on what it is  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: Sudden lack of communication
« Reply #18 on: October 05, 2011, 08:48:51 PM »
keep us posted on what it is 
best wishes, wolfie my friend. if it's appropriate, do let us know
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Ann

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Re: Sudden lack of communication
« Reply #19 on: October 06, 2011, 07:32:08 AM »
Wolf, don't forget to ask about hep C testing. Good luck!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline skeebo1969

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Re: Sudden lack of communication
« Reply #20 on: October 06, 2011, 01:25:35 PM »
The mystery will be solved quicker than I thought.  Got home from work and there was a message indicating my doc wants to see me tomorrow instead of next week.  At least he didn't order me down there immediately or I'd be worried. 8)

Hope everythings ok for ya wolfie...
I despise the song Love is in the Air, you should too.

Offline Bucko

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Re: Sudden lack of communication
« Reply #21 on: October 07, 2011, 04:14:26 AM »
The mystery will be solved quicker than I thought.  Got home from work and there was a message indicating my doc wants to see me tomorrow instead of next week.  At least he didn't order me down there immediately or I'd be worried. 8)



I wish you the best of luck, Wolfie: but even so; I'd be less than pleased with a PCP who chose to limit our interactions to e-mails. I'd have a serious talk with a doc who treated me that way.

We all have choices, right?
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline wolfter

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Re: Sudden lack of communication
« Reply #22 on: October 07, 2011, 09:17:10 AM »
I spent the longest amount of time with a doctor yesterday than I ever have in my entire life.  I guess I'm satisfied with the explanations for now.  He wants additional testing but has to be careful because of insurance guidelines with what they'll cover since going forward will be exploratory in nature.

He readily admits that he doesn't have an explanation and consulted my cardiologist for input.  My heart enzymes came back positive again along with testing positive for the crypto antigen with an added case of reactive CMV.  He performed an EKG in house yesterday that showed nothing abnormal.  BP was perfect and I've had no heart issues of late.  My 2nd myocardial infarction was diagnosed based solely on the enzyme results which I questioned because I had no symptoms.  My first heart attack at age 36 presented with the classic symptoms and I don't question that one.

The blood tests also indicate the presence of the crypto antigen which he is hoping is a false positive.  We didn't get the results back from the latest labs and that's another thing he's concerned about.  My immune system should be strong enough to fight any reoccurrence but if the tests show another positive, more spinal taps!  And possibly start the whole treatment over again.  Depending on the severity, we might be able to skip the Ampotericin (sic) treatment.  I don't want to be in the hospitial again for 22 days receiving infusions.  He's recommending starting immediately on Fluconazole again.  I defered until more data is available. That shit kept me most home bound the entire time I was on it. 

The CMV issue also needs to be looked into further.  My previous cardiologist indicated that virus contributed to my first heart attack.  Again, my doc says my immune system should be strong enough to prevent an active infection. 

We discussed the Hep issue also.  He indicates that I've never had any form of it.  I was inoculated in his office last year for Hep B.  Again, I brought up the issue that I was in the hospital in the early 90's dying from Hep B!  He indicates that couldn't have happened and isn't sure what was actually going on. 

He had me sign some releases because he wants to consult some research experts.  Being a younger doctor, he has only treated 4 cases of crypto because of the rarity of the infection thanks to HAART. 

I'm glad he's taking this serious enough to do further research.  I've always had the nagging feeling my previous doctors didn't get it correct.  I argued with them when they said I had Hep B because of the route of transmission.  I had not participated in any the behaviors that allow for transmission and it even caused a argument at home because the diagnosis indicated that I did something I shouldn't have - which I didn't.

Thanks for all the kind words all.  I guess it's just a waiting game and I'll just continue on.  I'm feeling the best I have in over 2 decades and don't plan on stressing over the unknowns of this situation.  It is what it is even if we don't know what it is....lol

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Ann

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Re: Sudden lack of communication
« Reply #23 on: October 07, 2011, 11:05:45 AM »
But did you specifically discuss hep C? You only mention hep B. They're two very different animals.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wolfter

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Re: Sudden lack of communication
« Reply #24 on: October 07, 2011, 08:36:58 PM »
But did you specifically discuss hep C? You only mention hep B. They're two very different animals.

Sorry.  When I indicated that I never had any form of hepatitis, I should have specified A,B and C.  He tested me for pretty much everything when I became his patient.  There was obviously some underlying illness that caused all more organs to shut down, but it wasn't Hep B.  It will always bug me not knowing exactly what it was and if there's some mysterious organism living within ???

I don't plan on making any rash decisions since I am doing great and am not confident of the need.  Thanks for everyones' input.  My old doctor would refer to this as me being in denial.  I call it making informed decisions and not readily accepting every "guess" that the professionals throw at me. 

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Sudden lack of communication
« Reply #25 on: October 27, 2011, 10:16:19 AM »
I rec'd a call from my doctor's receptionist this morning.  The doctor indicated that I need to follow up with the surgeon for another scope.  Sure wish I could have had the conversation with my doctor but am confident she'll relay exactly what I said.  After 5 months, my doctor finally has rec'd the surgeon's reports although they haven't been put them in the computer for my access.

I simply said I would not agree to any further procedures until the results from the previous surgery were discussed with me.  She indicated the doctor will contact me after reviewing all the reports.  I indicated I will make any follow up appointments AFTER he reviews the reports and consults with me.

The repeated blood tests were because of testing positive for crypto.  He was trying to determine if it was an active infection.  He suggested another lumbar puncture which I immediately rejected. 

W
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

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Re: Sudden lack of communication
« Reply #26 on: October 27, 2011, 11:27:07 AM »
The doctor indicated that I need to follow up with the surgeon for another scope. 
...
The repeated blood tests were because of testing positive for crypto.  He was trying to determine if it was an active infection.  He suggested another lumbar puncture which I immediately rejected. 
this isn't a new doctor, right? It sounds like he barely knows your case. ::)

I had to jump some hoops explaining stuff to my new doc when I moved down here. I mean, me and my old doctor lived through those previous decades, so stuff I thought of as old news was really new for the new doctor. he had wanted all sorts of tests for things I knew the answers to.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Theyer

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Re: Sudden lack of communication
« Reply #27 on: October 27, 2011, 01:51:31 PM »
Good luck with all this Wolfie, as you said you are in the best shape for 2 decades and although your Doc is delegating when you saw him you where satisfied. Building a relationship with a Doc is  work. Over here the good ones are off course in demand and I do cut my doc some slack because 1) his workload is insane and 2) when the chips are down he really goes the extra mile.

Though in no circumstances would I be content with a 5 mouth gap between investigation and discussion.
I do not pick up any denial from what you have written ,you are simply asking for the information you require to make an informed decision.

LP---As I attend a teaching Hospital my experience off lumbar puncture ranges from one off the worst experiences I have ever had to mild discomfort. So I have a rule which I tell them beforehand, they get two attempts then its finished with them and its Dr X whose technique is consistently excellent.
Wishing you all the best
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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