Phobia about doing lab tests!

[Athena]

Well the familiar cat and mouse game has started. My Neph is now nervously waiting for me to actually get to the pathology office and actually get my blood drawn for analysis!!! I've been stalling since the end of January. The truth is - I am TERRIFIED. I just don't want to know. I am therefore procrastinating & delaying it. Usually they need to be done once every 3 months but I was sick in hospital in Dec & Jan & he wants to know which way I'm heading. All I know is is that I feel quite well and that is all I'm interested in knowing 

Does this perhaps sound a bit familiar to others?? Monday is the D-Day though. Another doc will need the results on Tuesday to make a decision about another medical problem I have. My Neph might call the mental health paramedics if I continue to avoid doing my labs!

I've got one more day left in the weekend to enjoy myself in the meantime 

[kristina]

Dear Athena,
please have those lab-tests done as soon as possible because any further delay
does not assist you (or your doctor) to know where you are standing
with your kidney function and how your body deals with it all ...
Please feel assured that I keep my fingers crossed for you and I send you
my wishes and good luck from Kristina.

[MooseMom]

Athena, I lived like that for 8 very long years.  I know exactly how you are feeling, and I wish I had just the right words to allay your fears, but I don't.  Furthermore, I'd be a hypocrite if I were to tell you not to worry, etc etc because I felt so anxious about getting my labs done that my neph prescribed an anti-anxiety med to take during the week between the day the labs were taken and the day I'd see him for results.  I rarely had to use it, but sometimes I did.

That said, I never once put it off because I understood the importance of it.  It was critical to keep an eye on potassium and phosphorus.  I reasoned that if these numbers were not great, there were things we could do to get them back into normal range.

I never felt unwell during those 8 years which, in a way, made the anxiety worse.  I would never have any clue as to what my labs might reveal, which, I suppose, is another reason why labs are so important.  You may have a real problem...a correctable problem...of which you are unaware and could really harm you if you didn't know about it and address it.

Good luck to you.  Enjoy your weekend!

[Sue]

  haha Athena this sounds so familiar ! I too dread each blood test and was due to have mine at the beginning of the month. I too have simply got to get it done on Monday as I have an apt with my urologist next week.
Have a good weekend and good luck with the labs !

[Athena]

Athena, I lived like that for 8 very long years.  I know exactly how you are feeling, and I wish I had just the right words to allay your fears, but I don't.  Furthermore, I'd be a hypocrite if I were to tell you not to worry, etc etc because I felt so anxious about getting my labs done that my neph prescribed an anti-anxiety med to take during the week between the day the labs were taken and the day I'd see him for results.  I rarely had to use it, but sometimes I did.

That said, I never once put it off because I understood the importance of it.  It was critical to keep an eye on potassium and phosphorus.  I reasoned that if these numbers were not great, there were things we could do to get them back into normal range.

I never felt unwell during those 8 years which, in a way, made the anxiety worse.  I would never have any clue as to what my labs might reveal, which, I suppose, is another reason why labs are so important.  You may have a real problem...a correctable problem...of which you are unaware and could really harm you if you didn't know about it and address it.

Good luck to you.  Enjoy your weekend!

Thank you Moosemum for your wise advice. Yes, there are things to look out for. In my case there was recent abnormal changes to sodium and bicarbonate levels - both were too low. Well tomorrow is the day. It's going to be a horrible week. If however, my labs turn out to be better than expected - then I will of course have a good week!

My weekend at least was great.

 

[Athena]

Kristine and Sue, thank you for your encouraging words of advice. It's sure a scary disease to have to deal with. Just endless hopelessness and looks of silent depression in the faces of docs and nurses.  We seem to really 'pick up' the thoughts of others when dealing with them. As well as the silly offhand comments that people can make sometimes.

I really hate this disease with a passion.

[Charlie B53]

With me, the fear isn't really at all about the labs, it is the needle stick.  I've had such a phobia of needles since about aged 6.  It used to be so bad that sometimes I would actualloy pass out.  My veins would actually tighten up and roll away from the needle so bad, often the Nurse woulld be repeatedly 'poking' the needle around in my arm in attempt to get the vein.

It has been hell.

Somewhere in the '80's I learned about the little 'butterfly' they can use instead of the huge spick and tube arrangement.  Since then that little needle just slides right into one of the small surface veins and all's well.  It has made a tremendous difference in my anxiety levels everytime I have to have labs.

If the little needle stick is still a problem they have a lidocaine prep to numb the skin, further reducing any feeling.

So you really are not alone in your lab fears, there are an awful lot of us in the same situation.  Some of us have found ways to cope.  Most just take time to become accustomed.

My Neph has labs on me every month.  Our diet greatly effects our mineral balance so we NEED those numbers every month, too far off either way is not a good thing, possibly leading to irregular heartbeat or even death.  So please understand the importance of labs.

MooseMom's occasional use of an anxiety medical is also a great idea, take to your team about it.

[Athena]

It has been hell.


MooseMom's occasional use of an anxiety medical is also a great idea, take to your team about it.

Charlie, you've nailed it perfectly when you say that. Fortunately for me, I'm accustomed to needles by now as I am a long term Type 1 diabetic on insulin. But I know what you mean with the big needles in the veins. For a long time, I was also very phobic. Now I just look at them as they do it! CKD has totally removed that old fear.

As for the anti-anxiety med, I've tried Xanax in the past and did not feel that it did much for me. The first time I tried it it was like popping a sleeping pill. I went to take a nap. With my Ambien at night, it seemed to give me horrible nightmares. So I only take Ambien for sleep. My GP once recommended trying Valium for short periods if the anxiety gets too much. That might be something I could try.

I did my labs this afternoon & they said they'll have them ready tomorrow. I'll probably need some extra Ambien tonight!

[Athena]

Athena, I lived like that for 8 very long years.  I know exactly how you are feeling, and I wish I had just the right words to allay your fears, but I don't.  Furthermore, I'd be a hypocrite if I were to tell you not to worry, etc etc because I felt so anxious about getting my labs done that my neph prescribed an anti-anxiety med to take during the week between the day the labs were taken and the day I'd see him for results.  I rarely had to use it, but sometimes I did.

Moosemum, I had my labs done today and tomorrow I will find out the results. And will be seeing a Ob/Gyn tomorrow who will judge what treatment I need based on these results (I'm currently on hormonal therapy for a "female problem", which lead me to falling quite ill in Dec & Jan from a similar hormone drug. Everyone wants to see how I am responding to the new lower does hormone therapy  now). I may need surgery to get rid of the hormone drug altogether if my serum creatinine/BUN levels are not back to baseline levels. My Neph is very critical of the whole hormone drug thing but he cannot prove that the hormone drug had caused my electrolyte imbalance a few months ago, even though he strongly believes it did. It's such a huge controversy and mess. I am thankful that I have such a dedicated Neph who is really investigating this. My other Neph on the other hand does not believe the hormone drug was responsible for my severe electrolyte imbalance.

I just feel like crawling under a rock somewhere. But I have to get through this night and then deal with the music tomorrow.

I only have Ambien for sleep. I will need a good dose tonight. As long as I get enough sleep, I can face tomorrow in a much better way.

[MooseMom]

Athena, this story may not be useful to you, but just in case it may be, I'll tell it.

Despite my severe CKD, I never had to be treated for anemia EXCEPT for when I started having "female problems".  I suspect that I was going through perimenopause, and I began a period of bleeding that, as time passed, became more severe and did not show any signs of stopping.

My labs began to show that I was growing anemic to the point where I had to begin epo shots.  I don't mind needles, but the idea of having to give myself epo shots just didn't go down well, so my neph's nurse would kindly fit me in to give them to me.

I was put on high doses of hormones to stop the bleeding.  Obviously, I couldn't go on like that forever.  Apart from the bleeding, it was discovered that I had cystic ovaries, so total hysterectomy here we come.  And yes, I had to have the "big cut" across the belly, through my Caesarean scar.

Long story short, my health improved dramatically after that.  No more anemia, no more epo shots, no more side effects from hormonal therapy.  I would never recommend surgery unless there was no other solution available, and for me, that was the case.  I really do hope that a lower hormone dose will work for you. 

Xanax was the anti-anxiety med I took.  It worked for me, but perhaps that was just a placebo effect!  I hope you can get through the next few days with a lighter heart!  Good luck to you, and do come back and tell us what you find out!   

[Deanne]

You can do this! 

I know the anticipation is awful, but I suspect you'll feel a huge load lifted from you as soon as you get it done. No one can promise you the results will be great, but maybe they'll be better than what you're thinking about. For me at least, taking action usually alleviates anxiety. 

[Charlie B53]

Dau goes in early a.m. for hesterictomy.  She's had too many problems for far too many years.  It's time.  Of course she's scared spitless, who wouldn't be?  They gave her something to 'pre-medicate' her for the last couple of days, and tonight.  Gramma and I will be getting up very early and going, just so we can hurry up and wait.  That's the part I hate, the waiting.  I expect her to be fine.  Some pain and tenderness for a while, but months from now I'm hoping she will agree that this is the best thing for her.

[Athena]

Athena, this story may not be useful to you, but just in case it may be, I'll tell it.

Despite my severe CKD, I never had to be treated for anemia EXCEPT for when I started having "female problems".  I suspect that I was going through perimenopause, and I began a period of bleeding that, as time passed, became more severe and did not show any signs of stopping.

My labs began to show that I was growing anemic to the point where I had to begin epo shots.  I don't mind needles, but the idea of having to give myself epo shots just didn't go down well, so my neph's nurse would kindly fit me in to give them to me.

I was put on high doses of hormones to stop the bleeding.  Obviously, I couldn't go on like that forever.  Apart from the bleeding, it was discovered that I had cystic ovaries, so total hysterectomy here we come.  And yes, I had to have the "big cut" across the belly, through my Caesarean scar.

Long story short, my health improved dramatically after that.  No more anemia, no more epo shots, no more side effects from hormonal therapy.  I would never recommend surgery unless there was no other solution available, and for me, that was the case.  I really do hope that a lower hormone dose will work for you. 

Xanax was the anti-anxiety med I took.  It worked for me, but perhaps that was just a placebo effect!  I hope you can get through the next few days with a lighter heart!  Good luck to you, and do come back and tell us what you find out!   

Moosemum, your story was not just useful to me but also remarkably uncanny! The female problem I have referred to is exactly what you've experienced in the past. Heavy bleeding issues and being put on high doses of a hormone drug (progesterone) to control it. It controlled the bleeding issue alright but has come with enormous costs to my health in terms of adverse reactions - sudden dangerously low blood sodium levels, general electrolyte imbalance, a strange rash, followed by skyrocketing serum creatinine levels! I've been living in fear ever since early January. In late Jan my serum creatinine levels were checked and found to be very high (Stage 4 level) and I was forced to discontinue the hormone then.

My primary Neph is now extremely distrustful of any progesterone hormonal treatment for me. In early Jan, I was fitted with a low dose progesterone releasing IUD, which when added to the high oral progesterone I was taking at the time - just made me violently ill. Neph believes that the progesterone has lead to worsening kidney function results but this is an unproven link in medical knowledge so he can't prove it. He is basing his suspicions on how he found me when I was in hospital. My Neph is as frustrated as I am about what has happened to me.

Today, I saw the Gynaecologist but my latest labs were unfortunately not available for this meeting. I should get them tomorrow. However, because the strange rash that I have is only spreading (called "autoimmune progesterone dermatitis), we have concluded that the progesterone releasing IUD I currently have is creating undesirable systemic effects (that's even without knowing my current kidney lab results!!), and so I am now going to have a minor surgical procedure next month called an endometrial ablation. This is a far less invasive and less riskier procedure than a hysterectomy. It will require general anaesthesia and one week of antibiotics (doxycycline).

I only hope my kidney results have returned to "normal' (Stage 3 levels).

[iolaire]

(I see you removed part of your post as I responded.  I'll still make the comment but not quote you.)  Not giving access to lab results seemed very sketchy to me so I goggled it a bit and it looks like now in the US they changed the rules so by rule/law they need to provide them
http://e-patients.net/archives/2014/02/patients-to-have-right-to-access-lab-test-result-data.html  (I don't know what this site is, but it links to official .gov sites with the rules)
What exact changes were made to the regs? This was a surgical strike. The Clinical Laboratory Improvement Amendments (CLIA) regulations were revised to permit labs to provide results to patients, and the HIPAA regulations were revised to eliminate lab test results from the (very short) list of records not covered by HIPAA’s patient access rule. Thus, if a patient asks, CLIA permits and HIPAA requires that a lab provide the results... Under HIPAA, health care providers have up to 30 days to respond to patient requests for health care records, and freestanding labs will now join imaging centers, physician offices, hospitals, clinics and other providers in complying with this requirement. Labs, like other providers, may charge patients for the cost of providing records.

Also looks like CAN has the same rules, see last item on this page: http://www.mbc.ca.gov/Consumers/Complaints/Complaints_FAQ/Practices_and_Protocols_FAQ.aspx

Final edit: additionally if getting tests is hard for you, then you should always have copies of your lab results for the next doctor just incase you can skip another round of tests.  Finally can you get one doctor to coordinate the lab orders so you get one larger set of labs at a time so that you don't have to go in for each specialist (to minimize the lab appointments)?

[Athena]

Thanks Iolaire. I omitted the bit about my second Neph checking my results but not revealing them to me because I just thought it wasn't as relevant to my story. The reason why this Neph did this I think is because he could see that I was deeply traumatised by my hospitalisation for hyponatremia & wanted to avoid me stressing about any new results. I will be seeing him in April, shortly before my surgery is scheduled (22 April) and will have a word to him about this. I will ask for a printout of those results.

I must say, much as I don't condone withdrawing any results from a patient, at the time it did have a psychologically therapeutic effect! One of the side effects of that hormone drug I was on, was severe depression & anxiety and being in this horrible hospital for 5 days sure didn't help the anxiety levels.

But I am back to my normal self now.

Thanks again for your post.

[MooseMom]

Athena, I was thinking of you last night and was wondering if an ablation might be a good solution for you, and lo and behold, it looks like you might be looking at that procedure after all.

It looks like it has been established that hormone therapy, while it can work for many women, is just not right for you.  Hormone therapy SOUNDS innocuous, but it is not.  Like all drugs, hormones can cause havoc.

I had a hysterectomy because my gyn was more concerned about the cysts on my ovaries, otherwise I would have considered an ablation.  I hope this works for you!!

[Athena]

Athena, I was thinking of you last night and was wondering if an ablation might be a good solution for you, and lo and behold, it looks like you might be looking at that procedure after all.

It looks like it has been established that hormone therapy, while it can work for many women, is just not right for you.  Hormone therapy SOUNDS innocuous, but it is not.  Like all drugs, hormones can cause havoc.

I had a hysterectomy because my gyn was more concerned about the cysts on my ovaries, otherwise I would have considered an ablation.  I hope this works for you!!

Moosemum, how true everything you have written actually is! I will never look at hormones ever again in the same light. Hormones are in fact just drugs. And just like any drug, they can cause severe reactions! I was on the high oral dose for too long.

Fortunately my ovaries are in good condition, but I do however have several fibroids, one becoming a little bit on the large side. Menopause is about 2 years away or so, so the recommended advice from my Gyn is to just leave them alone & wait for eventual menopause to naturally shrink them away.

The ablation has far less risk than a hysterectomy BUT I am still quite nervous about it. Destroying the lining of the uterus sounds like a much bigger deal than what root canal therapy was. There will 7 days in total of needing to be on an antibiotic - 2 days prior and 5 days after procedure. I'm going to have a good heart to heart chat with my Neph about this particular type of antibiotic (a tetracycline called doxycycline). When I enquired with my Gyn about painkillers, he seemed to not quite understand why I would be against any NSAIDs ... He just brushed it off telling me he will make sure I will be kept comfortable and safe ...

One sure does need a good strong Neph advocate at times like these! Other medical professionals seem to know very little about CKD and the real risks that exists for us. It's an eternal battle it seems.

Moosemum, you sure sound like you've been through a lot yourself. Nothing like speaking to someone with actual hard experience. Thank you for thinking of me

[Athena]

Just an update on my results. No update. I saw my retinal ophthalmologist today for an eye examination and as I was driving home on the highway, I saw that my Neph had tried to reach me on my cell phone. I was feeling stressed and tired from today's long drawn out clinic appointment and I sure felt a lot of dread when I saw my Neph's missed call. He didn't leave a message. After a few minutes on the slow highway, I called him back but he didn't answer. I tried a few more times, but no answer. Hos office had already closed.

So no results today. Tomorrow is the dreadful day of finding out my latest 'death stats'.

Sorry to sound rather melodramatic but that is just how all this is.

[Simon Dog]

What brand clinic do you use (FMC, Davita, etc.).   I know Fresenius has all of their labs available on-line, and the docs can get patients access.    I see my labs at the same time the clinic staff does.

[Athena]

Simon, I am not on dialysis. I am in Stage 3-4 of diabetic nephropathy/CKD.

[MooseMom]

Just an update on my results. No update. I saw my retinal ophthalmologist today for an eye examination and as I was driving home on the highway, I saw that my Neph had tried to reach me on my cell phone. I was feeling stressed and tired from today's long drawn out clinic appointment and I sure felt a lot of dread when I saw my Neph's missed call. He didn't leave a message. After a few minutes on the slow highway, I called him back but he didn't answer. I tried a few more times, but no answer. Hos office had already closed.

So no results today. Tomorrow is the dreadful day of finding out my latest 'death stats'.

Sorry to sound rather melodramatic but that is just how all this is.

Oh, that sucks.  Another day of anxiety and worry.  Ugh.    Makes my stomach turn just thinking about it.

Athena, I had fibroids for quite a few years that didn't give me much bother, any the advice given to me was the same as you received...just leave them alone, and natural menopause will take care of them.  Well, nature decided to play around with me, so ablation wasn't really an option.  I wish it had been, but I got through it all OK, and you will, too.  I believe that the protocol for pre/post surgery antibiotics is pretty standard, and the doxycycline is pretty routine stuff, so it shouldn't cause you any problems.  As for painkillers, NSAIDs are OK for a very finite period of time, but I understand why you'd want to avoid them.  Once I got home, I did fine with just Tylenol (and Tylenol did the job for me post tx, too).  Perhaps it could help you, too.

I was really lucky that my gyn was VERY happy to coordinate things with my neph.  I helps so much with docs are willing to speak to one another about a particular patient.

The lab I use (Quest Diagnostics) puts results online if you sign up for the service.  I see my labs before anyone else does, I'm sure, since my tx clinic has hundreds of results to see each day and probably doesn't get to mine for another day or two.  This service wasn't available back when I was predialysis unless you had a smartphone and the Quest app (I have a dumbphone; it's a flip phone that doesn't even have a camera! LOL!  It suits me just fine, and I have no need for any data plan.), so I am well versed in the agony of waiting for phone calls or appointments to get results.  Again, my stomach is lurching as I type this; I remember those feelings all too well.  So please find out if you can sign up and access your results online.  That has saved me SO much worry!

"Death stats"...that made me laugh in a macabre sort of way.  I can relate.  Ugh.

[Charlie B53]

I thought NSAID's were a big No-No for kidney patients as they cause further loading of the kidney, possibly accelerating damage and failure.

Dr's won't even oder me traditional narcotic pain meds.  Aceteminiphen, Tramadol, and Fentenyal are all they tell me is safe to used to preserve what little remaining function I have.

[MooseMom]

I thought NSAID's were a big No-No for kidney patients as they cause further loading of the kidney, possibly accelerating damage and failure.

Dr's won't even oder me traditional narcotic pain meds.  Aceteminiphen, Tramadol, and Fentenyal are all they tell me is safe to used to preserve what little remaining function I have.

It is true that NSAIDs are contraindicated for kidney patients in the long term, but for acute pain and on a one-off basis, it is OK.  HOWEVER, it is up to the doctor to make this suggestion, so Athena, discuss this with your doctor!!!

A month or so after my fistula was created, I suddenly experienced a great deal of pain.  I phoned the vascular surgeon's office and spoke with his nurse.  She told me it would be OK to take one dose of an NSAID to get the pain back to a bearable level and then to continue with Tylenol.  That's the only time I've taken an NSAID since 2004, and I would not have taken it without being specifically told to do so on this one occasion.

Controlling pain after any sort of procedure is important.  It is important to have a discussion with all docs concerned about which one is right for you, Athena.  And it is important to remember that a gyne is not an expert on renal issues just as a neph is not an expert on gyne issues.

[Athena]

I thought NSAID's were a big No-No for kidney patients as they cause further loading of the kidney, possibly accelerating damage and failure.

Dr's won't even oder me traditional narcotic pain meds.  Aceteminiphen, Tramadol, and Fentenyal are all they tell me is safe to used to preserve what little remaining function I have.

Thanks for this feedback  Charlie, I appreciate it.

Pain is a terrible thing to have to contemplate and I sure hope I don't have too much of it, outside of the actual surgery/general anaesthesia timeframes. I did have major surgery 7 years ago with this same surgeon (to remove large fibroids & preserve the womb) & there wasn't really too much pain but they did give me oxycontin and morphine on a routine basis for a day or so after the surgery. I actually asked for them to stop the pain relief after the second day, and I was right in my hunch that it wasn't needed.

However, this was all prior to be being diagnosed with kidney issues - my complications from diabetes started emerging soon after that major surgery.

I now have to be extra careful with all painkiller drugs. I hope that, if needed, some extra paracetamol, may be sufficient instead of a NSAID. I really know very little about painkiller drugs. I will have to do some really good research over the coming weeks. At this stage all I know is that if I can avoid NSAIDs, I will do very well.

[Athena]

OMG - I spoke to the Neph today over the phone and he couldn't access the results to give them to me, his computer was down!!!!!! All I got was that my serum creatinine was a bit down (still not back to my 'normal' Stage 3b levels) and that my Hg was a healthy 13 point something (thank you EPO injections!). I will get the full results tomorrow. How much agony can someone go through???

My Neph is happy to see the creatinine levels going down for a change & that was the main message. He couldn't remember the BUN or anything that was alarming. It seemed to put me out of my misery today. I've been quite sick and it seems that I have some reason to hope that my creatinine levels may reduce even more once all progesterone hormone is eliminated out of my system (we need to have reason to hope!).

I will definitely look into getting my lab results directly rather than than going through a doctor to get them. I am in Australia so I will have to investigate how it can be done here. I believe my Neph can simply order the results to come in the mail once they're completed or it may even be online. Must look into this! (You won't believe it but my Neph once had me investigated for cancer and I had to wait 5 days after the results were in to have him call me to reveal them to me! It was an unforgivable atrocity yet I have moved on from that experience and am still with him. It did help that the result was negative for cancer of course!).