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Author Topic: Going for an MRI  (Read 12131 times)
willowtreewren
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« on: May 15, 2012, 04:18:12 PM »

I have been having a bit of a hard time and haven't been posting much lately.

I thought I had Lyme disease in April, but it turned out to be a different tick borne disease. It was pretty bad and I missed a couple of weeks of school and was pretty weak. I passed out a couple of times and hit my head.

Well, I don't know if what I'm going through is related or not. but here it is.

I have had a pretty bad head ache that is located on the side of my head that I hit pretty much. I have trouble talking. I often cannot think of what word I want to say. And when I try to talk it makes my head hurt really, really badly! Like a super migraine. Ouch. Typing is easier, but gets to me after a while. I have trouble coming up with words then, too, but no one realizes because I can take time....

I cannot be in the classroom to teach because the noise of the children talking is more than my head can stand. I do chores in the office to help out. And after the children go outside or go into the lunch room I do things in the classroom to prepare for them. It is isn't much, but it is a little help. I feel so useless.

I can't drive. My husband has to take off to drive me to all my appointments.

One of the medications I am taking is causing depression (as if I don't already have enough reason to be depressed!) I find myself crying at the most inopportune times!

So, I have had a head ache since I whacked my head on April 3. It got worse after I had three teeth pulled on April 26. I go in for my MRI on May 18, but I don't see the neurologist until June 7. I was originally scheduled for June 14, but after an hour of calling all over two cities (and crying) I finally found a neurologist who would review my MRI sooner than June 14! I don't think I can maintain my sanity with this kind of pain for another month! Three weeks will be enough of a stretch.

So, I apologize for whining, and not being there to cheer folks on as much as usual. EVen typing this much has been a stretch. I'm pretty scared about the whole thing. I told Carl that if anything happens to me he has to get on FaceBook and post.I'm not planning on that, but you never know.  He would have no clue about how to come on IHD and post, though.  :bow;

I still try to come on a read the treads and welcome folks, but that is getting pretty hard to do, too. So, unti I get back on my feet, I'll probably be pretty quiet.

Aleta

PS I was very annoyed by the Hello/Goodbye thread and that is what prompted me to take the time to write this. Goodness. I can't imagine surviving some of what we have all been through.....
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Joe
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« Reply #1 on: May 15, 2012, 05:06:07 PM »

Sorry to hear that Aleta, thoughts and prayers your way. I can relate with your reaching for the right word to say, I had that really hit me last month when I was presenting at a conference. I couldn't get the right word out to save my soul. And I haven't hit my head. I'm not sure, but I'm afraid it has something to do with our renal condition.

Again, take care and visit when you can.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
jeannea
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« Reply #2 on: May 15, 2012, 05:21:27 PM »

That all sounds really rough. Take care of yourself. I hope you got a good neurologist.
 :grouphug;
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MooseMom
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« Reply #3 on: May 15, 2012, 06:06:09 PM »

This is very worrying, and I have to admit that I wish you'd go to the ER.  I truly do not think it is safe for you to wait any longer with symptoms such as these.  My apologies if I am being alarmist, and I certainly do not want to add to your stress, but I would feel much better if you got Carl to take you to the ER. :grouphug;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #4 on: May 15, 2012, 06:13:53 PM »

I agree with MooseMom on the ER thing. But I do know that my sister in law has a few tick born illnesses, and at times she feels like her brain is "in a fog" I don't recall from your post what illness you had (I think anaplasmosis right?) and one of the symptoms is confusion. Have they rechecked to see if the treatment is working or did work? I know she's been battling it for quite some time but she has some other complications, like allergy to the antibiotic of choice.
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
AguynamedKim
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« Reply #5 on: May 15, 2012, 09:09:37 PM »

Aleta, I'm so sorry you are having to battle through these other challenges.  While I will miss seeing your posts, please take the time to rest up and focus on getting better.  Don't hesitate for a second to ask for any kind of help.  After all the wonderful support you've given, it's the least your IHD family can do.  I hope your head injury is diagnosed soon and puts you on the road to recovery.  I will say, 3 weeks is an weful long time to suffer and I'm not sure you're in a safe state to do that.  The repeated passing out is surely enough to warrant an ER visit, especially along with the rest of your symptoms.  I sure hope you get well soon.
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Chris
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« Reply #6 on: May 15, 2012, 11:30:52 PM »

No appologies needed , just get well!
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Darthvadar
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« Reply #7 on: May 16, 2012, 12:51:39 AM »

No apologies needed, Aleta....

That's what friends are for...

I'm with the others... When you have your MRI, ask for a disc of it... Then turn up in ER, and get sorted!...

Thinking of, and praying for you....

Love...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Traveller1947
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« Reply #8 on: May 16, 2012, 01:12:52 AM »

I'm so sorry all this is happening to you , Aleta.  It seems too long to wait until June 7 to have some answers.  Your symptoms are alarming and warrant a visit to the ER.  Please do that right away.  I'll be praying for you and keeping you in my thoughts.  All the best to you and Carl.
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paris
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« Reply #9 on: May 16, 2012, 12:55:32 PM »

June 7 is still a ways out --- I know you want answers now.  How can you get anyone to understand this is a STAT case?   Sorry for what you are going through.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
boswife
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us and fam easter 2013

« Reply #10 on: May 16, 2012, 02:16:55 PM »

oh Aleta, this is worrysome and i say go to ER now.  It doesnt seem like a 'wait and see' thing.  We (well hubby) has had to just GO IN at times when the wait could just be dangerious.  I doubt that if it were your hubby yould wait?????? TAke care of yourself as you have him.  I wish you well and saying prayers........ cause thats what 'i' do  ;)  We're all here for you, please get well and w/o hurting yourself, keep in touch...  :cuddle;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Traveller1947
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« Reply #11 on: June 07, 2012, 04:20:17 AM »

Finally, it's June 7!  The day of your appointment with the neurologist...I'll be thinking of you and praying for you, Aleta.  All the best to you.
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WishIKnew
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« Reply #12 on: June 07, 2012, 05:24:45 AM »

Hope things get sorted out today.  Praying for you.
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monrein
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« Reply #13 on: June 07, 2012, 05:46:25 AM »

Oh Aleta, I'm so sorry that you're having such a horrible, rough time and I hope that the MRI can discover a cause that's easily remedied.  Unfair just seems to be everywhere sometimes and you guys need and deserve a period of calm.  I'll be thinking of you and sending my strongest wishes for better times ahead.
Much love to you.   :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
willowtreewren
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« Reply #14 on: June 07, 2012, 06:13:58 AM »

I see the neurologist in a little while.

On May 23 I went back to my primary care doctor and got a new "cocktail" of pain meds that worked pretty well for about a week. Oh, that was a lovely time. Over the past week, they have been wearing off long before the next dose, but at least I can still function. I'm actually eager to see the doc this morning.

I'll let you know what I learn....

 :2thumbsup;

Aleta
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
willowtreewren
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« Reply #15 on: June 07, 2012, 09:48:32 AM »

Well, it is time for an update after seeing the neurologist this morning. I am in for a real ride!

It appears that the spirochetes from the tick bite have settled in the membrane around my brain. You would have thought that 30 days of treatment against them would have been enough! Okay. The inflammation from the little buggers is enough to create pressure that causes the intense headaches. Now for the good part - NOT.

I need to go cold turkey from the pain meds I am now taking ($85 for Lyrica down the drain). But, the pain is going to be so bad when I do that, I'll probably be throwing up for about 24 hours. That is because of the rebound effect I'm going to get from going off of them. Looney bin here I come!

I have a new batch of meds better designed for the underlying problem, but they will not be enough to get me through the next couple days. Oh, joy! Wish me luck as I board this new roller coaster.

 :banghead;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
paris
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« Reply #16 on: June 07, 2012, 10:53:41 AM »

This has been fascinating.  Who ever heard of such a thing?  And going cold turkey??  Oh my!  Not fun.  Can they give you anything for the nausea before the pain takes over?    I am sorry you are dealing with this.  I am hoping this is the right path and things will get better from here on.   
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willowtreewren
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« Reply #17 on: June 07, 2012, 01:01:50 PM »

This has been fascinating.  Who ever heard of such a thing?  And going cold turkey??  Oh my!  Not fun.  Can they give you anything for the nausea before the pain takes over?    I am sorry you are dealing with this.  I am hoping this is the right path and things will get better from here on.   

Paris, I have this nifty little pill that is for migraines. If the going gets too rough I dissolve it under my tongue.  :2thumbsup;

And dear Monrien, thank you for the sweet note.  :cuddle;

I'll get through this.... I'm kind of tough. (just don't add "old bird" to that!)  :rofl;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
cassandra
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« Reply #18 on: June 07, 2012, 03:25:07 PM »

So sorry you have to go through all this Aleta. Wishing you strength, and will be thinking of you, and hoping those new meds will do the trick.

Lots of love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
jeannea
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« Reply #19 on: June 08, 2012, 08:38:20 AM »

That sounds truly awful. Wishing you the best. Just hold on. I'm so sorry you didn't get better news.
 :grouphug;
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billybags
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« Reply #20 on: June 08, 2012, 09:10:25 AM »

Aleta, wow this all sounds so awful. I am wishing you well, hope it doesn't take too long.
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okarol
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« Reply #21 on: June 08, 2012, 10:44:41 AM »

Good luck with the treatments. I am so sorry you're experiencing this. How long do they think it will take for the new meds to be effective?
 :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
amanda100wilson
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« Reply #22 on: June 08, 2012, 10:55:35 AM »

At least you know the cause for definately now, although I'm sure that doesn't help a lot.  Thinking of you. :grouphug;
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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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