I'm Home
 

Aw…all of you are the best :grouphug:

Thanks so much for your well wishes, prayers and concern. Apparently you have some pull with the powers that be, because I finally got to come home tonight. It is so nice to know that you have been with me, and that you will remain so. Oh…my fur babies are here too now :).

Will catch up soon, but must get some rest and furry snuggles in first.

With love, Erika

Get some rest and some snuggles from your fur babies Ericka! I'm glad you are home! :hug:

Erika, we know you weren't feeling well and you were going to see the doctor. Did he put you in the hospital? So glad you are well enough to be home and to check in. I'm sure your babies were glad to see you

It sure is great to be back home.
What an odd few days this has been.
Here's a run down:

Tues:
I went to the doctor and was sent to the hospital lab for blood work, urine tests and x-rays.
I dropped by the office after spending 4 hours at the hospital getting all that done, where I had a TIA (mini-stroke). I’ve had them, as well as seizures before, and apparently they are due to vascular spasms, but this episode was different. Usually the TIAs just cause me to loose my vision for a few moments and give me a headache.

This one was weird and started as a band of flashing light across one side of the visual field of both eyes. It was there even when I closed them. Then a few minutes later a stab of pain went through the back of my head and settled in the side of my brain. As that continued along with the light show in my visual field, the hearing on that side faded out and I became aware of an odd sort of memory loss involving names. This all unfolded in the span of around 10 minutes.

I had been sitting at my desk talking to an associate when the lights and then the headache started, but while we sat there talking, what disturbed me the most was the realization that I couldn't’t remember her name. Then as we chatted, I also became aware of a disconnect between names and objects; although I could eventually come up with the word-name of things, they didn’t seem to be the correct ones to use.

We had been talking about bed recommendations for a patient and at first I couldn’t recall what the thing that one lays upon was called. Eventually some names came to me but I couldn’t figure out if the word “mattress” or “foam” or a few others that I can’t remember now, were the right names to call it.

The same thing happened when our conversation shifted to a physiotherapy practice up the street. I couldn't remember the name of the street that clinic was on when my associate asked which PT clinic I was talking about, but it is the same street that our clinic is on.
I also couldn't give her the name of the head PT there, although I had it in my head. It just didn't seem like the right one to me. That PT and I have been friends for over 20 years. it was like that.

When my associate realized that I was having trouble talking and she asked if I was OK, I told her that I might be having a stroke. She called the ER and took me back to the hospital. It’s only three doors down from my office, so it was faster for her to take me than to call an ambulance. They were waiting for us at the ER.

By the time a CT of the head, ECG and an echocardiogram were done, my memory was back to normal and just the headache and profound fatigue remained.
The CT showed a small infarct on the right area of the brain, so I was given a medication to dissolve the clot. The ECG & echocardiogram picked up an atrial fibrillation, aortic valve insufficiency & enlarged left ventricle.

The ER doc suspected pericarditis and aortitis and/or aortic valve damage. Meanwhile the blood tests that had been done earlier came back with elevated platelets (twice the upper normal range) & elevated WBC, so an anti-coagulant was added to the mix.

After much fussing, humming and hawing, the initial assessment was delivered and I was admitted for observation and further evaluation.
1. Reactive auto-immune inflammation secondary to infection (although no specific microbial cause was found on further blood and urine tests.) It was suspected that there had been a staph infection a few months back that had gotten the auto-immune reaction going; possibly from chronic regional enteritis/Crohn’s Disease or from the gastric surgery that had been done in the summer; or from one of the usual other suspects: cytomegalovirus, parvo-19 (fifth disease) or herpes simplex. When in doubt…guess.
2. Mini-stroke secondary to deep vein thrombosis, pericarditis, aortitis, aortic valve compromise; all most likely secondary to 1.
3. Possible bone marrow disease/essential thrombocythaemia – a form of cancer

Wed:
Physical examinations, more blood work & more cardio tests.
An IV Immunoglobulin infusion, along with another hit of anticoagulant & clot busting drugs was given.

At the end of the day came the diagnosis: Reactive auto-immune inflammatory disease with secondary arthritis, pericarditis, aortic inflammation, aortic valve incompetence and compensatory left ventricular hypertrophy.

Thurs:
Talk of using prednisone or an Infliximab (Remicade) infusion; a monoclonal antibody that works against tumor necrosis factor alpha (TNF-a), and is used to treat inflammation due to autoimmune diseases like regional enteritis/Crohn’s Disease & RA.

I had Infliximab twelve years ago for regional enteritis and secondary amyloidosis, but started to develop antibodies to it after the second infusion. When I told them that, they said it was too risky to have it again because of the likelihood of having yet another adverse reaction.
IV prednisone was then ruled out because pf previous reactions to it as well, along with the risk that it would increase the platelet count further.

In the end it was decided that the best treatment may be the IV Ig, so depending on follow-up blood work, it will either be given as a high dose series that is infused over a five day period, or as a solitary infusion every few weeks. Until then it will just be continuing on the oral Ibuprofen and Diclofenac topical for the hand, wrist & ankle joints as far as medication goes.

Fri:
More observation, more poking and prodding, more blood work and then talk of doing a bone marrow biopsy & an aortic valve replacement. I think the doctors were getting frustrated from not being able to do much in my case, and may have simply been looking for something to do with me.

I nixed their two suggestions, and after threatening to start swinging from the chandeliers for entertainment instead of meditating (talk about being bored out of one’s skull); they turned me loose.
:rolleyes:…the nurses mistook a deep meditative state on Friday morning for cardiac shock when the ECG monitor registered 40 BPM and set off the alarm :D.

Symptoms and joint pain have not changed from when I started this journey with a follow-up visit to my doctor 5 days ago, but at least I have some idea of what has been going on. It seems that the immune system went nuts over some bug a few months ago, and once it had dealt with that, it went on to attack the joints, as well as the lining around the heart (pericarditis) and the aortic valve.
I’ve always been an over achiever, so I suppose that it is no surprise that the immune system would climb aboard that train and become an over achiever too.

Personally, I think that the heart stuff has been there for years because I had pericarditis in 2008 as well, and although there was no indication of a problem with the aorta then, the left ventricle was slightly enlarged on retesting 6 months after that.
The cardiologist tentatively agreed, because he said that for the left ventricle to be enlarged the way that it is now, that the aortic valve condition has been there for some time.

He said that it may have become worse now, but that the heart seems to be handling the back-flow (regurgitation) OK at this point in time. He said that as long as it doesn’t get any worse, and so long as I don’t engage in strenuous physical activity, all should be fine.

I actually laughed out loud when he said that. As if I’m going to be out running marathons again.
Oh for crying out loud…I have MS and walk with a cane, both of which slow me up; plus autonomic neuropathy which keeps the heart rate below 60 BPM even on exertion. Those two alone pretty much assure that I’m not going to be doing anything strenuously without passing out first, never mind some narcoleptic fatigue thrown in for good measure.
With all due respect, that guy must have graduated from the Medical University of Duh :confused:.

In the mean time, I’ve been instructed to get some rest, continue with oral Ibuprofen, rub the Diclofenac compound onto the joints, and to return on Monday for the follow-up blood work. If nothing else, all the blood that has been taken for the tests will serve to decrease the platelet count.

I’ll also be pulling a few things out of my own bag of tricks, while doing a whole lot of hoping & praying that the “inflammation-fest” dissipates by the time I see my doc for a consultation on Thursday.

With love, Erika

Im so sorry for all that you are going through. I will keep you in my prayers. Keep us updated on how you are doing.

:eek: WOW What a trip! :eek: Glad you are off of that merry-go-round.
Make sure you follow that Duh Doc's instructions, OK?:hug::hug:

Wow…sounds like a tsunami of an attack on your body, Erika.

The heart valve thing worries me…are they worried about scar tissue forming, making it that much more difficult for it to do it's work?
And your ventricular muscles can only take so much overexertion, as I'm sure you know…

No ABs for the pericarditis?

And for this whatever infection to affect your joints so much…wow you are experiencing a battle royal.

Glad that you took prompt action and headed over to the ER. Question: do NSAIDS lower platelet counts the way aspirin does?

Fingers crossed and healing prayers being sent your way as you continue to try to figure out how to get back to "normal"...:grouphug:

Wow, that is alot to take in and process and go thru. :hug:

I am so glad you had such wonderful care though. Keep up your
positive attitude and enjoy your dog and kitty, Ziggy if you can.

"do NSAIDS lower platelet counts the way aspirin does?"


I don't think that any of them lower the platelet counts, but all seem to decrease the tendency to form clots.

The odd thing was that other than the platelets and increased WBC everything else came back blood test and urine wise as excellent. PTT came back in the normal/average range and my cholesterol ratio, as well as both levels are nearly ideal. Just the HDL is a little on the low side.

All of this really seems to be due to an ongoing inflammation reaction to some bug that has long since departed and nothing else. There are no signs of infection anywhere.
Trust me, they looked high and low...and in every nook and cranny everwhere in between, if you get my meaning :eek: :o

With love, Erika

This is complicated and not common....I'm going to have to research this further.

but in in the meantime I found this:

http://www.nhlbi.nih.gov/health//dci...rm_causes.html

This mentions treatments:
http://www.mpnresearchfoundation.org...FYhcMgodCyUAbQ

What an ordeal!! :hug: I hope it all gets better without a lot of meds or surgery. Mini strokes frighten me, my mom had those... Keeping you in my prayers! :hug:

Thanks so much for your kind thoughts everyone.

Mrs.D,

Because most of the blood and urine analysis consistently came back within the normal reference ranges, the doctors are 95% sure that the high platelet count is a reactive one; also termed "Secondary Thrombocytosis"
http://emedicine.medscape.com/article/206811-overview

RF, ANA, Crp, Liver enzymes, RBC, Hct, B12, Folate, Ferritin, TSH/T4 & T3, urate, plus a bunch of others that I can't remember were all either negative or pretty much in the middle of the reference ranges.

WBC & Neutrophils are slightly out of range on the high side, MCHC is out on the low side, and platelets came in at 804. The comparative reference range for platelets is 160-380 x 10(9)/L.

The cardiologist thought that the clot probably came from a deep vein thrombosis and might not even be related to the high platelet count. Apparently secondary throbocytosis doesn't increase the likelihood of clot formation.

That sounds reasonable because I haven't been able to walk about, or work out on the cross country ski machine as much as I normally do because the hand and wrist joints are too sore to use for support with a cane or to hang on to the ski machine with.
Crumb...I can't even operate a manual can opener or open a bottle of juice because the twisting motion is too painful...if and when I can keep a grip on those things, that is.

I need support to walk because the ankles are also inflamed and painful now, along with the left hip and left knee. Crutches have been working the best because I can put some of the body's weight on the arm pits, but that's only good on level ground or in the house.

Thus, I've been sitting more than normal. Even though I have been doing stretches and lots of contractions for the legs, it obviously isn't enough.
I'm just going to have to get past the pain in the joints and get back to walking and using the ski machine.

I also have a mini trampoline, so I'm going to give that a try as well to see if the lower joints will take it. Even some light bouncing will get the blood flowing better in the pegs. I'd go to the local pool to walk and exercise in the water, as I've done in the past, but the risk of slipping on the deck or catching a bug at this point is too great.

I'm sure that I'll figure something out that doesn't get the joints too upset :winky:.

With love, Erika

Poor thing,

Sounds like you've really been through the wringer!

Glad you're home, make sure you rest!

Cindy

Thanks so much for checking in. I just feel like I am back to work, admitting history and physical, progress notes and discharge summary. I think even your idea of taking it easy isn't taking it so easy at times. Take care, we need you

Yea!!! Glad you are home where the real healing can begin :-)

Yey!
I can use the cross country ski machine in mid range by using a crutch on the right side and having it set up so that the left side is next to the kitchen table. I have a rolled up towel on the table that my left hand can be draped over, which allows the wrist to be in a neutral position (the wrist on the left is the worst of the two sides). I'm not leaning on that hand, or on the crutch, but using both sides like that gives the body enough support for balance and steadiness.

I had it set on a very light tension this morning; just enough so that the skid plates wouldn't slide without me making them move. I also wore my ankle hiking boots instead of runners to support the ankles. The combination of light tension and the ankle support from the boots helped to keep the legs in mid range, maybe within a two-three foot stride.

I did really slow, deliberate movements and it went very well. Granted, this isn't going to get me much in the cardio exercise department, but the deliberate leg movements did work the calf, thigh and hip muscles; and got the ankles, knees and hips through some range of motion as well.

The right side felt OK but the ankle and knee on the left one didn't like it, so the stride lengths had to be a little shorter on the left. After 10 minutes I stopped, and now I'll wait to see how those lower joints are tomorrow before trying it again. By then I should know if it will cause more inflammation or not.

Man, I sure hope not. I've got to get these joints working again. I miss working at the clinic and gardening season is fast approaching. For crying out loud...I have plans to build a more permanent green house before spring, but if things don't shape up in a hurry, I'll have to hire someone to build it instead of doing it myself.

Last year at this time, I was out pruning my apple trees in the snow. There's no way that this body could do that now, even though most of the branches are within reach if I put boards on top of the snow to stand on, like I did in previous years.
Even if these hands could carry the boards over to the trees to get it set up (which I don't think they could yet), they'd be busy supporting the body on crutches. Never mind getting the leg joints to walk out on the boards and remain steady, or getting the hand joints to hold on to and manipulate the lopper and saw, if I got that far.

I'm not thinking about this stuff to frustrate myself, but rather to motivate. It does seem that there is such a long way to go...and then I remember how so many of you have pushed on through toward your goals, and continue to do so.
People like Doydie, Blessings, Sally, Barb, Wiz, KittyLady, Debbie, Kitty, Gladys, Ann, Cindy, Mariel, Eddie, Mrs. D, Laura, Texas Batman, Jack and so many others here. You are all a much needed inspiration :hug:.
And I can't get a father's words to his daughter with CP out of my head: "Yes you can can."

Yes, I can can...and I will will :).

With love, Erika

You can do it!

I had a relapse in 2012 and it took a little time to get over it.. it happened slowly but just this past Sept 2013, I walked 34kms in the the Weekend to End Women's Cancers in Toronto with my team "Johnny Reid's Pink Tartan Army" yeah he is the singer. (swoon) we became friends during the walk... it is my second time doing it. We did it in 6 hrs in the rain no less.. we were soaked.. but so worth it!
If i can do this you can come back, but it takes time.. i want to do the walk again.. but i may not be able to do it this year.. but you never know.

Hugs
Cindy

Erika- Here is the Pointer Sisters' Yes We Can Can song. The refrain is great.

http://www.youtube.com/watch?v=FVxv6AFt7YM

ANN :sing:

:D:D

"Yes we can can!" :)

With love, Erika

Erika, I think your goal should be to DO the can-can--pantaloons and all;)

Seriously, glad you got some movement in…it feels good at the time; then the body yells at you "what did you do to me?"

That's when I have to rest-which is occurring so quickly after I do anything. I cleaned the bathrooms yesterday--shower tiles, floors, the works--and i was cooked the rest of the day. Weak, fatigued…it scares me. I worry that I'll never get my mojo back:(

I hear you on that one Barb. Only my body doesn't ask "What did you do to me?" It says "Just wait until you see what I'm going to do to you!" :D

I'm about to head into a baking soda/Epsom salt bath to calm it down. Not only are the joints in my legs acting up more since this afternoon, but it feels like a bug is settling in as well.
The body is aching all over, spastic & stiff in the neck and shoulders, slight fever, a welty and sore rash on the arms/elbows and a headache to go with it. Probably picked something up in the hospital.

I'm concerned about when I'll be able to return to work too.
Hang in there Barb. :hug:
We'll get through our rough patches.

With love, Erika

Erika has anyone told you that you are one very stubborn woman??? Good luck and I do believe that 'yes you can'.

:D I was born stubborn Doydie...and my dear Mom figured that out on that first day when the nurses brought me to her for my 2:00 AM feeding. Apparently they woke me up to do it and I arrived in my mother's arms screaming in protest. No amount of soothing or encouragement could get me to eat then...or any time after that while growing up if I didn't want to. Mom just skipped the middle of the night feedings because I would sleep through the night from the get go, if just left alone.
Things just evolved from there.

As a child, "being stubborn" was the most frequently used term to describe my attitude by teachers, coaches, family and friends. Thankfully, a whole lot of patience, complimented by the hands of discipline from my parents helped to mold obstinate stubbornness into what I think is more in line with determination...admittedly with a smattering of underlying stubbornness to back it up. Yes, I got the odd well placed and equally well deserved smack on the back side as a child :winky:.

We'll never know what we're capable of if we don't try.
You have proved that is true, and your achievements in meeting your health enhancement goals, encourages me and others to keep right on trying to accomplish our own goals...what ever they may be :hug:.

With love, Erika

Erica, I had Pericarditis twice, many years ago. The first one I had only bed rest, and recovered in a few weeks. The second time they gave me Prednisone, and it was a bad idea. I felt like I was manic, crazy, pounded walls. Not a good idea. Bed rest was the best way to get over it for me.
It sounds like R-E-S-T is on the ticket for you, in spite of your need to do things and be active.
My platelets are twice normal, but that's "normal" almost, for me. That's not from reactive thrombocytosis but from Polycythemia Vera which I added to my 'charm bracelet" 8 or 9 years ago. I use aspirin powdered and rubbed into my skin (equiv. of baby aspirin a day or one whole uncoated aspirin over four days). I proved the aspirin goes through the skin when I tried someone's idea to take a whole aspirin daily in this manner--I got a nose bleed, nurse told me to stop the excess aspirin. I powder the aspirin myself in a bowl with the handle of a table knife.