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mindlesley 
10:37pm, May 30, 2009
I've had every side effect assoc. with Interferon monotherapy and some newies:low white counties, low hemoglobin, itches, flu, headaches, and dry retching and vomiting. About 4 weeks ago I managed to deglove my 1st and 2nd toes while riding my low resistance bike whilst diung hemodialsis , somethingn I've done for 4-5 years to mobilise PO4 from bone stores into bloodstream, to get rid of this toxin. I've never hurt myself before but this time did a doozy on the big toe which was surgically debrided and the 2nd toe was surgically amputated. Have been in nand out of hospital and am getting daily dressings and 2 different antibiotics at home now. The pegasys hasn't helped with the healing - because of the neutropenia. Tho' it all appears to be gettingn a bit better now so forgive me my friends for not keeping up with you. SO MUCH FOR HEALTH, love Mindy xxx
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Have had the Hep since 1967, when I had a bad case of jaundice, non- A, non B later to become C. Believe it or not, I was a (Lowly) lab assistant at the Red Cross in the team that discovered the Hep B antigen (once called the Australia Antigen). 'So what' , I hear you shouting. Well I was very pessimistic about clearing the virus at 12 weeks because i'd harboured it for so long, had diabetes, kidney failure, couldn't take ribavirin, and had to take only 135 micrograms of IFN (Pegasys) per week. Surprise, surprise on PCR - NIL VIRUS DETECTED. So, unless the pathologists have been saving government funding by falsifying test results by throwing dice instead of doing tests, I have a good chance of clearing (evicting) my unwanted guest virus after 32 more weeks of treatment. Not without side effects: yesterday my legs felt like they were made out of rain forest hardwood, maybe ebony, but after getting this result, I'm sure they will get lighter. Must be because all my cells are below normal but not critically so. Luckily enough, I take darbapoeitin (red cell growth factor) and as my hemoglobin is 99 instead of 119, I think I'll take an extra shot with dialysis today.
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Wonderful news!
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GOod news! Hang in there>
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take care and best wishes, gail
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Mindy this is Great news to hear! *doing the happy nil virus dance*! ....=]
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Good for you!!!.....maybe a silver lining???
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YAY!!! im praying for you Mindy.
xox
I added a new drug to my regimen, Cinacalcet or Sensipar, a calcimimetic that fools my parathryroid glands into thinking my calcium is too high, and thus the activity of the gland drops back, hopefully to where it should be. This is a common side effect of having no kidneys to speak of. Most people don't realise the complexity of kidney function. They are not there just to make pee. They secrete hormones that stimulate bone marrow to produce red cells; preserve body protein stores - by stopping it leaving your body via the urine; and control the levels of calcium, phosphate and other ions (minerals); They change Vitamin D into the active form used by the body. The only problems with this drug is that it causes nausea which isn't that good added to the IFN's side servings. I seem to be gradually getting used to this unless my Dr. increases the dose. Had my bloods done for 4 weeks, not viral PCR just virus neg or Pos. The big test will be the 12 week one. Haven't got the results yet. I'm not optimistic about clearing it early as I've had it residing in my cells for a bloody long time.
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I had no realization that the kidneys did all that.
I knew they were important.
So sending you good vibrations for this new drug to do its job and not make your nauseaous.
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You know what you could take for the nausea, Gravol, they are sold by 100 pink little pills, about 5$, not expensive at all, well in canada anyways.
They give this to kids when they are going for a long car ride, so they won't get nausea, or sick in the car.
They do make you sleepy though.
So how are you feeling tonight.
You must be in bed now, here Eastern Time, Canadian it's 11:04pm.
Did mostly paperwork today, damn budget never enough money, lol.
I got myself a nice cell, when the invasion occured mine was robbed so, I got one free with a 3 year contract.
Camera, internet, the works. I should receive it, in a couple of days.
So you got your lab work done, let me know how your enzymes are, ALTs & ASTs.
So your PCR won't be until week 12, funny they should have tested you at week 4 anyways.
Just to see how much lower your viral load would have been after 4 weeks of interferon.
I would have loved to see that.
It would give you a better idea on how respondent you are, a quick or slow, ect...
Your not curious, I would have asked, since you are entitled since you are type 4 you mentionned?
Did you swim today? I wish I had a pool, my hubby spends so much money on all kinds of toy toy for himself, but when it comes to me, nope or he'l buy me a snowmobile, this year I didn't even do any.
I just might sell my machine, and get a pool installed, you have just gave me a terrific idea. lol
Yessss.
I'll talk with you later my love, keep on keepin on.
Love Mackenzie xoxo
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Found that I stopped the nausea by taking the drug at night rather than daytime. Mindy xxx
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January 2009 |
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Goal Updated
Wow, Mindy that is a lot to be going thru. My heart goes out to you girl. I'm glad you are noticing some improvement with the healing. I sure hope you get to feeling better.
BionicWho
BionicWho
Oh my it was definitaly a doosy, you lost a toe? Oh my how horrible.
I'm glad the antibiotics are showing signs of healing.
What about tx, did you ever finish it.
I remember last year you being on a study or something?
You swam a lot, being it was so warm out there in your corner of the world.
Australia, if I remember correctly?
So did you manage to kill the dragon.
It has been a long time, I hope and pray that you will be ok.
Love Mckenzie
One day at the time.
Mckenzie
oh no, boy you have a lot on your plate , sorry .
Barb99999999
Mindy,I have been wondering how you were.have missed you greatly!
Good grief you are going through so much right now! Hugs and tears shed and shared for your loss of your toe.No worries at all about not keeping up with all of us!I wish I could be of more support for You right now.Your spirit is and will always remind me jazz flow music energy.strong vibrant,and timeless!.......xo
KneeDeep