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Monday, November 29, 2010

Saturday, November 13, 2010

Well I am in Grade 2!

As of the 10th of November, I had been classsified a Grade 2 Rejection patient.  Luckily for my Transplant friend or BFF Ashley, her 18 month assessment went a little smoother than mine.  that's okay Ash, because my lungs will kick your lungs ass on the next bronch. lol

Grade 2 Rejection is cleared up mostly by taking IV medication for three days, which i took.  I was on IV Solumedrol 1 a day for an hour, for three days.  All went well, this in turn made me very tired, halfway through the treatment i would be slouching on my couch just waiting for the last 30 minutes to infuse so i can go to sleep, and just let nature take it's course.  Because they couldn't use my port, with the tissue blockage and all, I was forced to get an IV in my arm, that actually lasted more than a day.  Thank god for that.

Solumedrol... what is it you ask, here is the scientific definition of SOLUMEDROL:

Solu-Medrol Solution is used for:

Solu-Medrol Solution is a corticosteroid. It works by modifying the body's immune response to various conditions and decreasing inflammation.

Important safety information:

  • Solu-Medrol Solution may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
  • If you have not had chickenpox, shingles, or measles, avoid contact with anyone who does.
  • Tell your doctor or dentist that you take Solu-Medrol Solution before you receive any medical or dental care, emergency care, or surgery.
  • Diabetes patients - Solu-Medrol Solution may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine.
  • Talk with your doctor before you receive any vaccine while you are using Solu-Medrol Solution.
  • Solu-Medrol Solution has benzyl alcohol in it. Do not use it in NEWBORNS or INFANTS. It may cause serious and sometimes fatal nervous system problems and other side effects.
  • Lab tests, including adrenal function, blood pressure monitoring, and eye exams, may be performed while you use Solu-Medrol Solution. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
  • Solu-Medrol Solution may interfere with skin allergy tests. If you are scheduled for a skin test, talk to your doctor. You may need to stop taking Solu-Medrol Solution for a few days before the tests.
  • Corticosteroids may affect growth rate in CHILDREN and teenagers in some cases. They may need regular growth checks while they use Solu-Medrol Solution.
  • Solu-Medrol Solution should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.

Possible side effects of Solu-Medrol Solution:

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:
Dizziness; facial flushing; headache; increased sweating; mild nausea; pain, swelling, or redness at the injection site; stomach pain or bloating; vomiting.
Seek medical attention right away if any of these SEVERE side effects occur:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody, black, or tarry stools; changes in body fat; changes in menstrual period; chest pain; fainting; fever, chills, or sore throat; increased hunger, thirst, or urination; mental or mood changes (eg, depression, personality or behavioral changes); muscle pain, weakness, or wasting; seizures; severe nausea or vomiting; shortness of breath; slow, fast, or irregular heartbeat; slow wound healing; stomach pain; sudden, severe dizziness or headache; swelling of the feet or legs; tendon, bone, or joint pain; thinning or discoloration of the skin; unusual bruising or bleeding; unusual skin sensation; unusual weight gain; vision changes or other eye problems; vomit that looks like coffee grounds.
 So this is what I dealt with for three days.  Yeah, fun!

I had gone to my Dr's in Toronto about 2 months after my 18 month assessment, and they had told me that my results came back from my Bronch showing Grade two rejection, this was how they treated it.  I have been taken off Cyclosporin and put on PROGRAF or Takralimus witch is stronger Anti rejection medication.

Here is the definition of that Medication:

Tacrolimus Capsules is used for:

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Preventing organ rejection in patients following liver, kidney, or heart transplant. It may be used along with other medicines. It may also be used for other conditions as determined by your doctor.
Tacrolimus Capsules is an immunosuppressant. It blocks the action of certain blood cells (eg, T lymphocytes) that can cause the body to reject the transplanted organ

How to use Tacrolimus Capsules:

Use Tacrolimus Capsules as directed by your doctor. Check the label on the medicine for exact dosing instructions.
  • You may take Tacrolimus Capsules by mouth on an empty stomach or with food. However, you must take it the same way each time for it to work best. If you take Tacrolimus Capsules on an empty stomach, always take it on an empty stomach. If you take it with food, always take it with food.
  • Grapefruit and grapefruit juice may increase the risk of side effects from Tacrolimus Capsules. Talk to your doctor before including grapefruit or grapefruit juice in your diet while taking Tacrolimus Capsules.
  • Tacrolimus Capsules works best if it is taken at the same time each day.
  • Continue to take Tacrolimus Capsules even if you feel well. Do not miss any doses.
  • If you miss a dose of Tacrolimus Capsules, contact your doctor right away.

Important safety information:

  • Tacrolimus Capsules may cause drowsiness and dizziness. These effects may be worse if you take it with alcohol or certain medicines. Use Tacrolimus Capsules with caution. Do not drive or perform other possibly unsafe tasks until you know how you react to it.
  • Do not change your dose of Tacrolimus Capsules without first checking with your doctor.
  • Tacrolimus Capsules may increase your risk for developing skin cancer. Avoid using sunlamps or tanning booths. Limit your exposure to the sun. Use a sunscreen or wear protective clothing if you must be outside for more than a short time.
  • Check with your doctor before you drink alcohol while you are taking Tacrolimus Capsules.
  • Check with your doctor before you use a salt substitute or a product that has potassium in it.
  • Tacrolimus Capsules may lower the ability of your body to fight infection. Avoid contact with people who have colds or infections. Tell your doctor if you notice signs of infection like fever, sore throat, rash, or chills.
  • Tacrolimus Capsules may increase the risk of certain infections, especially inactive viral infections, including BK virus-associated nephropathy and JC virus-associated progressive multifocal leukoencephalopathy (PML). These infections can lead to serious, sometimes fatal, outcomes. Contact your doctor right away if you experience clumsiness, weakness on one side of the body, trouble speaking (eg, word-finding difficulty, slurred speech), or loss of vision.
  • Do not receive a live vaccine (eg, measles, mumps) while you are taking Tacrolimus Capsules. Talk with your doctor before you receive any vaccine.
  • Patients who take Tacrolimus Capsules after an organ transplant may have an increased risk for developing high blood sugar or diabetes. The risk is higher among black and Hispanic patients after a kidney transplant. High blood sugar may make you feel confused, drowsy, or thirsty. It can also make your flush, breathe faster, or have a fruit-like breath odor. If these symptoms occur, tell your doctor right away.
  • Lab tests, including blood counts, blood potassium and glucose levels, kidney function, heart function, and blood pressure may be performed while you use Tacrolimus Capsules. These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.
  • Caution is advised when using Tacrolimus Capsules in CHILDREN; they may be more sensitive to its effects, especially lymphoma.

Possible side effects of Tacrolimus Capsules:

All medicines cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:
Back pain; constipation; diarrhea; dizziness; headache; joint pain; loss of appetite; nausea; stomach pain or upset; trouble sleeping; vomiting.
Seek medical attention right away if any of these SEVERE side effects occur:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; dark urine; decreased coordination; diabetes (frequent urination, increased thirst or hunger); fast or irregular heartbeat; fever, chills, or sore throat; mental or mood changes (eg, anxiety, confusion); one-sided weakness; painful urination or changes in the amount of urine; red, swollen, blistered, or peeling skin; seizures; severe or persistent dizziness or headache; shortness of breath; swelling of the hands, feet, or legs; tingling or numbness in the hands or feet; tremor; trouble speaking; unusual bruising or bleeding; unusual lumps or skin lesions; unusual weakness or tiredness; vision changes; yellowing of skin or eyes.

Some more things to keep in mind.  

Hey the more you know, the better you can understand what your body is going through. I think it's good to know as much as you can about what is going on in your body, so you can better appreciate the gift of life, and love you have. 

So i will keep you all posted as to what is happening in my world.  The world of Lung Transplantation.  I am not afraid, so please do not be afraid for me.  Keep me in your prayers, and thoughts, I will promise you that i will fight the fight to saty with you all.  That is my main focus.  Stay healthy and LIVESTRONG!

Love you all
Ali

Friday, November 12, 2010

News, news, news!!! All new!

Well this week was a whirl wind of fear, disappointment and not understanding how science and nature work.

On Tuesday November 9th, i got a call from my nurse Coordinator in Toronto.  she's the one who leaves us Easy Call messages to respond to.  Only problem is that this call wasn't VIA easy call, it was a direct call from the Transplant unit to my husbands Cell phone, as that was the number they have on file for important phone calls that can't be made or left on a message.

This stated when i had mu bronch done in August, and everything was well.  I got a Easy call message stating the I had Grade one rejection, nothing to worry about they just increased my Cyslosporine to 175 in the morning and at night, and i was to follow up with another bronch in a few weeks.  Well that day was November 2nd 2010.

So off to Toronto i headed for more testing.  I know this may sound weird and kind of out of the ordinary.  But i honestly love getting Bronch's done, maybe it's got something to do with the fact that I don't drink, and it's my high of sorts.  i like that fact that Medicine can do these things to detect the things that need to be done, and fixed.

So I thought everything was going great until i got the results back form that Bronch within a week.  When they results come back that fast there must be something up.  And of course there was.

I was diagnosed with Grade 2 rejection.  What happens in this case is that the medication i on, isn't working well, and they request vigorous IV treatment with high potency Steroids to bet things rolling in the right direction.  I was say when I first heard about it, I cried, my husband was scared a is was.  I managed to survive the night by being as positive as possible and making the best of something i cannot control.

Life hands you lemons and you make lemonade, or God hands you something, and you educate everyone, and never let them see you cry, never let them see you weak, because when you get weak, the worst always happens.  Positive thoughts lead to positive reactions.  And that my friends is a fact.

So The meds started on Wednesday afternoon, and they said the side effects would be bloating, or water retention, swelling of the hands and feet, excessive appetite, and that i would be wired for sound.  Well here are my reactions... Tiredness all the time, swollen hands and feet, and that's pretty much it.  I was expecting the worse, and got the best.  In fact I think my water retention went way down in the meantime.  I also called and asked if i could have this stuff instead of Prednisone... not such luck.

So to day is Friday i have had my last dose of meds, and I don''t really feel any different.  I wasn't able to use my port as I have Fibrin Tissue on the end of it, so the gravity pole wasn't allowing the medication to go through.  So for the first time in as many years, something like 6 or 7 i had to have a Saline lock put in, no PICC line no use of my port, I went old fashioned, and it lasted the full three days that we needed it to.  I have a lot of dishes to catch up on. lol


So no one has to worry things are going great.  I am a little short of breath, but i guess that's normal.  I will keep you more posted on what is happening with me, as I have not been very good at it, at all.  For that i truly apologize.

Love you all and thank you for your prayers and support.

Kisses and love
Ali