Am I the only one?

Feel crappy sun burnt itchy scratching cause more petechiea so I go for a count. Call the doctors office explain that I'm exhausted and would like to get treatment. My old doctor is on vacation and the new doctor hasn't seen me so. The secretary is going to try and hold a spot for me and ask my old doctor on Monday if he will treat!


My Count is 14 I have spots and honestly no real bruising but i'm exhausted and can barely keep up with my work schedule. I can't take time off of work I need them to agree and book me on my day off!



Is it my imagination? am I the only one who runs into this much trouble trying to get treatment.

It does seem like you have more trouble getting treatment. I don't know what the health care system is like in Canada.

Here in the US I think it varies a lot depending on your insurance. I know for me if my count was 14 my dr would treat me. If she was on vacation I would see one of the other 4 docs in the practice. I have seen them all at some point during the years. My appointments are booked on Tuesdays my day off.

There is only 1 hematologist and I have an appointment to see him in October. He won't treat someone he hasn't seen. My old doctor just happens to be on vacation not back till Monday. The secretary is sure he will order it for me when he gets back so that is why she is going to hold me a spot on my requested day!


The kicker is I hung up the phone and my gums started bleeding. They never used to start bleeding at these higher numbers. When I was first diagnosed with ITP they wouldn't bleed till I was 10 and under once when I was 12. But I started having on and off bleeding gums and my count was in the 30's range!


Very frustrated at this point! I sure hope I hold out till then feel like crap and I'm nights friday, saturday, sunday, and monday! UGH

I don't blame you for being frustrated! I hope you are okay until you can get treated, that is awful to have to work and feel so bad. Your job is pretty physical and busy too, right?

I'm getting rituxan tomorrow ,wish I could send some up to you.

Good luck tomorrow, Dru! I will be thinking of you and all those platelets that Rituxan will be revving up! Did it work well for you last go round?

Good luck Dru! Keep us posted.

Julia I will send you an email.

Natalie how you doing?

Jeffrey

Wow it does sound challenging. I wish you the best! My count is 19 and I feel the tired achiness right along with you. Keep us posted!

Dru,

Good luck with Rituxan tomorrow! Keep us posted! I don't remember, have you had it before?

I am Canadian too and sure do have trouble getting any treatment or appointments, my appointments just come as a letter in the mail, I get no say so at all! I am also covered in petticia now and fatigued and don't have a clue what my count is because I never hear until my next appointment she just says I should "rest assured" I will hear if I need too! So maybe make you feel better that your not alone but maybe also feel worse that you arent alone! No wonder Canadians seem to need to use the ER as much as wel do!!!

Sure feel for you having to work though, especially nights all weekend! That's rough!!! Hope it goes okay!

Wow, it must be how our different Provinces work. We get phone calls with appointments and usually don't have to wait for treatment. Now, waiting for appointments with specialists is different; there is a wait. Steven has to have an MRI and when they called to book it, it was supposed to be in September. Then the receptionist noticed the doctor wants it ASAP, so now it's on the 14 of this month. But we've still had the appointment for more than a month. Getting in to see our family dr. is usually easy too. Not much waiting.

Believe it or not Nights are my preferred shift. I only work nights my job is and isn't physical. Depending on the night.

I do not understand why if your a patient in a office with 5 other doctors in the same office why another one can't read your file and say ok treat! This is the part about doctors that frustrates me!


MommaBee you can not only demand to know your counts but also arrange for you to get a copy. I did my blood test at 8:40am and had results by 4pm. The true reason I like that office they have the code so they can access LifeLabs.

Dru Good luck with Rituxan that is the drug that gave me such a long remission. That is the drug I want to make arrangements to have.

I had my rituxan today. It worked well for me for ITP twice. This time I had it for hemolytic anemia. Instead of platelets this time I am making antibodies to my red blood cells. So my bone marrow is in overdrive and platelets are too high at 611k. The lower my red cells the higher my platelets. I wish I could share all these extra platelets. Sometimes when my platelets crash my red blood cells are high.

The 2 times I had rituxan for ITP I had chest pains. Well, that happened again today. This time I was not worried about it because I knew it was a reflux kind of thing. They did have to stop the rituxan and call my doc in, she did an EKG which was fine. They gave me tums and malox, I had already been pre treated with Zantac and Prevacid, and benedryl. Then I was okay for another 2 hours and the started itching in my throat and ears. So they had to have the doc come in again and she gave me big dose of hydrocortisone and then I was fine. Took 6 hours altogether.

Glad to be home now!

Dru,

Glad to hear you have a good Dr. who knew what to do for you!! I had it back in 2009 and my Hemo was out so the Nurse Practitioner panicked when I reacted (hives and itching all over) so she wanted to stop it - had to get the Chief of Hematology to step in and just treat the hives and slow down the drip, it took 8 hours each of the four times

Are you going to have 4 treatments or they going to only do one? Did the Kindle work well this time

Cindy Ann

Thanks Cindy Ann,

Yes I'm lucky to have a good doc who is always on top of things, and nice too! She said they had several patients reacting to rituxan in the past couple weeks.

I am going to do the full 4 weekly treatments. My hema wants to do that as she thinks it will give me the best chance at a remission.

Kindle worked fine. I listened to an audible book on my kindle fire. I think I would have liked the book if I could have focused. The 50mg of benedryl makes me feel out of it. I think I will listen to the same one again next week.

Was your treatment in a hospital? 8 hours! I guess I can't complain about just 6 hours

It was in a Chemo Ward in Olympia Washington attached to a hospital. I ended up sleeping thru most of it because of the pretreatment so it was not so bad. Kind of funny I was the first in and last out each time :laugh:

Cindy Ann

I am so glad you are all ok!

I worry about you all!

Jeffrey

CindyAnn wrote: It was in a Chemo Ward in Olympia Washington attached to a hospital. I ended up sleeping thru most of it because of the pretreatment so it was not so bad. Kind of funny I was the first in and last out each time :laugh:

Cindy Ann

Is the picture of your kitten?

Jeffrey

Jeffrey - the picture is one of four kittens our porch cat had - he is named Clyde however my husband called him Collide because he was so full of energy :laugh: All four have great homes now and Momma Cat, we call her Karma, because of the good karma we got from keeping her is now fixed (broken :laugh: ) and won't be having any more kittens. I LOVE cats but I am VERY ALLERGIC! so on the porch she stays

Way more info than you asked for but fun story.

Cindy Ann

Cindy,

I have 3 cats. I really like cats. My wife has forbidden me to go to local shelter. Every time I go, a kitten gets a home! Ya gotta love a free cat that will cost you about $500 to get house/home ready!

My cat Joe (Joe Writtenhouse) has a facebook page.... Yup, I am over the top.....He has not posted anything lately but he may soon. He has been napping!

Jeffrey

Got to love our pets - they love us UNCONDITIONALY !!
We have 3 Pomeranians (Momma, Daddy and Baby) I'll change my picture someday to show them off

So check this out!

I said the new doctor wouldn't treat me cause he hadn't seen me and isn't till october!

Well guess who was the doctor ordering my treatment! That very same doctor!

Gotta love irony! And stupid health systems! How are you feeling? You are getting treatment now?

Had treatment on Tuesday morning I feel a little better that said I sorta slept/ did nothing for 2 days. So not sure if that is why i'm not as tired or that maybe my platelets are rising.

Still have the discoloured urine from the rhogam 3000mcg I was given that kinda worries me usually only last 48hrs max. and have some kidney pain not sure if it is related or not have had stones in the past. Only time will tell.


On a side note my sunburn is starting to look much better.