Back on the roller coaster ride again

So I hate being right been exhausted and than started bruising. Than started seeing spots booked an appointment with my family doctor. That it self was a hassle anyways finally saw him and got my platelet count done.

He called me at 8:30pm you know what that means. Low platelets my count is 8. He says call his office in the morning and have the secretary call the hematologist office so I don't have to wait till september for an appointment. I did she informed me that they would get the result and not to worry.

So I take matters in my own hand. I contact my old hemo's office since my family doctors secretary is useless. See if there is a way for him to see me and so I don't have to wait.

Ugh not a happy camper! Turns out my old hematologist doesn't do hematology patients anymore just oncology ones. They have a new guy doing hematology patients but he's on vacation won't be back for 2 weeks.


So now I'm sitting at this low count with no doctor. If I want treatment the closest ER is 15 minutes away. They closed the ER in the hospital in my town and turned it into a urgent care. The hospital that the old Hematologist/ Oncologist works out of is 45 minutes away.


So now because I have no doctor i'm at the mercy of who ever the emergency doctor is. I have no hope in getting the treatment that gives me the least of side effects because standard protocol is pred or IVIG. I have both of them down as allergy's due to the severe side effects I get. Pred actually gave me hives but IVIG just left me with horrible after effects.

Anyways just thought i'd vent my frustrations here since no one else would understand why i'm so frustrated.

Winnifred,

I don't know too much about the system where you are, but why don't you try one of these routes. Look up a hema, take your paperwork, and just show up at their office, or try the same thing with a local hospital or clinic. Take a good book and some candy or something to share with the receptionist and I think you might be surprised at the results.


Good luck and stay in touch!

Jeffrey

Sorry for your frustrating situation.

You may want to contact whoever ran your Rituxan clinical trial, sometimes they can help. My brother gets VIP treatment for his autoimmune lung condition brought on by experimental cancer treatment (he's cancer free after five years into stage four lung cancer, so he's not complaining!) If you are a success story, they might want to protect you as a "data point", although there are ethical issues involved with clinical trials that sometimes get in the way of them helping.

In case anyone else missed the irony of your subject line, in an earlier post you said:

ITP the roller coaster ride that one time your smiling and loving life and the next thing you know your on a downward slope and scared out of your wits.

I now just go with the flow and remember I love roller coaster rides!

I like your attitude!

I came to this site for the information.
I keep coming back for the inspiration!

Sorry to hear this Julia. It is so frustrating...I find the primary care docs to be of no help with this stuff. If you go to the ER they are likely to want to admit you and like you said do prednisone or IVIG.

Since you are really low do you think your old hema might see you? They must have someone covering for the doc on vacation... I would call back and tell them you are trying to avoid going to the ER.

Good luck...hope you are doing okay.

Dang Julia - you had such a good streak going! Good luck - I hope you can figure this out soon!

I don't trust the doctors who ran the Rituximab study they don't know what they are doing. Actually my whole area doesn't know what it is doing!

Old hemo's office knows at least the secretary does and she is trying to help me avoid an ER.

As for ER I won't be admitted they don't admit people around here for low platelets. Least they didn't used to.

Sandi Yes I had a good run but we all know what goes up must come down!

PS: I may not have a choice but to go to ER soon. I'm starting to feel that weakness I felt the time I had an internal bleed!

Well don't be stubborn my friend! Do not ignore a possible symptom, please?

I feel bad for you. It is the fear that everyone has-- the crash. If I were you, though, especially since you've had an internal bleed, I'd go to the ER. They can't force you to take IVIG or Prednisone. Just wait for a hematologist to show up.

Sorry you're back on the roller coaster, Julia! I did my Rituxan 3 years ago this year and so far so good. Had a couple of drops, but they came back up on their own.

Sorry to hear your back on the rollercoaster ride! Hope you get treatment soon!

So it seems my drop wasn't finished. I ended up going to emergency and spent 2 days in.

My story!

The idiot doctor at emergency does my count tells me it is zero and than he makes me stay overnight and does nothing to help me. He informed the nurse that I was out of his scope of practice. So I wait for the internist to come in the morning. He's at a loss as to what to do! Not like I didn't tell each doctor and nurse all you need to do is give me winrho/rhogam and than send me home. So the internist doesn't know what to so he call my old hemo who says given her winrho and that should bring her counts up. This doctor says I have to stay till my counts start to rise. So I have to stay again another night. Today my counts come back at 10 the new internist calls my old hemo and says should we retreat what should we do??

He say her counts 10 it will continue to rise send her home! Wasn't that what I said?????? But hey what do I know!!!!

OH and my count wasn't really zero the machine said it was unreadable so really that just meant my count was under 5. I guess the lab guy doesn't know how to do a manual count!


Anyways I'm black and blue but i'm home!! I AM SO HAPPY TO BE HOME!!!

Julia - how frustrating! I'm glad you are home and on your way to safer counts! I was thinking of you this morning, I'm glad you checked in.

Glad you are home and counts improving. Sounds like a frustrating 2 days!

I do not know what was more frustrating about that experience. The fact that I knew more than the doctor or that he wouldn't listen to me.

Here's some examples of why I found it was so frustrating:

1. The doctor says you can't leave because you need treatment but yet does nothing.

2. He says you can bleed spontaneously! duh!!! What do you think petechiea and purpura and bleeding gums are?

3. The doctor tells the patient she could have a brain bleed and die; but than does not treat her!

4. I was being admitted (but no beds available) so I'm left in emergency I'm getting hungry and no one is offering food. I sit back and watch others get food yet nothing is offered to me.
So I ask and get the following types of responses:
Emergency patient don't get food only the admitted ones do! Oh that is right you have been admitted why didn't anyone bring you food I'll have to look into that! (thanks for looking into that but i'd rather food)
I'm sorry I'll have to asked the doctor if you can have food? Not sure if you can have food. (oh sure make the already weak person weaker by not feeding her)
Oh didn't they bring you food? (Who my invisible visitor???)

the best one: We don't get breakfast here till about 9am (really cause its 10am)

5. Since they won't feed me I decide to spend my money on food instead of the parking meter. Only to get discharged and find a parking ticket on my car for 25.00.

6. If you are actively bleeding than I could treat you! Really bleeding gums and growing hematomas are not considered active bleeding?


I could go on and on with the events that happen but I will save you from my rantings!

When I see the my old hematologist and or the new one I am going to ask for them to type a note explaining that I have ITP and that I am monitored by a doctor. Than give instructions on what medications and how much is needed to treat me. Than explain if he signs it than they will treat it like an order. That way if I have to go to emergency this scenario won't happen again.

Wow, that is ridiculous! They could have at least not left you hungry.

It is frustating when we know more than the doctors. Unless there is a hematologist right there you are out of luck. I hope any way that the winrho is working.

I rarely like ER doctors. They are good for many things, but sometimes just plain do not know what they are doing. Been there! He should not have scared you by saying things like that.

As for not getting fed, all hospitals are like that and I just don't get it. I've had them hold back my meds with is just not acceptable. They have to be taken at certain times. I know now to keep them with me and just take them myself.

Sorry it was such a bad experience. Makes you not want to go there!

I'm sorry to hear about your experience. I had the exact opposite experience. I was called by my doctor at 5:30 on a Friday night and told to go to ER immediately with a count of 4. I was thinking oh great this is going to be a nightmare. I went to the closest one which I had not been to.

This was when i was first diagnosed. Well the ER doctor saw me within 15 minutes of arrival. I was put in a trauma room because there were no open beds and the staff apologized for there not being a tv in the room.the er doc was completely freaked out and I was in ICU by 8 pm. I was not allowed to even go to the bathroom by myself for fear of falling and checked on every 20 minutes. I was totally freaked out and confused because i did not feel bad and thought icu should be used for gravely ill patients. Luckily the icu doctor knew her stuff and they started IVIGs and dex pretty quickly. The nurses were very caring.They gave me ambien to sleep. The hema came in the morning put me on prednisone and with counts of 50 sent me home.

I was like I was just in icu and am now allowed to drive myself home in snow? Pretty crazy.
The cool thing about icu was that they had room service so you could call for food 24/7. I will def go back to that hospital if ever needed. It was the Cadillac of hospitals.

Funny how different doctors react. I think their reactions set the tone for the patient, which can either be good or bad.

I think it's ridiculous how doctors can treat patients at times. I mean, I don't think anyone can understand thanxiety thwt goes wit being sick, not just with itp but with anything. If I were a doctor I would be monitoring patients properly but most doctors are overworked and end up looking for three or four patients at a time. It's just crazy how doctors can be. I hope you feel better and gt those counts up.

Vdeutsch85,

Was the food good? and do you have the address???

Jeffrey

The food was good....I felt like I was in a hotel. I completed the survey the sent about my stay and gave all excellents. It's in Cincinnati!

I will keep it in mind! I am in the Fort Wayne area! LOL

Jeffrey

Keep your head down tomorrow, we are supposed to get clobbered with storms up here!

Vdeutsch85 wrote: The food was good....I felt like I was in a hotel. I completed the survey the sent about my stay and gave all excellents. It's in Cincinnati!

By the way, my wife said to thank you ever so much for the good comments to the hospital. She is dietician for a very large hospital here and they do try so hard for the patients!

Jeffrey

She said that you may come for Christmas Dinner! LOL

Jeffrey,

Kudos to your wife! That would be a very challenging job. Thank her for the invite!

Hopefully the storms won't be too bad tomorrow... we are supposed to get them too. I will be doing a lot of driving for work and a late afternoon hema appointment.

My Maltese likes to chew his nails ( he is very anxious like his mom) and they are like daggers. Well he scratched my arm multiple times even pulled up skin but no petichae around it which usually means good counts....we will see tomorrow!

My dogs scratch me too even when nails have just been cut. I constantly have bruises from that and I have normal counts.

Good luck with the storms. Sounds like we're all going to get pounded!

Well I am up from 85 last week to 174 this week. I am going to Cleveland Clinic on Monday again to see my ITP specialist to see if I can ween off cyclosporine possibly ( my blood pressure has been very high the past few weeks). I am also going to see how he wants to proceed on my Nplate doseage. It's been a nice three weeks not feeling achy and fatigued all the time. Even going to gym four times a week. Hopefully it will continue!

The storms are supposed to hit here around midnight but meteorologist said not as bad as originally expected.

Sandi,
Every bruise and scratch from my dog is completely worth it. For every one scratch he probably gives 500 kisses. I really feel like my dogs have been great therapy through this whole ITP process. I am glad they are small though....don't knock me over or anything like that.

I love mine too! I can't imagine life without them. Mine are 50 and 60 pounds...not too big but not small either. They are both loving girls but jump when they are excited...can't break that!

No scratch from any dog would be worth it too me. I am not an animal person I learned that very early on in life. As I get older I see so many people who are like me but get a dog than the poor dog suffers.

I envy you guys! That said Give me a lizard and I'd be a happy camper. But no scratches! lol


PS: Great news new count is in 151 and i'm now an active patient of a hematologist. I now have a prn lab requesition and an appointment for 4 months from now.

My old doctor is going to try and contact the doctor that ran the study to see if he can get me Rituxan. When he realized I was symptom free all this time and when random checks were done and I was over 100. He was like winrho work good for you but Rituxan is the drug you want. If I can get them to give it too you would go see them! I said sure!

Julia - that's all wonderful news! How odd that as soon as you came back here your counts dropped. You did have a good, long remission from Rituxan so I hope you get another one!

Lizards carry salmonellosis which can be dangerous to immunosuppressed people. You'd have to be careful! My dogs don't suffer, they are loved to death! I wake up with my chocolate labs little soft face next to mine....it's the best feeling!