Spleen out on 11/25/13 doctor drop me as patient

Ok, I had my spleen out on 11/25/13 and went for re check and counts today. (still have my drain in and will see surgeon on 12/5/13 to get it removed) Well the counts came out to 24k, of course I wasn't happy with the numbers. So the doctor came and he wanted me to go on one of these medications Cytoxan (iv), Danzaol, or Imuran.

First these are some of the medications I wanted to try before taking my spleen out. He said they can only be used after spleen is removal (WHAT!). Also from reading everyone else stories it can take time for the spleen removal to work (right?). He said I would be wasting time?!?!

I have been thinking of changing doctors but wanted to be a little more stable and wanted it by choice and not be abandoned by a doctor...(at least that is how I feel).

Has anyone else had this problem for speaking their mind and questioning things.???

Amber, it is usual if the splenectomy has worked for the count to immediately go way, way high.. too high. So no, it isn't really usual for it to take time to work. Sometimes it takes time to settle at an okay count so it may pay you to wait a bit and see if it's going to fall any lower or settle at an acceptable level.

If it becomes necessary, of the options given to you I'd take the Imuran. But I do think a new doctor would be a good idea. Yours has been odd all the way through.

Ann I don't think you understand (HE DROPPED ME) can't go back he will not see me anymore. He canceled the Iron infusions I was set up for this week and next. So I have no choice but to find another doctor, because I don't have one anymore.

It has only be 8 days since my surgery and still have the drain in.

No, I don't understand. You clearly said "So the doctor came and he wanted me to go on one of these medications Cytoxan (iv), Danzaol, or Imuran."

So why did he say that if he won't treat you anyway?

Ann
Sorry I'm sure it didn't come out the way I wanted to write it, just upset and now really lost...

We were questioning him and what he wanted to do. I thought I had every right (since it is my body that is being treated) to have questions and to question the things he wanted to do.

He came in (talked about medications) and said what he wanted to do (he is the type it is his way or the highway), well he sent me down the highway that is for sure. It was like I didn't have a say so, choose your poison....

So I can't have questions or question him on what he is doing... I wanted to try all that before you took my spleen, I can't get the spleen back and now I have to recover from surgery and look for a new doctor....

This year has been horrible and sure hope next year will be better.....

Amber:

I think you are better off with a new doctor. This one has not been practical. You had every right to question him.

Ann is right, counts can go up to a million within days when a splenectomy is successful. That can drop at some point too, but low counts off the bat are not indicative of a success. Your counts could settle at a safe point, such as 40k or so. That might take time.

The whole iron thing doesn't make sense either. If a person is low on iron, they get infusions pretty quick....not weeks later. You're either low or you're not and if you are, it's pretty serious.

Stay calm and make some phone calls tomorrow.

Amber,

Thinking of you and I know you will get through this trying time. I agree with Sandi, you are better off with a different doctor. Is there another hematologist near where you are? I do think that is awful for him to drop you so soon after surgery.

There is another practice in the same area waiting on call from them. The doctor is in on Monday's and Thursday's hoping she will see me this week since I'm off due to the surgery.

Your surgeon should manage the drain and incision. You need the Hemo for counts. None of the options he gave you will work quickly if they do at all, so at this point there is no rush. If you get into trouble with counts, you know where the ER is.

Just be careful around sick people. Remember, you had vaccines too soon after Rituxan and they may not be effective. Add that to the Vincristine and splenectomy all at once, and you get a high risk of infection. I'd hate to see that happen after all this.

amber I'm sorry you are going through this. As Sandi said the surgeon will [should] oversee your care until he feels you are ok to be discharged from his care [my hand surgeon won't discharge me for a year], the incision and drain are what he did so what he should take care of.

Are you having symptoms from a 24k count?

I recently "fired" my PCP because he wouldn't stand up for me - think I will like my new one. Maybe as the others said it's for the best to be rid of this hematologist - you'll know soon enough.

Take care!

No symptoms with counts but iron weak and white. I get winded easy if I go to the mail box.

I'm surprised they'd even do surgery if your iron is low, or they could have dealt with it when you were in the hospital. None of this makes sense. Would it help to take iron?

I guess it wouldn't hurt at this point to take a small amount of iron. When I get the ok to drive from surgeon which should be Thursday.

Amber,

As I think I have shared in the past getting a new doctor has basically changed my life with ItP. I was hopeless and my doctor had pretty much given up on me. I now have a doctor that truly cares about me and thoroughly understands ITP. He also understands that I read up on all treatments and does not talk down to me. I can call his office and be called back within 20 minutes. I'm not sure where you live, but maybe post and see if any members have any recommendations in your area.

Also, I remember a lecture at the conference a doctor talking about certain treatments such as IVIGs and Promacta not working prior to spleen removal and then being more effective after spleen removal. It would def be worth asking about if your counts drop.

Also, you said your counts of 24 are not producing symptoms, so maybe if you stay in that range you'd be ok without treatment.

Were your iron counts normal when you left the hospital? I agree with Sandi, I don't know why they would release you without figuring out why it is low and getting it up.

I hope that you start feeling better and please see if you can get your iron checked and figure out why it is low. Keep us updated!

The hospital was under the impression that the doctor was going to do iron infusions. Which the doctor dropped me so where does that leave me ( out in the cold). But yes I would think if it is that low the hospital would have done something but I was under his care and the surgeons.

Amber,

All I can say is wow. I'm sorry to hear about your story. All I can say is I hope you find a great doctor and feel better!

Amber,

I know how hard it is to find a good dr and nurses. And it's time consuming trying to find them. I have seen over 4 hema before I decided that the 1st one is the best fit for me. However, there are still times where we disagree on my treatment...then I bring my husband along. When my hema sees my "enforcer" he just laughs and knows that I'm sure serious. I have expressed my concern that he might drop me b/c I see myself as being difficult. He tells me that will never happened...but I have to have faith and trust in him too. Hang in there...you have gone through so much in such a short time. Maybe it's time to take a step back and try to slow things down.

I am so sorry to hear about the doctor or and your counts after surgery.

It certanly seems like an awful year. I was diagnosed in 2007. That was a bad year for me. We kept saying 2008 will be great.

Let's try to come up with a slogan for 2014! I can't think of anything that rymes with 14...

I hope you get a new awesome hematologist.

I had a procedure done when I was younger, unrelated to itp, I had some complications from the procedure and scheduled another follow up appointment with my Dr to discuss some questions I had and what my options were for the future. I sat in the waiting room for over an hour before the receptionist told me that my appointment was canceled and the Dr did not want to meet with me in the future. They then gave me my medical records and I walked out of the office just in shock. I was very young and I felt mortified by the whole experience. I didn't even get to ask any questions so I can't believe that I was being "a difficult patient". I think Drs occasionally do this to people simply because they can. It's like when you buy a new car and the sales guy is your best friend throughout the process but when you come back in when you need repairs done the sales guy could care less about your problems, he's made his commission and you need to go to the repair dept. Maybe the Dr also just doesn't want to deal with thinking that he wasn't able to help as well. regardless it's a totally inappropriate cowardly way for a dr to conduct themself and it can cause a lot of additional pain and suffering. It's so much more traumatic for you to have to get blown off so callously after you trusted someone with something as important as your health. I felt like such a fool for having such blind trust in some guy in a white coat. My extreme skepticism towards any kind of medical professional that I developed from this experience has been helpful a number of different times since then. Don't beat yourself up for this. This scenario probably happens to a lot of people.

This is just shocking treatment!!! Do you have a regulating body for doctors in the US? I'd be complaining if that happened here in the uk.

I'm so sorry you have this to deal with at such a difficult time. I'm gobsmacked your doctor has left you at a time when you're still so vulnerable after surgery - both physically and emotionally!

I agree with others that he sounds like a crappy doctor and I really hope you find someone a LOT better. You absolutely should be able to question & discuss things. You deserve to have someone you trust working FOR you.

Good luck hun - keep us posted

CBC at !:30 then 2:45 drain removal, all for tomorrow.... Was just looking at my medication for pain, well the one the surgeon put me on had 500mg of aspirin (which is horrible for platelets) and the new one only has 375mg. So at least that is one reason why my counts are low right now. I stop taking the other medication yesterday and going to stop taken the new on today and try just Tylenol. I know the medication will stay in my system for 3-4 days but as long as it doesn't destroy anymore platelets the count should go up. Of course I took my 3:30 pill and then found out all this, but that should be my last one. Don't care at this point if I'm up all night and can't get comfortable, at least I'm not killing more of my platelets......

CBC is being done my regular doctor so it will take over night to get back. I know that type of medication stays in the body for 3-4 days on drug test but platelets? It will be almost 24 hours since last pill, I would think that would be good. I feel much better today than I did yesterday, I could tell count was down but my feels can be wrong at times.

Amber - aspirin doesn't lower platelets. It causes platelets to be less sticky, something that you do not want to happen with low counts. Aspirin is a type of blood thinner. What drug did he give you that has aspirin in it?

I don't know, it seems that you have two doctors who have really dropped the ball. Get done with both of them. The Hemo dropping you seems to be a blessing in disguise.

Surgeon gave me Lortab (stop them yesterday but been on since Thanksgiving and took every 3-4 hours)

the doc that dropped me gave me Perocets yesterday and took last one at 3:30 since I learned that it also had aspirin in it. but took them every 6-7 hours since yesterday at 3

As I said, those meds shouldn't affect your platelet count, but I'm surprised you don't have symptoms if you're taking aspirin. I guess that's good. It would probably take a few days for that to get out of your system.

it said it can take 4-5 days to get out of my body

Amber
Percocet does not have aspirin, only codeine and acetaminophen. Those should not affect your platelet function.

Were you able to get an appointment with that other hematologist?

Glad you are feeling better!

It was just the surgeon then. :huh:

Hi Amber, I sure hope things get better for you! I am not sure how low your iron is but I did want to say that I think fatigue and feeling winded walking to the mailbox 8 days after splenectomy is normal! Even with laprascopic surgery! I know I sure did! It took me far longer to recover then I expected! I did hemmorage post op and get transfusions so that had some impact but I think sometimes when surgery is laprascopic we expect too much of ourselves after and physicians and everyine just make it seem like it isn't a big deal but really- you were already worn out before the surgery, stressed to the highest level, and then you add in anesthetic and surgery! It takes time!

I know for me I went back to work after two and a half weeks because I felt I should! I didnt knkw to let myselfrest and recover but man it takes a toll and iI wish i had allowed myself to do that a bit! Like you have posted previously, it isnt fully time "off" between running to the lab for blood counts, dr appointments etc...

I know this doesn't relate to the dr dropping you but may help with the worry about the iron and also just sometimes helps to have someone acknowledge and remind you all your body has gone through without saying "it's just laprascopic"!

I sure hope the new hema can help! Your luck has to change sometime!!