dr being too worried

I am very new to itp (diagnosed in april 2011) and had 1 visit with the hematologist and he said if I get below 10k he will hospitalized me. I've been hospitalized twice so far and very afraid it'll happen again next week bc my count was 90 on Monday and last time it was at 95 it dropped to 6 in like 5 or 6 days. I have two young children and I want to be home wihth them. My 3 year old begs me not to go to the dr in fear I won't come home. Is the dr going over board? I don't know what to think. The hematologist that said he'll hospitalize me is on vacation this week and I really wanted another test b4 Monday but they'll only do it Friday at the soonest. It stresses me out bc I don't want to leave my kids. Thinking of being hospitalized is making me crazy about my counts.

I would call your Healthcare facility and see if you can get in asap to have your Platelets checked. Explain your concerns. I see no reason you should not be able to do this. Assure your kids that if you are Hospitalized again, you will be comming home!! You ARE NOT GOING TO DIE FROM THIS!!!! The Dr. is just being cautious. Some Dr's hospitialize, some do not. I think most do though with low counts.
Alot of us deal with counts under 10k. I have been as low as 2k with no hospitalization. I was put on Prednisone, sent home and told to rest. I was also told not to drive, fall down or bump myself as this could cause internal bleeding.
I would definatly insist on getting your counts checked.
Keep us posted.

Hey Destiny, how hard it must be for both you and your children to be in hospital. Do they give you treatment when you go to hospital? Maybe you could have a talk to your Doctor and come to a compromise about when to admit you and when not to.
I go into hospital when my counts are really low but I tend to bleed a lot so I am ok with this. I know a lot of people don't go to hospital with low counts but this seems to be something that all Drs and ITPers differ on.

Let's hope your counts don't go down and there will be no problem, one thing I have learnt just because your counts do something once it won't necessarily do it again. Check for symptoms and try not to worry too much, when your first dx counts tend to be a bit all over the place.

Good luck with your next count, let us know how you go.

Well I don't think I'm going to die and either does my son but he knows that twice I didn't come home for several days so it really upset him. My other child is only 18m and she's so attatched to me. Its just so hard on both sides when I'm in the hospital bc they hardly let me visit my children and my kids arnt old enough to understand. They said that getting a cbc done any sooner than Friday isn't a long enough period of time to show an accurate drop in my platlets. I don't see how though. ITP is so fustrating. I hate how obssessed I get with bruises and counts bc of the threat of leaving my babies and having a stay at the hospital.

Destiny, the obssesion will pass as time goes on, but I also understand the impact on your family this is the thing I really hate about ITP it must be very hard on your children. Why are the children restricted from seeing you at hospital?

What are you using to treat? It might be time to try something different.

My doctor did not hospitalize. At 3k, he suggested I go back to work and just do my normal things. How are your symptoms at low counts?

Why won't they let you visit your childern? That does not seem right. What kind of visiting policy do they have? Understand the Frustration. This will pass and will get eaiser. What is your treatment?
I do not agree with the not enough time to get an accurate count. Counts can drop quickly.
Sandi, I am suprised that you were allowed to go back to work at that count. At 2k I was told to stay home and sit still as he was concerned about falling/bumping myself.

My last time in hospital was the quickest as was in on the sunday on 4 and was allowed home the monday without a test.... though I clearly wasn't getting worse. I was issued the steroid package and appointment and the usual 'call-in' instructions. Innocently or otherwise - who knows I didn't ask about what I should/shouldn't be doing. I am my own best assessor at that. I go to a drama group and in that we play various ball games and balloon games.... I played because I made sure they weren't using a hard tennis ball. Well it a tennis ball that 'dead' but still hard when hits you by accident. That was the only clarification I gave myself and otherwise lead a full normal week for me with double relish because I had the freedom to. Being throughly aware with the previous consultant I would have had 5 days of boredum at the minimum.....

I can understand your frustration regarding the kids... I am a single mom of a 14 year old and when all of this happened the 1st time he was 8 and in the 3rd grade. I went to the hospital for chest pains and they wanted to do a CAT scan, but had to test me to make sure I wasn't pregnant... anyways when they got my platelet count back it was at 9K and they would not release me... my first thought was okay my kid is at school and what am I going to do?? Thank God for my parents who stood in the gap for me... but it was very scary for him not knowing why grandma (who never picks him up) is there at the school waiting for him. I ended up spending 5 or 6 days in the hospital because my platelets ended up dropping to 5K before deciding to go back up (they were creeping even with the added prednisone, platelet infusion and iviG)

I know it is a little too much for your 3 year old to understand. I do pray that your numbers come up soon enough, try not to stress, because I am sure that is not helping either....

*sending platelet boosting vibes*

Does sound as if your doctor is over reacting. If he is not experienced with treating ITP then maybe time for a second opinion. You really do need to have a doctor that you feel confident with. Mine has always made me feel that I'm fine. I've never been hospitalised and have had counts under 10 many times. I just carry on working and so on as normal.

Dean:

I wish he had told me to stay home! No such luck. I had to go to work then because if I had the doctor telling me to go, I had no valid reason not to. The only times I ever missed work were when I had Rituxan because it took so long. I even had Win-Rho on my lunch hour and flew back to work to get there on time. I think I went in late one day because there was an ice storm and I didn't want to drive in it with counts under 5. Other than that, ITP was never an excuse to not be at work.

Sandi, I never had an actual Dr's excuse due to low platelets, I just called in sick when I was really low. To much of a liability also. If I fell or something on the "clock", the facility would have to cover workers comp. Does your job not allow you to call in sick? I work at a Hospital so calling in due to low Platelets is not a problem. One night I tested 8k and was sent home. One of the Dr's said you go home and stay there. This was over Thanksgiving. We were supposed to travel, only 50 miles. He said if you get in an accident you could die. So I stayed home. Treatment on your lunch hour and back to work, you are one Tough ITPer.hehehe
Back to the topic,
I hope your counts rise for you and your kids. Try to stay positive and not to stress yourself out.

If I'd gone sick with a low count, I'd never have been there for the first three years after diagnosis. I couldn't see any reason not to go in either. I wasn't as good as Sandi though and used to take my time at haematology appointments strolling into work a couple of hours late each time. I still had to do all my work so it didn't really make much difference but I didn't feel much loyalty to that workplace so it felt like fun.

Dean:

I have 7 sick days a year, but I rarely take them. I usually use the time for doctor appointments. My work load is so heavy that if I take off, I end up with double the work the next day and have to stay late to catch up, which is harder than just going in the first place.

My daughter works in a hospital too and they give her a hard time for missing due to her health (she has Graves). She rarely ever misses, but they sure don't want to hear it when she has an appointment (her doctor is in the same hospital she works at).

It's a tough world out there! At least where we live....

Well the area of the hospital i stay in is with the cancer patients and others who are very ill bc when i recieve high dose steriods i get a rapid heartbeat and so they like to monitor around the clock and they dont want myvkidsvthere do to their risk of getting others sick and they dont want them exposed to any chemicals. Ive gotten steriods and ivig. He says next treatment is ritnux (cant remember how thats spelled or pronounced).

The only bleeding i get are heavy bruising and the blood sores in my mouth but no active bleeding. No nose bleeds or anything like that.

I hope that this thread has helped you realise that we all have different experiences and whether our Docs are overreacting or not is hard to assess. Ann stays at home, I come and go.... though some of it does depend not just on the count but on the bleeding and they do like to keep you in when 'bleeding' For your own safety really because een a simple knock means it be harder to stop and if you are in the right place they can deal with it there and then.

Its hard and frustrating at first and I have just changed consultants so being treated like a new patient again in a way as he finds out what works. But am 16 years further down the line to you and know what happens to me usually.

Are you still in hospital? It can be rather a bind but I would ask the next nurse you see about why your children cannot visit. It may be just misunderstanding somewhere along the line - it often happens? Does one of them have a cold or infection? That may stop a visit because wouldn't want to make you or others ill with an infection on top. But if you are stil in hospital - ask the next nurse you see and say how upset you and they are about not being able to visit you etc.
If you are not in hospital at the moment you can use this time to find out if something has simply been misinformed. How you doing right now by the way

Well I talked to many nurses, the head nurse, and the person in charge of the whole floor and they were very clear as to why my kids were not allowed. They said there are too many chemicals in that floor to allow the children, they were more concered about the chemicals than anything else. My last count from yesterday is 55. My next cbc is Tuesday and I see hema on Thursday so I'm keeping fingers crossed that I stay above 10 until then at least. my very lowest count was 1 and that was april 1st when I was diagnosed. Its been a rollercoaster since. Thank you all for your answers and support.

If you were on the oncology floor then yes they are concerned about the chemicals - the chemotherapy drugs. If you have seen chemo being administered in a hospital then you would know why and I can understand why their reasoning.

Next time you have to go to the hospital - and I hope you never have to go again!! - and you meet your children down in the lobby or in the cafeteria or outside in the grass, there are other locations if you are mobile.

I hope your count is a good one on Tuesday - good luck to you!!

Yes, the chemicals, I overlooked that issue. When I was given Rituxan one nurse dressed up in full chemo gear for the set up and some just wore gloves.
Hope your counts rise. Stay positive, the rollercoaster will get easier.

destinygreenfield wrote: Well I talked to many nurses, the head nurse, and the person in charge of the whole floor and they were very clear as to why my kids were not allowed. They said there are too many chemicals in that floor to allow the children, they were more concered about the chemicals than anything else. My last count from yesterday is 55. My next cbc is Tuesday and I see hema on Thursday so I'm keeping fingers crossed that I stay above 10 until then at least. my very lowest count was 1 and that was april 1st when I was diagnosed. Its been a rollercoaster since. Thank you all for your answers and support.

Yes, good point Melinda
Some wards will let you walk about and meet your children in the coffee shop - far better for you if you allowed of the ward for a short time. My local hospital allowed me to go outside when I had septicemia. But I do remember once asking permission to go off the ward when had low platelet count and they weren't keen. Said I might fall over and injure and they wouldn't be there to stop the bleeding etc. I accepted quite naturally - though was allowed to go to church well the hospital chaple on the the sunday... so i suppose who you ask perhaps. If you ever need to go in again or still there, ask a friendly nurse if you can meet your children in the hospital coffee shop or if all ele fails in the lift area just beyond the ward door. But do make sure you ask because then they know where you are and you know you got the permission.... otherwise they may send out a search party for you quite literally - and be harder for you to go out of the ward next time. A lot of patients are able to walk around the hospital. It might be that they want a friend to come up to the ward and take you down to the coffee shop... etc but there hopefully is a way around it. I am on that ward too in sheffield and I have seen children visit - but am in England and different ward staff have different ideas. Not many young children visit but seen a few around
good luck and hope you do get to see them

Well my count actually went up without any medication and the nurse was quiet surprised as was I. I see the hema Thursday so we'll see what happens but I'm not worried anymore. My count today was 141 an that's great. I wonder if it was bc I just got a cold and maybe it distracted my immune system to that instead or else I just got Blessed. Either way I'm happy. Just to answer a question posed in an earlier post - when I'm hospitalized I am not mobile by hospital standards bc I get a heart monitor bc the steroids cause a rapid heartbeat and they won't let me leave the floor. I visit my children in the visiting room of that floor, but Im not in the hospital currently so it doesn't matter anyways. I was just trying to vent my fustration that my oncology clinic was upsetting me bc thy didn't want to give me an earlier CBC and I was afraid of hospitalization for fear I wouldn't see my children for several days. ITP is so unpredictable and I would have never guessed my count would spontaneously rise without any medication from 55-141 in 3 days! That's amazing! It just goes to show that I will learn as I go though the questions will still be many and the fear is starting to slowly fade. God Bless this website, community and everyone who is struggling through an illness.

what good news for you and yes colds/viruses can affect the counts and it may be a one off episode for you. though they will watch you for a time most likely. I feel so happy for you. Good news.