Whoops . . . again!

Just got home from hospital after another nose bleed drama. Had a bad head cold, woke up Wednesday am with blood nose which wouldn't let up. Dear daughter who was visiting with her 2 little boys, packed up & took me 2 1/2 hours back to city to a private hospital.
The Dr. in emergency packed my nose (ouch) & gave me platelets. (count was 10) Then . . . "we are sending you off to the major public hosp. as we don't have ENT facilities here". What the? I specifically went there because my Physician consults there. By that stage I felt unable to argue, so off I went.
Spent next 4 hours in emergency having necessary paperwork etc. & more blood tests done & waiting for a bed, off to Cardiac Ward at midnight! Poor old hospital is very dingy, new one being built. Against my earlier determination I am now back on steroids (count went up to 19 then today 67). There was some discussion about me returning to the private hospital because the haematologist was reluctant to suggest treatment seeing I am another's patient (his inference was 'if you don't want to play my game then go elsewhere') He gave me a hard time about having my spleen out, as usual.
I felt like a ping pong ball between a rock & a hard place. How I wish I had you guys there with me to advise & support me! So, now I am on Pred. for a few days until I have a follow up appt. Tuesday with my Physician, when hopefully he will let me lower the dose.
Now I am home I can't believe I just went through all that again (repeat of 3 years ago). It was the pits & I am waiting for the monster deep within to emerge. My family has been very loving & supportive - my daughter especially kept reminding me how things could have been a whole lot worse in a different situation. For now I am grateful for having somewhere to share & others who care.
mj

PS I am going to put a note on my door:

Beware the [strike]dog[/strike] bitch on steroids!
Please be prepared to make your own cuppa if necessary.

PPS Just kidding . . .

Wow what a journey. Glad the numbers are up hope you can lower pred when you want too. (never liked that drug).

You said: "There was some discussion about me returning to the private hospital because the haematologist was reluctant to suggest treatment seeing I am another's patient (his inference was 'if you don't want to play my game then go elsewhere') He gave me a hard time about having my spleen out, as usual."


I wish doctors leave patients alone if a patient says I do not want something that should be the end and the doctor should say. Well than lets look at other options.!

That sounds awful! Hope you can lower or get off the pred. I am sick of being on it myself, I need that same note on my door .

Hope the doctor will work with you and not continue pushing splenectomy.

Sorry to hear that, MJ. You were doing so well too! I hope you get off of Prednisone soon and your counts stay safe.

MJ, you said "another" nose bleed drama. How often have you had nosebleeds, and can you see a pattern in getting them?

So you stayed in the hospital two days with a packed nose? Did they remove the packing before they sent you home?

I'm trying to get all the info possible on nose bleeds!

Karen

Thank you friends, I knew you were out there
Haven't stopped thinking what I 'could've, should've' said & done. With all the associated drama I lost my confidence & forgot my intended course of action. Last time I responded well to IVIG, but they wouldn't listen. . .

Karen - I have had ITP 9 years. Only 2 random nose bleeds, packing was removed after 18 hours. The first time a little cartilage damage was done & had to be removed a few weeks later when I had the blood vessel cauterized. Apart from being a bit uncomfortable still, I'm hoping this time is OK & no need for cauterization.
Usually I try not to eat or drink anything too hot, don't blow my nose too hard & if a dry atmosphere, use nose oil drops.
mj

MJ!

See what happens when we don't e-mail???? I am so sorry for your trouble. IMHO I would think that your counts are acceptable with the prednisone, 67 would be great for me! LOL Anyway I don't blame you a bit for not wanting your spleen out. Just run with it the way it is and see what develops. As for the doc, look around for another, find one you like and trust. They work for you, and in reality (my opinion only), they are a consultant to us. We carry the burden, not them. They advise, guide, diagnose, and assist us, but they are not in charge (again my opinion), we are!

You hang in there MJ! I will be thinking of you! The family all well? Been fishing? I am getting vegetables out of my garden! Keep me posted!

Jeffrey

MJ sorry to hear that, you have said before you hate the prednisone thing... Hopefully you will be off it soon. Wasn't there a hot bath involved last time, was it the same this time.
I hope you and the family are good, been pretty cold up here in NSW but its winter I suppose

MJ sorry to hear that, you have said before you hate the prednisone thing... Hopefully you will be off it soon. Wasn't there a hot bath involved last time, was it the same this time.
I hope you and the family are good, been pretty cold up here in NSW but its winter I suppose

Jeffrey - thank you :silly: You always put a smile on my face! Gradually feeling more weird on Pred & hoping it will be a short course.
So nice to be home, looking out over the sea & walking along the beach. Greg went fishing last week & caught 12 lovely whiting. Others are catching calamari. Was involved in community planting of 500 native plants in the park across the road 2 weeks ago - it will be wonderful eventually.
Picking kale, cos lettuce & baby spinach.

Milly - thank you too. (I see you had a wobbly & pressed submit a few too many times!)
No hot bath - just a congested head. Still coughing.
Family all great - 7 little boys keeping life very entertaining. Typical, mild winter here, lots of lovely rain but pleasant enough in between to get out & about.
Hope things are still good for you too.

mj

Yeah Mj on my Ipad and it kept saying that it didn't submit...Sandi you may want to delete some of these, I tried but can't ...sorry guys but those of you that know me know I am a bit challenged with technology.

7 boys wow that would keep you busy. I wonder if there will ever be a girl to join all those grandies.

Sorry again for the repeats..I don't have a stutter or anything

:lol: :lol: :lol:

Have been sitting here for hours trying to work out what to do next. Am soooo . . . confused. You'd think after all these years of being on here I'd know what to do.
In hospital I was rattled again when told I should have my spleen out, that we don't need it & that new treatments are being developed that are only available if you don't have a spleen.
I told them I responded OK to IVIG last time but ignored.
I need to be more informed and assertive by Tuesday when I see my Physician again.
Mean time I am feeling v e r y strange on the Pred. :S
mj

That pred head .... I don't think I will ever forget that awful foggy feeling, I feel for you

Go with your heart MJ, you seem like you have handled this for years now and have done really well. I don't know what I would/ will do if I ever have to make this decision, I have thought about it but the only thing I come up with is I never want another 12 months of prednisone and that foggy, crying feeling.
Maybe wait and see what the doctor suggest, let us know how you go

Hi MJ, I have missed you, and when I saw your post I really wanted to phone you. I have been trying for the past couple of hours but don't seem to be getting anywhere. Tried the number in my phone contacts, but I think it maybe your old one. I looked at the White Pages and found another number, but it keeps telling me that it is not in use. Rang the international directory and they said it was a cell phone number. Do you have a landline number? If you do, could you please PM it to me. I would love to catch up with you and chat xxxx

Hello my dear Aussie friend! Glad you found us & had a lovely long catch up.
Thank you for all your information & advice re promacta - I feel a lot more tuned in.
Take care & I look forward to staying touch,
love Meredith x

Hi MJ!

Just a little worried for you! How you doing? Have a good weekend?

Jeffrey

Ah Jeffrey, you're so kind.
Apart from coughing myself inside out, I now have the pred jitters & foggy brain (some would say 'what's changed?').
Went for a blood test this am, Physician appt. tomorrow in the city. All good.
mj

PS: The best thing about this morning - Greg has taught our 6 year old grandson how to play draughts (checkers). We tried in vain to find him a nice set for his recent birthday. We have a local 'op shop' & I popped in for a look & I found a practically new classic set for $4! Wrapped it up & delivered it to the farm - Grandpa didn't get much office work done then!

Just back from a day trip to see Physician. Platelets . . . 220 ! Ta Da! I only need to sniff the dreaded pred & they go mad! Nevertheless he has agreed to reduce the dose slowly.

Promacta only available under very strict rules & $1000's. So gave that a pass for now.
Dr. wants me to have my nose vessel cauterized.

After a reasonable chat he grilled me about 'just WHY won't you have your spleen out!!'

Came away feeling like a cantankerous old woman OR a naughty child - not nice.
But I'm home safely & I didn't hit a kangaroo on the road :silly:
mj

Great news MJ!

Just do a nice slow prednisone taper and relax. Don't worry about the nose. Has anyone ever told you about packing gauze under the upper lip to stop a nose bleed? The cauterizing does not sound pleasant. And, don't worry about making your doctor mad! There are lots of doctors but only one MJ! You do what you want to do! I like my body parts and I am planning on keeping them just as long as I can! LOL

You go and have a great day! I have to come up with something for supper. I am thinking of garlic roasted zucchini, squash, and mushrooms with baked tilapia. Tell your husband hi for me! Are you thinking of coming back to the states?

Jeffrey

MJ:

I don't know how things are where you are, but here, all treatments are available for people who still have their spleen. Find out what those treatments are, and if you wouldn't do them now (too expensive), you probably wouldn't use them if your spleen was out either.

There are lots of reasons not to do it. I can list them for you if you want, unless you are really considering it.

The nosebleed could have been due to the blood vessels in your nose and not solely due to ITP. Lots of people that don't have ITP need cauterized because they have nasty nose bleeds. Of course, ITP doesn't help matters, but having that done could fix the problem. My niece (does not have ITP) used to have nasty nosebleeds if someone just touched her nose. She had it cauterized and never had a problem after that.

You have done quite well all these years by just doing what you've been doing.

Sounds like you have a beautiful life where you live!

I don't think you realize how much your replies mean - thank you! I've been holding it altogether & now in tears.
You're right as usual Sandi. I have managed so far & hope to for a long time to come. It just stirs every one up when you have a slight glitch.
It was suggested I have an annual check on the blood vessels. It's not the nose I'm concerned about - but I'm not gonna let them into my brain regularly either :silly:
Yes - we live in lovely part of the world! You would have loved this morning's photo opportunity - magnificent sunrise reflecting on the clouds over the sea - gorgeous!

Jeffrey - no plans to travel OS - there is a BIG wide country right on our door step we hope to explore more in the future. Unfortunately with farming commitments it is very difficult to take the necessary time to do it justice. Have been planning to go camping in the north of our state in the outback for a few days - I was so upset about the pred. & hoping the 'monster' doesn't get left home!! I am desperate for a camp fire & as much as I love cheese cake it doesn't beat a camp oven stew!
mj

That is one view I'd love to see! I will be at the beach next week. I wish I had the luxury of looking at it every day!

What beach are you going to , Sandi? I hope you have a great time. Every hunt beach glass?

Topsail Island, NC. We go there every year.

I've never seen beach glass at this beach. I wish! My husband and kids collect sharks teeth and have a competition every year. I used to get shells but then realized that I have bags of them and don't use them for anything. I am always on the hunt for sea horse items at the shops. I collect them and have a curio of crystal sea horses and some things in my bedroom and bathroom.

MJ - would I be correct that you are in Vic?
Jac

I know I'm a bit obsessed about nosebleeds, but Jeffrey, no one has told me either, about stuffing gauze under my upper lip to stop one. I can't see how that would help, but I'm willing to try it if I get another nosebleed.

MJ, the cauterization is easy enough--though following my last cauterization, I had one more nosebleed. The ENT admitted that nosebleed could have been cause by the cauterization that I had to prevent nosebleeds!

This is my nosebleed protocol--which has kept me out of the ER the last few times:
As soon as possible, spray nostrils with nasal decongestant (like Afrin) to cause capillaries to contract.
Put strips of hemostatic gauze into nostril where nosebleed began.
Hold nostrils (soft part) tightly with tissue around for dribbling. I use noseplugs. I have the swimming kind and also the kind some hospitals give out--they help a lot because they leave your hands free. I have a nosebleed kit (with those three items) with me at all times. In fact, I have THREE nosebleed kits--one for my gym bag, one for my regular bag, and one for my bathroom.

In 2009, my husband and I took our dream trip--about a month birding on New Zealand's north island, south island, and Stewart Island. What a dazzling country!

I try to practice good nose care all the time. I use a nose gel (non-petroleum, but has aloe) every night. I use a nosespray with aloe a few times a day. I used to use a nasal steamer, but I think the heat wasn't good for my nose. Like you, I am VERY careful about blowing my nose. I sniff a lot. I sneeze into tissues with my mouth open.

MJ.

Roll a bit of gauze up to about the diameter of a pencil, maybe a little larger. Place it under the upper lip and use the lip for pressure on the gauze. There are a few larger blood vessels there that carry some blood to the nose. This will restrict the flow and slow or stop the bleeding. I have used it on myself and others through the years. I was in martial arts for quite a bit and seemed to have my nose in too many target areas so I learned a couple of tricks! LOL Now I just keep my nose where it belongs! LOL ROFLMAO I crack me up! LOL I hope you don't need it but it should help you. Docs know this trick too. Ask them....

G'day!

Jeffrey

Same for your use too Karen!

MJ,

Have you asked about Nplate? The drug company is very accommodating and provides assistance to anyone who applies. I have also been told Promacta is very expensive and the company is not so generous.