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From Maui to the Hospital

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11 years 7 months ago #40501 by tamar
Replied by tamar on topic From Maui to the Hospital
How goes it?
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11 years 7 months ago #40510 by Murray2104
Replied by Murray2104 on topic From Maui to the Hospital
Hi tamar,

Thanks for asking, sorry I haven't given any updates unfortunately we've had a lot of "life" issues to deal with as well geesh. In the last month we've had a death in the family, went to Maui :)ITP diagnosis, surgery for our oldest son, and now we're scheduling some surgery for our youngest, oh yeah and throw in we had family members that were living with us while they were in the middle of a move. Our life is usually so calm and uneventful, not complaining just would like to catch our breath a little.

Let's see the quick version is we've started the WinRho and are about ±20hrs into it but we are hoping for big things, we could use a little "win" right now. We're just in a holding pattern I guess as much as we can be. We've both been using our "free time" to educate our ourselves and trying to relax as much as possible. So far this has been a "banger" of a year.

JM
11 years 7 months ago #40511 by
Replied by on topic From Maui to the Hospital
I'd say you all have been having a "banger" of a year too. Hope things calm down and you all can stop and smell the roses, they are out there.

Hope the WinRho works and your youngest son come through surgery with flying colors!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 7 months ago #40515 by Sandi
Replied by Sandi on topic From Maui to the Hospital
So I guess the infusion went well then? Good luck with the counts!

Sounds like a rough time you've had lately. The past few years, I haven't known anything else either. One thing after another! I don't remember the last time I was calm! I hope you get that soon!
The following user(s) said Thank You: Murray2104
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11 years 7 months ago #40519 by Winnifred
Replied by Winnifred on topic From Maui to the Hospital
I know it sounds silly but when times get rough I just remember it can only get better from there. Like when the platelet count drops when your at the bottom only way to go is up!


Here's hoping and praying things settle down so you can breath!
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11 years 6 months ago #40552 by meredithjane
Replied by meredithjane on topic From Maui to the Hospital
Hi Jason,
Similarly have been on a roller coaster lately - death of my sister, birth of a grandchild, major business decisions, health investigations etc. All part of 'life' but put together a bit overwhelming. It sounds glib to say take one day at a time but recently I have had to literally take one day at a time & some long, deep breaths as well!
Remember your health is a priority & that includes physical, emotional & spiritual balance & wellbeing. I'm sure things will settle for you all & you will look back on this challenge knowing you have gained strength & knowledge, being able to face life's next chapter.
mj
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11 years 6 months ago #40561 by Murray2104
Replied by Murray2104 on topic From Maui to the Hospital
Well the little "win" we had hoped for isn't going to come from the hands of WinRho apparently. Her counts were 12 today so it looks like we are heading to a BMB and a CAT scan in order to get the approval for NPlate. The HEMO didn't really want to try Rituxan according to her 90% of the patients she sees have a negative reaction to it.

We were really hoping for a "little something" out of this treatment, just to give some needed moral boosting if nothing else. She was understandably disappointed today, I wish I could take this from her and carry it, but I can't. God if only.

So today we cope, and tomorrow we drive on. The answer is out there somewhere, we both know it is, it's just going to take a little longer to find apparently.

Jason
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11 years 6 months ago #40562 by Rob16
Replied by Rob16 on topic From Maui to the Hospital
I am very sorry to hear that the Winrho is not working.

Did you see the topic on low dose rituximab (Rituxan) research? maybe your hematologist might not be afraid of it at a much lower dose with potentially fewer side effects.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 6 months ago #40564 by Sandi
Replied by Sandi on topic From Maui to the Hospital
Murry - I didn't respond to Win-Rho either. I did the same thing, moved on to the next treatment. That is what we do here and eventually, most find the right one. You'll get there.
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11 years 6 months ago #40577 by tamar
Replied by tamar on topic From Maui to the Hospital
Well....shoot! I think NPlate is a logical next step.

Are you still considering a second opinion?
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11 years 6 months ago #40587 by Murray2104
Replied by Murray2104 on topic From Maui to the Hospital
Rob,

Yes I have read that research and as time goes on we may have to revisit the Hemo's unwillingness to try it, I don't know yet what the future is going to hold. Guess we'll find out. But thank you for mentioning it, all help is greatly appreciated.

Tamar,

Yes a second opinion is still on the table, I watched the video you sent and am trying to get in contact with the Dr on that video as well as others.


We're just marching on, we'll see what tomorrow holds. Thanks again for everyone's input and guidance, it really does mean a lot.


JM
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11 years 6 months ago #40785 by Ashegh
Replied by Ashegh on topic From Maui to the Hospital
Here's hoping and praying things settle down so you can breath!
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