Rooting for my brother - please join me - Hughes Syndrome A...

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Rooting for my brother - please join me

strugglingwaps profile image
11 Replies

My brother KD2605 is waiting for tests for internal bleed (INR had shot up suddenly) and so on in an ICU right now. Isolated and alone in ICU for generally social person makes it additionally challenging.

He may have to get on urgent dialysis with permcath once his current issues are diagnosed and resolved.

Please join me in rooting for him with your words of support. I will share them with him to raise his spirits.

Thank you!

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strugglingwaps
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11 Replies
MaryF profile image
MaryFAdministrator

Of course, give him all our best. Let us know how he is doing. MaryF

GinaD profile image
GinaD

From West Virginia, USA: tough it out! You will come through, and maybe someday, you can visit my home state and enjoy our wonderful mountain views!

Raw57 profile image
Raw57

He is in my thoughts and prayers!

Mermaidatheart profile image
Mermaidatheart

🙏🙏

Prayers coming his way!!

jetjetjet profile image
jetjetjet

Nothing but the best to your brother , My Thoughts with him and a big recovery .

strugglingwaps profile image
strugglingwaps

THANK YOU !!

He is getting taken out of ICU today. Had some internal bleed that they cauterized. He will be kept under observation for a few days, his breathing needs to improve. They will decide on dialysis based on his improvement and being able to still manage with existing kidney function. He is able to get up and go about slowly within ICU.

HollyHeski profile image
HollyHeskiAdministrator in reply to strugglingwaps

Good news but I appreciate he has a long hard road ahead of him. The stress and worry must be making you both very weary and anxious.I wish you both a smoother road x

Stereolover profile image
Stereolover

Thoughts and prayers are with your brother 🙏

Raw57 profile image
Raw57

how is your brother?

strugglingwaps profile image
strugglingwaps in reply to Raw57

Thanks for asking Raw57 I was going to post a update just now. He is better. Was able to walk slowly but surely after discharge to stay in adjacent hotel (abutting the hospital) for a few days to ensure closeness to hospital in case of any sudden need (hope not). No permcath and dialysis yet - re-test and re-check in 2 weeks. In the meantime warfarin is starting back (INR was down to 0.99 and they did not want to start before they decided on dialysis as that would need incision for permcath and they would not do that while on warfarin). Re check INR in 4 days. If in 2 weeks rest of his parameters such as hemoglobin stabilize and look good + he seems to keep plodding along with the kidneys with current highly limited function, then they will likely keep that going for some more time. Nephrologist says dialysis once started is a one way street and has its own stress and so he wants to defer it as long as possible.

Has been nail biting few days. The day by day and week by week about dialysis decision is causing him anxiety and stress. He wanted the process started off without the wait and watch. But, I have come to believe the doctors are doing the right thing by taking a measured approach.

I am thankful for the support and words and wishes and prayers from so many folks!

Raw57 profile image
Raw57

I’m glad to hear he is better even if just a little bit. I pray his kidney function improves!

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