Prayers needed please

[riley]

Hi everyone. My father is in the ICU again. He came in to the ER this morning with a BP of 50/30 and a heart rate of 180. Things seem to be improving a bit — his BP is up to 70s/40s, but he’s far from out of the woods.

Just yesterday, he was telling us how he’s feeling better than he has in months. And today, they’re telling us they think he’s septic. This came on very suddenly this morning…he said his good-byes to my mother and me today…he’s never done that.

It’s been such an emotional day for us, watching my father fighting and suffering and not even knowing what to wish for any more. He’s only 60 years old, and he’s been fighting so hard for 19 months now. Just when he’s finally feeling better, he gets knocked down again. I know you all can relate.

Thanks for letting me share our update. I really appreciate any prayers that any of you might have a chance to offer up.

Kathryn and Carrie, I read your updates. You and your dads are in my prayers.

Kathryn, we’re in the Northside ICU. If you and your dad are still here, let me know…I’d love to meet you.

Nicole

[Neil]

Hi Nicole,
You and your father have our thoughts and prayers. Also added him to my daughters prayer list. It seems to be working for several of us.
Neil

[Kathy TN]

Nicole-
You and your father are in my prayers it’s a tough to be so helpless. I hope he’ll pull through and feel better and that this is just a short setback.

Kathy

[gemloyear]

Hi Nicole, I will be praying for your dad, and hope that this a temporary set back which he will quickly recover from.
Ellie

[Kathryn]

Nicole, I just sent you a private message with my cell phone number.

I am so sorry about your dad. I know how your heart is feeling. Be assured that he is in good hands though.

Please call me anytime… I will be there all day.

My prayers are w/ you both.

Kathryn

[Carrie]

riley,

Thank you for your thoughts. This is a rough week for us all, huh?

I hope you and Kathryn meet and can be comforting for each other.

It’s horrible how things change so fast.

I hope that your dad gets through this.

Love,
Carrie

[sarah]

Nicole, continued thoughts and prayers for your dad.

[riley]

Thank you all so much for your prayers. They seem to be working!

Yesterday and this morning, all of my father’s doctors were telling us that there was no way he could pull through this time. His H&H were dropping rapidly — they were checking every six hours, and each time, it was quite a bit lower than the counts before.

He had a CT scan today, which showed a large amount of blood throughout his abdomen. They couldn’t tell where it was coming from, but they let us know that transfusions were not going to be able to keep up with the loss.

And then he seemed to be blessed with a miracle. This afternoon, after a couple of units of red blood, one unit of plasma, and one unit of platelets, all of his counts started coming up quickly. And his white count dropped from 37k to 27k within hours. They’re not sure that it’s an infection — they seem to think that his platelets were low and his PT and PTT were high, which together allowed a small bleed to become a massive bleed. They tell us that the bleed seems to be resolving on its own! They’re just going to keep a close eye on things for the time being.

He’s off all BP meds now and he’s holding his BP stable on his own. He may still need to have a surgery in the next couple of days if his counts drop again — to try to determine where the bleeding is coming from. They’ve cautioned us that they’re trying to avoid surgery as long as possible because they don’t think he’ll survive it. We’re praying that it won’t become necessary.

Later this afternoon, we got some great news. Dad had a BMB on Friday, and preliminary results showed his blasts at 54%. He’s never had anything close to that, and we were devestated to hear that his MDS had transformed to AML so quickly. Today we got the final results — less than 20% blasts and not AML!

Thank you all so much for your prayers and good wishes. My family and I all appreciate it so much.

Nicole

p.s. Kathryn, I haven’t had a chance to get online since my last message, so I just got your messages. I’ll try to reach you tomorrow. My prayers are with you and your dad.

[Carrie]

Nicole,

I’m glad to hear some more good news. I hope that things are still going well.

Carrie

[Ensnee]

Nicole, I’m praying for you, your dad and your whole family. This suffering is very, very hard to bear, isn’t it? Let us know what happens.

many hugs,
Esme

[riley]

Hi friends,

Thanks for all your prayers and support. I’m so new to this forum, and it’s helping me so much to feel your concern and support. I only wish I had found you all sooner!

My father’s health has been up and down since Thursday…it seems to change every hour. The latest is that his bleeding stopped a few days ago and his infection is resolving. His WBC is down to around 12 today, so that’s good news.

However, it doesn’t appear that he’s making PLTs. They gave him a transfusion yesterday and got him up to 50k. This morning’s labs showed 6k. They said infection can cause them to decrease, so they could rise again once he’s fully past the pneumonia, but I have a feeling this has more to do with his MDS progressing.

He’s on a lot of pain med to keep him comfortable, so he’s really spacy and not himself. It’s hard to see, but it’s much better than his being in pain.

I have a couple of stupid questions that I hope some of you can help me with. I know you can’t receive PLT transfusions indefinitely, but does anyone know how long you can usually go? And if Dad just stops making PLTs and can’t be transfused, what will happen? I’m sorry if that’s an awful question to ask, but I’m very worried about how this is going to end.

I was so happy to meet Kathryn earlier this week, although I wish the circumstances had been different. She is such a sweet and loving person, as I’m sure you all can tell. Her whole family was so kind to me. I’m sure her dad was very proud of his loving family. Please continue to keep Kathryn and her family in your prayers.

Thanks again for being there,
Nicole

[Kathryn]

Hey Nicole, how is your dad? I hope that his progress continues to be positive.

No question is a stupid one…. I have found that they all are VERY important! From our experience my father had become transfusion dependent. They had begun to give him single donor platelets because eventually the body begins to build up antibodies against the new platelets. The single donor are better tolerated. Now, someone please correct me if I am wrong, but I am thinking that is what happens. I was worried about the same thing w/ my dad, but I believe they will continue to give them indefinitely with the time between transfusions being shorter.

Thank you so much for your kind thoughts & prayers Nicole. I hope that you will stay in touch w/ me and keep me posted on how your father is doing. I’ll meet you up there any time.

Take good care,

Kathryn

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