Autoimmune disease and thrombocytopenia

Posted by rojo36 @rojo36, Feb 1, 2020

Hello, I am reaching out to see if anyone else has experience with an autoimmune disease that includes thrombocytopenia. I’m 5’ 4” - 115 lbs and 56 years old. I’ve been an avid athlete all my life and eat a very well-balanced diet. At age 49 I had a heart attack. It seems my blood is either too thin or too thick and my trigger is a change in the weather or stress. I’ve never been able to tolerate birth-control/estrogen. I have three children. My hormones have reached havoc on me throughout the years. I have regular visits to the oncologist for bloodwork to Monitor my platelet count. I believe my father now passed on at age 92 had an autoimmune disease. I wish to discover more for my children and what more I can do as I age. One of my daughters has epilepsy. We finally better understand my issues and how to treat and I’m happy to say I’m extremely healthy and feel terrific.

Is there any new information on auto immune disease and thrombocytopenia and what I need to do to manage my health as I age?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@marymanning

Here is what I just posted to family members and friends: Hey, everybody, it was another night of total incompetence on the part of these "high risk" doctors. Katie was supposed to be induced last night at 10:00, but when she arrived at Memorial Hospital, there was no record of her being scheduled for induction. The resident (that she saw last week who told her she had a pulmonary embolism!!) asked her why she would want to be induced at 36 weeks and why she did not want to have a C-section. Katie let her know that all of that was discussed with her team of doctors and the decision was made to induce on the 21st, not have the steroid shot for this week, and to report to the hospital at 10:00 for induction.. At 11:30 p.m., the resident said she had spoken to one of Katie's doctors and they said she was to receive the steroid shot, wait 24 hours for a second shot, and then labor would be induced. She was also informed that her "high risk" doctors would only deliver the baby if he was born during the day. If he was born at night, then the OB/GYN doctor on call would do the delivery. They wanted her to sit in a room at the hospital for 24 hours. She told them she wanted to go home and sleep in her own bed. The resident said, "Well, we'll have to take out the IV." Katie said, "I told her 'then take out the IV.'" Katie said that she left an "earful" with the patient advocate who will pass her message on to the doctors. Needless to say, Katie is not happy about any of this. . .and Sadie said it well when I told Jessie, Chase and her what had happened: "You mean we spent the night here for nothing?" Yep, we'll see how it goes tonight.

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@marymanning I am so sorry that your daughter is going through this! It really is incredible. I hope this evening goes better. Please keep in touch.

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@becsbuddy

@marymanning I just cannot imagine the screw up your daughter went through! From what you told us, everything was going to happen on Monday ! How upsetting and disappointing for the entire family. Is the doing baby okay?
Maybe, when things have settled down some, you and your daughter could make an appointment with the patient representative. This will give you the opportunity to tell your story in a non-angry, but forceful, way. The OB department needs to hear about this.
Are things any better today?

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She went in last night at 8:00 and we talked before we went to bed at 10:00 and she was in good spirits. She left us a message at 3:30 this morning saying that her blood pressure has gone super high so they have been dealing with that. She left this message this morning: 7:45am update, my blood pressure has come down a lot. I’ve gotten maybe two hours of sleep in between them coming in and doing vitals. Still having contractions but not really needing anything pain wise. I may be asleep at 9 when you get on so I’ll call or update you later. So, Mr. Ollie is taking his time. She was hopeful that labor would progress quickly, so we will see what happens today. Thank you for your concern.

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@marymanning

She went in last night at 8:00 and we talked before we went to bed at 10:00 and she was in good spirits. She left us a message at 3:30 this morning saying that her blood pressure has gone super high so they have been dealing with that. She left this message this morning: 7:45am update, my blood pressure has come down a lot. I’ve gotten maybe two hours of sleep in between them coming in and doing vitals. Still having contractions but not really needing anything pain wise. I may be asleep at 9 when you get on so I’ll call or update you later. So, Mr. Ollie is taking his time. She was hopeful that labor would progress quickly, so we will see what happens today. Thank you for your concern.

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So glad to hear from you about your daughter and little Ollie! Praying for the best!

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@marymanning

She went in last night at 8:00 and we talked before we went to bed at 10:00 and she was in good spirits. She left us a message at 3:30 this morning saying that her blood pressure has gone super high so they have been dealing with that. She left this message this morning: 7:45am update, my blood pressure has come down a lot. I’ve gotten maybe two hours of sleep in between them coming in and doing vitals. Still having contractions but not really needing anything pain wise. I may be asleep at 9 when you get on so I’ll call or update you later. So, Mr. Ollie is taking his time. She was hopeful that labor would progress quickly, so we will see what happens today. Thank you for your concern.

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It's 7:25 AM on Thursday and still no baby. She sent a message at 3:00 and one just 15 minutes ago. Here they are:
It’s 3:15am. I am only 5 cm dilated. The doctor just placed an internal monitor to accurately track my contractions and put some fluid back in for Oliver because he’s having some heart beat dips. My epidural is starting to not work. If he continues to have dips, they will have to shut off the pitocin and once they’ve shut off the pitocin, they can’t restart it. At that point, it would be a wait and see if I continue to have contractions or start looking at the possibility of a c section . At this point, I’m so exhausted, I am ready to be done.

7:15am update. I’ve been having hard labor since about 5:00am. The anesthesiologist is coming to give me something. Hoping it knocks me out. May not be awake when you get up at 9. Really don’t feel like talking.

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Hello @marymanning,

Sorry to hear that your daughter is struggling in hard labor now. I can understand her comment that she is "ready to be done." Many of us have been through this but with her other health problems, I can understand how concerning this must be for all of you!

Will you post again and let us know of her progress?

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I just sent this message to family and friends: Katie just called (9:30 AM Thursday) to tell me that the doctor has gone ahead and scheduled a C-section for her, since she remains at 5cm and Ollie's heartbeat has periods of slowing down. They've taken her off of the pitocin and said that it is good that she already has the epidural and a catheter in. They have put a nurse with her to monitor everything and are going to "fit her in" to deliveries this morning. They've let her know that she will probably be able to be with Ollie for about an hour before taking him into the NICU for assessment. I told her, "Poor little guy, he has been through so much, too," and she said "I know. He just hasn't dropped the way the wanted him to so we will be having a C-section."
She is really anxious about all of this, so please continue to keep her in your thoughts and prayers.

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@marymanning

I just sent this message to family and friends: Katie just called (9:30 AM Thursday) to tell me that the doctor has gone ahead and scheduled a C-section for her, since she remains at 5cm and Ollie's heartbeat has periods of slowing down. They've taken her off of the pitocin and said that it is good that she already has the epidural and a catheter in. They have put a nurse with her to monitor everything and are going to "fit her in" to deliveries this morning. They've let her know that she will probably be able to be with Ollie for about an hour before taking him into the NICU for assessment. I told her, "Poor little guy, he has been through so much, too," and she said "I know. He just hasn't dropped the way the wanted him to so we will be having a C-section."
She is really anxious about all of this, so please continue to keep her in your thoughts and prayers.

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@marymanning I’ve been following your postings of your daughter and Ollie’s arduous journey though I haven’t posted. I’m sure this is the case with many of our members…we’re watching from the sidelines and holding our breath. Please know your daughter is in our thoughts and prayers, as are you! It’s so difficult being a parent and feeling helpless. Ollie and your daughter are both so strong and he’ll be arriving soon.

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@marymanning

It's 7:25 AM on Thursday and still no baby. She sent a message at 3:00 and one just 15 minutes ago. Here they are:
It’s 3:15am. I am only 5 cm dilated. The doctor just placed an internal monitor to accurately track my contractions and put some fluid back in for Oliver because he’s having some heart beat dips. My epidural is starting to not work. If he continues to have dips, they will have to shut off the pitocin and once they’ve shut off the pitocin, they can’t restart it. At that point, it would be a wait and see if I continue to have contractions or start looking at the possibility of a c section . At this point, I’m so exhausted, I am ready to be done.

7:15am update. I’ve been having hard labor since about 5:00am. The anesthesiologist is coming to give me something. Hoping it knocks me out. May not be awake when you get up at 9. Really don’t feel like talking.

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It was good to hear an update on Ollie and his mom. Be assured that we will keep them in our thoughts as this day progresses. And you, also. Becky

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@marymanning

I just sent this message to family and friends: Katie just called (9:30 AM Thursday) to tell me that the doctor has gone ahead and scheduled a C-section for her, since she remains at 5cm and Ollie's heartbeat has periods of slowing down. They've taken her off of the pitocin and said that it is good that she already has the epidural and a catheter in. They have put a nurse with her to monitor everything and are going to "fit her in" to deliveries this morning. They've let her know that she will probably be able to be with Ollie for about an hour before taking him into the NICU for assessment. I told her, "Poor little guy, he has been through so much, too," and she said "I know. He just hasn't dropped the way the wanted him to so we will be having a C-section."
She is really anxious about all of this, so please continue to keep her in your thoughts and prayers.

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@marymanning,

Thanks for your post about the C-Section! I'm sure your daughter and Ollie are ready.

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@marymanning

It's 7:25 AM on Thursday and still no baby. She sent a message at 3:00 and one just 15 minutes ago. Here they are:
It’s 3:15am. I am only 5 cm dilated. The doctor just placed an internal monitor to accurately track my contractions and put some fluid back in for Oliver because he’s having some heart beat dips. My epidural is starting to not work. If he continues to have dips, they will have to shut off the pitocin and once they’ve shut off the pitocin, they can’t restart it. At that point, it would be a wait and see if I continue to have contractions or start looking at the possibility of a c section . At this point, I’m so exhausted, I am ready to be done.

7:15am update. I’ve been having hard labor since about 5:00am. The anesthesiologist is coming to give me something. Hoping it knocks me out. May not be awake when you get up at 9. Really don’t feel like talking.

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Ollie has arrived -- born by C-section because heart beat slowed -- born with a knot in his cord and he had a fever. Weighed in at 6 lbs. and 12 oz -- so good size. NICU doctor just told them he is doing perfect; no breathing issues; no outward signs of NAIT; his fever immediately dropped as soon as they got him into a shirt and new hat. Platelet count should be back within the hour at most and they are really happy with how he is doing. She is doing fine also -- very tired (and hungry -- hasn't eaten since 6:00 Tuesday night). The Lord has blessed us.

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