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.

@hopeful33250

@becsbuddy Such great ideas, Becky. I'm sure that @marymanning will appreciate these thoughts from a nurse who knows how the hospital system works! Thanks.

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Thank you, Becky, for your ideas. She plans to be at their OB/GYN office when they open at 8 in the morning. She wants them to do an ultrasound and tell her how her son is doing and if he is of adequate weight (i.e., 5 pounds plus) she is going to ask that labor be induced. She said that her body is really achy today. She did not have her two IV treatments on Wednesday and Thursday last week, but was sure one of her doctors would have called by now to discuss what the plan is going forward. Since they have not reached out to her, she is going to "reach out" to them. Their offices are in the same building as the hospital, and yet none of them (6??) bothered to even come by at the end of their day to check on her. Because her first doctor did not treat "high risk" patients, he referred her to these doctors. But, I am not happy with their lack of support, compassion, and assurance for Katie and her son. Thank you for all of the information. It has been helpful.

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@marymanning

Thank you, Becky, for your ideas. She plans to be at their OB/GYN office when they open at 8 in the morning. She wants them to do an ultrasound and tell her how her son is doing and if he is of adequate weight (i.e., 5 pounds plus) she is going to ask that labor be induced. She said that her body is really achy today. She did not have her two IV treatments on Wednesday and Thursday last week, but was sure one of her doctors would have called by now to discuss what the plan is going forward. Since they have not reached out to her, she is going to "reach out" to them. Their offices are in the same building as the hospital, and yet none of them (6??) bothered to even come by at the end of their day to check on her. Because her first doctor did not treat "high risk" patients, he referred her to these doctors. But, I am not happy with their lack of support, compassion, and assurance for Katie and her son. Thank you for all of the information. It has been helpful.

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Hello again, @marymanning

I just wanted to check in with you to see how you, your daughter, and her little baby are doing. I know how concerned you are for her and her baby and I hope she is doing well.

Has her doctor talked to her about what will come next? Was labor induced as planned?

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@hopeful33250

Hello again, @marymanning

I just wanted to check in with you to see how you, your daughter, and her little baby are doing. I know how concerned you are for her and her baby and I hope she is doing well.

Has her doctor talked to her about what will come next? Was labor induced as planned?

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Labor will be induced next Monday at 10:00 PM. They have taken her off the IVIg treatments and have her taken steroids two days/week right now. They put her on beta blockers yesterday and she is already feeling better. (Her pulse rate was 150 when she saw the doctor on Tuesday!) So, we are hopefully that Ollie will arrive healthy and safely on Tuesday. Thank you for your thoughts.

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@marymanning

Labor will be induced next Monday at 10:00 PM. They have taken her off the IVIg treatments and have her taken steroids two days/week right now. They put her on beta blockers yesterday and she is already feeling better. (Her pulse rate was 150 when she saw the doctor on Tuesday!) So, we are hopefully that Ollie will arrive healthy and safely on Tuesday. Thank you for your thoughts.

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Thank you so much for the update, @marymanning! Is she having less nausea without the IVIg treatments?

I'm glad that she is doing well with the beta-blockers. That is all such good news.

I'm looking forward to hearing about Ollie's entrance into the world. I'm sure you and your daughter are as well!

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@hopeful33250

Thank you so much for the update, @marymanning! Is she having less nausea without the IVIg treatments?

I'm glad that she is doing well with the beta-blockers. That is all such good news.

I'm looking forward to hearing about Ollie's entrance into the world. I'm sure you and your daughter are as well!

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Yes, she feels so much better with the beta blockers. I wish they would have made this decision when she went to the ER last Tuesday then she probably would not have found herself back in the hospital on Friday. We're praying for a healthy and safe delivery for Ollie.

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@hopeful33250

Thank you so much for the update, @marymanning! Is she having less nausea without the IVIg treatments?

I'm glad that she is doing well with the beta-blockers. That is all such good news.

I'm looking forward to hearing about Ollie's entrance into the world. I'm sure you and your daughter are as well!

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Yes, the nausea has left and she is just waiting for Monday to get here. Thanks for asking, Teresa.

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@marymanning, I'm glad to hear her nausea has lifted and she is feeling better with the beta-blockers. I'll be glad to join you in praying for Ollie's safe trip into his new home!

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@becsbuddy

Good morning. I can only imagine how worried you are for your daughter. I’m glad to hear that she has some good doctors. I found this NIH article that talks about thrombocytopenia and pregnancy. I hope it will give some helpful information.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5394486/
Becky

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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

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 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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Hi there. I have three autoimmune diseases. I also had had thrombocytopenia and now have pancytopenia. If I am correct (check this out because I am not a doctor) but what I read on a medical site stated: If you live long enough the thrombocytopenia will change into pancytopenia. So far I have had Pancytopenia for ten years so do not worry to much. You have many years to live. Keep going to the doctors as they will guide you through this. Peach

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