Frightening Health News for my Dear Wife

[Bryan Barnfellow]

My wife (69) is in hospital after having experienced an episode of extreme dizziness and speech slurring on Saturday. The emergency doctors diagnosed this as having to do with low blood pressure. During her visit they took blood for analysis and sent her home. Then Saturday night, near midnight, they called and said we needed to get her to the hospital immediately because her blood failed a coagulant test.

So, we got her there around 1 a.m. Sunday. As of yesterday they were thinking it's Acquired Hemophilia, a rare (1 in a million) autoimmune disease and are doing a lot of tests. Because of Covid, they sent me home and absolutely would not allow me to be with her as she is going through all of this. While it's understandable and I agree with the reasoning, nonetheless it's all quite frightening--neither of us has ever not been at the side of the other during any illness.

At the hospital they won't let her even get out of bed to go to the bathroom or take a shower without a nurse to accompany her, in case of a fall. They are treating her with an immune suppressing drug (prednisone via infusion) to fix the hemophilia problem. But this brings a host of other complications, especially during the current Covid pandemic. I've spent most of my time yesterday and this morning going down internet rabbit holes trying to learn about this condition. They told us that she may be in hospital for 2 or even 3 weeks as they try to pin down the cause and raise her blood coagulant to safe levels again.

Then today, a different doctor suggested it might be Lupus instead. So more and different tests. The uncertainty is maddening.

Meanwhile about three months ago she was diagnosed with Parkinson's and is on levodopa to treat symptoms.

Is anyone personally familiar with either of these two blood conditions? Effects of long term prednisone use? I am looking to our network here for some help. Thanks so much.

-BB

 

[target2019]

Sorry to hear this. I would make sure the Parkinson's specialist who prescribed sees her immediately.

I read this article to try and get a sense of what drugs are involved, and so on.
https://www.parkinson.org/blog/whats-hot/dizzy-passing-out

 

[finnski1]

Very scary. I hope all works out well for you.

 

[Golden sunsets]

Sorry to hear of your wife's current condition. DH has Parkinsons (diagnosed in 2010) and takes carbidopa levidopa. For the past several years he has had orthostatic blood pressure ( fluctuating between very low and very high BP), identified by his Parkinsons doc as caused by PD and/or meds for PD. He has fainted a couple of times and feels lightheaded regularly. His speech has never slurred and he's not been tested for blood coagulation. There are other meds aside from carbidopa levidopa which treat PD. Good luck.

Please keep us posted.

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[Badger]

Reading your post makes my heart hurt for you and your wife. I hope the doctors can make an accurate diagnosis soon, will have an effective treatment for her, and can come home safely soon.


Cheers!

 

[FLSUnFIRE]

Not familiar but I have a family member who's platelet count went to 0 after his first Covid shot. Got to spend some time in the ER and transfusions but eventually levels came back. He felt fine but was bruising and have "hives" as blood leaked under his skin, he was sort of a timebomb as he had no clotting ability until they got the platelets stabilized.



Thought I'd throw that out there if she recently got a shot/booster as a possible trigger? He was much younger but apparently the response to the mRNA made his body attack platelets.

 

[Bryan Barnfellow]

Sorry to hear this. I would make sure the Parkinson's specialist who prescribed sees her immediately.

I read this article to try and get a sense of what drugs are involved, and so on.
https://www.parkinson.org/blog/whats-hot/dizzy-passing-out

Thanks for this link. Very helpful.

-BB

 

[donheff]

I have PD and occasionally get dizzy from orthostatic hypotension which is common in PD. But I would be stunned if all these docs couldn't distinguish OH from what they are investigating. But it is very important that the docs know about the PD and that her motion disorder specialist or neurologist be kept in the loop. Best wishes.

 

[Bryan Barnfellow]

Not familiar but I have a family member who's platelet count went to 0 after his first Covid shot. Got to spend some time in the ER and transfusions but eventually levels came back. He felt fine but was bruising and have "hives" as blood leaked under his skin, he was sort of a timebomb as he had no clotting ability until they got the platelets stabilized.



Thought I'd throw that out there if she recently got a shot/booster as a possible trigger? He was much younger but apparently the response to the mRNA made his body attack platelets.

Thanks. Yes, 26 Nov for dose 3 (Booster) of Pfizer. I've read about this, yes and told my wife. She mentioned it to the night nurse but thinks maybe the nurse hasn't heard of this and believes me to be an anti-vaxxer! Yikes, I'm as far from that as one could be. But, it is understandable, I suppose. Frankly I would probably have the same suspicion.

The measure of "normal" Factor VIII protein that you need for proper coagulation is something like 60-150 (don't know the units...still trying to understand this and my wife was unclear what the doctor said). Her level is 6. Hence the concern for immediate action. She is basically without any clotting ability, as I understand it.

 

[Bryan Barnfellow]

Sorry to hear of your wife's current condition. DH has Parkinsons (diagnosed in 2010) and takes carbidopa levidopa. For the past several years he has had orthostatic blood pressure ( fluctuating between very low and very high BP), identified by his Parkinsons doc as caused by PD and/or meds for PD. He has fainted a couple of times and feels lightheaded regularly. His speech has never slurred and he's not been tested for blood coagulation. There are other meds aside from carbidopa levidopa which treat PD. Good luck.

Please keep us posted.

Sent from my SM-T510 using Early Retirement Forum mobile app

Thanks for this information! This seems to be a known side effect of, as you say, either the PD or the meds.

-BB

 

[Bryan Barnfellow]

I have PD and occasionally get dizzy from orthostatic hypotension which is common in PD. But I would be stunned if all these docs couldn't distinguish OH from what they are investigating. But it is very important that the docs know about the PD and that her motion disorder specialist or neurologist be kept in the loop. Best wishes.

Thanks for this and the good wishes.

The ER visit simply confirmed low blood pressure (OH) on Saturday and took the blood sample. They said they would report everything to her PD doc and family doc and she should follow up. It's the blood work that caused the alarm. It's out of the blue. I did find one journal article that named a list of drugs associated with Acquired Hemophilia and the levodopa (as it is called here in Italian speaking Switzerland) was on the list! It's the only mention that I have found.

As with everything, the more you learn in medicine/health care, the more you don't know anything.

-BB

 

[Bryan Barnfellow]

Reading your post makes my heart hurt for you and your wife. I hope the doctors can make an accurate diagnosis soon, will have an effective treatment for her, and can come home safely soon.


Cheers!

Badger, thanks for the concern. I've been living in my head, alone at home, and staying up all hours reading medical journal articles. Just posting this and getting responses of concern has been a big help today.

-BB

 

[Bryan Barnfellow]

Very scary. I hope all works out well for you.

Thank you so much.

-BB

 

[whatnot]

Unfortunately, I don’t have any knowledge on this subject. But I wish you both well and hope your DW receives the best treatments and recovers quickly.

 

[Bryan Barnfellow]

Thanks, whatnot! Very much appreciated.

-BB

 

[Go-NoGo]

Dizziness, anxiety, confusion are some of the know adverse events caused by Levodopa

https://www.webmd.com/drugs/2/drug-...egrating-tablet-oral/details/list-sideeffects

Has she had a prescription refilled recently? was it the same dosage as before? Could she have accidentally taken more than the prescribed dose?

You can also check for drug interaction here:
https://www.webmd.com/interaction-checker/default.htm

I hope it resolves itself quickly and she gets better soon

 

[MRG]

I know nothing about this condition but I hope they find answers for both of you. How scary during this time.

 

[target2019]

Bryan,
It's gonna be ok. To me it sounds like hospital employees jumping into protocol because they are supposed to. Of course I'm not there and not a medical person. But I was actually at a hospital for what turned out to be lung nodules, but at the beginning of the pandemic it was just a total cluster-you-know-what. The oncologist told me it was indeterminate. Eventually we called in a favor and got a top specialist who interviewed me on zoom and got the ball rolling.

The important thing is to get a hold of your specialist for his guidance. The degree of professionalism can vary widely I've found.

 

[Bryan Barnfellow]

Dizziness, anxiety, confusion are some of the know adverse events caused by Levodopa

https://www.webmd.com/drugs/2/drug-...egrating-tablet-oral/details/list-sideeffects

Has she had a prescription refilled recently? was it the same dosage as before? Could she have accidentally taken more than the prescribed dose?

You can also check for drug interaction here:
https://www.webmd.com/interaction-checker/default.htm

I hope it resolves itself quickly and she gets better soon

Thanks for the info and the link. She is on what her neurologist describes as "pediatric dose" right now. Her case is described as somewhat mild at this point and is somewhat late in life (she will turn 70 in two months). He started the medicine regime in November and has been titrating it upward a bit over the last few weeks. We checked her daily pill box and found no evidence of overdosing on the levodopa. It could be a case of her getting used to this new medication. Unfortunately they have switched another medication (for a different condition) and are titrating that at the same time! I was against this from the beginning. As a person trained in quantitative methodologies it just seemed foolhardy to me to try varying two variables at the same time. But I think at least now, they are holding one of them constant.

Thanks for your help and kind support.

-BB

 

[Venturer]

Bryan I too have no knowledge of these but want you to know I will be praying for your peace and the Dr's wisdom as they figure this out. I know I would be in a tizzy if it was my DW and I could not be there. May God bless you both sir.

 

[Bryan Barnfellow]

Bryan,
It's gonna be ok. To me it sounds like hospital employees jumping into protocol because they are supposed to. Of course I'm not there and not a medical person. But I was actually at a hospital for what turned out to be lung nodules, but at the beginning of the pandemic it was just a total cluster-you-know-what. The oncologist told me it was indeterminate. Eventually we called in a favor and got a top specialist who interviewed me on zoom and got the ball rolling.

The important thing is to get a hold of your specialist for his guidance. The degree of professionalism can vary widely I've found.

Target, thanks for this. A good friend who is native to Switzerland told me about 15 minutes ago via email that this particular hospital they sent us to is very highly regarded and considered the best for their specialty in the entire country. So it helps when you are not needing to evaluate the medical decisions while also trying to suss out medical competence.

I hope all goes well with your lung issue.

-BB

 

[mystang52]

OP: I wish you and your wife the best. After the dust settles and your wife gets through this immediate crisis, I suggest you find a few different specialists to confirm whatever the ultimate diagnosis is, and the correct treatment.

 

[gattara]

I completely understand your anxiety. It's obvious how much you care about your wife, doing your best to educate yourself so you can understand what's going on, ask questions, etc. It's such a shock when something like this happens and the unknown creates high anxiety.

Take a few deep breaths ... the doctors will get this figured out, though it might take a bit of time. Keep us posted.

 

[Bryan Barnfellow]

I know nothing about this condition but I hope they find answers for both of you. How scary during this time.

Thank you! My wife is precious to me and doesn't do well with health worries. She often catastrophizes quickly. She knows herself well and works to counteract that; but my steady hand often makes the difference.

The responses of concern and help from this group has been very comforting. Thanks to all of you--the power of community is inspiring.

-BB

 

[Bryan Barnfellow]

OP: I wish you and your wife the best. After the dust settles and your wife gets through this immediate crisis, I suggest you find a few different specialists to confirm whatever the ultimate diagnosis is, and the correct treatment.

I completely understand your anxiety. It's obvious how much you care about your wife, doing your best to educate yourself so you can understand what's going on, ask questions, etc. It's such a shock when something like this happens and the unknown creates high anxiety.

Take a few deep breaths ... the doctors will get this figured out, though it might take a bit of time. Keep us posted.

Thanks to both of you for these good words. When I had to leave her at the hospital she said she was afraid (the department of Hematology was part of the Oncology group there and that freaked us both out when we had no information at all upon arrival). But she started to cry because she said she knew what I would go through, worrying alone at home. That was hardest to take at that moment in the ER. We have always been at each other's side during health issues.

-BB