Frightening Health News for my Dear Wife

[Bamaman]

As a type II diabetic, I'm well managed by an endocrinologist and have blood tests quarterly.

My doctor says I'm dehydrated and have too many red blood cells. That means I'm a higher risk for strokes and heart issues. His best suggestion is periodically giving blood to the blood bank and to drink lots of water.

I'm calling today to ask for a referral to an oncologist/hematologist. If they've got to bleed me, I don't want to do it more often than needed. And I want to better understand the situation.

I guess I'm on the other spectrum than your wife. Sounds as if you're getting very good care, and we'll pray for her healing.

 

[Teacher Terry]

It’s hard to be separated during a medical crisis. Hoping for a quick diagnosis and treatment. Wishing you both the best.

 

[pacergal]

Praying for a good answers to the medical issues and a speedy recovery for your wife.
How frightening for you both.

 

[Bryan Barnfellow]

Dear all,
It's been a busy few days and I didn't have time to finish thanking individually everyone who responded, but I wanted you to know how grateful I am for the good wishes, comments of concern, and incredibly helpful suggestions. Very grateful indeed. This group is the best for many things--humane, community support is among them.

The upshot is that my wife is now back at home! There wasn't a happier boy at the hospital doors than I, when I picked her up. It turns out that the deficiency in the blood clotting factor can be a false positive when there is the presence of lupus anticoagulant in the blood. It interferes with the test. The head doctor in the oncology/hematology department suspected that this might be the case, given that my wife has never displayed any unusual bleeding. So, they ran a test for it and found the lupus anticoagulant. A second, different test helped to confirm it.

He discarded the earlier, tentative diagnosis of acquired hemophilia and gave a new preliminary diagnosis of asymptomatic lupus, which can be an early stage of eventual systemic lupus erythematosus (SLE). My wife also has a known lupus symptom having to do with her fingers and cold weather—Reynaud’s disease--which was diagnosed a few years back, but never followed up on.

So she was discharged and set up with a hematologist (who is part of the team) in one of our own local hospitals, who will do further tests, develop a treatment plan, and follow her progress. Lupus can have broad based deleterious physiological effects, so we have to be prepared for the long haul.

Again, grazie mille (a thousand thanks) a tutti (to everyone)!!!

 

[Bryan Barnfellow]

Sorry to hear about your wife. It may be a good idea to get another opinion from another hospital like the Chuv in Lausanne. They are more likely to be able diagnose and treat here issue. They are also a university hospital. It's a long drive or commute by train but it may be worth it. We have been taking my in-laws there for the past 10 years even though it's inconvenient and a longer drive than the local hospitals.

Thanks, Freedom. My internet research these last few days repeatedly pointed to the Lausanne hospital as top notch. So, it is under consideration.

-BB

 

[Bryan Barnfellow]

Bryan, so sorry this is happening to you and your DW. The COVID protocols seem very cruel in cases like yours. I don’t know if you can FaceTime or Zoom with your wife, but I’m sure seeing your face would be comforting, if only on a screen.

I don’t have any knowledge to offer, just empathy for what you’re going through and hope that they get to the root cause and are able to treat her quickly and effectively.

This is what kept us sane when our son was in hospital last year including most of the time he was in ICU. (4 years ago when I was an outpatient at that same hospital there was no Wi-Fi or even phone signal in the internal rooms of where I was)

Thanks to you both. Yes, we were able to use WhatsApp and talk via video calls. This was a life saver for both of us.

-BB

 

[CindyBlue]

Woo Hoo!! She's home with you! I'm so happy to hear it!
And it sounds as if you and her doctors are well on the way to helping her regarding her lupus symptoms - glad to hear that, too!

 

[Bryan Barnfellow]

How very scary for both of you. Darn this Covid for removing support systems when they are needed most.

Spero che possiate trovare calma e pace mentre i dottori lavorano per risolvere il problema. I migliori auguri per entrambi.

(That's the extent of my Italian... you'll notice it's all present tense. LOL)

Can't help with the medical side, but will be sincerely praying for you and your wife.

Thanks marko for the good thoughts. Rodi, I remember when I first joined this group that you were beginning to study Italian, no? In any case, you were perfect! Brava!

-BB

 

[ejman]

Great news!!!

 

[Alan]

That is good news indeed. My sister has had lupus for a number of years now, and it is much more manageable once you know you have it.

All the best to you both.

 

[Bryan Barnfellow]

Sorry to hear about your wife. I spend a large part of my life trying to increase my platelet counts and get my blood to clot. A number of my family members have had the same issue. In my case what helped was more vitamin K rich foods, especially lettuce, yogurt with live cultures and avoiding too many blood thinning foods like garlic, spices and berries. The fermented foods helped increase the gut bacteria that make vitamin K. The doctors never tested for these conditions even though I saw many different ones for various bleeding issues.

Parkinson's is linked to a number of nutritional deficiencies, including vitamin K2, low uric acid and an altered gut microbiome. Vitamin K2, as well as fermented foods and probiotics with gut bacteria that make K2, are being researched now as promising Parkinson's treatments.

Related links -

Vitamin K2: New hope for Parkinson's patients? -- ScienceDaily
Parkinson’s Disease & the Uric Acid Sweet Spot | NutritionFacts.org
The Gut Microbiome & Parkinson's Disease | APDA (apdaparkinson.org)
Worm Study of B. Subtilis Bacteria May Apply in Parkinson's Research (parkinsonsnewstoday.com)

Wow. Thanks for this. Lots of useful information. I know that diet is going to be a part of my wife's treatment.


-BB

 

[Bryan Barnfellow]

Hope all goes well and gets sorted and your wife returns home soon.

Bryan,
Our thoughts and prayers go out to you.
You have a large caring support system from your ER internet family.

Thanks to you both. The ER internet family is fantastic.

-BB

 

[Bryan Barnfellow]

Wishing you both the best.

What I do know is that testing for Lupus is just a blood test. Short term prednisone will have an initial euphoric period but getting off prednisone high doses can bring aching to extreme. I had several high doses of steroids in my 30’s also tested for Lupus. When I was coming off the steroids I felt like I was 100. Everything ached walking was a serious effort, but these symptoms were temporary.

I know how I would feel being hospitalized without having my DH by my side. I feel for you both. I hope her condition improves quickly.

Thanks. My wife was having infusions of prednisone for three days. When she was released she was in a pretty euphoric state--more than normally expected even when getting out of the hospital. So far, she is coming down well. Mine, however, remains in the clouds.

-BB

 

[Dtail]

Okay one step at a time. Moving in the right direction.

 

[Bryan Barnfellow]

Sorry to hear and wishing you the best as you go through this trying time. We can totally relate to what you are dealing with. Our son has been in the hospital since Dec 16th... My last day of work, then flown out to a major medical center on the 19th due to a major GI Bleed.

Old Medic, thanks for your good wishes and send my own to you with respect to your son. I hope all turns out well.

-BB

 

[rodi]

So glad to read that the doctors figured out the puzzle and can now develop an ongoing treatment plan. So happy to read she's at home. Continued wishes that she improves and that the lupus treatment is tolerable.

 

[Bryan Barnfellow]

I wish both of you the best.

Bryan, prayers for you and your wife! Continue to be her Rock as she goes through this!

Bryan, I have no information for you but want you to know that we are praying for you and thinking about you and your dear wife as you both go through this scary time. Hugs!

I am sorry that both of you going through this. The question on effects of long term prednisone use, right now it is considered short term use. Long term use will be for years. I have been on prednisone 6 times in my life, each time lasting about 3 weeks and haven't had any long term side effects. I have a friend who was on prednisone for several years before stopping when her condition went into remission and has not had any issue. Obviously it is a drug / steroid where the shorter the duration of use the better.

Oh my, I'm so sorry to hear your news. I know what it's like to feel helpless when my spouse is ill.

Does she have access to a telephone/cell phone? Just hearing each other's voices will help. The only thing I can think of that has not been mentioned is contacting her PCP and see if she/he has any advice.

It's easy to go down the rabbit hole at times like these. But from what you have said, she is getting the best care possible. I'll be thinking of you both.

Bryan, I am so very sorry this has happened to your bride. I hope they get it straightened out soon.

So sorry to hear this Bryan, all the very best to you and your wife.

Thanks so much for the comforting words. BbamI, yes, our cell phones with whatsapp video saved us as they have in other health situations in the past.
We did contact her family doctor, so she is in the loop. RetiredHappy, I think now prednisone is no longer on the table. At least I hope so.

-BB

 

[Bryan Barnfellow]

Those symptoms could be any of a number of different things, some serious, some not. So it's good that they're doing their best to pin it down.

My sincere sympathy -- I know I'd be pretty frantic if I were in your shoes, so try to be strong for both of you. Best of luck!

Thanks, baumeister! I tried to remain calm by becoming an expert on autoimmune disease, reading research papers on the subject online. I am due to get my professional certificate next month

-BB

 

[bbbamI]

Whew....thank you for the update! Being at home together is an extra dose of great medicine.

 

[Bryan Barnfellow]

What a frightening turn of events! Thank goodness you got her to a hospital where she is being cared for, and being kept relatively safe from falling. A bad fall could make this so much worse.

I know it's hard when you can't be together while she is there. Frank and I went through that too, for 2-3 weeks while I was in the ICU with Covid (in Arkansas) and he was quarantined in Louisiana and nobody could visit me. The only humans I saw were medical personnel dressed in protective gear so they scarcely looked human.

It was hard for me not to feel abandoned. He is a very reliable person and I hung on to my faith in him like a lifeline. He called me every day on my cell phone, at the same time of day, and promised to get me out of there and get me home somehow. That helped me to feel safer and not forgotten, which in turn helped in keeping me saner than I otherwise would have been. His calls were everything to me.

I think it was hardest on him, because like most guys he felt a responsibility to take care of me and he really could not do much. He couldn't even visit me.

Take care of yourself, and I hope she recovers smoothly and quickly.

P.S. - - I don't know anything about any of those conditions you mentioned. But I was so impressed and grateful with how truly hard the very dedicated hospital staff worked to save my life and get me through all that. Hopefully that is the type of care your wife is experiencing right now, as well.

WR2, I followed your story about the Covid nightmare and was very relieved you came out of it okay. Your presence in these posts is always a high point of this group. Stay well!

-BB

 

[Bryan Barnfellow]

Bryan, sorry to hear of this and I wish her a speedy recovery.

With respect to the use of prednisone, my DW has had a lot of it in the last few years as she has COPD and that's one drug they use to open her lung passages when she has trouble breathing and O2 won't work well.

The issue with prednisone is that over time it has damaged my DW's bones and now she has severe osteoporosis and has to have injections of Prolia every few months. Along with the bone deterioration, she is VERY fragile. Now when it's needed, Medicare will only approve 10 mg doses.

Bottom line is this steroid is one that may have long term use issues.

Aja8888, I am very sorry to hear this and hope your wife stays well. My wife has had osteoporosis indications and was getting injections as well. Recent tests were good enough that her doctor discontinued them. I think we may be able to avoid prednisone with the new diagnosis. Best wishes to you and your wife.

-BB

 

[W2R]

WR2, I followed your story about the Covid nightmare and was very relieved you came out of it okay. Your presence in these posts is always a high point of this group. Stay well!

-BB

Thank you!

And, how WONDERFUL that your DW has been able to come home from the hospital already! I am so happy for the two of you.

 

[Bryan Barnfellow]

Thanks again everyone. I think I've responded to everyone. My next posts will deviate from the medical and return to real business of this forum: when to take SS, annuities, and Financial Advisors.

-BB

 

[tmm99]

Great to hear that your wife is home!

 

[braumeister]

We all sincerely hope that you will celebrate by going out for a great dinner or something like that. Congratulations!