Blood clot in spleen, now leg pain!

[anne casey]

Our 20 year old son had his aortic valve replace with a tissue valve about 1 1/2 years ago. About 5 months ago, he had a blood clot that killed half of his spleen, now he is on Coumadin. This past week and a half he has severe leg calf pain for no apparent reason. He went to ER and had ultra sound, they ruled out another blood clot. Then days later, that pain eased up and now the other leg calf hurts....now his lower back! He will see doctor tomorrow am. But, just wondering if anyone else had similar issues? He's so young to be having these issues. Could it be the Coumadin? Or what about this bacteria slow growing infection from the heart-lung machine? Just read about that tonight in the news, says it can take years to show symptoms. Dr will get lots of questions tomorrow!

 

[Agian]

Back problems can cause leg pain. He might have pinched a nerve.
Sounds completely unrelated to what you're worried about, but as a parent I understand your anxiety.

 

[anne casey]

Update: I knew something was wrong for over a month...but all tests were negative. Now, I'm so sad to say he had a major stroke this week! They think it's an infection on heart valve or body rejecting the valve. He's got a lot of Drs. Working on his care at mayo, Rochester. Once it's safe to operate, he'll have his valve replaced. It's a very delicate situation, his brain needs to heal, but the valve is failing. Please pray for him! He was an active normal college kid and now he has to drop out and focus on learning to walk again....I know, we will try to stay strong and positive and enourage him to fight through this....

 

[dick0236]

Anne, I'm very sorry to hear this about your son and hope that everything works out.

 

[honeybunny]

I am so very sorry to hear this but thank you for posting an update. You are all in my prayers. Please keep us posted.

 

[pellicle]

Hi

Our 20 year old son had his aortic valve replace with a tissue valve about 1 1/2 years ago. About 5 months ago, he had a blood clot that killed half of his spleen,

yes, I remember that ...
http://cjeastwd.blogspot.fi/2013/10/...r-on-14mm.html

now he is on Coumadin. This past week and a half he has severe leg calf pain for no apparent reason.
... He went to ER and had ultra sound, they ruled out another blood clot.

Then days later, that pain eased up and now the other leg calf hurts....now his lower back! He will see doctor tomorrow am. But, just wondering if anyone else had similar issues? He's so young to be having these issues.

agreed ... did he have any medical issues when younger? Perhaps undiagnosed? History may be helpful

Could it be the Coumadin?

it wouldn't be my first thought, but please tell us about his INR management. Highs, lows, frequency of monitoring ... that may shed some light on it.

Or what about this bacteria slow growing infection from the heart-lung machine? Just read about that tonight in the news, says it can take years to show symptoms.

first to hear of that ... I'll look into it a bit. I genuinely can't imagine it for they are (or I would imagine) properly sterilised between uses. I would also imagine that parts would be actually replaced (like they don't reuse many medical things) between uses.

Dr will get lots of questions tomorrow!

I bet!

I'd be investigating that initial infection and to see if he has not got something living in him somewhere that shouldn't be.

I hope you are getting some rest, while I imagine its hard that will put you in the best possible frame of mind to ask questions and grapple with the answers. Take notes and ask questions back here if you are unsatisfied with Dr's answers


your update post said:

They think it's an infection on heart valve or body rejecting the valve.

and yes, I was afraid of that back in the first posts ... to be clear I mean the infection on the heart valve. Have you heard the word vegetative yet? I've never read of a case of the body rejecting the valve, that's normally with living tissue (which valves of your type aren't )

I supect that somewhere (probably the valve) you have a type of Endo that's causing this as chunks of vegetative break off. In that earlier thread I asked about d-dimer tests ... were they done?

Has he in the last month or so had any brief fevers or night sweats?


Best Wishes

 

[Paleowoman]

Very sorry to read what's happened - wishing that now your son is in good hands at the Mayo things move quickly in the right direction.

 

[pellicle]

Anne

... Or what about this bacteria slow growing infection from the heart-lung machine? Just read about that tonight in the news, says it can take years to show symptoms. Dr will get lots of questions tomorrow!

I found this on that subject:

https://consumerist.com/2016/10/13/...inked-to-machine-used-during-heart-surgeries/

While an investigation into an outbreak in Greenville, SC that sickened 15 people and killed four found the bacteria in multiple spots around the hospital, one of those spots was the heater-cooler machine used in chest surgeries.

“Only the heater-cooler device is capable of aerosolizing that bacteria and spraying it directly into the chest cavity during surgery,” an attorney representing one patient’s family in a wrongful death suit against the hospital

so it would appear that its something which is linked to the air flow of the unit not from the blood itself. Interesting.

As it mentions, it may take some time (which has indeed passed) to show up.

None the less the question now is to diagnose the issue and identify a solution.

Something which may not yet be in the "view" of your team is the concept of biofilms. These allow bacteria to live and remain growing on a surface. Let me know if you want me to email you a relatively "plain english" primer on that from a science magazine I happen to subscribe to.

Best Wishes

 

[Agian]

Wish I could give you a hug Anne.

 

[anne casey]

Thank you all for your responses! On day 9 of the blood culture, he was diagnosed with p. Acnes bacteria endocarditis. They had him on a wide spectrum of antibiotics prior to know this, now he is on only the one anti biotic. He had surgery Dec. 1st and went with a mechnical valve this time. He's doing good and all tubes have been removed. Echo today looks good and no bacteria growing on the tissue they removed in surgery. He may go to inpatient rehab as early as tomorrow, because of the stroke. Rehab May last 2 weeks. He still has no movement at all in his left arm and left foot. He walks with a cane. We have been told this is extremely rare. Drs. Agree that this endocarditis caused the spleen Infarct too, but was misdiagnosed as a blood clot. leg cramps and all other aches and pains were related. We have no idea how he got this and will never know. Know we'll all be on pins and needles every time he gets a fever or complains about not feeling "quite right." Obviously, we are upset that this wasn't diagnosed sooner, as he was seeing the cardiologist about issues and I directly asked the cardiologist weeks before the stroke if this could be endocarditis! Also heart broken that he's having to go through so much now, and will he ever recover full use of arm and foot? On the other hand, and most importantly, we feel blessed that we still have our son! And although it was a massive stroke, it didn't affect him anymore than it did! Our small town community is rallying to help us and he's getting lots of support from his friends.

 

[anne casey]

One thing I learned....blood cultures are typically grown only 5 days. These rare type of bacterial will take longer to grow, so if you or a loved one even just suspect endocarditis, please insist that they keep and grow the blood culture for 2 weeks to be sure! What a simple thing could save a life, because who's to say they won't be a "rare" case too!

 

[pellicle]

Anne

I'm so sorry to hear this, while I'm glad a diagnosis has emerged I feel somehow that I should have engaged more on this topic than it apears I have.

One thing I learned....blood cultures are typically grown only 5 days. These rare type of bacterial will take longer to grow, so if you or a loved one even just suspect endocarditis, please insist that they keep and grow the blood culture for 2 weeks to be sure! What a simple thing could save a life, because who's to say they won't be a "rare" case too!

yes if I hadn't mentioned it on your threads then I'm sorry, I thought I had. I've definately mentioned it for others recently (perhaps by email or PM). My surgeon was having an argument with my infection specialist when I was in having post operative infection surgery. The microbiologist said there is no infection. The Surgeon replied well you didn't see all the green pus I pulled out of his chest, so you are wrong.

I've posted before that P Acnes (or fully Propionibacteria Acnes) is commonly the culprit for prosthetics and commonly is ignored in the results due to there being an assumption that it is found in the culture as an accidental contamination from the skin surface.

Its incerasingly recognised as a major source of infection in prosthetics.

I would ask what antibiotic regime your son is on. I would urge you to suggest that he be on antibiotics longer and I would ask you to submit that he is placed on a combo of rifampicin and penecillin. If the bacteria has developed into a biofilm (which I mentioned in my above post and in my view it most assuredly has) then that combination will be the most successful at treating it. If you have not already read my post on my own struggle with this (which thankfully has not as yet infected the prosthesis that we know of) I suggest you read it:

http://www.valvereplacement.org/foru...ges-disturbing

Research papers in mictobilogy suggest that infections by Propioni require co-administration of rifampicin and penecillin to be close to 100% successful at clearing the infection.

For your information I remain on antibiotics to this day ... 500mg 3x daily of amoxicillin. Despite my urging on this matter the specialist treating me has the view that he want's to hold that back for "the nuclear option".

Yet no one has the confidence to stop my existing regime of treatment it in case it is actually still there. Based on my reckoning (and I will remind you that I was actually trained in this) it still is likely to be there there and so I will in all likelyhood be on antibiotics for the rest of my life.

For the benefit of other as well some of my previous posts warning people on Propionibacteria:

http://www.valvereplacement.org/foru...877#post794877

http://www.valvereplacement.org/foru...637#post856637

http://www.valvereplacement.org/foru...841#post864841

http://www.valvereplacement.org/foru...964#post863964

Propioni is often not identified early because:
1) it has a long culture time
2) often requires a multi pronged strategy to identify it with choosing a variety of culture mediums

one almost has to be specifically looking for it because its a slow grower

Anne, do not be duped by your team, they may say "its a weak bacteria" ... but they confuse slow growing with weak.

Anyway, I'm glad a diagnosis has emerged.

Best Wishes

as I've offered before, please feel free to contact me if you wish, although I'm not sure there is much more I can offer now.

 

[Warrick]

I guess upset is an understatement for you, I was quite upset just reading your update, wishing him and you and your family the very best I can and I hope his recovery goes really well and he gets back to full health!

 

[marc_kowal]

Anne,

I wish you and your son the best. As a parent, I can't even begin to imagine how hard this has to be on you. I hope his rehab goes well and makes a full recovery.

 

[anne casey]

Just an update...It's been almost 3 months since my son's stroke due to infective endocarditis. He has finished 6 weeks of IV antibiotics and current blood cultures show no bacteria growing. But he'll do another blood culture next week. He has moved home and taken semester off of collegweek. He walks with a limp, and can't jump or run. His left arm has very limited mobility and nothing in the hand...yet. We have hope tho! Luckily, he's amazing attitude and is keeping in good spirits!

 

[pellicle]

Hi Anne

thanks for your updates, I'm glad he's doing well and the problem is now more clearly known (and being treated successfully)

... He walks with a limp, and can't jump or run. His left arm has very limited mobility and nothing in the hand...yet. We have hope tho! Luckily, he's amazing attitude and is keeping in good spirits!

ya know, as a kid in the library after my first OHS (cos I couldn't do sport for like a year, and my degredation before surgery had seen me separated from my friends for the same reasons) I read a book called
"I can jump puddles"
it was about a boy who got polio (a curse on those who are against vaccines) and became crippled for life. His name was Allan Marshal. I recommend it (and he's a good poet too)

https://www.goodreads.com/book/show/...n_Jump_Puddles

Its philosophy influenced my life

 

[Duffey]

Thanks Anne for the update. I believe your son will recover fully even though it may take some time. We have endured a horrendous situation with an accident our nephew suffered in October. He's still hospitalized, but they are making plans for home care in March when they expect to discharge him. He was unable to move legs or arms for several months but is now taking 150 steps with help. The human body and spirit are capable of miraculous recoveries. My thoughts and prayers are with you all. Mary

 

[pellicle]

Hi

.... We have endured a horrendous situation with an accident our nephew suffered in October. He's still hospitalized,

Sorry to hear of this. Best Wishes for his recovery