NEED PRAYER NOW

Miri · Mar 24, 2016

It's so frustrating isn't it. I had similar problems with lack of coordination with
my aunt for most of last year, with no one getting to the bottom of what was
causing so many problems and no one seemingly feeling inclined to go out of their
way to find out.

She spent a week in hospital very ill Jan 15
Then two month at home also very ill.
She picked up for a while then started to get ill again in May
Then she had cataract surgery in June 15 she wasn't too great then. I took 3 weeks off work
to help with eye care (drops 4 times a day).
Went back to work early July, first day back at work I got a call from the police to
say she had a fall at home and they smashed the living room window to get in the house.
She fractured her left shoulder and ended up in a half way rehab place for six weeks which
was just awful. I wrote a letter of complaint as she got sicker in there than she ever had at home
I asked them to send her to hospital but they said there was no need.
She got out of that place 1.9.15 gradually became more sick over next 6 weeks during which
time I called our own GP out twice plus two ambulances.
Then mid October she ended back in hosp for 12 weeks with all manner of things going on at
deaths door.

Lynn it's taken exactly 16 months to finally get it all together and sorted and honestly
that's only been down to one person. I have a friend who is a nurse who happened
to mention the community matron service to me. She said their aim is to keep people
out of hospital and be proactive in dealing with things before they get out of hand.
Also to coordinate everything medically speaking.

So I asked our GP about this in middle of February 16 and he said yes I will refer your aunt.
Why on earth it was never mentioned before I have no idea. It turns out that my aunt
is exactly the sort of person this service is aimed at, but I had never heard of then before
and no one thought to refer us before.

They have been a God send. The person - a man - has been explaining everything no one
else has bothered to do. He has all my aunt's medical history and has been pulling strings
to get things sorted for us. For example my aunt was 58 on a list of people in line to see the
occupational therapy team - months away. Now she is 8 on the list following a little
chat he had with them.

He has explained all her medical issue in a way no one else has. He has been visiting every two
weeks, whereas without this service we would not have had anyone to give advice since she
came out of hospital. GPs only come out when there is something medical to deal with - after
the fact as it were. They also only have limited time. Whereas each visit by the community
matron has been about an hour or so.

We now finally have a better understanding of what causes my aunt's problems,
what to look out for.

Some of her meds were increasing her potassium levels to dangerously high levels.
This went on for a year with no one dealing with it, she also has low oxygen sat levels
and her body can't get rid of carbon as it should so she is now on oxygen. Antibiotics which
she has been pumped full of over the last 12 months cause her adverse reactions. Sigh.
So they have stopped some meds, supplied oxygen system and are monitoring her
more carefully.

Anyway praying for you Lynn that a person will be found to be a medical advocate for
John and you to bring everything together. it's what you need. Praying God will
send you just the right person who will take an interest in John and put his care
first.

God bless
x

Depleted · Mar 24, 2016

Miri said:

What were the adverse effects of too much antibiotics? John's been on a strong bout of them for 8 weeks now, with a one week reprieve in the middle. (First he got C-diff, which I kept telling doctors he's prone to, but it couldn't be helped to protect that new valve. Then he got hospital based MRSA on his wound.) He's still got two more weeks of them, so I've been waiting for that ugly head to reveal itself. I just don't know what I'm looking for.

And, sadly, we do have advocates over here, but like so many federal-level mandates, they're part of the problem, instead of the solution. The first one "helped" by telling me I'd meet with John's whole team. While I'm waiting to get word of when, the usual amount of strangers came into John's room. Back then he averaged three a day -- pulmonary expert, kidney expert, (except that has a name I didn't recognize that's what it meant until I was told his kidney was functioning again, when I didn't even know it had ever stopped functioning), experts who made sure his machines worked right, wound-care, and so much more. And about once out of every five visits when I was sitting there, they'd ask me if I had any questions. I had lots of questions, but the wound-care specialist knew nothing about the ventilator, and the kidney expert knew nothing about when John would eat again, so I gave up asking them questions, because I had no idea who they were and what their expertise was to think of those particular questions in the entire three seconds they gave me to think of the questions. But one day after seeing the patient advocate some nurse specialist came in to see if I had any questions. Little did I know, until I complained again, that was my meeting with the team.

And at the VA they had a palliative nurse come in to roust John from his funk. That really did help him then. Do you know what a palliative nurse means? Neither did I until I looked up palliative. She was supposed to advocate. She advocated all right. She's the lady that told us it was no big deal he got MRSA because it wasn't active. I bought that until I looked it up. It's a bacteria that can cause serious rashes and infection but only near open wounds. His was on his bedore. That IS already a serious wound! It's never inactive. And it's directly related to hospital care. So, the only way that got on his wound was when they dressed the wound!

Then the day before John was kicked out of the hospital into rehab, she advocated again. That was the day John really did meet his "team," so we could be talked out of the VA rehab center that's free. She is the one who told us the committee that chooses who gets placed in the short-term unit only meets once a month, and they didn't accept John already. I had no idea what was going on then, so I told her the truth. That same center had accepted him two other times in the last five weeks, so it seemed odd that this time they didn't. I saw the looks on her face, John's social worker's face, John's doctor's face, and her two lapdog's faces. Only one of those people knew that -- John's doctor. No one believed me, but they saw her look and believed her.

The next day his social worker found they still had that spot opened, (later on, I found out they keep it open for 30 days, so they had been waiting for him), and he was whisked to there.

So John's advocates advocated well -- for the hospitals. Not for him.

A week after John was transferred, I read Charles Spurgeon's Morning devotional, and he used palliate. I had to look it up after all this. And, I still had his Palliative Nurse's business card, which includes an email address. I wrote to her, included Spurgeon's devotional and told her what she had done. Then I reminded her that her job was supposed to be the first definition of palliate, not the second.

pal·li·at·edpal·li·at·ing

[h=6]transitive verb[/h]
1: to reduce the violence of (a disease); also : to ease (symptoms) without curing the underlying disease
2: to cover by excuses and apologies
3: to moderate the intensity of <trying to palliate the boredom>

I don't trust patient advocates anymore. The phrase is an oxymoron over here. But I'm glad you got one for you and your aunt. I know I'm not being told the whole truth, but I can't guess what the proper question is to get at the truth either. It feels like there is the secret phrase that would unlock a doctor's mouth, but who knows what that phrase is? Your answer was "community matron." Let everyone around you know the secret phrase, because even if they don't have the problems now, they might in the future or they might know someone who knows someone.

Her doctors never mentioned something like that or they might have to spill the beans that they forgot to monitor her potassium levels. John's blood level was just at what his "team" said was "normal" a few weeks ago. Now suddenly "normal" meant he needed two pints of blood. I'm fully aware they aren't telling me something. I don't know the secret phrase to get them to talk.

I suspect it's "the statute of limitations for suing for malpractice is up." That's when my doctors finally felt free to tell me what caused my disability. It was fixable in 1999 when it happened. It wasn't in 2014, when they told me what happened. And I ended up going back to the doctor who couldn't figure it out as it was happening, so she forgot to keep hiding it and simply told me the cause.

My lack of trust for the medical community was earned, but there is no other option, (given God has chosen to not use the miracle option.)

Miri · Mar 24, 2016

Hi, I found the Internet very useful for looking up information and looked up
several sources to check my medical facts . That helped in tryng to understand
the numbers and understanding medical speak. I also took an active interest
in my Aunt's charts and questioned everything.

It helped a lot, but being a non medical person, it didn't help when they did not
bother to do the right tests or try to find out what was the root cause of her illness.

Re the antibiotics, on certain ones she gets delirium which in turn makes it
harder to treat her as she is less likely to cooperate. But in hospital as she
got more uncorporative, they just treated her as an old demented pensioner so
they became less inclined to take her medical issues seriously.

She was admitted mid September at deaths door, by week 5 she was ready to come
home. All that time she had a catheter in place and a bag to collect urine. I found
out later that it could have been removed by week two but they left it in longer
as it's just easier for the staff to change a catheter bag, instead of having to keep
cleaning up a person in bed or take a commode and supervise patients on and off it.

So week five we were looking forward to dates for her coming home, then she started
to go downhill again. It turned out she had a really serious water infection from the
cathetor. Most water infections clear up with just a 4 day course of antibiotics, which
is about as much as my aunt can take before the delirium becomes serious. But it was
so bad they had to put her on a high dose of IV antibiotics for 10 straight days, but
this stretched to 15 days as they lost part 1 of her charts so lost track of how long she
was on them.

She really went down hill mentally and practically lived in a hallucinogenic world for
all those days. The staff later announced she was off the antibiotics but the confusion
and hallucinations would not go away. The staff once again started to treat her as
a demented old lady but I kept saying something was still wrong, could she still
have a water infection.

They all said no but no one had actually bothered to test her, they just assumed
the antibiotics had done their job. So after nagging and nagging they did eventually
test her again two week later to find she still had a water infection!

So they tried her on another type of antibiotics a stronger dose. Mentally she was so
bad that I wondered if she would ever be fit mentally to come home again.

Eventually they got the water infection under control but all those antibiotics also
caused physical issues, she got really bad fungal infections, she also started with
real bad diarriah which cause dehydration and caused weakness, stomach problems etc.

In all the last hosp period lasted 12 week, double what it should have lasted, caused
by a lack of judgement by the staff. She came home with really bad diarriah and fungal
infections. Which lasted another 8 weeks after she got home.

The antibiotics were the cause but no one would admit it. So I started giving her probiotic
yoghurts and supplements. The community matron later told me this was the right thing
to do as the antibiotics would have destroyed all the good gut bacteria and other good
bacteria in her body generally.

I noticed she also bruised very easily and came across the following on the Internet.
So I started to make sure we had lots of green veg. The brusing does not seem so bad
now. I cannot categorically say the antibiotics were the cause of this, but I did wonder if they
might have played a part in this. See the following link about Vit K made in the gut which
is affected by antibiotics.

Vitamin K - Penn State Hershey Medical Center

Incidentally it says people on warfarin should not take Vit K as it reduces the effect of
warferin. You might need to be aware of this.

Depleted · Mar 25, 2016

Miri said:

Hi, I found the Internet very useful for looking up information and looked up
several sources to check my medical facts . That helped in tryng to understand
the numbers and understanding medical speak. I also took an active interest
in my Aunt's charts and questioned everything.

It helped a lot, but being a non medical person, it didn't help when they did not
bother to do the right tests or try to find out what was the root cause of her illness.

Re the antibiotics, on certain ones she gets delirium which in turn makes it
harder to treat her as she is less likely to cooperate. But in hospital as she
got more uncorporative, they just treated her as an old demented pensioner so
they became less inclined to take her medical issues seriously.

She was admitted mid September at deaths door, by week 5 she was ready to come
home. All that time she had a catheter in place and a bag to collect urine. I found
out later that it could have been removed by week two but they left it in longer
as it's just easier for the staff to change a catheter bag, instead of having to keep
cleaning up a person in bed or take a commode and supervise patients on and off it.

So week five we were looking forward to dates for her coming home, then she started
to go downhill again. It turned out she had a really serious water infection from the
cathetor. Most water infections clear up with just a 4 day course of antibiotics, which
is about as much as my aunt can take before the delirium becomes serious. But it was
so bad they had to put her on a high dose of IV antibiotics for 10 straight days, but
this stretched to 15 days as they lost part 1 of her charts so lost track of how long she
was on them.

She really went down hill mentally and practically lived in a hallucinogenic world for
all those days. The staff later announced she was off the antibiotics but the confusion
and hallucinations would not go away. The staff once again started to treat her as
a demented old lady but I kept saying something was still wrong, could she still
have a water infection.

They all said no but no one had actually bothered to test her, they just assumed
the antibiotics had done their job. So after nagging and nagging they did eventually
test her again two week later to find she still had a water infection!

So they tried her on another type of antibiotics a stronger dose. Mentally she was so
bad that I wondered if she would ever be fit mentally to come home again.

Eventually they got the water infection under control but all those antibiotics also
caused physical issues, she got really bad fungal infections, she also started with
real bad diarriah which cause dehydration and caused weakness, stomach problems etc.

In all the last hosp period lasted 12 week, double what it should have lasted, caused
by a lack of judgement by the staff. She came home with really bad diarriah and fungal
infections. Which lasted another 8 weeks after she got home.

The antibiotics were the cause but no one would admit it. So I started giving her probiotic
yoghurts and supplements. The community matron later told me this was the right thing
to do as the antibiotics would have destroyed all the good gut bacteria and other good
bacteria in her body generally.

I noticed she also bruised very easily and came across the following on the Internet.
So I started to make sure we had lots of green veg. The brusing does not seem so bad
now. I cannot categorically say the antibiotics were the cause of this, but I did wonder if they
might have played a part in this. See the following link about Vit K made in the gut which
is affected by antibiotics.

Vitamin K - Penn State Hershey Medical Center

Incidentally it says people on warfarin should not take Vit K as it reduces the effect of
warferin. You might need to be aware of this.

Yeah, John found out today he will spend the rest f his life on warfarin. He's upset because he likes salad occasionally. but it has vit. k.

He's also upset that he has to go to the hospital for once a week for iron transfusions. He doesn't mind the IV. He minds that they want him in ged. In bed means tush pain.

In the beginning, before he got the valve, he had a scary day of AFib. Found out today he continues to have it, (judy not so bad. That's why he'll be on warfarin.

On the good news, he can get off his tush by rolling on his side now. And his hospital PT worked him out while he got the iron. He sat. He hasn't done that in weeks because of his tush, but these are the exercises that get him in his chair soon.

His chair stopped being a torture chair. Now it is freedom.

He id moving around in his bed so often, the bed it ratting on him. It thinks he rolled out g it. He told he hasn't mastered scootchy. A few minutes later the bed went off. *Loud buzzer.) He asked what he had done. I told him he scootchied. lol

Depleted · Mar 27, 2016

On Thursday, doctors let us in on a little secret no one seemed to know until then. Ever since John's valve was replaced, he has had AFib. Because of that, he will be on Warfarin for the rest of his life, including needing to get his blood tested regularly. (Hard to do when you have chronic insomnia, since blood tests usually have to be done after an eight hour fast of food or liquids.)

Three weeks ago, a nurse was clipping his fingernails. 19 weeks in the hospital, then rehab, and the only person who clipped his nails in all that time was me. Once. (Four weeks ago.) He was afraid I'd cut too close, so they were still long -- for a guy -- when I was done. She nicked his pinky so small, he didn't even feel it, but it gushed for 10 hours and had to be wrapped properly by the wound specialist the next day. Ten days later before the bandage came off, but we still don't dare wipe it too clean for fear the scab with come off and it starts up again. BUT, we also learned he should have been taken off one of his blood thinners when he was transferred to the rehab. (His hospital doctors knew that but didn't put it in his notes.) So when he spent those 2.5 days back in the hospital he supposedly went from two blood thinners to one.

And then last week, he was ready to do his own nails. (First time he had enough strength to do that, which felt good, and if anyone knows if the cut is too close to skin, the person with the skin would know. Also, his fingernails were so long that he scratched his stomach and then that bleed for hours.) I saw the tiniest nick under his other pinky. On normal person, it would have stopped bleeding before it got to the end of his just-cut fingernail, but blood thinners make him not-normal, so that bled only like a mild nose bleed off and on for the next 24 hours. (And we both got nicely scolded by the nurses -- very sweet about it, but it was a scold lol -- for cutting his nails.)

But the same day we found out he'd be on warfarin forever, we also learned he was on another blood thinner still. (Plavix.) (I so love how doctors don't think the patient needs to know what's going on. Yup, dripping with sarcasm.)

So, this all happened right before the Easter weekend, giving me plenty of time to work up a good worry -- my specialty.My Dad was on a blood thinner. He bumped his arm lightly against the corner of his dishwasher. The kind of bump where you have to scramble not to lose the dish in your hand, but it doesn't hurt. But his whole arm was bruised within 2 seconds.

My fear -- John's favor thing to do is make dinner from scratch, so he cuts the beggies. And about three times a year he cuts himself. I've tried to stop the blood flow from the pinky. I was changing tissues every five minutes. (He hates wasting the time I'm there visiting on waiting around for nurses to bandage a cut that doesn't want to stop bleeding.) Will he have to give up cutting veggies? He likes doing that. It's soothing and artistic expression for ihm, so me doing it would deflate his passion.

That's up there with me no longer being able to take pictures of my garden. It doesn't sound like much, but giving up that one task really takes a joy out of life. That and half the veggies we eat have to be carefully monitored because they have Vit. K, which is a natural blood thinner.

It's not like losing kidney function or finding out he has a 4-6 inch deep hole in his tush bad, but it is equally as bad on the "Love to do this" list, and his list was too short before all this hit. So, pray I'm wrong.

Miri · Mar 28, 2016

Hi Lynn, I know a few people on warfarin the they seem able to get on with
life without worrying about nicks and cuts. One is friend who developed a
blood clot in her leg which went into her lungs, she nearly died and has been on
warferin ever since.

I dunna about John, maybe they will reduce the warfarin over time.
I think there can be other reasons also why a person may bleed easily, if
platelets levels are too low.

Hopefully when he comes home a lot of these issues will be resolved.

Still praying for you both, its a worry isn't it.

x

Depleted · Mar 28, 2016

I'm losing heart again.

When John was released from the hospital they said that they were pretty sure he had stopped bleeding internal, but "if he needs another pint or two, the rehab can do it there." And then he was shipped off to the rehab on March 4th.

He was shipped back to the hospital for 2.5 days (and THREE rooms in those 2.5 days) to get two pints of blood, because rehab doesn't give blood there. In the 2.5 days, the GI said it wasn't his fault, because John's not bleeding in his intestinal tract, so it's probably the wound vac. (2.5 days to say, "It's not my fault.") He went back to rehab.

And the following week he went back for one pint and was returned.

Last week, he had such serious enema, (which, for the record, means there's not enough iron in the BLOOD, aka often caused by lack of blood), so he was shipped back to the hospital on March 24th for the day to get iron by an IV. The hematologist said he'd need to come back once a week for the next five weeks (again, because rehab does not do this!) to stop him from being anemic.

I went to see him today only to run into the ambulance team taking him back to the hospital, because... you guessed it, his blood count is too low, so he needs more blood. (And, to be clear -- he got iron AT THE HOSPITAL on Thursday, so no way this is anything but he's losing blood constantly! If it doesn't even last five days, something is seriously wrong, yet everyone is busy saying, "It's not my fault!" And "He needs blood thinners, because of his heart?" (only to later add, "and, oh yeah, he has AFib.")

The heart attack didn't kill him. The massive heart attack didn't kill him. Putting in three stents didn't kill him. The pneumonia didn't kill him. Kidney failure didn't kill him. A massive infection didn't kill him. A day of intense AFib didn't kill him. Putting in a pig valve and tissues into his heart didn't kill him. A bed wound so big you could use it as a coffee mug didn't kill him. C-diff didn't kill him. MRSA didn't kill him. Complete imbeciles at the hospitals CYBing might though!

This is it, isn't it? Week by week, and then shorter time periods, they're going to keep taking him back to that DAMN hospital, until his blood (and everybody else's blood on the planet that have his type, because at least 60 pints so far) just gives up! And the final thing I hear from all the medical people is, "We did all we could do."

Depleted · Mar 29, 2016

It's not his ulcer. This is the moment we both lost all hope. John will slowly and painfully die in that hospital.

Spoonfulofsugar · Mar 29, 2016

Depleted said:

Do you have someone there with you to give you a hug and hold your hand and pray? What you are going through is hard. Hard isnt the word for it. I will keep you lifted up.
Father I pray you give Lynn strength in this time of painful heart wrenching trials. Give her peace and understanding of the situation that only you can provide. Help her to be strong so she can be strong for John as he continues on this road. We are praying for a miracle Lord but if that is not your will,we ask that you make the rest of his days peace and grace over flowing . We thank you for the assurance of salvation you have provided for all and we thank you for all the time you have given them together. Your will be done Lord. In Jesus precious holy name we pray,Amen

Miri · Mar 29, 2016

Aw Lyn, chin up you have both come through so much.

Lord we pray for Lynn and John, you know what is going on even if
the medical staff don't. Lord I prayer for healing for John that the cause of this
bleeding will cease and the true reason for it will be revealed. Lord bless John and
Lynn give them strength. Cause the medical staff to deal with this properly and
stop messing around.

Lord by you all things were made that were made including our bodies there is no
mystery here just a lack of knowledge. Lord I prayer that the hidden things would be
revealed both physically and spiritually in this situation.

Amen

Depleted · Mar 29, 2016

They figured out a possible way to stop the bleeding. They took him off the warfarin. They took him off it within an hour of telling us he'd be on it for life too. And they told us he would be on it for life, because he has AFib, plus he had a clot in his leg already, and they don't want him to have a stroke.

They've stuck to their guns about him not having a stroke. He almost had a stroke in 2002. A blood vessel in his head popped. The only reason it wasn't a stroke was because it was in his eyeball. (The blood blocked his vision in the middle of his eye for months.) That was when he learned he had seriously high blood pressure. (He was taking four medications to keep it relatively normal, and his relatively normal isn't normal at all.) A routine blood test at that doctor's appointment also told him he had Hep C. (2B. The only curable Hep C.)

So, there is no win in this. Either the bleeding keeps going anyway and they have no idea where he's bleeding, or he gets a stroke.

Guess who told him that? I did, because his doctors tend to think he really doesn't need to know anything that's happening -- surprise CT scans of his head or the results of any of the tests given, other than to tell him, hey! The ulcer healed!

Yes, I talked to the person who makes me feel better. I went back to see John to give him his need-to-haves (exercise sponges to get his hands back in shape, his Bible, and his MP3 player), and to let him know that surprise CT scan of his head wasn't because of a brain tumor, like he thought. It was to see if the bleeder was in his head. And to tell him about the warfarin. (I had to check if he heard what I heard last Friday. We really both did hear he was on it for life.)

The "doctor" finally got in touch with me at home. And, as usual, the doctor isn't The Doctor, it's another resident recently coming on board -- so recent she doesn't even know who John's attending doctor is. She promised his doctor will call tomorrow morning, because I requested a meeting of all of his doctors together to get the real story. She hopes this meeting with all his doctors will happen, but isn't hopeful all can come. I told her the truth. I'm not hopeful is The Doctor will actually call tomorrow morning. After all, I started at 7 AM trying to contact the doctor, asked twice when I went to visit John between 10-12:30 for her to come, asked before I left to have the doctor come and talk to John (because he had the same questions I had), called back at 3 to ask again, (was told his nurse was out for lunch, but would call me back when she returned), called again at 4, and then finally got that return call at 5:30 -- from the resident who swears she didn't even get the message until 4:30.

John wishes we could win the lottery so he could go to a good hospital. 100 hospitals in this town. It would be tough to find one that actually thinks it's important to both help the patient and talk to the patient to tell what's going on.

skylove7 · Mar 30, 2016

Continuing prayers for John
Amen Amen

skylove7 · Mar 30, 2016

In Jesus Name
Praying to You
Please let the bleeding in John stop, and praying for strength in Lynn
I love You Jesus
Amen

Pilkington · Mar 30, 2016

I am trusting God that John wont die in hospital and will be able to come home. I am praying that the doctors have wisdom and that he will be able to identify the bleed and stop it and that he would be put on the correct medicines.

Have they taken him off wafarin or wafarin and the other blood thinner or Plavix (clopidogrel). Plavix is an anti platelet drug which helps to stops platelets sticking together. Another antiplatelet drug is asprin. Typically with AFIB you are perminantly on wafarin or a another blood thinner not Plavix, but possibly low MW Heparin or other types of drugs which prevent different parts of the clotting caskade. With AFIB, blood pools in the atria, when there is stasis of blood (blood not moving), it will start to clot and then clots will go from the heart to other parts of the body and so you may be at risk of TIA or stroke. In my opinion despite the hassle Wafarin is better than other anti-clotting medicines as it can be reversed by administering Vitamin K to stop a bleed, whereas althought the other anti-clotting medicines don't have to be monitored as closely they can't be reversed you have to wait till they are out of your system (not good if you are bleeding). Wafarin should be monitored closely and they should be checking John's INR. For most conditions the INR should be between (2-3) however it may be allowed to be as a high as 4.5. The higher the INR the more likely you are to bleed, below two you are likely to get clots. The dose of Wafarin needs to be altered to keep the INR in the target range. It we be worth asking to see John's INR's. It is possible they have taken him of the Wafarin because there is no other option. I am wondering if they are also injecting another anti-coagulant once a day.

The DVT is not good, the main risk is not a stroke but a pulmonary embolism where a clot goes to the lungs. There are two types of stoke haemorragic and ischaemic strokes. Most types of strokes are ischaemic where a clot get stuck in one of the blood vessels in the brain. If a blood vessel in the brain ruptures in the same way as the one in the eye it is a haemorragic stroke. ischaemic strokes are usually treated with clot busting drugs if there is no history of bleeding stomach ulcers and certain other conditions. haemorragic strokes can only be delt with if suitable by neurosurgeons who have to clip the blood vessel to stop the bleed. (Currently revising Emergency Medicine for an exam).

Depleted · Mar 30, 2016

He was taken off of warfarin, but he's still on aspirin and Plavix. He's been approved by the rehab doctors to return tomorrow. If he has to go back to the hospital next week to get blood, I'm so going to punch someone! (Not him.)

Last night his resident doctor said the attending physician would call me at home this morning to set up a meeting with his whole team to find out what's going on. I promised to stay home for that call. And I did.

At 9 AM, John called to ask if I had, indeed, held his feed bag hostage until I met with his doctor this morning. (Why would I do stop him from being fed when I've maintained -- to everyone, including John and the resident -- that his doctor will never contact me? And, no he didn't believe that story either.) So, they really are playing some nasty games with us, I do not trust them, I will never trust them, and I will hold my breath until April 8th ever fearful he goes back into that damn hospital with more blood loss.

And, after John did some more prodding, his nurse promised his doctor would call before 11. Apparently, 12:30 is the new 11. The doctor just told me he's been John's doctor throughout his stay, (John met with his old doctor yesterday morning), he would never break his word, and he has no idea what anyone else promised. He never mentioned HE was withholding John's food and ice.

Also, no one ever said a thing about Vitamin K since he was in ICU in the first hospital. And, no, he's going to a nursing home, so they only monitor his blood once a week -- which is why John has gone back to the hospital exactly once a week.

I know this isn't good, but there is no second option.

Pilkington · Mar 30, 2016

Asprin and Plavix are quite effective drugs in preventing clot formation. They both act on platelets to prevent clot formation but work in different ways so you have a greater effect by taking both. Asprin is harsh on the GI tract tending to cause ulcers. Also GI ulcers are common problem seen in ICU patients. I hope that John is on PPI (proton pump inhibitor as this will help to protect against GI ulcers), he particularly needs it if he currently has a GI ulcer as it will help it heal. The only caviat to that is if there is a contra-indication which means he can't have one. The other potential possible drug is a H2 antagonist. While he was in hospital I would have hoped they would have got the INR sorted for the Warfarin but I suspect that is something else they didn't do. If his INR was stable or stablish once a week monitoring would have been more than enough. Also Wafarin has to be taken at the same time each day which hospitals again tend not to be great at.

I am horrified about the food. Can you imagine what the care would be like if you weren't around for you husband. Having been in hospital as a patient some of the avoidable deaths occur due to plain incompetance and not having some-one properly manage or co-ordinate each patients care. I also suspect that most hospitals are as bad as each other or they are good at one particularly thing. Keep a record of everything that happens otherwise things will start to get confusing and it will be harder to get to the bottom of things.

Ariel82 · Mar 30, 2016

Doctor can write an order for more frequent blood monitoring.

Ariel82 · Mar 30, 2016

Dear Lord give all involved clarity, wisdom and the ability to communicate hope and peace and what needs to be done to help John heal and Lynn not punch anyone. In Jesus name we pray, amen.

Miri · Mar 31, 2016

Depleted said:

Lets all go beat them up. Lol Feel like doing it for you. What are they playing at, there
is either a problem with the blood chemistry which they have not sorted or
he is bleeding genuinely from somewhere. Different drugs, meds etc can really
mess up the bodies own systems of them are not finely balanced. It sounds like
they are just rolling a dice.

Lord show everyone the way forward in this matter, give everyone a kick
up the spiritual backside. Break down pride, apathy, irresponsibility.
This is not what was planned for John, we know that Lord, you have brought him
through so much already, I pray in the name of Jesus that there will be
no more of this.

Amen

Depleted · Mar 31, 2016

Nuts! His nose has been bleeding for the last hour! And his nose bleeding has been the sign that he's bleeding internally all along. His doctor told me the warfarin is out of his system.

And in the time it took me to write that first paragraph, his old doctor (who has been gone this entire time, according to his "new doctor") stopped by, heard about the nose bleed, but said it's nothing and he'll be going back to rehab at 11.

I am happier he'll be in rehab, because he likes it there more. I have no hope still that this means he's better. This just means he's still their ping pong ball until game over.

NEED PRAYER NOW

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