Not going so well

[looneytunes]

I haven't been on much lately due to this crazy life called "renal failure".  We have had 4 hospital visits since June and it looks like today may be the 5th.  In June, hubby had an infection from his AV cath.  A weeks stay in the hospital and it was pulled and another one placed since the fistula he had built in March still wasn't developed to be useable yet.  A fistulagram in May showed that his vascular system wasn't in real good condition but the surgeon felt that with time it would be ok.  We used the catheter from June until early August when we were trained to use the fistula.  Things went along all right until late August and we had a great aterial buttonhole going.  The venous side was a little tougher because there is only about 4 inches of fistula that can be seen/felt/stuck.  After an infiltration on the venous line that the neph suspects was due to the fistula not being mature enough, a hardness developed that heat/ice/exercise didn't seem to affect.  So, we had to try to get the venous line in wherever we could.  Late August, he had another catheter infection (though we had not used it for several weeks) and another hospital stay.  Pulled that catheter and we continued to work with the fistula.  Mid September, we were not able to get the venous line set at all most days.  When I would stick him in what appeared to be a great spot, the fistula would not allow the needle to penetrate.  Lots of pressure, no luck.  Nurses would tell me to "keep trying". 

Finally, the nurse asked us to come to the clinic.  We drove the 2 hours and 2 experienced nurses stuck him 5 to 7 times each with no luck.  Hm....this fistula is not cooperating.  Finally one nurse was able to set the venous line in a spot so deep I could not feel it at all.  Sent us home to "keep trying".   I was able to set the line about every other day.  Our rule was no more than 5 attempts and then wait till the next day.  After 3 straight days with no dialysis, the nurses at our clinic asked us to come back and have another catheter placed because "he has to dialyze"....hm....So, off we go again for another catheter.  The radiology surgeon had trouble setting it in his chest and though he finally did get it set, he said this will probably be the last one as there was so much scar tissue from prior catheters.  Next option would most likely be the groin.  Hubby says "no way". 

Neph says let's use the catheter exclusively to try and let the fistula heal and maybe develop further.  Nurse says "I just hope you didn't ruin it by sticking it so much"....grrrrr....how does that work with "keep trying"?   

So, we make it into October with the catheter, scared witless that he will get another infection.  Mid October, hubby goes into a seizure during dialysis.  This is a first for him.  No cramping, everything appears normal and fine.  But very soon after his UF goal was met, he noted a spike in his BP, then a huge drop.  It happened so fast, he was not able to call out for me.  I just happened to go back to check on him and found him in this seizure.  I immediately laid him back and started a bolus.  But, he quit breathing and went into cardiac arrest.  I called 911, delivered 2 cardiac thumps and was going to start CPR.  The 2ND thump did the trick and he started breathing again.  When the EMT arrived they did an EKG and it was out of whack so they air lifted him to the hospital where they did all kinds of tests.  They told us there was no permanent damage to his heart and that he was a very lucky man. 

We go along another week here at home and he had another seizure this past Wednesday.  Not to the point he quit breathing but I was in the room at the time it happened and dumped about 500 ml of saline in him.  His BP was normal, spiked very high (195/140) and then dropped within 5 minutes to 82/53.  After he seemed all right, we continued to monitor his BP and it would go up pretty high and 10 minutes later would return to normal.  At one point it went to 185/122 and 2 minutes later was 112/61.  He would not go to the hospital.  I let his nurse know about it and they decided to exchange his cycler thinking it may be out of calibration.  We received the new cycler today.

As of 30 minutes ago, he is running a fever and chilling.  No other symptoms that would fit with a flu or cold.  So, I suspect before the day is out, we may be making that drive again.   I keep teasing him that the hospital is NOT offering frequent flyer miles or rewards points.  But in all seriousness, we may have another catheter infection.  One nurse told me that once staph gets into the bloodstream it really never goes away, just lies dormant for a while.  He does not want to go to the hospital again but I have a call in to the doctor now.

Wow...what a long post.  Just getting it off my chest and into words.    Thanks for listening (reading) my friends. 

[boswife]

Im quite choked up. Hubby asking questions and i cant even answer.  My heart goes out to you loonytoons and i cant even control my emotions.  Way to close to home    I hope this day brings better news than your feeling right now, and all will get taken care of and all will be well.  Im feeling just heart sick for you.. Bless you, and prayers for you both. 

[Poppylicious]

Yikes Looney!  My heart goes out to you too.  How scary and frustrating for all this to be going on.  Will be thinking of you and hoping that you don't end up at the hospital again.

*huggles*

[monrein]

Sending you my strongest support thoughts through cyber space, looneytunes.  Lord you guys have been through the wringer and still in there too.  The chills and fever does sound like a dormant infection somewhere, given the history but the main thing is that it's all too scary to be at home with, just the two of you.   

[Jean]

Oh gosh, looneytunes, I feel so badly for you I could just cry. How scary is all of this stuff. I would be out of my mind if I was doing what you are doing. Prayers for you and Hubby both, I hope something begins to get right for you.   

[Mizar]

 I'm Sorry, this is happening to You both.  Being on a Roller Coaster Ride, is Fun, for Two Minutes. Living on a Roller Coaster Ride, is not.
 Please keep us Informed, as to how He is doing.   Prayers, to You both.

[okarol]

  That was so difficult to read. I am amazed at your calmness in the face of such high stress episodes. I think I would see that he gets thoroughly evaluated and stabilized. It does sound like an infection but it could also be the flu. In either case he sounds like he is in a potentially perilous condition and I think you're going to have to insist that he let you get him checked out. I am so sorry you've been through all this trauma. It's heartbreaking. Please take care and know we are thinking of you and hubby. 

[chook]

 

[natnnnat]

Hoping for the best for you LT, maybe I guess a quick diagnosis and no more nonsense.  But usually there is so much nonsense isn't there.  Let us know what happens.
I know what you mean about him not wanting to go to the hospital.  I wouldn't want to go either probably.   

[texasstyle]

Thinking of you....

[boswife]

hoping today is bring some goodness for you...

[looneytunes]

Thanks for all the well wishes, IHD gang.  I did bring him to the hospital Sunday afternoon and it was another scary ride. Temps spiking to 104.7 and me driving while putting the thermometer in his mouth, ice packs on his chest and neck and cool cloths on his head.  He was struggling so hard to stay alert this time because he knows how badly I was scared the last two times when he was unresponsive.   I tease him about starting my second career as an ambulance driver.....

They pumped him full of Vanco and Fortis for two days and there was no positive response.  Still spiking high temps and kind of "in and out" through yesterday.  So yesterday afternoon, they started Linezolid and though they have not finished growing the cultures, the neph seems to think this bug is the VRSA strain and this is a recurrence of the last infection.  As of this morning, he seems to be feeling a little better, but still not his perky self.   But he is talkative and wants biscuits and gravy for breakfast.  That's an improvement!

Yesterday, they did an echocardiogram and also "scoped" the tunnel his cath was in and said there was no sign of infection in the tissue so they were able to thread a wire through it, pull it out and put a new one in the same spot.  I was so relieved that he didn't wake up with a cath in his groin.  He would have been devastated.  They also started an Indium scan to see if they can locate where in his body this bacteria has found a home and if it is in an area they can treat.  They should finish it up today.  They used the new cath to dialyze him yesterday. 

As to the fistula...the neph says he's convinced that it's not going to develop to the point of using it again and that is why it failed.  It just did not grow like it should have.  He also thinks hubby's vascular system is not going to cooperate (it's in pretty bad shape apparently) in trying to build another one.  So...his recommendation was that we try a graft and right away.  He said that as soon as we get the infection under control, he will set up a surgeon to put in a graft but in no case does he want hubby to have this or any other catheter still in place 3 weeks from now. 

It seems like the big concern right now is the infection.  My concern is that I have read that grafts are also prone to infection though not to the same degree as a cath.  If he has become home to a mega-bug, will he continue to have these episodes of sepsis? 

Well, I hope everyone out there has a great day.  I can tell you my rear end is not getting along with the chairs in this room so I might try to get outside a little and walk around today since he is showing signs of improvement.  Thanks again to all of you, you're my rock.

[Poppylicious]

Oh Looney ... I'm pleased he's perkier today and I hope they can get to the cause of the infection and sort it out. *hugs* for you and your rear end!

This is completely off-topic, but ... biscuits and gravy ... eh?! Over here a biscuit is a sweet sugary food (often with chocolate on top, yum!) like your cookies and we have gravy on meat.  I remember reading a Virginia Andrews novel when I was a teenager (which made me think of America in a fabulously weird way!) and the characters had biscuits and gravy for breakfast.  Confused!  What is the American definition of 'biscuit'?!

 

[cariad]

Wow, Looney - I am following your story closely and feeling helpless to offer you anything but my most positive thoughts for your husband's quick and total recovery. I know little about infection, so cannot answer your question about sepsis. I had a graft as a kid (I believe a Scribner shunt qualifies as a graft?? I actually am not certain....). Anyhow, you can imagine that kids are not the best about worrying about infection or anything of that nature, and I never had a problem with it. There was a little tube of blood that arched over the side of my wrist, and I would play with it. In the six weeks or so that I had it, no probs at all. So glad he seems to be improving. Wanting to eat is always a good sign....

As to the biscuits and gravy, that's really southern food, not found too often up north - I have had the vegetarian version, but never the sausagey type. There does not seem to be a British version of a biscuit, or 'buttermilk biscuit' if you prefer to differentiate from the British I remember having this same conversation with Gwyn some years ago. (My in-laws love to call biscuits 'cookies' around me, makes them feel down with the American lingo....) It is like a scone, but not really, and not sweet. More of a heavy, flaky roll. Very easy to make, so if you fancy giving it a go, check foodnetwork.com or epicurious and search for recipes.

Please keep the updates coming, Looney. And do remember to give yourself breaks often. You'll be doing yourself and your husband a world of good.

[boswife]

oh boy, its good to hear all is going along a bit better, but i know the exhaustion it all brings and the fears.  And i KNOW those chairs   Our last stent he wasnt infection or anything, so he scooted over and i slept right there in that hospital bed with him.. I just couldnt sit up anylonger and it worked out fine. (i usually do that but not when infections are involved)  Im so sorry your going through all this and hoping your home for at least the eve and can get some rest and comfort.  Praying for you both.. And sending hugs ..
hope tomorrow brings good news..

[okarol]

I am relieved to hear he's a little better. Here's hoping each day improves. 

[paris]

Keeping both of you in my thoughts and prayers.  I have been missing your posts lately.   You have certainly been going through too much.  Take care of yourself during this time.

[looneytunes]

Well, the "big gun" got the infection under control, his white cell counts are almost back to normal as of this evening.  But, it made him so sick that I was worried the infection was getting worse, not better.  But, no fever so I knew it had to be the antibiotics.   So, as of this afternoon, he has been changed over to a penicillin based antibiotic because his neph did not want to expose the bacteria to the Zyvox too long.  The Indium Scan did not show any source of infection anywhere else, just the bloodstream.  So that is a good thing.  He will be on antibiotics for about 2 more weeks and maybe a little longer.  It is possible they will release him tomorrow to go home as long as he has had no fever for 24 hours and his white cell count remains at it's current level when they draw labs in the morning. 

The fistulagram done today confirmed his arteries are "toast" and will not support this or any other fistula attempt.  So we will be going to St. Louis Monday to have a graft put in and then back to using NxStage until the graft is ready to be used.  I know next to nothing about grafts so...let the learning begin.   I'm sure I'll have a few questions when we get that piece of it done.   

I don't really feel like we dodged a bullet this time as much as I feel we took a hit but it missed our vital organs.  Given the rapid onset of this round of infection, I won't be comfortable leaving him alone which is going to make it tough for me to take care of the cattle this winter.  I am working on a plan to deal with that now though.   

My thanks to all of you for the support.  Though I had not been on much lately because of all the bumps in our ride, you all were there for us.  That's what IHD is and that's why it is a privilege to be a member of such a great family.

And Poppy....you HAVE to try biscuits and gravy made the "Southern" way.  I'll try to PM you a recipe to make the "cookies" (that's such a fun way to think of buttermilk biscuits) and gravy when we get back home from St. Louis.



   

[silverhead]

I have been riding the roller coaster with you, so glad things are better now, and darn it, I had to go to the store today and get some Jimmy Dean "hot" sausage so I can make some Biscuits and Gravy tomorrow......

[Poppylicious]

And Poppy....you HAVE to try biscuits and gravy made the "Southern" way.  I'll try to PM you a recipe to make the "cookies" (that's such a fun way to think of buttermilk biscuits) and gravy when we get back home from St. Louis.

Cheers, my love!

And many *huggles* ... hope he's home tomorrow.

As to the biscuits and gravy, that's really southern food, not found too often up north - I have had the vegetarian version, but never the sausagey type. There does not seem to be a British version of a biscuit, or 'buttermilk biscuit' if you prefer to differentiate from the British I remember having this same conversation with Gwyn some years ago. (My in-laws love to call biscuits 'cookies' around me, makes them feel down with the American lingo....) It is like a scone, but not really, and not sweet. More of a heavy, flaky roll. Very easy to make, so if you fancy giving it a go, check foodnetwork.com or epicurious and search for recipes. 

I wondered if it was like a scone, but decided it might not be!

 

[boswife]

Im so glad that this outcome is doable!  Its a hard ride and im sorry you've had your share of ridding the "big"one     Man, it wears ya out, and leaves your heart fearful.  I hope things will work out with the cattle and all.  I know how ya feel about leaving him.  I dont leave my hubby either, UNLESS, his bro, or one of our kids are arround to keep an eye.  Some think i baby him, but others thank me for it so i just do what i do.  Bless ya, and give you strength. 
AND,,,,, ya might as well just post your "biscuits and gravy made the "Southern" way" right here and now..lol   I'd love to have YOUR recepie too :-)
But i'd first like you to have good rest before taking care of us here too 

[MooseMom]

Oh my goodness...what an awful time you and your hubby have had.  It's just not fair...not fair at all.  I am so sorry that you are having to go through this.  I wish there was something we could all do for you to help you on a more practical level.  I hope it helps to know that we are all rooting for you and are here to support you.  Please keep us posted.

(While I lived in the UK, I had to go through the whole "cookies are biscuits and chips are crisps" conversations.  There is nothing like southern biscuits and gravy in England; sometimes you just have to put away the analogies and experience things as they are.  On the other hand, I sorta liken biscuits and gravy with Yorkshire pudding with gravy...both are savory as opposed to sweet.  However, the gravy served with puddings are beef based while the gravy traditionally served with biscuits is made with sausage.)

[looneytunes]

ARRRRGGGGHHHHH!!  That was a scream into cyberspace!      We got home from the hospital last night with instructions from our neph to be sure and run hubby on our NxStage when we got home because his potassium was high in his labs yesterday morning.  So...I set up the machine, hooked him up and his new catheter would not allow any blood flow on the arterial side.  I could not aspirate it at all.  But, I could push saline in it.  The venous side would aspirate but not smoothly.  So, I hooked him up backwards and in the space of 2 hours, I reset the machine for pressure alarms at least 50 times.  It didn't matter if we were running at 250 or 350, the arterial pressure would jump from 190 to 450 to 386 to 211 to 425 and so on.  Alarm after alarm. 

After 2 hours, I took him off and called the "emergency" number for our clinic.  And..got an invitation to leave a message on a voicemail.  Apparently, they didn't get the phones switched over to the answering service when they closed.  Since it was a Friday night, and I had the personal cell phone number of our favorite nurse, I called her at home.  She was very concerned and set things in motion for us to make that 2 hour drive today to go to the clinic for them to run him on one of the big machines.  The neph on call this weekend is going to talk to the surgeon who is putting in hubby's graft Monday to see if he will also take care of the catheter problem. 

So...if the catheter has to come out...it may yet have to be placed in his groin and he is totally adamant he does not want that. 

Situation normal....all screwed up! 

[boswife]

Im so so sorry.  Im worried for you wearing out too.  Mabie tomorrow will fix things up.  Hubby may not want the groin thing, but it' s not forever.. Im so sorry for what your going througn.

[Poppylicious]

*screams* too!  Oh Looney!  Thinking of you ... hope that tomorrow sees some sort of outcome.

*huggles*