Currently....

[paris]

I am happy about the help with the farm, but I also just want to cry for all that you keep going through.  You are a tough lady. Wish I could give you a hand for a few days.  Just to give you a break.   Sending love, good wishes and thanks for being such a good caregiver.   

[boswife]

looney your so brave..  I dont know that its from choice or need (to be brave that is) but how scarry to be going through that at home and a distance from hosp.  I wish you strength and wellness for both of you.. PLEASE pull that rabbit now!!   

[looneytunes]

Paris, thanks for the offer, wish all of us here at IHD did live closer together.  We'd either be able to back each other up or get in a lot of trouble together!      Maybe both! 

BW...I don't think I'm brave at all.  Either by choice or need.   Rest assured, when I have my ambulance driver hat on and speeding down the highway to the hospital, I am terrified. 

We have 14 days to go till we see that Rabbit Pulling Doctor in St. Louis and I'm counting down. 

[Mizar]

Looney, You are in My Thoughts and Prayers, Tonight.

[looneytunes]

Thanks, Mizar...all prayers are appreciated.  It seems all we have had lately (at least in the D world) is bad luck.  Today, his new catheter crapped out.  It doesn't appear to be clotted, it aspirates just fine.  I did the "vigorous flushing" yesterday because we had alarm after alarm (red 24's for NxStage folks) and reset the pressure pod several times.  Nothing helped but we got through that run at a very slow pump speed (and a LONG time in the chair for him).  Today we got just a little over an hour before we had to end treatment due to the same alarms.  Tried switching his lines...nope.  Tried resetting the pod (several times)...nope.  Tried a vigorous flush...nope.  Nothing worked. 

So I called our nurse.  We are to go to the clinic Wednesday and they will try Activase and if that doesn't work, then it's on to St. Louis for removal of this catheter and placement of another.  And we are still on for the vascular specialist appt which is the 26th of this month.  I truly hope this doc can work a miracle for us with a good access that will last a long time. 

Hubby's platelets have dropped again this month.  Now at 6100.  He has felt pretty tough the past 2 weeks but is trying to keep a good attitude about it all.   

So, IHD family, keep those prayers coming.  We sure need them.   

[jbeany]

 

[boswife]

many prayers sent...  This is so hard 

[Bajanne]

My caring thoughts and prayers are with you at this time   Just hang in there and keep on keeping on!!

[billybags]

looney, how are things going now Thinking about you.

[lmunchkin]

Same here, Looney!  Please give us an update.

lmunchkin   

[looneytunes]

Well, we went to St. Louis and now have a brand new catheter, this one is called a HemoStar and it is a different style of catheter than what is used by the hospital we normally go to so the trip was worth it.   He had one of these last November while we were waiting for his graft to heal and it was great.   So far, we ran with it yesterday and today.  He can cough, raise his arms, move around in his chair or stand up and we get no alarms  .   Until we had one of these, we didn't know what a good catheter was!  I am hopeful that this one will hold up to our normal 450 pump speed and this will cut a little time off his daily chair time.  At least to a respectable 4.5 hours instead of 5 +. 

We are still on track to go the the vascular specialist next Friday (26th) and the hemotologist on the 30th.  He had a tough day yesterday but so far today seems to be feeling a little better though seems pretty weak.  Just keep all those prayers going up that the vascular specialist can get a good access in him that will last a long time. 

The best news I got was from our neph on Wednesday when we were discussing the need for a new catheter after just 2 weeks and the general crappy condition of hubby's vascular system.  Our neph assures us that they will NOT put an access in hubby's legs because he is diabetic and already has PAD.  It seems in the past few years the USA has finally figured out the correlation between femoral accesses and diabetics losing limbs...   

Thanks, all of you, for your support and prayers!   

[jbeany]

 

Hope this one holds up as long as he needs it!

[billybags]

this sounds like good news to me. Thinking of you both.

[lmunchkin]

Looney, I pray that things get better for your "J". Hang tough girl!  Thinking of you both! Thanks for up dating us.

lmunch

 

[looneytunes]

We went to St Louis and saw the Vascular Specialist.  I was a little disappointed because he was not interested in anything other than an access for hubby.  But, he thinks he can revise and revive the failed fistula so we are set for surgery sometime in the next 2 weeks.  They will call with a date.   Today we go to the Hemotologist to see if they can find a reason for the declining platelet counts.  Hubby is starting to bleed easily and frequently.  Keep your fingers, toes, eyes and everything else you have crossed for us. 

[billybags]

Wow, Looney, it never stops does it. I hope they do get the fistula going again. what can they do about the platelet count, is it a drug he is taking?

[lmunchkin]

Wish I could give you a hand for a few days.  Just to give you a break.   Sending love, good wishes and thanks for being such a good caregiver.   

I second that Paris!  Hang in there Looney, hopefully VS can get this straightened out.  He must feel pretty confident about it, so go with it!  I think fistulas are the best access going.  They may not be "pretty" to look at, but who Cares!  As long as it works!  You don't have to worry about infections with them, which is so prevalent with catheters!

Prayers to you, my friend

lmunchkin   
 

[boswife]

Keep the faith Loon, and we'll keep prayen    I surly hope all will solve for you REAL soon and get you on a great path... Sending prayers...and 

[looneytunes]

Well, things continue to hop here in Looneytown.  The wonderful new cath crapped out Monday and we had to use Activase to get it going at all.  Now we aren't able to run at much more than 350.  But at least we are still running.   Still no date on the fistula revision.  But, hubby has been feeling a little better and getting out a little more this week. 

Next week he has an abdominal scan and a bone marrow biopsy ordered by the hemotologist.  These are to rule out any really bad possible cause of the low platelet count.   Then we'll see if there is anything treatable or do we just watch the count for a while. 

Today was his 56th birthday.  It's been an enjoyable day with dinner out.  We came home and set fire to a huge brushpile and sat outside watching the fire for a while. 

[lmunchkin]

Awe, happy birthday Looney's hubby.     I don't know how the weather is up there at night, but if it is like it is here, you had a good one for a fire!!!! Sorry for my ignorance, but what is Activase?  Is it a sauve or an instrument?  Has the VS given any time frame at all? I just don't understand these doctors now days!

Girl, keep your head upward! Know that we are with you through all of this!  Keep us informed.

lmunchkin

[looneytunes]

Hubby had cataract surgery last Monday on his left eye.  Tuesday he had an abdominal scan and bone marrow biopsy ordered by the hemotologist.  We FINALLY got word from the Vascular Surgeon.  We are to be in St. Louis Monday for the fistula revision/revival attempt.   Let's hope it works and stays working for a long time!    

Then Tuesday we will go to the hemotologist for his findings and treatment plan if any.  We also will go to the vision clinic for a recheck on his left eye.  As long as it is doing well, and it seems to be, the right eye will be done on the 26th.  I am thrilled he is able to see a little better and hopeful his vision will be good enough to drive again. 

That's about all that's happening here in Looneytown. 

[lmunchkin]

Looney, Im keeping everything I have "Crossed" for you guys!  Except for my eyes cause I need them to "stick" my hubby. LOL!!!!
Please keep us updated

Praying for you both,
lmunchkin



 

[boswife]

dang loonie, "thats about all"?  geesh,  i tell ya, we've had such a good long smooth patch that i had forgotton the scarry stuff.  Well, we're in it with ya right now so sending really heartfelt  and best wishes that all will be for the good... 

and lmunch, you cracked me up and reminded me to uncross MY eyes..lol  they have an important purpose 

[looneytunes]

Here's the latest from Looneyville: 

Hubby's cataract on the right eye was removed on the 26th and his vision has improved enough that he can get his driver's license back.   He can SEE again!   

The fistula revision was done and we are now using it for the arterial line and running at a very slow pump speed.  Still hooking the venous line to his catheter and the plan is to continue this way for a while to see if the fistula will grow.  So far it is still very small and difficult to see under the skin.  We are taking one day at a time and hoping for a good outcome.   

[billybags]

As you say "one day at a time" Looney. Shit you will have to get dusting now he can see a lot better. I am so pleased for you both.I will keep my fingers crossed for you about the fistula. Sending you both good wishes.