I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: looneytunes on July 15, 2011, 11:57:36 AM
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Just a quick update on our situation here in Looneyville....
We do have a part time hired hand. It has helped quite a bit just in the 2 weekends he has worked so far. Fence is getting built and fencerows cleaned out and I AM NOT DOING IT! :bandance; The hired hand has committed to working every weekend through September and possibly beyond that.
Hubby's graft quit working again last weekend and so this past Monday we were at the hospital getting it fixed up again. This was the fifth time since January 27th that we have had to do this. We saw his neph yesterday. Bottom line after this recent round is that the graft is failing and it is imperative that another access be built immediately. Evidently there is some problem with his blood (duh...really?) and the cells that are supposed to create a slick lining inside the graft are not doing their job and the lining is in shreds. The IR doc said the inside of the graft looked to be several years old instead of just a few months. They found and broke up some thrombosis in the apex of the graft, ballooned out an area of stenosis and then cleared another blockage near his heart. That one is a repeat area that has already been ballooned twice before. So it's off to another vascular specialist next week to see what can be done.
The issue now is that with a failed fistula in one arm and no viable vein left in that arm (per the vascular surgeon), and a graft in the lower arm on the other side, if they try again to build a fistula in that upper arm and it fails then they will look at his groin (he has PAD already) to see if one can be placed there. Worse case scenario...another AV catheter. With the staph lurking in his bloodstream and several prior rounds of sepsis...that sounds like a ticking time bomb to us. I think his biggest fear right now is that a graft in his groin may divert enough blood flow from his legs and he will lose the ability walk at all. I just hope and pray for a good outcome on this one. So..situation normal..kind of a mess!
But...at least I'm not building fence in this heat!
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:grouphug;
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I too am glad you are not building that fence...... stay strong...we are thinking about you..
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:grouphug; Stay out of that heat! It is only good for 2 things, crowder peas and okra! :rofl;
Pam
EDITED - icon error fixed - Bajanne, Moderator
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Awww, Looney.
This must be weighing you down. :grouphug;
I'm hoping that the new access will be successful! :pray;
And I'm so very glad that you have some part-time help around the farm! :2thumbsup;
Aleta
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I'm really glad you have been able to get some help around the farm. That's one less load off your very full plate.
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Im sooooooo glad your getting help and the same sad at the other stuff going on. Lesson here for me is be so very grateful when things are good and soak um in cause those downs need a heck of a bunch of strength. Sending prayers for some of that strength needed now, and hugs to help lift ya up. :grouphug;
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Yay! for getting help and not having to build the fence in nasty heat. I hope that hubby gets sorted soon.
*huggles*
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I'm really glad to read you've got help around the farm which was so important for your sanity - even more so at this time when you're under so much obvious stress worrying about hubby's medicl situation, which definitely would be a cause for concern. My best wishes on that front and so glad you have the help around the place you so badly need.
Thanks for keeping us updated!!
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I'm glad you got help too. Wow, I can't imagine running a farm. You've got it pretty hot there don't you?
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Looney, what is the saying "It never rains, but it pours".some thing like that. Stupid saying. Are things getting sorted out? You must be out of your mind with all this going on. It must be really tiring both of you out keep going to the hospital. I am sending lots of hugs and prayers your way. I hope they find a solution quick.
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Glad you got some much needed help!!
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How is your help going? Good I hope.
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I empathize with your husband. I have had my graft changed about 4 times. 3 times, it was because of an aneurysm. Well, I have had an aneurysm now for more than 6 months. This time, the vascular surgeon did not haste to change the line - he said we would wait and monitor it. So far, no problem. The nurses just make sure not to cannulate it.
You just hand in there. Your IHD family is with you all the way :grouphug;
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Oh geez, I don't know what to say. It's always something isn't it? Isn't there a semi permanent port they can put in that is just on the outside of the body not having to graft? I thought I'd heard of this once. ***thinking of you***
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TS, I truly wish there were! But, from what I understand, those type of ports either don't allow for enough bloodflow to dialyze or they are prone to infections (which we've had way too many of...). But thanks for thinking of us.
So far, we are now on hired hand #2. The first one failed to show up so we replaced him. I am hopeful this one will work out and stick with us for a while. At least through the fall.
The vascular specialist we have been referred to is out of the country till Mid August. So, we are set up to see him on 8-26. The hemotolgist appointment is set for August 30th. I sure hope that between the 2 of them, they can figure out what is going on with hubby and FIX it! He has been feeling pretty bad for the past week, no energy, naseaua, weakness, etc. But, maybe we're due for a good few days soon.
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You are sooooo way overdue for something to go right. Glad at least you have the hired help. Hope all goes well with hubby.
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Looney how are things going ?
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Aw BB, had you asked me yesterday, I'd have said "status quo". But...today his graft quit working again. It's been 3 weeks since the last time. So...our neph consulted with the radiology surgeon and they made a decision to not work on it again given it's history, risks and condition. Tomorrow they are going to put in another chest catheter. With his history of blood infections (VRSA).....I am almost beside myself with worry right now. But...guess we'll see what tomorrow brings.
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Oh no, that's not happy news! Since he has a history of VRSA, is there something they can do right off the bat to help prevent re-infection?
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Looney this is shit, you are not having a good time at the moment or should I say your husband, but you are very positive. Keep battling on, we are all with you. Hope every thing goes OK.
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Dang it Looney :( Sure hope somethig good comes soon.. So sorry :grouphug;
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Hubby now has another AV catheter, put in Wednesday. This is catheter #7. It's on the left side of his chest as the right side can not be used anymore due to problems with that vein. So far, we have had nothing but trouble with pressure alarms and I am having to run him backwards due to the constant red 11's and red 24's. (NxStage). We will try to get along with it until the 26th when we see the vascular specialist. Sure are hopeful he can "pull a rabbit out of a hat" for us.
Until then, I will be watching him closely for any signs of infection. If I see a temp over 99.1, it's going to be another wild ride to the hospital and I won't be listening to him tell me, "oh...just let me rest a while and see if it goes down any...". I am putting my cattle prod right by the door to use it if I need to! :rofl;
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I am putting my cattle prod right by the door to use it if I need to! :rofl;
A girl's gotta do what a girl's gotta do!! ;)
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Looney, what can I say? I hope this cath works OK. I hope the vascular people do pull a rabbit out of the hat, You and your hubby have gone through so much just lately you could do with a break. Thinking of you both.
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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. :grouphug;
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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!! :grouphug;
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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! :rofl; 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.
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Looney, You are in My Thoughts and Prayers, Tonight.
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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. :grouphug;
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:grouphug;
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many prayers sent... This is so hard :'(
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My caring thoughts and prayers are with you at this time :grouphug; Just hang in there and keep on keeping on!!
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looney, how are things going now Thinking about you.
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Same here, Looney! Please give us an update.
lmunchkin :kickstart;
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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 :bandance;. 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! :grouphug;
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:bandance; :bandance; :bandance;
Hope this one holds up as long as he needs it!
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this sounds like good news to me. Thinking of you both.
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Looney, I pray that things get better for your "J". Hang tough girl! Thinking of you both! Thanks for up dating us.
lmunch
:kickstart;
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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.
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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?
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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. :grouphug;
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 :kickstart;
:flower;
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Keep the faith Loon, and we'll keep prayen :pray; I surly hope all will solve for you REAL soon and get you on a great path... Sending prayers...and :grouphug;
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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.
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Awe, happy birthday Looney's hubby. :birthday; 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 :kickstart;
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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! :pray;
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.
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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
:kickstart;
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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 :grouphug; 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 ;)
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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! :bandance;
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. :pray;
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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.
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I'll be praying for you and your hubby, looneytunes. Glad to hear things are lookingba bit better. One day at a time, sometimes one minute...
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Very good news about his vision - wow! Hope fistula is workable and reliable. Good luck!
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oh loonie, im so glad that things are looking to be on the up swing.... thanks for taking the time to let us know and :grouphug;
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BB: Yikes! Dusting? Who has time for that? Now that he can see again, I hope we (he) stays busy doing other things that are a lot more fun :rofl;
Thanks everyone for the words of encouragement.