Mama said there would be days like this

[Vt Big Rig]

Any more heparin and I seem to bleed too long when we come off.  We believe these clots are a remnant of an issue a few days ago when I drew off too much fluid and got dehydrated. I chose to believe we have resolved the issue. (Head in sand icon !!)

But, yes that maybe an option.

[PrimeTimer]

Other than (another) recent angioplasty, my husband's 2 yr old fistula and buttonholes have been working fine. Then yesterday...projectile vomit (which I'm still trying to clean up) and a sudden (very) 103 fever, so off to the ER we went! They are still waiting for all the lab cultures to come back but it was obvious today that his arterial buttonhole is infected. Other than the fever and puking, there was no hint of anything wrong with the buttonhole yesterday. But I will say this; I did notice that he tore off a little skin around it the other nite when performing the usual "scab removal" for treatment.
Altho he doesn't do that very often (tear skin), it always worries me. Today it looks awful, all puffed up and like a big blood blister at the entry site, except that it's probably an abscess. Vascular surgeon said they will cut out the infected part, so there goes that beautiful buttonhole but we can establish a new one later. Meanwhile, "sharps"! Glad he gets to keep his fistula tho. REAL glad for that! Meanwhile, he's sicker than a dog, is having a lot of pain in the upper right-side rib area, which could be from all the puking but why we don't yet know what is causing his pain. No one has talked about his EKG or chest Xrays yet. It only hurts when he moves which of course, is downright miserable when you're stuck in bed. They have him on pain meds and antibiotic IV drip. He has gone without dialysis for 2 days now but my guess is that they didn't want to risk sepsis spreading but they will dialyze him in the morning. I am exhausted but if I could, I wish I could take his pain away. I had to come home from the hospital early tonite because I did not want to break down in front of him like I've done before and especially not at the hospital. I had to be his voice and help answer all their questions and of course, since not too many even in the medical field know what buttonholes and home-hemo is, I had to explain all that. Hauled all his meds in with me so they can enter it all into their records for the docs and carried my own medical kit with all the stuff necessary to perform his dialysis, including fistula needles, just unfortunately did not get to use them. I don't know what is more exhausting; helping my husband or dealing with hospital staff. Some are great and very attentive to his needs, others you wonder if there's a real person behind those eyes. Some are good at actually tending to the patient, others are better at just scanning the plastic bracelet they put around his wrist. Good thing I saw my own doc the other day and that he started me back on antidepressants..just in time..And as I perform cleanup on "aisle 2" here at home (just use your imagination with that one) I still have the picture of the young military veteran who sat waiting in the ER with us yesterday. He sat with his head bobbing up and down, as if to be fighting sleep. There were several athletic bags and a backpack piled up next to him. They were his. Looked as if his whole life might be in those bags. Probably was. A while later, a military officer walked in and I overheard him tell the front desk that he was there for the vet who needed a "psych eval". I wanted to really break down at that point...a vet and a sick husband. Not a good nite. Bless them both.

[PrimeTimer]

I don't remember mama saying there would be days quite like this...

Update: Husband's fistula had a blow out in the nite, he's now in ICU. Lost some blood but didn't need a transfusion. He now has the dreaded neck cath in him and awaiting dialysis. They don't know yet if his fistula can be saved, they've got it wrapped for now. First things first, I just want him to be able to have dialysis today. Feel very bad for him but I know I need to be positive and strong for him so taking another deep breath (at least I'm not hyperventilating) and here we go...

[cassandra]

I'm so sorry this is happening to you both. I hope D is going to go okay, but should do with the neck-cath.
Good thing you started the anti depressants, and remember to take care of yourself too.

Lots of love, and luck to you both, Cas

   

[Michael Murphy]

Sorry to hear about your husband,  after 3 years on dialysis it's the one thing that scares me a burst fistula, if it's going to happen at least it happened in the hospital. I will include both of you in my prayers.

[Vt Big Rig]

Sorry to hear about your issues. Please tell your husband we are all praying for him.

Good Luck and please keep us posted.

[PrimeTimer]

Thanks everyone for the well wishes. He couldn't sleep last nite and about 3am he felt a trickle of blood running down his arm and before he could reach the call button, "whoosh", blood poured out and all over the bed and down to the floor. He said they came fast tho and whisked him off to surgery. Yeah, I bet they did. Bet they freaked out. I know I did when the phone rang before the buttcrack of dawn. And hubby? Nah, he never freaks out, not even when he is. Calm and still as a rock, which is often a source of our arguments. I have just never understood how he can remain so calm over things. Heck, walls could be getting blown away by a tornado and he'd probably just sit there, real calm, using his "indoor" voice saying, "oh wow, guess we had better take cover". And I don't know why but the calmer he is, the madder I get. C'mon you guys, I am sure I am not the only one!

Anyways, they have his whole arm bandaged up now, looks part-mummy like just in-time for Halloween but the good news...did I actually just use the word "good"??... is that the vascular surgeon said despite the burst (I wince using that word "burst", makes me queasy), but his fistula actually still feels and sounds good (thrill and bruit) and that he will probably only need the neck cath for a couple days and can go back to using the fistula. Hubby is very relieved about that but I (silently) don't want to get my hopes up. They finally took him for dialysis (boy, was he ever looking puffy and they were letting him have all the fluids he wanted). I didn't get on him about it because despite fluid overload, he was also very dehydrated, I'm sure you guys know the feeling..sandpaper tongue, parched lips, etc. So off to dialysis he went but since they're using the neck cath, I could not go in with him, which is understandable and honestly, I am wore out and having terrible asthma attacks so came home. Wheezing and choking around sick people in a hospital is not a good idea and I only have so much of my rescue inhaler to use and need a refill. But...long day isn't quite over yet. On the way home I stopped for lunch and found out the hard way that I've been carrying some funny-money around on me. Grrreat! I mean, that's freakin' unbelievable!! Asthma attack nearly went into panic attack. I wanted to cry but I'm more angry than anything. In my past life I use to work verrry closely with a fraud department so this kind of thing really burns me up. I don't like criminals and I am sure they do not like me. Let's just say that I've got a very good record of putting rotten people away. So, looks like I will have to put my old hat back on and help the police backtrack to where this monopoly money came from. Hubby isn't going to like hearing about it so may not tell him, at least not for a while. Funny, just the other day he and I were talking about some of the old cases I worked and the type of people I helped put away. A part of me wants to forget about it, another part knows I can't. All I really want is for my husband to come home so we can get back to our routine of laughing and talking and watching tv together while we do his treatment. It's suppose to be "home" hemo, not "hospital" hemo!       

[cassandra]

Aw you poor girl, home hemo days will be back before you know it

   

Love, Cas

[PrimeTimer]

Okay, so there are "blowouts" and there are "bursts". My husband had neither. What looked like a big blood blister on his buttonhole was actually infection swelling up. So it wasn't his fistula that burst but the infection, which then caused profuse bleeding from his arterial buttonhole. They had to cut out the necrosis (infection) and sew him back up. Not quite 48 hours later, the vascular surgeon removed his dressing and Yay!! Fistula looks good and is still alive! Surgeon said it will be good to use! Whew!!!  Another day or two of using the neck cath and they will remove it and send him home. Well, not for home-hemo but he will at least get to come home and sleep in his own bed. Never thought I'd say this but I actually look forward to hearing his snoring again and fighting for the blanket. Funny how you can have the whole bed to yourself but after being married several years you wake up in nearly the exact same spot you fell asleep in. Even on nites when you have the bed to yourself.  Anyways, because he is very anemic now he will have to go in-center for at least a couple of weeks til his Hemoglobin is back up. He was doing so much better today, no more fever, no more crazy talk and having conversations with himself, no more barf bags and he was up and able to take short walks, which he was very relieved to be able to do. Unfortunately, I doubt anyone covered up his backside before I got there today but I'm not going to tell him that. I want him to keep moving so he'll recover. If I tell him that people may have seen his arse, he may not want to take walks down the hallway again. He's still on IV antibiotic drip but only every so many hours. About the only signs of anything having gone wrong is that we noticed that his wedding band was on the wrong finger. Heck, it was on the wrong hand! Don't know the story behind that, I'm guessing they may have removed it during his fistula surgery. Whatever the story, I'm just glad he is "back" and coherent again and able to change his underwear on his own. He hasn't touched a razor for a few days but I'm not getting on him about it. Especially while he has that neck cath still in. So he's got kind of a good beard going right now, guess I can call him "my old man" now. Ooh, he'd hate that. Guess I'll just call him what I always do; Honey. Another day or two and he'll be a real pro with all those buttons on the hospital bed but all good things must come to an end. And when the time comes and he's released, I'm sure he'll agree and turn to me and say, "Where's the car keys?"

[PrimeTimer]

Any more heparin and I seem to bleed too long when we come off.  We believe these clots are a remnant of an issue a few days ago when I drew off too much fluid and got dehydrated. I chose to believe we have resolved the issue. (Head in sand icon !!)

But, yes that maybe an option.

Now what were you saying about fistulas and angioplasties?? Heck, we will all get use to it. Like they say, it gets easier...yeah right! But seriously, I'd rather deal with taking my husband for angioplasties. Hang in there, Vt Big Rig! No matter how many are needed, keep yer fistula alive with those angioplasties!

[Vt Big Rig]

Great to hear he seems to have turned the corner. Very happy for you both.

Yes with all the problems I have had with my fistula ( and now they have decided right arm with not continue to work and have installed one in left arm higher up) none of them have approached your hubby's issues.

Best of luck and take care of yourself also. He will need you.

[Simon Dog]

Anyways, because he is very anemic now he will have to go in-center for at least a couple of weeks til his Hemoglobin is back up.

I was sentenced to about a month in stir (center) when my HGB dropped to 6.2 after a surgery.    The didn't spring me until I hit 8.5 - and I went through a LOT of epo to get there.

[Vt Big Rig]

Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?

Do they do anything different. You can take blood samples and give EPO at home.  I am just wondering .......

[PrimeTimer]

Well heck...his hemoglobin is still too low. He's at a 6 and they've already given him all the EPO they safely can. They are giving him a blood transfusion, 2 liters. units (about 2 pints).  Poor guy, he's really feeling punished.


Sorry, meant to say he was given 2 units NOT liters. It bled so profusely because it opened the buttonhole to his artery. Nurses said they could actually hear his blood hitting the floor when he yelled for help. He said they actually freaked out and yelled "Oh my god!". Geez....glad I wasn't there when it happened. They would have heard more than OMG coming out of ME.   

[Simon Dog]

Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?

The concern is that a home user is at a theoretically greater risk of a mistake that will cause losing a setup of blood and further depressing the HGB.

When I bottomed out around 6, I had to repeatedly refuse transfusions.    One resident was a bit pushy and the head of hemo stepped in on my behalf,.

[PrimeTimer]

Twice now I have heard they sentence folks to in center because of low hemoglobin. Why is that?

The concern is that a home user is at a theoretically greater risk of a mistake that will cause losing a setup of blood and further depressing the HGB.

When I bottomed out around 6, I had to repeatedly refuse transfusions.    One resident was a bit pushy and the head of hemo stepped in on my behalf,.

If it's not too personal, may I ask why you refused transfusions?  I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.

[Simon Dog]

If it's not too personal, may I ask why you refused transfusions?  I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.

Alloimmunization can increase the PRA score and make it harder to find a matching kidney.   This is an issue every kidney transplant candidate should understand.  The transplant team certainly will, however, I've run into MDs whose reaction was "that's news to me" when I explained the reason.

I did have one unit of my own on deposit with the blood bank and used that.

[kitkatz]

What an adventure you all have had!  I am so glad he turned the corner quickly and things are slowly getting back to normal.

[PrimeTimer]

They removed the neck cath and I brought him home. He had a good dinner and is now sleeping like a baby. Has to do in-center for about a month until his hemoglobin level is back up. They also have to give him 3 more antibiotic treatments with his dialysis. I need to call NxStage to see if I'm suppose to do anything in the way of maintenance on the cycler and pureflow machine. Feel like I should run it or at least rinse the drain line out while it sits a few weeks. And I also wonder about the inside of those pureflow connections and blue water line and if moisture is trapped in there and should be periodically flushed. I'm going to prime a new PAK when it's time. Perhaps I am just paranoid but I'd rather know about these things before hooking my husband back up. Just like a car, I don't think it's good to just let it sit. And I'm not necessarily talking about my husband.

[cassandra]

Fantastic to hear to hear he's back home. When I don't use the pureflow for a while, I usually try to remember to put the drainline in bleach-flush-soak. The PAK will expire anyway (I think that happens 'automatically' or something)
Enjoy hubby being home honey

Love, Cas

[justagirl2325]

Wow.  Quite a story to read all at once, I'm so glad he's home and feeling better.  I'm very impressed with the way you handled everything. I hope one day when I'm faced with such a crisis I can do as well as you.

[PrimeTimer]

If it's not too personal, may I ask why you refused transfusions?  I've read that some have bad reactions to them, for some it's too risky and others have religious reasons.

Alloimmunization can increase the PRA score and make it harder to find a matching kidney.   This is an issue every kidney transplant candidate should understand.  The transplant team certainly will, however, I've run into MDs whose reaction was "that's news to me" when I explained the reason.

I did have one unit of my own on deposit with the blood bank and used that.

Thanks for answering that, Simon Dog. I try to learn and absorb all I can. People like you are why this site is what it is; HELPFUL!