extreme frustration

[graftgurl]

It has been several months since I posted and I miss being here, truly. I began hemodialysis in August '08. It was going well until the graft in my right thigh clotted in the beginning of November. A quick trip to the local hospital to declot the same day and I was back to dialysis on my regular schedule with one added day to make up for the day of my declot procedure. I had been on bloodthinners prior to dialysis but after I began hemo they took me off of them because I began to bruise quite badly and my access holes after the needles were removed from my graft bled for hours. They even discontinued the heparin with hemo. My vascular surgeon said that grafts do clot more frequently than fistulas.

Well this past Thursday I went in for my regular 4 hour session and low-and-behold, the stupid graft clotted again - only 3 months since the last time. I am usually a very upbeat person, biut this got to me and I was in tears. To make things worse, they could not get me in to declot until the next day. So my last hemo was on Tuesday. Friday I went in for my declot procedure again and it went well, just like last time. They even got me out in time to go to dialysis that day. Thus Friday was a very long day, beginning for me at 4:30am and arriving home around 6:30pm. Whew! Then I had to turn around Saturday morning and go back for hemo on my regularly scheduled day/time.

I've been having problems for awhile with my blood pressure bottoming out during treatment, mostly during the last hour. We have tried different profiles and found the one that works the best for me, but the last few weeks I began dropping lower and lower. First, I was asked to not take any of my medications during treatment, thinking that the meds may be affecting my blood pressure. There was no change when I stopped them. Then last week they asked me not to eat at all before or during hemo. That did not make much of a difference either, or at least there was no improvement. Well with the weird schedule due to my clot Thursday, I had back-to-back hemo Friday/Saturday. I absolutely had to eat during my hemo on Friday because I had not eaten since 7pm Thurday evening. The dr. ok'd my small meal during that treatment. Saturday morning I went back to the old "please don't eat anything" routine. I did have a little extra fluid weight since I had gone an extra day without hemo that week and we didn't take all of it off on Friday because I was due to come back Saturday morning. Well Saturday's hemo went fine until the last hour-and-a-half and then my pressure hit the floor. I don't even know exactly what it was, but ballpark figure was 60something over 40something. They stopped any and all fluid removal and just filtered out the toxins. My goal that day was only 2.3 but we only reached 1.1 and I only lost 0.3 Kg. That is horrible, especially considering I had 3 days to go before I would return. I was devastated and extremely frustrated and somewhat depressed.

So I am asking any and all, experienced and newbies - what can I do to keep my pressure up and still take off the fluid I need to take off? My normal time is 4 hours on the machine. They suggested Saturday that when I return on Tuesday that I bring a small snack that is high in sodium, saying it might possibly keep my pressure up enough to make it through my treatment. I am following my diet exactly as required and all of my labs come back within range except for my albumin level. It is still low but continues to improve each time lab is drawn. I work hard at eating enough protein to make it so. So what are my options at this point? I also follow a strict fluid restriction, only allowing myself 28-32oz/day.

I really need some positive answers and good options guys!! I don't want to be on my last straw already this early in the game. Help me please cuz I feel like I'm fighting a losing battle and I have that stupid nagging feeling you get when you are low that says "why keep fighting so hard when it is doing no good - Hey, eat what you want, drink what you want, blah, blah, blah." I don't want to feel this way but no one here (locally) is giving me any good alternatives.

It's late and I'm exhausted and the stupid incision from my declot procedure has been leaking blood since Friday night. The surgeon on call said the glue isn't sticking well enough in one spot and to come into the office Monday (tomorrow) morning and they will "fix it." Whatever that means - meanwhile, I have to keep changing the dressing and the part of the incision where the glue did hold is bleeding underneath and forming a nice purple knot that hurts like hell. The surgeon on call says "Hey, take a paiin pill or two until we see you on Monday." Grrrrrr, if he were here in the room with me I might give him enough pain so that he would understand how concerned I am with what is going on and how much I really do hurt. I guess that part of the problem will be addressed in the morning. Sigh...

Help     and so tired I am 

[okarol]

  So sorry graftgurl - I would be frustrated too!
You'll get some good answers here in the morning, I'm sure!
Take care!! 

[Joe Paul]

Graftgurl, it sounds as though they are taking too much fluid off. It is possible to gain or regain some body weight after you have been on dialysis a while. I would start by asking you Doctor to adjust your dry weight, and see if that doesn't help you. Good luck, I hope they can get you figured out  

[Ken Shelmerdine]

I agree with Joe it does sound like they are taking off far too much fluid. In my experience there doesn't seem to be any awareness from the dialysis staff of any possible increase in body weight. As soon they establish what they consider to be your dry weight then it's like it is written in stone.

Sorry to hear about the terrible problems you've had no wonder you feel so worn out.

[Patsy]

if you are getting a hematoma under the skin near the incision I would try using an ice pack to help relieve the pain,reduce the swelling and slow the infiltration....

LOL

[paul.karen]

I have no advice.
But i hear you and feel for you Graftgurl.
I hope the minions can get it sorted out fast for you.
Please hard as it is try to stay positive
 
P&K

[swramsay]

yuk. I have had similar situations. I had a catheter that clotted every time because I wasn't using heparin (platelets were too low). Even with flushes every 15 minutes, the clotting happened after the 3rd  hour and I often lost all the blood in the circuit because it clotted before they could return it to me. I was moved to 3 hours 4 times a week which helped with that problem.

I, too, have low blood pressure during my entire run often dipping into 70's over 30's/40's. We wondered if it was my dry weight but I go into the run with low pressure. We tried adjusting my dry weight up slightly to see if it made a difference and it hasn't. It still runs very low. and I feel dizzy every day. My bp is constantly in the red throughout my entire run. They had another woman with the same problem and tried changing her dry weight as well with no success. I wonder if it's just the procedure of dialysis itself that our bodies don't like. I don't think it's the pump speed because when I was at 250 with my new fistula my bp was low then also.

Going into the weekend with extra fluid is AWFUL I know. When that happens we should get an extra day without question. One of the nice things about going 4 x's/week is there are no long weekends to suffer through. You could ask for that.

good luck. I'll be watching for answers to the low bp problems.

I begin training for Home dialysis today.

[kitkatz]

Sucks doesn't it!  My blood pressure will bottom out for no reason during dialysis sessions.  You have to keep an eye one it.  I have found when it first dips have them turn the pull off for a half an hour then put it back on and see how it goes. THis gives the tissues time to adjust to fluid being pulled and re-calibrates the body so you can take fluid being pulled again.   Also up your dry weight.

[swramsay]

This is great! I began home dialysis training yesterday. Never during the run yesterday nor today did my blood pressure get too low. It stayed at a good pressure the entire run. I came off right at my target weight. When I dialyzed in the center, my blood pressure was always in the red the entire run. I wonder why. Maybe the machine I use for home dialysis (NxStage) is easier on the body and blood pressure. Whatever the reason, I am very happy about it because my low BP during dialysis was a concern as I was heading towards Home dialysis.

 

[Patsy]

Patsy was having low blood pressure problems until we read about setting up a UFR Profile on the machine.. That fixed the "Bottoming out" problems at the end of her run... We use the 3 stair step  Profile #3 on the Fren 4008.....

[graftgurl]

I wonder why I have stayed away from this place for so long?!!  All of your kind words, encouragement, and tips give me hope.   
I at least hope that what I find out with this whole experience will benefit someone else in the future.

Monday sucked as well as I ended up in the ER for 5 hours (sent by my original surgeon who was in surgery all day), only to be told that the cardiothoracic/vascular surgeon on call was in an emergency surgery but would be back "soon." 4 hours later (and 3 blood sugar reactions in which no one knew what to do for a dialysis pt) the surgeon appears and tells me he will not "alter" any surgery done by another surgeon. I understand the legality of that position, but I about came unglued and told him how extremely upset I was to have wasted all that time waiting when one simple phone call between the two surgeons would have saved me the trouble. He said he completely understood and I have to say I blew up at that point   and told him if that were true then he would not charge me for time in the ER in which they did nothing and would realize he had had a negative impact on not only my life but my 16 year-old daughter's who had been waiting at home anxiously and who was also ill. If he had been made to wait for a patient for 4 hours he definitely would have charged them for his time.

Tuesday at dialysis wasn't any different. I made it until about the last hour-and-a-half and then my B/P bottomed out. I had a nervy (sp?) tech though who refused to give up and he turned off the pull for 30 minutes and then put me back on. My pressure was still very low, but I survived and a few minutes after treatment my B/P came back up. It was probably my frustration with the whole situation. For those of you who suggested they adjust my dry weight, I will address that with them tomorrow morning. After about 3 months on dialysis my dry weight actually dropped and for awhile I did fine. Then the B/P issue started again but I know my appetite actually improved at that time and so you are probably right in assuming they are pulling too much fluid off instead of raising my dry weight to where it should be. Thank you for your sage advice.

Swramsay, it sounds to me that home dialysis will be a much better option for you regarding your blood pressure issues also. I have longed to do daily home dialysis and would do so in a heartbeat if I could find a partner. My daughter is only with me part-time and she attends school during the weeks she is here so right now it's not an option for me. I'm so glad your first run went well.    I will have to ask about 3 hours 4x/wk and see if they think it would be better for me. I'm willing to try anything at this point. And Patsy, I am aware of the UFR profiles, I am already on profile #4 which is also a step profile taking off more sodium in the beginning and slowing down at the end. We may have to try a different profile to accommodate my B/P issues. Thanks for the reminder that it is there. Tomorrow I will ask about the other ones.

So it is late once again and I would really like to approach dialysis rested and ready for a fight tomorrow.    I promise to come back and let everyone know how it's going. And thanks again for the support. I truly would not have made it without all of you.   

[Lucinda]

I am so sorry you are having all these problems graftgurl.  I don't get why I am encouraged over here in Australia to take control of my own treatments and you guys can't do your treatments on your own.  I start training next week and I won't be taking anyone in with me until the last day and then that is just so he can see what the machine is like that is coming into the house.  The dialysis centres here are very positive about you managing on your own.  They are happy to give a machine to someone on their own if they feel they can manage.  I would love to know why they won't do it over there.  I have a friend living on his own doing home hemo and he has been doing it now for over five years.  He says he manages perfectly well.  I suppose next week will be the telling time.  I am also having graft problems and I haven't even started yet so I will be interested to see how my graft holds up.  Keep you chin up and keep in touch. xx

[Bajanne]

Hello, graftgurl!  I am glad that things seem to be settling down a bit.  The dry weight assessment can be a real problem.  Right now, I have gained a bit of weight, but they still want to take the same volume off of me.  No neph is here right now so it can't be officially changed.  Each session I leave with 2 - 3 kilos over my 'dry weight'.
So you just hang in there, girl.  Make your voice heard.  That is one of the important things we learn in IHD.


AND DON'T STAY AWAY SO LONG AGAIN!! (please)

[paddbear0000]

Good luck tomorrow!