Advice needed ....

[Phurball]

Hello everyone,  I need your help badly.  I was to start dialysis Nov. 5th for the very first time.  15 mins after I entered the clinic I was BADLY inflitrated , so much so that I had to have an emergency cath put into my chest.   The fistula was unable to be used for 6 weeks.  Then it was successfully used once ! Then the same tech infiltrated me AGAIN !  Therefore it was 3 weeks beforwe the fistula could be used.   Then this last monday I had the worst experience of my life, short only to losing my husband.   First of all, I take Plavix ( blood thinner ) everyday to prevent another stroke.   Plus they give me Heprin during dialysis. Well because of that it takes me a while longer to stop bleeding after treatment.  Monday my tech was running alittle behind her schedule, but she did at least get a clamp on the venal opening.  I held the arterial one.   We had to add another 15 mins to the closing process because I didnt want to stop bleeding.  This I think aggravated her.  So she comes over, and without looking under the gauze pads, she begins to slap tape around the openings. 

Well now the fun begins ........ I go out, get in my car and leave to drive home, I only live 5 mins away from the clinic. I was about 4 blocks from home when I felt this warm sensation on my fistula arm, Stupid me thought, what is that ?   I looked down at my coat, and it was QUICKLY becoming completely blood soaked.  I was shocked to say the least !  I didnt know whether to pull the car over or try to make it the last couple of blocks to home.  I chose home.  I jumped out of my car and ran from the garage into the house,  by the time I got to that point blood was pouring from my coat. I ran to the bathroom and as I pulled off my coat over the sink, blood flowed out of the sleeve like pouring it out of a bowl.  I tried appling pressure, but there was so much blood squirting out I couldnt see where to apply it. 

I didnt have my medic alert button on because I had left the house, but I knew I had to get to it and soon.  ( yes by then I was panicing) So I grabbed my already blood soaked jacket wrapped it around my arm and ran for the button, by then I was feeling slightly dizzy.  I pushed the button and they quickly responded and I screamed for help.  About 3 mins later the EMT's came through my door. The venal entry had opened, They took one look around the kitchen, livingroom and bath and asked where the cow was that I had slaughtered The EMT's told the ER doc it looked like the Silence of the Lambs elevator scene.  They kept me at the hospital for about 4 hours and gave me fluids, but I was able to be released and come home.  OMG I walked in the house and I almost collapsed ! My friend who came and picked me up at the hospital and I worked for 2 hours cleaning up all the blood.  I still have 1 big puddle on my carpet I am soaking in water and peroxide to try to save it.     ( sorry this is so long )

So now its wed.  I am up at 5:00 am to get ready to go to clinic.  I have my coffee, use my lidocreme, and get up to go get dressed. I get half way across the livingroom and begin to have a MAJOR panic attack !!!!  I cant do it .  I cant go to that clinic today !  I called the director and told him what was happening to me,  his response was, well Cee you know these things happen !  I asked him why then didnt I see them happening to the other people in the clinic ?  He had no answer.   

I know I must have dialysis, but now I am fighting fear of what happens next ?  Its real fear.  I am a widow and live alone, it was horrifing monday to know I had no choice but to try to handle this on my own.   I have lost complete faith and trust in my clinic.   I dont know what to do.  I am strongly thinking of CAPD, I cant do nexstage because I am alone. 

So my question is .........................what would you folks advise    What are your thoughts

Thanks in advance
Phurball ( Cee)

[MyssAnne]

Oh Cee.  That was first, insensitive of your director to say that, that these things happen.  IS there another clinic you can go to?
You need dialysis, but there is no reason that you have to go to THAT one, is there?  First of all. Take a deep breath.  Second, call
someone you TRUST and tell them the story, whether it's your neph, your nurse, whomever. IF you can do without it for a day or so,
then do so.   Quite frankly, I would not want to go back to that clinic either. 

whatever you do, we are behind you, all the way, honey!!

 

[thegrammalady]

this is OUTRAGEOUS, especially what the director said to you, NO THESE THINGS JUST DON'T HAPPEN. the tech didn't do her job, plain and simple. no excuses should be given or accepted. if you can't change centers, tell the director (or better yet the director's boss) that you don't want that specific tech to be responsible for your care ever again. and stand your ground, they may try and tell you that you can't do that, but you can. the center is responsible for making sure that you are ok and it's alright for you to leave. not doing so is medical malpractice. everyone at your center is not as uncaring or incompetent. you shouldn't have any problems with another tech. you should also probably avoid the ones who infiltrated your access. remember you are the one in charge, even though many centers don't want to admit it.

[paris]

Cee, I can't imagine how scared and upset you were. That was a horrible situation.  Your doctor needs to help you through this. Can something be prescribed to deal with the panic attacks?  Is there a friend that could drive with you for a few times until you get into a comfortable routine with no emergencies? You need some loving support during this time. AND a better tech!!  

I am sorry for all you have been dealing with.  Keep us posted  

[willieandwinnie]

Phurball  , That tech would never touch me again. You can tell the charge nurse that you don't want that tech and explain why. You are paying for their services and they are bound by law to give the best care possible. This is your health and your fistula. What the hell was she thinking... oh that's right, she wasn't.  I would be putting the director on notice also. Your clinic should also have poster in waiting area about filing grievances. CALL THE NUMBER IF YOU DON'T GET ANY SATISFACTION. We are all here for you.

[livecam]

What happened here was awful.  A fistula can leak after dialysis if it hasn't been given enough time to clot before you are sent home.  I wouldn't call it routine but it does happen.  The insensitive comments of the director were uncalled for since they demonstrated a total lack of compassion and have you fearing further dialysis.  You can be thinking about other modalities but right now it is important that you make hemo work.

That means the tech that infiltrated you doesn't touch you again until if and when you decide to let him or her.  If you see that person approaching to put you on just ask for someone else or if you are uncomfortable speaking directly to that person call the director of nursing over and tell him or her.  It also sounds like your fistula might not be fully developed.  Going back to the chest catheters might be a good option while you continue to excersize the fistula arm and further develop it before using it more.

You probably have a nephrologist outside of the unit who sent you there in the first place.  It is time to discuss this matter with him and find out what options are available in terms of other units or modalities.  You might also think about another dialysis shift time in the same unit.  If you go out say to the end of the day you'll probably end up with a much different staff, maybe one you can live with.

[BobT1939]

Everyone's suggestions are on target. Your posting is beautifully written. I would use it as the basis for a letter to your neph, the Director of your center, the head nurse, and your lawyer. Just as a matter of record, and as a back-up to your demand that the jerk tech not touch you again.

I particularly like the idea that you find a friend to drive you to and from the center for at least a few sessions./bobt

[stauffenberg]

You have already had a central line 'permcath' inserted.  I was able to use mine with no problem for over eight years of dialysis without ever having had a fistula made.  My pump speed was excellent at 450 rpm; I could keep both my hands free during dialysis sessions; I never experienced any pain from needling; I had no permanent scarring of my body from a fistula; I never had to endure a painful fistulagram; there were never any worries about the fistula not maturing properly, being improperly surgically constructed, or of its breaking down over time; I never had to do any exercises to develop the fistula.  In short, I feel that a permcath is an infinitely superior mode of access to a fistula, when seen from the patient's point of view, rather than that of the doctors, who could care less about how we feel.

The reason usually cited for not allowing patients to use a permcath is that it can become easily infected, but if you are careful to wrap up the insertion point and to keep it dry, as well as to wear a mask and have the nurse wear a mask whenever working on it while it is open, this is not generally a problem.  I had only three infections in more than eight years of use and each time, the replacement was effected using a guide wire to insert the new permcath in the same tunnel as housed the original one, which is not a major procedure, since it takes less than an hour.

If I were you, I would just insist on continuing to use the permcath only.

[Adam_W]

Phurball/Nana, I'm so sorry your going through all this. They have no right to treat any patient like this, and what that director said was absolutely uncalled for. One thing we all need to remember is that WE are the ultimate boss when it comes to our care, and the staff at our centres work for US. My home unit is starting to offer CAPD along with NxStage, and I talked to my home nurse and she would be very glad to talk to you about both CAPD, and the options you may have regarding doing NxStage even though you live alone. It's kind of hard, but I am forcing myself to not push one particular treatment option on you. What I do know, is that something needs to change, because you deserve to be able to have your treatments and to feel comfortable and not be terrified of them. You don't deserve to be treated like a lab rat. You deserve to be treated as the human being you are, and you deserve respect and dignity. We love you and we are all here for you, both the family and everyone here on IHD. You will get through this with God's help, and the help of all of us who care about you. Take care. 

Your grandson

[Lori1851]

Oh my goodness!!!
I am not a dialysis patient but my son is. That tech would NEVER touch me again if I was you. I have learned from this site so much and YOU are in charge of your own body. And for the Director geesh I would report her too!!!

Lori/Indiana mom to Dustin 22 dialysis/fsgs

[2_DallasCowboys]

Boy, that is one horrible story!  I would
first talk to the charge nurse, tell her everything
that happened and firmly tell her/him you don't
ever want that tech anywhere near you again.
I would then write a formal letter, with a c. copy
to your attorney, to the main office of the company
that owns or is  responsible for your unit, and explain
the whole scary incident in detail-including what
the director had to say.  It is your body, and you are
entitled to ask for and get the best care for yourself.
I would make everyone aware of what happened, your
neph, primary care, cardiologist, etc.
I am so sorry you had this experience.  As the others have
advised if you could get a friend to go with you for the
next few times, it should help a little
Anne

[okarol]

How to Treat Severe Bleeding

Elevation and Direct Pressure

Step One
Elevate the wound above the heart.

Step Two
Apply direct pressure to the bleeding area, using sterile cloth or gauze.

Step Three
Keep the pressure on for five minutes.

Step Four
Check to see if the bleeding has stopped. If it hasn't, apply pressure for 15 minutes.

**If the gauze soaks through with blood while you're applying pressure, do not remove the dressing. Instead, add more sterile gauze.**


Pressure Points

Step One
Check again to see if bleeding has stopped or significantly slowed. If it still hasn't, then locate the appropriate pressure point.

Step Two
Find the brachial pressure point for bleeding on the arms: It's on the inside of the upper arm, just beneath the biceps, where a pulse can be felt.

Step Three
Find the femoral pressure point for bleeding on the legs: It's in the soft area of the groin, at the crease between the inside of the upper leg and the crotch.

Step Four
Press at the pressure point, toward the bone, to cut off blood flow.

Step Five
Release pressure slowly after 10 minutes. If clotting has not stopped or significantly slowed the bleeding, and if professional help is far away, apply a tourniquet.

    * If there is another rescuer, have him or her maintain direct pressure on the wound while you work the pressure point. If you are alone, wrap a roller bandage semi-tightly around the wound to maintain pressure.
    * IMPORTANT: Only apply a tourniquet if the person is in imminent danger of bleeding to death, since a complete cutoff of the blood supply can result in limb loss.

[goofynina]

Hi Phurball, i am sorry you went through all that you did and i hope that tech is reprimanded in some way.  Next time they go to tape you up and you are not ready, speak up and speak loudly.  If all else fails tell them your Grandson has a gun collection.  

[Black]

You have gotten some very good advice and information.  All I can add is that I'm so sorry that happened to you, and reassure you that your fear/panic is not unusual, given the circumstances.  You body is having a normal response to what it perceives as being a life-threating experience.  You will get through this and you will do dialysis again.  Don't hesitate to get an anti-anxiety med!!

[Joe Paul]

So sorry you had to endure such a trauma. I hope and pray you can bring yourself to go back and continue your treatments with little stress. As has been said, let the charge nurse know you prefer not to have that tech near you. I would also speak to the social worker, and let her know how you feel about the whole experience. Dialysis is hard enough to take, you sure don't need these other worries on top.  

[Bajanne]

I am feeling positively outraged by this.  It is unbelievable.  I agree with what the others have said.  How inefficient! and then, how insensitive! You have a right to protest.

[kellyt]

I'm going to have to come back to read all the responses, as I am headed out the door.

But, damb, that story scares the poo out of me!!!!!!!!!!        I'm so glad you're alive!

[orphans_mom]

Call, follow up in writing. Do not take no for an answer. Your life was in jeopardy.

Thank God you are O.K.

[Ang]

very  well  written  responses

[KICKSTART]

If CAPD is an option then i would seriously consider it ! I live alone and do CAPD and its fine ..YOU are in charge , ok you dont get 'time off' but you learn to work round it and you could always take your equipment with you if you wanted to go away anywhere.

[Phurball]

I want to thank you all for your responses.  It means so much to me to have IHD so that I can express myself and my fears without fear of condesending and insulting people. 

I went to dialysis friday, the social worker and I had talked via phone off and on all day wens.  I completely aired my anger and fears to her.  Sooooo when I went in friday, they assigned me a specific tech, and she did everything but wipe my nose for me the whole time I was in the chair.  However, as I was standing up for my first BP, I began to have a mini panic attack, I was shaking, sweating and crying.   She was able to calm me down and finally get me started again.   I ended up having a good run. 


I have an appointment with my neph next week to discuss the whole incident.   

Adam,  I love you my special boy.   

~~Cee

[willieandwinnie]

Phurball,
I'm so glad that they took you and your words seriously. I never had much luck with Social Workers but ever unit is different. Sick to your guns with this and tell your Neph flat out that what happened is not acceptable. If you don't scream loud enough, they will never change their ways. Take care.

[Joe Paul]

So glad you got it worked out 

[lovemypts]

Hello,
I can't imagine that this is even possible. It is scary. I would never let that tech touch you again. I can tell you at our clinic, I as a tech would never do this to you. You could have died from the impatience that this tech showed. We have pts. on blood thinners. They never get heparin in their treatments. Tell them that they can flush your lines with plain saline every half hour and you should not need heparin. That tech should be fired!! I am so sorry that this happened to you. You have a right to be in charge of your treatments, and I would most certainly tell your Neph Doctor. I bet some heads would roll. Good Luck to you and if I can help with questions let me know. Every body is different, and there are always different routes that you can go with treatments.

[joezee]

GOOD for YOU Phurball. It took me some time while being in pain and misery after dialysis to learn from others that we really do have to "take control" and diplomatically discuss our problems without fear of retribution. We're not all always blessed with a staff like mine- in fact I had to change Nephs and clinics to luck into this one- but I'll never believe there's not at least one person in every clinic who will listen and who wants to help. By nature most but certainly not all Social Workers, Dialysis RN's and Techs fit that category. Those that don't want to help should be reported, again without fear of retribution. Stay as proactive as you are! We can't be helped unless we ask for help.