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jcanavera
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« on: December 10, 2014, 07:20:41 PM »

I have another thread started about my wife possibly needing her gall bladder removed.  It looks like that may not be necessary but we have run into some interesting situations in the hospital.  She is in one of the top three hospitals chains here in the Metro St. Louis area.  What I'm finding out is they are woeful in their support of PD patients who use a cycler.  They first told me I had to use their cycler.  Unfortunately I had to instruct them on what my programming was to assure that it was set up correctly.  The Baxter equipment they use is older and does not support the memory card interface that my unit does (otherwise they could plug in the card with the complete programming on it).  So the machine is sent down to her room around 7 PM.  I'm there and I review the programming with the person who brought it.  From what I can tell, she has some training but for all intents has no real idea of how the machine works and some of the functions I use to make sure she is empty after the final drain just before extraneal is added.

The machine itself has a weak pump and is constantly stopping due to low flow alarms.  I end up spending the night there to keep starting the machine when the alarms occur.  I didn't sleep and who knows how long she would have laid there with the machine stopped before someone would notice.  Also notable is that there is no PD trained employees there after 9 pm.  They have an one on call person to call.  They don't have all the supplies.  I know what mixtures she needs of the fluid bags.  I need a 2 liter red cycler bag and to 6 liter greens and a 2 liter extraneal.  They have no 2 liter reds and wanted to hook up 6 liter red instead.  I wouldn't let them do that since red does give her discomfort and I can't be assured that she might get more red if we used a bigger bag.  I asked if they had a continuous flow bag in 2 liters.  Yes they did.  I asked for that and we had to get the dr. okay.  First time the person had ever known that you can use this style bag in a pinch.  After the all nighter that I pulled I brought in my cycler and told the doctor that we are using mine.  With the slow drain on the hospital supplied device we lost 3 hours of dwell time.  I stuck to my guns and we used ours.  It was a quiet night and all was well.  Tonight they bring down the supplies and I'm told that they are out of Extraneal until Friday so they were going to use either red or green as a substitute.  I told them that my wife wasn't going to walk around all day with that type of fluid in her since she would absorb a lot of that.  Bottom line I told them I'm bringing in my own bags of Extraneal and they could resupply me.  They then tried again to substitute a 6 liter red for the 2 liter red.  Again I asked about the 2 liter continuous flow on hand and again the doctor had to make a change to approve it.

I didn't tell you about her first night where we put her on continuous flow.  No problem there other than the on call doc asked for them to use yellow.  I told them she can't use yellow because it does her no good and she absorbs it.  They call doc back and he says he wants 1.5.  All goes well and at 7 am they drain her and put a new bag of yellow in.  About 2 hours later her regular doc calls in and wants a cycler.  At that point I ask you are going to continue with the current continuous flow treatment until tonight right?  No we stopped that.  What about the fluid in her.  It should be changed every 4-6 hours.  They tell me that doc said just to leave it in her.  I protest saying that she will absorb this.  They said don't worry.  We come to drain her with the cycler and find that she has absorbed 900 ml. 

I will be writing a lengthly letter to the president of this hospital.  The line on this entire event is to manage your treatment aggressively.  This is one of the biggest hospitals in St. Louis and they are woefully unprepared in equipment staffing and supplies.  In many cases you probably know a lot more than they do.  This is quite discouraging.

Jack
« Last Edit: December 10, 2014, 07:24:24 PM by jcanavera » Logged
Charlie B53
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« Reply #1 on: December 13, 2014, 04:03:43 PM »

In a pinch I have used manual 2 liter bags on my cycler, just pinch off the drain line/bag.

I have about 5 cases of 2 liter red bags that I may NEVER use.  It's been well over a year since I used one.  Now I am on the Baxter cycler and recently added one additional manual exchange, green.  But I've got almost a whole month supply of of manual bags.  Should last me a goodly long time.

I am in Warrenton and could meet you one day.  I''d have to look again but IIRC these red cases will expire about Aug 2015.  I'd hate to have to pour them out, wasted.

My cell 636 seven three four 7561

Charlie B
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jcanavera
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« Reply #2 on: January 09, 2015, 07:46:56 AM »

Charlie, thanks for the reply.  Sorry I haven't gotten back to you earlier.  As a summary to my wife's hospitalization lots more went on.  I told them that I no longer would sit in the hospital all night responding to low flow alarms and brought her cycler from home in the following day.  They told me that was against policy since all equipment must be checked out and approved.  Bottom line I told them that unless they were willing to sit someone down in her room all night, the machine they were using wasn't going to work  As it ended up we used her machine for the balance of the week with no low flow issues.  They continued to have problems with supplies so we continued to use a red manual bag to supplement her 2 6 liter green cycler bags.  On the third day in they informed me that they ran out of extraneal fluid and would not have any more in for the next 3 nights.  I ended up having to bring in my own bags of extraneal to finish her out.  I stayed every night just to make sure all was okay.

I did write to the hospital and got a call from the head of the dialysis department.  We went through all the issues.  I was told the reason for the older Baxter equipment was budget related and needing to get a certain amount of return on investment.  I noted that if they had the newer machines where we bring in our program card, her initial programming error that they made on the old machine would have been eliminated thus saving money and potential patient harm.  I also noted that if I had refused to stay that first night, they would have had to call someone in to sit by the machine all night to get around low flow alarms.  I also noted that there was no patient assessment done about her dialysis treatment since as we have learned everyone is different in drain speed and peculiarities about their PD experience.  The department head said that they could do better and that they would look into the machine, supply, and especially a pre assessment regarding incoming PD patients.  I also noted that they had no one on staff present overnight with cycler training or experience and those who had some were woefully trained.  Again I was promised that all my concerns would be looked into.

The lesson learned is to make sure your hospital has adequate supplies, and a good assessment program so they understand your dialysis treatment including your PD traits.  Also if they can't provide you equivalent equipment like you have at home, be prepared to bring in your own.  Newer Baxter equipment is more tolerant of low flow situations and will guarantee that you can use your memory card with your program in it. 

Jack
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Deanne
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« Reply #3 on: January 09, 2015, 07:56:31 AM »

You might want to talk to her dialysis center in case there's ever a "next time." I'm not on dialysis anymore, but my center knew which hospital(s) were able to cope well with PD patients and which were "maybe's."
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
jcanavera
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« Reply #4 on: January 09, 2015, 08:16:26 AM »

I have talked to the folks at her dialysis cent and unfortunately this is one of the major hospitals in St. Louis.  Problem is that PD is still a minor part of their dialysis and they really are geared up for hero. The other side is that you have to deal with insurance and with your doctors who are affiliated with these hospitals.  She has a few medical issues including diabetes, afib, and other things which leaves us in a position of need to watch other things when she goes in.  Insurance plans provided by businesses now are dictating what hospitals they will cover in St. Louis which leads you to limited choices or having to make wholesale changes in all your doctors if you want specific hospitals.  Her first kidney event was handled by a hospital close to our home (which is a good hospital), but none of the doctors there had access to her medical records which are held by the health/hospital chain that my wife sees.  We encouraged the doctors at the hospital to call her other doctors but they won't and she went though many issues while the doctors had to learn what works and what doesn't.  It's bad when you have good relationships and care from a group of doctors who aren't affiliated with the hospital that you are admitted to in an emergency situation.

Jack
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iolaire
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« Reply #5 on: January 09, 2015, 08:20:22 AM »

I choose a hospital near my home associated with my nephrologist over one associated with my general practitioner...  The GP has a limited role but I want to make sure my kidney care is covered by my doctors.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
jcanavera
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« Reply #6 on: January 09, 2015, 08:40:18 AM »

I choose a hospital near my home associated with my nephrologist over one associated with my general practitioner...  The GP has a limited role but I want to make sure my kidney care is covered by my doctors.

Patty has so much going on that drug interactions can really cause issues.  With dealing with single doctors affiliated with one hospital, the doctors now do all of her drug prescriptions interactively.  If one change or new drug goes in, all of the specialty doctors concur to make sure that there are no specific concerns.  Her afib drug is especially critical which even makes some antibiotics off limits.  At this point after my experience I just know that I will have to stay proactive on her PD side if she is admitted to this hospital in the future.  I'm a real pain to the docs when I feel things aren't right.  In this day and age you have to be proactive, ask questions, and sometimes tell them if you don't agree with the course of treatment.

Jack
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cdwbrooklyn
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« Reply #7 on: January 09, 2015, 12:16:37 PM »

I choose a hospital near my home associated with my nephrologist over one associated with my general practitioner...  The GP has a limited role but I want to make sure my kidney care is covered by my doctors.

Patty has so much going on that drug interactions can really cause issues.  With dealing with single doctors affiliated with one hospital, the doctors now do all of her drug prescriptions interactively.  If one change or new drug goes in, all of the specialty doctors concur to make sure that there are no specific concerns.  Her afib drug is especially critical which even makes some antibiotics off limits.  At this point after my experience I just know that I will have to stay proactive on her PD side if she is admitted to this hospital in the future.  I'm a real pain to the docs when I feel things aren't right.  In this day and age you have to be proactive, ask questions, and sometimes tell them if you don't agree with the course of treatment.

Jack

Hi Jack,

First let me commend you on keeping up with you wife’s treatment. You are so right about doctors/nurses just doing anything to your wife to see what works best. Always go with your first mind because some doctors/nurses are very heartless when it comes to your wife’s care. I had doctors get very mad at me because I told them that something is not right or does not sound right.  They accused me of being more educated than them.  I would tell them; “No, I’m not, I just know my body.” 
 
Anyhow, keep your head up; you are doing a fantastic job!      :2thumbsup; 
« Last Edit: January 09, 2015, 12:18:56 PM by cdwbrooklyn » Logged

Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
jcanavera
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« Reply #8 on: February 09, 2015, 07:57:33 PM »

Thanks for the kind thoughts.  I got the big manual on her Baxter cycler, studied it and spent a lot of time on the phone with Bacter support.  I've got a pretty good handle  on things and her Pd nurse often tells the doc and others that I know more about her machine than most of them do.  I felt pretty comfortable in addressing the inadequacies of her PD care when she was in the hospital to the hospital and departmental management.  I never thought I would have to go this far but in this day and age, individual care is compromised by costs, so for all intents you have to ask questions and be proactive.

Jack
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Charlie B53
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« Reply #9 on: February 11, 2015, 03:34:23 PM »


Similar experience with the VA Hospital.  I hadn't spent a night since starting PD almost two years ago so when I went to their ER I took my machine and supplies, enough for three days.  Just in case.  The 'Attending Dr' had to write orders for PD to be done.  He didn't bother to ask ME anything.  I don't think he even bothered to look at my PD log book which spells everything out clearly.  Nurse and I had a bit of a talk while programming the machine.  She would NOT make the settings the same as I have at home, claiming she HAD TO follow what the Dr had ordered.  I wanted her to call him and get it changed.  Second night she did.  Second night they were out of Ico and we had to get my keys from Security, go out to my truck and get a couple of bags.

My Baxter cycler was new when I got it, but it does not have a 'card'.  That would be handy.  My CPAP does.  That's another machine I always take with me.  I won't take a nap without it.  Wore out the first machine at about 7 years, expect this one to quit making enough pressure any time now.

I whole-heartedly agree, you have to take an active role in your, and your partners treatment.  Staff cannot know intimate details of a persons treatment.  Even checking the treatment log book there are a number of issues that are NOT spelled out.  These can make a very big impact on treatment success, or failure.

Stay vigilant.
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jcanavera
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« Reply #10 on: March 21, 2015, 08:07:03 PM »

Back in hospital due to another pancreatitis event.  I packed up the supplies and her cycler and we took care of her night one.  Hospital had a big powwow with her nephrologist today.  They insisted that they had dealt with many of the issues I brought up with last time.  They now have an onsite person trained round the clock.  Supplies are plentiful.  Doctor asked me to call him if any screw ups occur.  He warned administration that they will no longer used this facility for their patients if things don't go right.  Apparently my interactions with them in January had some effect.  So we are going to use their cycler tonight.  We will see if things go well.  If they don't I hate to be the administrators because my doc can pretty much put their dialysis center out of business by pulling his patients and the others in his Nephrology group. 

Jack
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jcanavera
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« Reply #11 on: March 31, 2015, 09:04:45 AM »

Just as a follow up, the hospital supplied cycler worked well.  Supplies were there and things apparently improved.  Her nephrologist said that administration was very much aware that I was there and that my initial bringing in and use of our cycler on this stay pretty much was a shot across the bow that we were going to be aggressive on her PD treatments.  Apparently there were several meetings with administration and staff regarding her PD care and her doc told me that they haven't forgotten the ruckus I made on her previous visit. 

My only thing that I really thought they would do, and they haven't, was have that initial PD assessment meeting with us that I had suggested.  The problem I see is that when you have an admission through the emergency room, it is more than likely in our case that dependent upon the reason, your PD doctor isn't going to be high priority.  In her first admission in December they put her on continuous flow using yellow (which I knew was useless).  Then the next day they gave us a cycler that didn't work right.  This time, I brought our cycler and she got the right treatment and fluids that night. 

Bottom line Ive learned that the wheels turn too slowly and to contact the doctor, get instructions on how to program the cycler and get it all together by nighttime is just about impossible if she gets admitted in the late afternoon or early evening.  So unless we are dealing with something dialysis/kidney related, her cycler will come with us to use for at least one night.  That way we are ready and I know that first night, we will get the best dialysis treatment.

Jack
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