Yesterday was the day for my Hickman line to be placed. It was NOT a good day, though my Hickman was successfully placed so in the end all was well. May I vent a bit, though?
Last Thursday, my labs showed low platelets, too low for the surgery for the Hickman, so I had a platelet transfusion on Sunday. All good. Friday, the scheduler from the B&W hospital called to set up my surgery: 10:30 on Monday. Hmmm. I expressed my concern about the late time, since I knew there would be eating and drinking restrictions - these just don't work well with diabetes. But since the restrictions were only 6 hours prior, I knew how to address this through a modified eating plan and lowering the amount of insulin dripped through my pump. All good.
And then Monday arrives. Linda and I head to Boston. Labs were first on the agenda at 10. Blood sugar a bit high as I had planned. Good. 10:30 comes and goes. We're still in the waiting room. 11:30 comes and goes. Still in the waiting room. I check at the desk. "You'll be soon. Labs take about an hour." What??? Why wasn't I told this? My impatience is rising and Linda is trying to keep her cool to keep me calm. Noon arrives - hey, what's going on??? We're still in the waiting room! I check at the desk again and tell her that my blood sugar is now 124. Still ok, but I am beginning to worry. If my blood sugar drops, what will happen? Before surgery, I can't have anything to eat or drink, so I cannot take care of a low blood sugar.
Finally we head downstairs shortly after noon. One o'clock: blood sugar 59 - not good at all. (normal blood sugar is 80 - 120). The nurses - yes, that's plural - didn't know what to do with me. I was stunned! "Why don't you lower your basal rate?" they suggest. "I already did. I am getting very little insulin in me right now." "Ok, you'll be going in soon." And off they go. I am furious, but I lay back, trying to rest, trying to remain calm.
1:45. Now my blood sugar is at 45 and I am completely beside myself and, yes, I made a bit of a scene. I was crying, I was yelling. The nurses were still puzzling. I told them to get a glucose drip into me! "Hmmm,should we?" I told my sister I was leaving. I sent an email (iPad always in hand) to my DF nurse to tell her I was leaving. I was ready to leave when the PA came in and said "Get her on a glucose drip!" and apologized profusely. Soon after I was in 'twilight' and my Hickman was in place.
We arrived home at 7pm, rather than the anticipated 2pm. It was a long, upsetting, and very frustrating
It did, however, remind me that my pocketbook needs to be well stocked before I am admitted to B&W next week. I must rely on others for my cancer treatment, but I will strongly resist relying on others for my diabetes care.
And today, Linda and I are sitting in the Kraft Family Blood Center, awaiting more lab results to see if I have enough stem cells to collect. We've been here since 7:15 am. It looks like we have another long and potentially frustrating day ahead of us. Fortunately, we have books, games, crocheting (Linda), and other sundry items to keep us busy - and we have a hotel room for tonight.
Lord, grant me the serenity to accept the things I cannot change.
If I was there, those nurses would be screwed... good luck with everything today mom!!! We are al so proud of you and are here to support you every step of the way :)
ReplyDeleteSusan, So unacceptable! I admire your ability to remain strong, clear-headed (glucose drip, seriously, and an I-Pad??), and determined to remain in control of what you know your body needs! God help them if they mess with you again! You mentioned your pocketbook and I encourage to consider how a pocketbook was used many years ago on Laugh-In... use as needed. Hugs!
ReplyDeleteI'm speechless! That is just so wrong. How insensitive and uninformed. So sorry, Susan. Good for you for being so strong. But really , that's not what you should be worrying about. Let me know if there's anyone you want me to yell at!
ReplyDelete"And miles to go before I rest". Edgar comes to mind on so many levels after reading your blog entry Susan. I so admire your courage.
ReplyDeleteYour experience is exactly why I do the work I do. So .... I'm going to put on my consultant hat and give you some advice.
. You've got the right attitude -- Keep your pocketbook packed. Healthcare providers have too much to do and not enough time to do it in. You've got to be your #1 advocate. Be bold. only give them the data (after the fact if you need to but do give them the data.)
.Put your most trusted Dr/PA/NPA in your speed dial. Decide ahead how long is a reasonable time to 'wait' then subtract 1/2 to 1 hr. This is your move to action time. Check-in with the staff as you did in your respectful way. When it approaches your 'move to action time' let the staff know that you will be calling your provider if you aren't seen by X time.
If X time comes. Do not hesitate to call/page/text your provider and camly explain the situation. Ask them to intervene on your behalf. If they don't in a timely manner. Ask to speak to the Attending. Be polite and persistent.
Regarding being taken off your pump -- Ask for a team meeting and explain your concern is one of trust -- you've got excellent example(s) of why you don't trust. Negotiate a deal with them -- including what happens if they don't live up to their end of the bargin.
Remember - healthcare is a mish-mash of poorly integrated systems. The best clinicians put against a lousey system loose every time. Assume the left hand has to jump through hoops to know what the right hand is doing (Think wizard of Oz).
Remember - it isn't personal. Your providers care about you -- it is incredibly hard to provide good care, consistently in the environment they need to work in. Which is why you are smart to be vigilant and your own advocate.
You have equal but different credentials than your clinical team. You are the expert of you. That counts.
If you have waited until you are crying and anxious you've waited too long to speak up.
You go girl!