A Medical Standoff and Girl Scout Cookies
I know, you're wondering what one has to do with the other. Patience, all will be revealed!
First, some back matter is in order. On February 21, I had my evaluation for a kidney transplant at a university-affiliated medical center about 100 miles from where I live. The way this institution operates, it takes about 8 months to get from initial referral to evaluation and there are all kinds of diagnostic tests in between (see previous blogs for more details). Once you are an approved transplant candidate and an organ becomes available, you go to the hospital and have surgery. The average stay for a kidney transplant is about 3 days and then you are discharged to a local hotel for 5-7 days. During that time, you return to the hospital every day for blood work, monitoring of the immunosuppressive medications and patient education. Also, you must have a full-time caregiver. That can be a friend, family member, stranger off the street corner, but they must be with you at all times to ensure that you are eating, taking meds, bathing, etc. Also, driving is prohibited until about six weeks post-transplant so the caregiver is also a chauffeur and attends the educational activities as a back-up in case the patient becomes incapacitated or symptoms of rejection appear.
In short, your caregiver must be able to put their own life on hold for about two weeks with as little as two hours notice. When you think about it, that's a pretty tall order to fill. I have a caregiver, he happens to be a member of this forum. He is a dear, dear friend and always will be if only for the fact that he is willing to undertake this role with only the merest of acquaintance. He is more than willing to put himself and his home at my disposal if necessary. I won't call him out by name, he obviously knows of whom I speak, but I truly feel as though Karma has smiled on me since our paths have crossed.
So the evaluation finally rolls around. Caregivers must be present during the evaluation. We check in at the medical center and are shown to an exam room. We are seen by a barrage of clinicians; dietician, nephrology resident, nephrology attending (the doctor in overall charge of my medical care while at the transplant unit), and the transplant surgeon. There are physical exams (kind of interesting since my caregiver knows me pretty well, but not THAT well), an EKG and a side trip to the lab. At the lab, the phlebotomist doesn't pay any attention to my advice about using a butterfly catheter and proceeds to draw 20 (count 'em, 20) vials of blood for type, cross match, antigen levels, etc, etc through a Vaccutainer. About halfway through, my vein collapses and she has to switch to the other arm, this time with a butterfly. After that, a chest x-ray. Back up to the 9th floor for our final meeting of the day; the social worker.
Up until this time, everything had been encouraging. I can't say enough good things about the clinical staff, they were all wonderful, professional, warm, willing to answer questions, etc. My transplant surgeon looks like he should be on a TV medical drama, he can unzip me any time! The good vibes ended the minute we sat down with the social worker. She informed me that I would be required to have a second caregiver, a backup so to speak. WTH? People that can call a halt to their lives don't grow on trees. Talk about hitting a brick wall. Here's a sample of the conversation:
Social worker: What will you do if you are discharged to home and you can't take care of yourself?
LadyDoc: Well, if I can't take care of myself then I guess I shouldn't be discharged, should I?
Social worker: Well, you could always go into a nursing home.
LadyDoc: Over my dead body.
And there you have it, the standoff. I have looked through every single printed word and email that I have ever gotten from this institution (and I keep very good records) and there is NOT A SINGLE WORD about having a second caregiver. The only family I have in the area is my daughter and she has two little boys under the age of five at home, so I can hardly ask her. My circle of friends is painfully small, many are disabled and not up to the challenge and the others have lives of their own.
The social worker called me a few days later to see if I had changed my mind and it suddenly began to sound like a sales pitch. She was touting all the advantages of this particular institution but I just don't see it. I am now turning my attention to medical centers where the inpatient stay is closer to 5-7 days and then the patient is discharge directly to home, none of this stay-in-a-hotel stuff. I can't think of too many places where germs and nastiness run more rampant than a hotel. I am so frustrated, I feel as though the last 7 months of my life have been an utter waste of time. Furthermore, the evaluation day was wasted; if we had met with her first we could have simply gotten up and walked out and said "Thank you for playing, please try again".
Where do the Girl Scout cookies figure into this? The next day, my neighbor came by to deliver my annual order; three boxes of Peanut Butter Patties. Not diabetic friendly, but one of the few treats I allow myself. I was in such a crappy mood, I could have sat down and devoured all three boxes right then and there. But I"m good, they all went into the freezer, where the vast majority of them remain. I feel better now, there is comfort in food if not in medical bureaucracy.
Umami-Me 11 years ago
Wow... I thought the Dutch were good at bureaucracy...
azdiane 11 years ago
Skybear is right, tell them what they want to hear. What are they gonna do if you just go home afterward, remove the organ they installed?
Prayers for you through this ordeal, and gentle (very, very gentle!) hugs for your recovery.
Mashie 11 years ago
http://www.youtube.com/watch?v=bruLafuiu80 Not sure if this will even work. BUt it is Michael W. Smith's song, "I will be here for you, somewhere in the night, standing by, I will be here for you."
The song is beautiful. After March 14th my vacation time opens up completely. Please Lady, if you need anything from me, all you gotta do is ask, and I will be here for you, as you have been here for me so many time isn the past while Doc and I were and are still trying to get through our own event. Just let us know what if anything it is we can do for you.
Sincerely Mashie and Doc, and I promise, we would leave a few of your girlscout cookies left for you, we wouldn't eat all of them, promise! lol
Elizabeth2010 11 years ago
I hope all goes well. Sorry I am the far side of the big pond to be of any use, but my thoughts are with you. Take care xx
ladydocisin 11 years ago
Thank you one and all for the prayers, suggestions, and support.
I have spoken to my daughter and there is no question that she would be willing to be my caregiver, in fact I would like nothing better. The fact remains that she would then be leaving her family without anyone to care for them and that is simply not an option. I feel that I'm just not a good fit for this particular program.
This really is a matter of logistics; either I agree to be placed in a nursing home or I look elsewhere for transplant services. I am lucky that there are two other facilities within 150 miles of me. While the wait time for an organ is substantially longer at the other centers, they are probably closer to what I need for a successful outcome.
For those that have contacted me privately and offered to help, I thank you from the bottom of my heart. The offer means as much as the actual doing. You know that I will keep you apprised of what is going on.
Thanks again for all your input. It's nice to have such good friends join me on my trip through the medical labyrinth!
skybear -N Florida 11 years ago
I am sure you already know this BUT:
1. Go over her head then to the state medical board
2. Ask the daughter she may not be needed after all
3. last resort, tell them what they need to hear for your transplant.
I wish people were easier to deal with but they aren't. If the worse should happen, I'll be glad to help hide the sacrificial bodies and swear in court it was self defense. (NOTE to self, reloading is hard to justify)
You are the most important part of this effort, don't let one female dog throw you off the trail.
Nightly prayers for your success
MissStress 11 years ago
I'd do some asking about this new unexpected caregiver. Maybe your daughter knows someone that would fit the bill and not be needed. Best wishes on this journey ahead of you ladydoc. May it go much more smoothly than this day did(well the last visitor part anyway).
smithjanie 11 years ago
ASK YOUR DAUGHTER!!!!! I say this as someone who has lost her mother: No matter how inconvenient things may be or how stressful caring for you may become, in the end she will not regret one single second of it!! That's what family is supposed to do-take care of one another!
jimmyt44 11 years ago
Ladydoc: Maybe you should contact administration at that hospital and ask them about this mysterious, "second caregiver" rule? See if it was made-up by the social worker.