Thursday, August 18, 2011


I had a disturbing dream some months ago and I now know what it meant. It was a short dream of a vicious dog, barring teeth, growling and standing over another dog that was just laying there. I now know that I am the vicious dog and my husband is the other one. Read this long story and you will understand why:

Don has a large team of doctors. We have a local general practitioner, a local hepatologist, a local hematologist, and a transplant team consisting of 4 surgeons located in Houston. The problem is that they do not always know everything that is going on with Don's treatment....and even when a procedure is being done by one leg of this team... they still manage to 'forget' certain details.

This is specifically what happened:

Today, Don was scheduled for a endoscope to check for any additional varaces and a colonoscopy to check for any new polyps. The last time he had the scopes done, his platelet count was so low (side effect from cirrhosis) that he had to get a transfusion. Well, everything was postponed 1 day because the local community hospital did not have his blood type of platelets available and they had to be brought in. That causes havoc for our employers and our co-workers.

This time, Don called and called his doctors office about getting the pre-op blood work done and the nurses INSISTED he did not need it and that it would be done at the hospital. Don went as far as going to the lab anyway and offering to pay for it to be done himself.. but without the doctors orders, they would (or could) not do it.

We arrive at the hospital this morning and what do you think the first frikken thing is that they ask for????? BLOOD WORK!

Not only that - but after doing it themselves, they find out that his platelet count is 56,000... way below the 80,000 that they want it to be to have any kind of surgery or procedure. So - obviously he has to have a transfusion. Thankfully, this time they do happen to have 5 units of platelets ... less than the 8 that the doctor wanted him to have... but 5 was sufficient.

Yes - I called the doctors office with a "thought you might need to know this" kind of a message to the staff who insisted the blood work was unnecessary. I tried to be as nice as I could be.. but telling someone they were WRONG no matter how nice you phrase it.. probably made me out to sound like a bit** anyway. Take another look at the dog above... because that was as close to a smile as I could come when I was leaving the message!

If everything went fine with the scopes, they were going to check him into the hospital and the following day he was to have an umbilical hernia repair and have his gall bladder removed since it is full of stones. The hernia must be repaired since it hurts.. which apparently is a sign that says 'fix me now'! Removing the gall bladder is 'preventative' since he is not suppose to have any type of surgery when he is on the new chemotherapy drug called Victrelis. Victrelis apparently accelerates anesthesia and makes it very dangerous.

Well after the scopes were done the local Hepatlogist calls the head of the transplant team to consult with him about the procedures. Apparently there were apprehensive about taking his gall bladder out. The transplant doctor became very possessive (for lack of a better word) and gave an emphatic NO to ANY SURGERIES. He said that he did not want Don to have any surgeries, even one as simple as a hernia repair, done at a Community hospital and not only that ... but he told local dr. hepatologist that he did not want anyone other than the 4 transplant team surgeons operating on Don at all.

While a small part of me is happy that Don is getting priority treatment, another is completely miffed because we pointed out the hernia to transplant doctor the last time we were there. Can't everyone play on the same team here? I had already arranged to have the rest of this week and all of next to care for Don while he recovered...and now we don't have a clue what is going to happen next... or when!

My point is... if you love someone who is ill... BE THEIR ADVOCATE! Go to every single doctors appointment and procedure with them. Keep a record (like a dated journal) of what each doctor says, prescribes, and advises...and make sure you go through it with every single doctor you see.... It won't guarantee that everything will go perfectly smooth (hence the blood work story!)... but it will help you to keep your sanity when the road in front of you all of a sudden starts to bifurcate in a million different directions!

SHEEESSSHHHHHHH! I need another vacation!


RiderWriter said...

Dang, girl, I know what you mean. The whole entire medical world seems determined to drive you NUTS sometimes. And you are 100% right, you MUST be your own/loved ones' advocate because NOBODY ELSE is gonna do it!

I am incredibly fortunate to boast rather good health myself (*knock on wood) but I've been through a few things with other people. My husband needed treatment for something and it took months and months for ME to find the appropriate outlet (DH was not motivated to do so). Regular Dr. is a nice guy but was no help whatsoever in that situation. Today Hubby is much better off but ONLY because *I* pushed and pushed and pushed.

I am also a caregiver for an 87-year-old diabetic. She is a royal pain in the blankety-blank, but taking care of her is my job so I try to do it well. She had a sore on her rear. You'd think no biggie...well, we played round-the-rosie with THREE doctors, all of whom stated flatly, "That's not my responsibility, it's so-and-so's." They all passed the buck and not one of these idiots would help her! So the other caregiver and I found an OTC patch product specifically for healing ulcers, and guess what, we fixed it. Thanks a lot, doctors. >:-/

They don't really care if you've taken off from work, travelled far from home, left kids/animals with others, eithers. We must run everything according to THEIR schedule. Hope you can fix things with your coworkers!

Hang in there. Don is a lucky man to have you on his side, and I'm sure he appreciates all your help.

Dianne said...

So sorry Julie! Hope this is all done soon for your sake and Don's.
We are busy having all pre-op work done in case they call with a liver. Yippee!

vivian said...

eiy yieyie!! good thing that youre on the ball! poor Don. Can anything just go smoothly as planned? You are a great advocate for your husband. probably learned from your daddy!
hope things go smoother next visit!

Justabeachkat said...

You have every right to be frustrated!!!