PKD Kidney compared to a normal, healthy, adult kidney. PKD kidneys can weigh up to 30 or 40 pounds EACH.
This gives you an idea of just how large we're talking about... This next photo is even more graphic, but notice the size of the surgeon's hands compared to the PKD kidneys. Also, keep in mind that a healthy kidney is roughly the size of your closed fist.
Needless to say, if you have PKD, you have issues aside from the kidney failure. First and foremost is the perception by those who are ignorant of your situation, that you are intentionally obese. Some people will make hurtful comments regarding your apparent weight out of a sense of trying to help. Their hearts are in the right place, but they just don't understand that eating less and exercising more is not going to have an effect on your body when your kidneys are so large that you can hardly move most days. Other people however, will use the way your condition makes you look to attack you in cruel and vicious ways. The way to handle those people is to ignore them. They have absolutely no idea what they are talking about or what you are going through. If they had to deal with the things you deal with on a daily basis, you know they would simply curl into a ball and waste away because they are not only poorly educated, but they are the definition of weak-willed.
Love yourself for who you are. Don't ever let other people dictate to you how you should feel. In the words of my beloved RuPaul, if you don't love yourself, how the HELL are you gonna love somebody else? I'm blessed to have so many people in my life who love me and I love them right back.
Now then, moving on...
Yesterday I went in for another round of dialysis. My days are supposed to be Tuesday, Thursday, and Saturday. Thus far, I haven't been able to adhere to that schedule at all. Yesterday was no exception.
I arrived at the clinic at my appointed time and the nurse that was successful on Friday was my nurse again. I had applied the EMLA cream and when I weighed in, I had only gained about 4 pounds since Friday. That's about average between a Tues/Thurs session, so only having gained that much since the previous Friday is actually quite good. We decided I would stay onboard for about 4 hours and they would try to pull about 5 pounds off. Dan had taken the day off from work because we had initially had a very busy day planned between an MRI for our Daughter and several other Doctor appointments for me and whatnot. As it turned out, the MRI had to be rescheduled due to Medicaid not having approved it yet and my Doctor appointments were cancelled so that I could dialyze.
Dan helped me get settled into my chair, covered me in my blankie and made sure I had the Kindle and my water bottle and so forth and then headed out to the waiting room. He planned on heading back home as soon as the needles were in and the machine was on, but he didn't want to leave before then just in case... as it turned out... that was a very good decision.
The first arterial needle went in and immediately pulled very dark blood. Dark blood = clotting. Dark blood is not good. I had literally clotted off almost as soon as the needle went in. Shit.
She pulled that needle, listened to the fistula and felt it, determined that the fistula itself was not clotted off, I just have this weird ability to keep my blood in my body. :-/
Second arterial needle went in, and this time she couldn't find the fistula. That needle also got pulled.
Third arterial needle went in and this time I clotted it off immediately again. Thank goodness for EMLA...
I asked her if there was any way to integrate Heparin into the process. Heparin is an anticoagulant and in my vast expanse of knowledge, I figured that might help me stop clotting off the needle right off the bat. She explained that they weren't supposed to do that any more, but back in the day, that is how they did things.
Another nurse came over to try her luck and my original nurse came back with a Heparin laced needle after all. Fourth needle went in, found the fistula and did not clot. FINALLY! We all took a breather and then it was time to start the venous needle.
The venous part of my fistula is even deeper in my arm than the arterial, so I held my breath and hoped... Needless to say, fifth needle was a fail. Not only that, but this time the nurse managed to infiltrate the fistula. Basically, the needle went in on one spot but then also punctured another spot in the fistula. This causes blood to leak out of the vein and start to pool under the skin. This caused the area around the fistula to start to swell immediately making it even more difficult to stick. That needle was pulled.
We took a break before we tried needle number six.
Needle six was also a fail. The nurse didn't even hit the fistula this time.
That was it for me. I was a wreck, the nurses were wrecks, it was time to give up for the day. There was momentary talk of sending me to the hospital to try and dialyze there, and if they did so, they were considering leaving the arterial needle in because that way the hospital could just use it and not have to re-stick that one.
In the end, it was determined that I would just come back on Thursday to try again. This time they are having someone from the Access Center to come and stick me. Those people are the ones that build fistulas and they know all there is to know about them and how to stick them. The person from the Access Center will evaluate my situation and decide whether or not my fistula needs to be rebuilt or not.
After all of that, this is what my arm looks like currently:
Actually, 5 and 6 need to be switched... The spot marked with a 6 is actually the 5th place they stuck me... the one that infiltrated. The spot marked with a 5 is where they had to attempt to move to after the infiltration.
Today my arm is very tender and very painful. I can't even stand to wear my lightweight cotton robe because it has long sleeves and I can't stand the pressure that the lightweight cotton is putting on my arm. The whole thing sucks, but I keep telling myself it will get better... It has to.
I need to go grab an ice pack and a couple of Tylenol now, so I'll close this. I'm going to stay positive and believe that tomorrow will go much better and the person from the Access Center will be able to teach the clinic nurses some sort of magic trick to be able to stick my fistula successfully the first time.
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