You are currently browsing the category archive for the ‘MSK’ category.

I wasn’t as if I had been making the world or anything. I attended two meetings and ran a few quick errands. There was even at least one whole hour of lying down, full-blown rest time in there.  But, yesterday completely wiped me out.

 

As luck would have it, today was a snow day and, even if I hadn’t been so tired, I would have stayed indoors anyway. Even if this had not been a snow day, I would have been stuck here. But I was most definitely not alone.
The Boys

I have two very entertaining boys who were not in school today. We enjoyed some time together, making and eating cookies, and watching Narnia, Prince Caspian.
The Friends

I had  texts from concerned friends when they did not see me online. Ok, I’m either an addict or this is my career. I’m standing firm on the career, but there seems to be a slim line.
Twitter Love

I didn’t totally stay off line. I tweeted here and there and made a few Facebook posts. But again, I received both public and private requests asking how I was feeling. I was really hesitant about this Blog-a-thon and my choice to talk about this procedure openly.  But it has brought me closer to some friends, brought me new ones, and even brought to light a need.
Finding support

I mentioned in the history of all of this that I have Medullary Sponge Kidney (MSK.) Through my efforts to reach out to others with Kidney Stones, I have found at least one other with this problem.  I’m sure there are more, but I found a friend who truly understands the type and extent of my pain.  How many people are out there suffering by timing mind-numbing drugs? How many doctors out there treat MSK like other stones and don’t look at other possible treatment options? Is research being done to find better ways to treat this condition? I don’t know any of these answers, but I know  @LeeAase , Director, Mayo Clinic Center for Social Media.  I’m asking him, and anyone in the medical field, specifically in urology or nephrology to comment on this post and connect with me, with us. We want to find out more.  We want to do more.  We want to be more than drugged up zombies.

Like I said I am finding this easier to blog about other stuff than to blog about what I am going through.  At the start I thought I had it under control, (an illusion I know.) I knew what to expect as I have undergone this very procedure before. I even told several people that I knew what to expect, and that I was not going to kid myself about the am

ount of pain and the amount of time I would be out of commission. I also followed those statements with “but this one won’t be as bad, because they (my kidneys) are cleaner than they were the first time, and it is only one side.”

I was so wrongIn the days preceding the procedure, I had some significant kidney pain on the left side. So on the day of my scheduled cleanout, I told the doctor about it and asked that he look into it. I remember him saying “good call on the left kidney” when I woke up. Turns out they did clean out both sides. Over the next few days I had discomfort.  I expected discomfort. What I did not expect was that my pain and discomfort would get worse over the passing days. I wrote it off with the rationalization that you always hurt worse 24-48 hours after a crash.

Gaining more than expected

So I started retaining water, or so I thought. My torso started swelling and over the past few days I have grown to look a solid 8-9 months pregnant! So on top of the pain of the kidneys being beaten from the inside out, and the discomfort of having hard plastic crazy straws stuck inside me, I now had the pressure and discomfort of being pregnant!

I have had x-rays and a CT scan. I have no answers yet. But the doctor did wish to remove the stents tomorrow. It is a bit early and I still have lots of stone fragments that will need to pass. Maybe it is my body rejecting or revolting about the stents. Maybe it is my bottom of the barrel revelation that I do not want to be fat (or pregnant) ever again.  Maybe there is another medical reason for me to be so swollen.  But that is the hardest part: The Uncertainty. I just don’t know what is going on.

Thank you to all my friends for your continued help, support love and prayers.

Day 4 of the Blog-a-Thon

Day 2 of #getitout

 The Current Situation:

 So here I am again, one side filled with stones. We knew they wouldn’t stay clean, but I was really hoping for a longer time in between.

 I‘ve been passing stones again, and it’s sucking the life out of me. Remember the “I can’t do that” declaration? I can’t / won’t just take pain meds and be zoned out.  After evaluation, the doctor and I have decided that a repeat of the previous procedure is necessary.

 I will be undergoing this procedure on Dec 30. I’m sharing this not for sympathy, but for growth. Talking about pain is not easy for me. I am one of the best at faking not being in pain, but this is the true reason I am doing the blog-a-thon.

 I will be chronicling my journey to prepare for and undergo this event.  I have several friends who, like me, don’t discuss their health. It’s almost taboo. I also have friends that turned to social media in times of pain and distress. I am attempting to explore the latter.

Please connect

 So do you get kidney stones? Are you a doctor or nurse or somehow in the medical field? Have you used social media to find support? I want to talk to you. Tweet me, Facebook me, or just comment here.  (If sending an e-mail or fb request please tell me who you are.)

 Don’t forget to follow the other bloggers in the blog-a-thon, and let me know if you want to join us, I will add you to the list!

Day 3 of the Blog-a-Thon

Day 1 of #getitout

The History:

Kidney stones. Ever had one? If you have you would not wish them on your WORST enemy. I get them. Plural. I get them a lot! You see I have Medullary sponge kidney disease.

Meaning? Means my kidneys are stone formers. When this really hit me, it was sudden. I thought I was dying for sure. That first one passed ok. (<– That is relative. It still hurt like hell.)  They got bigger and more frequent. The doctor told me my scans looked like I had been hit with buckshot in both kidneys.

Standard Treatment

I was offered medication to comfort me. (Knock me out and keep me from losing my lunch.)

In tears I followed my doctor out of the room and begged him to fix me.

I can’t do that

At the time I was passing 3-6 stones a month. They took anywhere from 2 days to a week to move through and get out. He contacted come colleagues in other cities and offered me a solution that involved open kidney surgery and the equivalent of a medial dust buster. They were just going to suck them out. This option was not a good one and he knew it. It was really risky and he knew with my condition that I would be right back to full kidneys within 2-5 years.

He cared enough to find a solution

After talking to more colleagues, he came back with a different idea and one that could be done right here in Evansville. I would not have to travel to a larger city.  They proposed a ureteroscopy with lazer lithotripsy to be done. This is a “standard treatment” for stones, but only when they are in the ureter. They proposed that they extend the ureteroscope up into the kidneys. They would then go up into each of the 5 or so pockets in the kidneys and blast the stones away.

The happy ending…

I underwent this procedure with great success. I was mostly stone free and after a longer than I expected recovery, I felt like a 100% new person. Amazing how good you feel when your kidneys have room to actually work!  <– That was a little over 2 years ago…

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 13 other followers

Follow Me