Wednesday, July 29, 2015

My Kidneys

My Kidneys....

I am not quite sure what is up with them.  Or if it is even them causing me issues.

Back in March I had a BAD UTI.  So bad I was peeing purple....yes PURPLE.  I should have taken a picture it was so weird!!!  Even the nurse and doctor commented they had never seen pee that color.  Fabulous.  I got an Rx for Bactrim and within 36 hours my pee was normal again.  I was on a study for colon cancer and contacted my study coordinator to let her know.  I thought this was my first UTI.  Turns out it was my NINTH.  I never knew about the other ones because they were discovered when I was inpatient and they cleared up with the IV antibiotics I was given for my lung infections.

So no one ever told me about them.  I had a feeling something was going on because each admission I would have to do 2-3 collections since the first and sometimes second would have microscopic blood in it.  But no one ever told me they were UTIs.  For 3 freaking years I have been having them!!!

Fast forward to my MGH appointment in June.  We had discussed doing a 24 hour urine collection to get an idea of how my kidneys are functioning especially since I am no longer taking IV Tobra.  So Monday I start the collection.  I had been feeling like I was getting a UTI since it felt a little funny to pee but I just ignored it.  Monday night, more blood in my urine.  So I am freaking out that I will have to re-do the dam collection again (I had done it on Thursday not realizing the place I had to drop it off was closed Friday!).  I called my CF clinic Tuesday and she said not a big deal it actually helps because then they can see what is going on better.  And then I called my PCP to go in and give a sample and get more Bactrim.

Now this is 2 UTIs in 5 months that have visible blood in them.  My thinking is that I am usually getting them but I go inpatient for IVs before the visible blood starts.  But now I am going on 6 months without an admission so my body isn't getting the drugs to combat them.  So I pee blood.  March's I have no idea what that was all about.

Hopefully the 24 hour collection will reveal something about what is up with these infections.  They are not fun at all.  And I cannot figure out a cause for them.  I just hope it isn't anything serious.  My mind is obviously thinking my kidneys are failing or I have UT cancer since that is part of Lynch.  But my fingers are crossed its something silly that can be fixed easily.

Tuesday, July 28, 2015

One Year Post- Whipple

Today marks my one year since having the whipple done on my pancreas.

Last night I re-read all my previous blog posts prior to surgery.  I re-read how scared I was of not bouncing back.  How worried I was that it was cancer.  How necessary the surgery was if I were to ever have a transplant. I re-lived all those emotions last night.  It was quite the roller coaster even on this side of the ending.

Not much has changed in a year, besides my weight and the long scar I now have on my torso.  I am at my ideal weight (Mine not anyone else's) at 116 lbs.  But I had put on quite a few pounds before surgery to be sure I wouldn't fall too low.  I was 132 lbs going into the operating room.  Way more than I ever wanted to be or want to be again.

My health is doing great.  I still do not require insulin although my OGTT I had done recently still put me in the abnormal range.  So I am monitoring sugars for my appointment in October.  But I am not diabetic like we thought might happen.

I did not have any serious complications after surgery which to me is a miracle in itself! The stats for complications were ridiculous!  Besides some lingering nausea into the new year, I was complication and side effect free.  I have my appetite back and I can eat large meals again, which only took about 9 months to sort out.  My bowels have returned to normal too.

It is almost like surgery didn't happen.

Here are some photos to prove that it in fact did happen:

Getting changed into my gowns.  

Putting the IV in.  I can't look when it is inserted or I pass out!  

after the epidural.  Those things are awful but man do they take the pain away after!

post surgery when I was still out cold.  You can see my collection tubes on the left with liquid in them.  They were more annoying than anything.  I had to carry them every time I got up after I was mobile.  And they were sore.  And pulling them so I could go home was HORRIBLE.  I almost broke my mom's hand when they pulled them.  Fuckers were like 4 feet long (I have no idea how long they actually were but let me tell you they felt like they were a mile long)!  

1 week after surgery.  Scar looks pretty good here!  I was still bloated from everything.  You can see the vampire bite on the side of my abdomen.  That is where the two tubes were.  

You can really see the difference in my face with the weight I lost.  This was 11 days post surgery.  I had a really good day and felt great this day!  I remember it well.  It was a rare feeling those first few weeks.

This is my 6 weeks comparison photo I posted on Facebook.  

And this is me today.  My scar looks awesome. I am not embarrassed by it at all.  In fact I love showing it off.  Its something to be proud of.  I can say I survived the whipple.  Not that I wear skimpy clothes but I have a bikini I bought that I love to wear!!!  

Some previous Whipple posts:

Monday, July 27, 2015

I saw Dr H!!!

I was in Philly July 16-20 so I made a date with Dr. H to visit with him.  My mom came with me.  It was SO FREAKING AWESOME to see him again!!!  He hasn't changed much, only his wardrobe is more up to date.  I did miss the tweed jackets!

We chatted for about an hour.  Just about advancements in CF medicine, my health and life in general.

It was like seeing an old relative that was super beloved.  I am so thankful I got to see him.