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.

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:

10 weeks post

In training for my Life

Surgery is a MUST

Finished Processing

Tobi Podhaler

Home from the Hospital

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.

Feeling the need to be more creative

I think I want to get back into painting.  Although between the crochet and sewing and baking and research for the Wakefield 4th of July parade I am pretty much out of free time.  But after the 4th I can finish up the sewing projects I am working on and maybe I can add some painting into the mix.  I need to get back into drawing and that sort of art.  I miss it!  Maybe I can take another class again this fall like I did a few years ago.  I really enjoyed it.

First Appointment at MGH

Today was a very long day.  But it was worth it.  I really like the clinic at MGH and I am going to stay there.

I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30.  It has been raining for 3 days and I knew traffic would be a mess.  It was.  PFTs went well, I have not changed since April which is good.  They did a post as well and I shot up 3% from 37% to 40%.  It doesn't seem like much but it is a 9% increase which is huge!  I got a little panicky in the booth when they blocked the air for the test.  But I only had to stop once.  The woman was very nice and didn't get annoyed thankfully!!!  I never had that happen before.  Good old anxiety haha!!!

At 10:30 I had my clinic visit.  I saw the nurse and we went over everything.  It was probably close to an hour we chatted.  I had to give a history and medications etc since I am new.  I talked about some of the issues I have and things I would like to focus on.  We are going to do another OGTT to see how my sugars are.  I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at.  I scheduled an appointment with her for September.  I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan.  I am going to see a gynoendocrinologist who focuses on hormones etc after menopause.  I never knew someone like that existed and I think it will be great to meet with them.  We are going to do an overnight O2 study to see how my numbers are when I sleep.  I haven't been using O2 when I sleep the past month or so and I have been feeling OK.  But I want to be sure I am not hurting myself by doing this.  I got a prescription for Ativan which I loooooove.  So thankful they gave me one for my anxiety.

After the nurse, I met with my new CF doctor.  He was great.  Very personable and open and I felt very comfortable with him.  We talked about everything, my history, action plan etc.  One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning.  Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra.  I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work.  So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests.  His main concern is that I am treated by the same family of antibiotics instead of getting two families in there.  So if we can add Tobra back in that would be good.

Overall I was there for 3.5 hours and I feel like I got so much accomplished.  I felt very comfortable there, not like I was out of place at all.  At BCH you get shoved in a room and I always feel like I am a caged animal.  AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out.  I chatted with the woman at the desk and it was nice.  I felt like they cared and like I wasn't just another patient on the list.  I missed that from my old clinic in PA.  I am so glad to have it back.

So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!!  You ladies rock!!!

Now to send a good bye letter to BCH...

CF Awareness Post Question Day 27

How does having Lynch Syndrome affect your CF? And vice versa?

For those who are not sure what Lynch (HNPCC – Hereditary Nonpolyposis Colorectal Cancer) is I will tell you.  It is a genetic predisposition to certain types of cancers.  They include colon, anus, pancreas, brain, sebaceous glands (skin), uterus, ovaries, bile duct, urinary tract, stomach and small bowel.  Basically the digestive organs and some reproductive organs. (I have a blog post about it here: http://mycfjourney.blogspot.com/2009/07/my-colon-cancer-screening-visit.html I apologize for the text, I have changed my blog layout since it was written!).  My family carries the hMLH1 mutation, but there are four total.  A strong family history means you should probably get tested for the gene.  This quote from the print out I have will help calm anyone out there that is thinking OMG my great granddaddy had colon cancer, and that was it, in my family! “Persons at risk for HNPCC usually have a family history of two successive generations of colon cancer or at least once generation with cancer and one with polyps.” So if only one person in your family has had colon cancer, passed the age of 50, and no one had has polyps, chances are slim you have the gene. NOT saying you DON’T, just saying chances are slim. And remember I am NOT a genetics counselor nor am I a doctor!  If you are concerned that you may have this in your family, talk to your PCP and find a genetics team to discuss your family history with.  They will tell you if you need to be tested or not.  My family history is every generation has had colon cancer and colon polyps on my dad’s mom’s side.  This includes my dad having colon cancer when I was 26 years old, and only a few months old.  So I grew up with knowledge of both CF and Lynch Syndrome (didn’t know the name of LS just that colon cancer was hereditary).

Lynch affects my CF in a lot of ways.  I need to have yearly testing right now to be sure I am not growing any cancerous cells in my body.  Yearly I get colonoscopies, thyroid ultrasound, upper endoscopy and a skin checkup.  Having CF complicates my colonoscopies and upper endoscopies.  A prep for someone without CF only takes the day before the procedure.  If the procedure is on Thursday they stop eating Tuesday night, clean out Wednesday and are nice and clean for Thursday.  Not for me.  I need to stop eating Saturday night and eat clear liquids/foods on Sunday.  Then Monday, Tuesday and Wednesday I have to clean out.  And even with this I am not always “perfect” but enough to get good results. 

Lynch has also played a significant role in my evaluation for a double lung transplant.  The team at BWH was not too sure what to do with me.  They had many meetings and in the end decided I would be an OK candidate.  Under the strict terms that once I am transplanted, those yearly tests become six month tests.  There is a much higher risk for cancer post-transplant because of the immuno-suppressants so my risk will be even greater than that.  As it stands now with my yearly colonoscopies, there are always 3+ adenomas polyps removed (those are the ones that if left to fester can turn into cancer).  My whipple done last July was done only because the transplant team did not want to take the risk that I had precancerous cysts on my pancreas.  They removed me from the list until it was figured out, and it could only be figured out by doing the whipple.  So I had to have this huge surgery to be sure.  I was lucky and have had no real complications so I am fine with having had it done now and thankful they were only CF cysts.  I also had a full hysterectomy in 2011 because of Lynch.  Many years of reproductive issues coupled with my desire to not pass my genes on to children led me to have all my reproductive organs removed.  

CF Awareness Post Question Day 26

I took a break from CF awareness this weekend to celebrate Memorial Day and remember why we celebrate.  God bless the fallen service men and their families.

I know you like the winter months the most. Having CF is there any seasons that are better for you. Or months.

I love the snow of the winter months but my lungs do not like the cold!  I was hospitalized this past January primarily because of the awful cold weather we had making my lungs constrict so much I was requiring 3L of oxygen while exercising.  Normally I would need none for what I was doing. 

The summer isn’t too bad for my allergies but the excessive heat makes me lose more salt than I normally do and I dehydrate faster.  And the humidity makes it difficult for me to breathe. 

In spring the allergies get to me a lot. 

Fall is probably the least awful for me.  Luckily it is my favorite season.  Allergies are at bay, for me, and the really cold weather hasn’t hit full force yet.  

CF Awareness Post Question Day 21 and 22

Day 21 I asked for more questions and I got them!!!

Day 22:

What was it like for you to travel outside the US having CF??

In all honesty it was not bad at all.  I had my doctor write me some notes for all my medications and in case I needed to be seen at a local hospital.  I had researched hospitals in the cities we were visiting to see if they had CF centers and wrote them all down.  Just in case of course.  I had to pack extra medications in case we were stranded there longer.  I had to be sure I had conversion plugs since the sockets over there are different, though you have to check with the specific hotels since I think some voltage might be different.  It’s been a while lol.  I took fewer medications then too.  I didn’t do my vest so I didn’t have to travel with that which made it easier for me. I had all my medications in one bag in a carry on so that nothing would be lost.  Plus a medication bag does not count as luggage! 

As far as the trip itself, I was much healthier then and was able to do a lot of walking which we did.  Now I look back and the thought of doing all that walking makes me want to sleep for days!  We also scheduled some down time.  In Florence we were there for 6 days and we have activities planned for 4.5 of them.  So one day we had nothing planned at all and we lounged at the hotel and relaxed.  It was good for both my mom and I to rest.  We did 5 cities in three weeks which was perfect.  Two of those days were for travelling to and from Europe.  We took the train in Italy and planes from Paris to Rome and Florence (I think we took it from Florence, we may have traveled to get to the airport I cannot remember) to Prague. 

All in all, as long as you know your limitations and you can fly then it is worth the trip.  Of course this was to Europe.  I don’t know how it would be traveling to a third world country the Americas (Latin and South).  

CF Awareness Post Question Day 20

You have had experiences of a volume and magnitude with the health care system that few have. I'm interested in your insights.

As a nurse and a patient, I've experienced both sides of the coin and I'm aware of bad apples, general malaise and the "systemic" characteristics of a system with funding issues.

What I'm most curious about are your experiences. Are there things which healthcare workers unwittingly do or say which aren't helpful? Do you dread your interactions with the medical system? What are you overall impressions?

Being a patient that is in the hospital for extended periods of time on a lot of occasions you learn what you like and dislike.  A lot of the things I don’t like I suck up and deal because it is hospital protocol.  For instance, I use the VEST while inpatient and do not need to see a respiratory therapist for manual chest physiotherapy, though some CF patients do get this while in.  However, they still have to check on me twice a day to be sure I don’t need anything from them.  So each time they come in they listen to my lungs and ask me the same questions.   It’s very monotonous lol.  And annoying!  Especially when some of them come at 8am and you are still in bed.  But they have to do it and it’s what I get for being there for two weeks. 

As far as nursing goes, there are certain nurses that I dread getting and it’s like roulette when I am in.  Will I get her or not?  Some of the day nurses come in at 7:30 and act surprised I am still in bed.  They say things like “oh you’re still sleeping?!?!”  or “I figured you would be up by now!”  Hello it’s only 7:30 am and I have nowhere to go so why would I get up???  Others are very strict about meds etc.  Most nurses give you the day’s supply of enzymes knowing that we are able and willing to give these to ourselves when we eat.  But there are other nurses that insist you page them each time you order food or eat.  It’s annoying for us and I am sure it is annoying for them, though they do ask for it.  Sometimes nurses forget to hook me up to my IVs at the times I am supposed to.  I don’t get mad I just call.  They get busy and forget.  It happens.  I usually only have one or two “bad” nurses each stay, and considering how many I see that is good odds.  Some of the nurses I LOVE and it’s like a holiday when I get them!  A great nurse can really make your stay sooooooo much more “enjoyable.”  And on the flip side, a really shitty one can make you want to go home immediately. 

I don’t dread seeing my doctors at all.  I know that they are they to make me heathier.  The hospital itself I am not a fan of but I am hoping to remedy part of that by switching centers.  Then I can be seen at a different hospital.  My current hospital, I prefer to do a full two weeks in and they prefer me to do it at home (by they I mean the people in charge of the hospital….they tried to move the CF patients to an entirely different hospital because we cost too much money but instead they came to a compromise with the CF clinic where anyone under 35 does inpatient at Children’s and anyone over 35 or over 18 and seen by the transplant team stays in patient at Brigham and women’s).  But financially I cannot do my stays at home and it is a fight each time I go in for me to stay.  That results in my feeling like an unwanted house guest.  So this new hospital is perfectly fine with you being there the two weeks and won’t make me feel like I am unwanted (so I have been told!!!). 

I’ve learned to juggle my life around the healthcare system.  I know that if I have an appointment at 11am I should not schedule anything else before 2pm or later depending on the doctor.  I know that if I am being admitted I will most likely sit in the waiting room for at least an hour and I should bring stuff to occupy my time.  I know that most doctors run late and it isn’t always their fault (sometimes patients ask A LOT of questions and I would rather them answer the questions than make someone feel rushed.  I might be that person one day and would hate it!).  I know there are a lot of faults with the system that need to be changed but they might never get done.  I can’t avoid it so I need to learn to deal with it.

CF Awareness Post Question Day 19

Here's a question: are there any dietary restrictions?

There are no real restrictions, but some individuals can tolerate certain foods better than others, like the healthy population.  People with CF need a higher calorie and higher fat intake than the average person.  We burn more calories so we need to take in more calories.  This is for those who are pancreatic insufficient, meaning the pancreas does not break down food like it is supposed to.  Some people notice that dairy products make them produce more mucus so they avoid milk and ice cream. 

Growing up I was told to eat eat eat, anything and everything.  My mom would put butter on everything.  We would search the food store looking for high fat foods only ever finding low and no fat.  You would be surprised how hard it is to find good foods that are high in fat and calories (by good I mean healthy and not chips, snacks and junk foods).  To this day it is hard to control my eating because of how I grew up and needed to grow up.  I never had to have self-control with food, because there was no need for it.  So if I felt like eating a container of ice cream I was allowed (I don’t think I ever did lol).  This is an area in the CF world that is slowly changing.  Stressing not only high calorie and high fat foods but also healthy foods.  Especially if growing old is an option now.  If you think you won’t live to see 30 you aren’t so concerned with heart disease etc.  But if you are going to live to be 80 you need to worry about those things! 

Gaining weight is an issue.  We struggle every single day to maintain our weight let alone put weight on.  I have been fortunate enough as I aged (thanks menopause!) to not have to worry so much about my weight.  But up until I was 30 I struggled for every ounce I gained.  By the time I lived on my own, I had a calorie regiment that would blow your mind!  I repeatedly heard the “you must have a hollow leg” comments or “where do you put all that food?”  Breakfast was light as I have never been much of a breakfast person.  But all day long I would snack and eat like it was my job, even while working, because it WAS my job.  I would eat snacks almost every hour if not more.  I brought two bags to work, one for food and one for work stuff.  Yes an actual bag dedicated solely to food and a drawer filled with snacks and cheese dip (I loved cheese dip on pretzels!).  I spent small fortunes on food and supplements.  I tried all types of high calorie milkshakes to eat throughout the day, coupled with snacks and dips and meals.  I would come home and eat more and then eat dinner and then have a snack before bed.  And even with all of this, I was lucky to be 107 pounds.  When I graduated high school I weighed 104 pounds.  By the time I was 25 I had only gained 3 pounds in 8 eight years.  For reference, since weight has stopped being a big concern for me, right before my pancreatic surgery last July I was 132 pounds.  I was a normal weight for someone my size.  Now I am 114-117 pounds depending on the day, time, etc. 

Many times I would stop eating because it was not fun for me.  It was a chore; it was a treatment for me. It was just like all the medications I was taking, except that I had to do it continuously. (this has changed now that I stopped worrying about my weight, I love food again!)  Sometimes I would dip below 100 pounds and I would stop getting my period.  I took many pregnancy tests thinking I must be pregnant, only to realize I was fighting something off and my weight had plummeted.  I was lucky again in the fact that my weight never got dangerously low where I needed to get overnight tube feedings via a g-tube.  But I know many people, as adults and children, who have gotten tube feedings in order to just maintain their weight.  It is a real struggle. 

And it is a struggle that many healthy people think is great.  Hearing “oh you are so skinny you must love it,” or “but at least you are thin,” are NOT helpful.  Twigs as legs and arms, they are not pleasant.  A barreled chest (common in CFers thanks to lung disease – http://www.mayoclinic.org/diseases-conditions/copd/expert-answers/barrel-chest/faq-20058419 ) makes us feel abnormal and weird.  Especially when you have skinny arms and legs, you feel like E.T.!!!  This country, and many others, thinks that weight issues are only a problem on the other side of the spectrum…those who are obese and overweight.  But super thin is a weight problem too.