Remnants of edema....

So during my pregnancy I had a lot of edema in my face, legs and knees.  My knees got to the point where I actually got stretch marks.  I have included a picture of the stretch marks on my knees.  Trying to figure out how to get rid of the stretch marks now.  I also have them on my stomach and back but I was prepared for that.  I was not prepared for the ones on my legs!  Open to suggestions.  Gotta love the side effects of a kidney disease! 

Managed to squeeze....

into 2 pairs of pre-maternity jeans!  I felt pretty accomplished haha.  I still have a long ways to go but the edema and swelling is all gone.  I am now working on toning and taming the fat as I call it!  It really is a mindset/lifestyle change.  I have completely changed my diet and will continue to work with the personal trainer and go to the gym.  In the mean time that is why God gave us spanxs!

Had a mini meltdown last night as I was exhausted with Bridget and stressed about the acid reflux, crying food allergies, eczema and colic.  However as anyone with FSGS would know crying = puffy eyes the next morning.   They were no too terrible but I was very happy to get a break today and have some much needed relax and recharge time! 

FIRST personal training session

Okay so last night I had my first personal training session.  We started off with the measurements and I thought I was going to be bummed out from the start but I stepped on the scale and I am down 3 more pounds since Tuesday's doctor appointment!  My trainer Kim is very knowledgeable and we decided to push me but not to the point of extreme exhaustion or getting sick.  I did 4 types of exercises 1 yoga related thing I don't remember the name of, then Russian twists, followed by lunges with weight pushing up to an arm exercise and then planks.  Planks are not fun at all and I am paying for them today!  I am proud of myself I made it to the gym 3 times this week!  It is tough but I am sticking to the diet as well but small steps will yield positive results. 

Harvard Genetic study

Has anyone else participated in a genetic study for FSGS?  At the end of my doctor appointment on Tuesday my Doctor mentioned contacting Dr. Martin Pollak who is conducting a study through Harvard.  I have copied and inserted the letter below as I am not sure any of you would be interested in participating in this study.  I have to admit I am slightly nervous as I am really hoping that Bridget does not have or get this terrible disease.  Has anyone else had the child or children screened or monitored to see if they contract this?

Dear Potential Research Participant,

We are currently running a research project on FSGS (focal segmental glomerular sclerosis) and other causes of nephrotic syndrome, kidney failure, and proteinuria at the Beth Israel Deaconess Medical Center/Harvard Institutes of Medicine in Boston, Massachusetts. The doctor in charge of this study is Dr. Martin Pollak.

The goal of this study is to learn more about the cause of kidney disease in individuals and in families by studying genetics. Genes (also known as DNA) are the instructions for your body to carry out its functions. We think that if we can learn more about why and how people are predisposed to kidney disease (or protected from it), then the information we learn may aid in the discovery of better treatments in the future. So far, we have identified changes in three genes, ACTN4, INF2, and APOL1 that account for kidney disease in patients and families. We are now trying to find other FSGS genes and understand exactly how defects in already known FSGS genes lead to kidney disease.

Who is eligible to participate?

You do not have to live in Boston to participate. Participants of all ages are welcome to participate (including children). Particularly we are looking for:

• 2 or more individuals in a family with FSGS -or-
• Individuals or families in which only 1 person has FSGS -or-
• Individuals or families with nephrotic syndrome, kidney failure, or unexplained proteinuria

What do I have to do?

Participation involves a saliva sample, a urine sample (in some cases), and filling out a consent form and questionnaire. To participate, call or email Andrea Uscinski Knob, MS with your address and personal/family history. We will mail you a package with instructions and everything you need to participate. You do not need to make a separate doctor’s appointment and can participate from home. There is no cost to participate in the study and we will include prepaid return envelopes for returning the samples. In most cases, participation is a one time thing. However, we may ask for a repeat sample to confirm a finding or if there is not enough saliva in the saliva kit.

If you are interested in participating or have any questions in regards to the study, please contact Andrea Uscinski Knob, MS genetic counselor at 617-667-0467 or by email at aknob@bidmc.harvard.edu or Dr. Martin Pollak, MD, principal investigator, at 617-667-0496.

Thank you,

Andrea Uscinski Knob, MS

Martin Pollak, MD

Update from Nephrologist visit

So I had my long anticipated Nephrologist visit today.  Overall it was a very positive visit.  He said I look good and physical examination yielded nothing that would cause him to be overly concerned.  I am going to contact Harvard to participate in a new genetic study.  I will keep you updated as to how this goes as well.

Here are the stats:
Weight 178 (down 2 pounds)
Blood pressure 129 over 90 not terrible but not great
Protein 2 plus
I will update the creatine, bun, cholesterol and others once the lab results are back in.

1. What is my current kidney function?- need labs to determine
2. What medications do I need to start if any? would like to start a blood pressure and possibly cholesterol medication
3. What birth control should I go back on? he did not have a preference
4. Can I have another baby? yes
5. If I can have another baby how soon should I try? he advised to wait 1 year work on healing from this pregnancy and get the protein back under control
6. I have been having pain, stiffness and locking in both of my feet.  Is this something I should be concerned about? This is normal for someone with protein leakage and he will check the labs to see if there is anything to be concerned about.

I will follow up for my yearly physical with my general practitioner either end of April or beginning of May.  My next appointment with the obgyn will be in June.

As for the nutritionist and the personal trainer I have my first appointment for a session this Thursday and will be doing this once a week going forward.  The other 2 days at the gym are on me!  The nutritionist provided me a food diary as she would like to see my current eating habits and lab results before we design a plan that is right for me.

I am feeling okay after all of this.  I will keep you posted as to how the labs come back and my experience with the personal trainer. 

Getting nervous for the Nephrologist tomorrow.

Tomorrow is my appointment with the Nephrologist at Columbia Presbyterian in NYC for my follow up since having the baby.  I am nervous to see how my kidney function is and also what medications I need to go back on.  I also dread all the blood work... I am not even sure what questions to ask.  I was thinking the following:

1. What is my current kidney function?
2. What medications do I need to start if any?
3. What birth control should I go back on?
4. Can I have another baby?
5. If I can have another baby how soon should I try?
6. I have been having pain, stiffness and locking in both of my feet.  Is this something I should be concerned about?

I am open to additional questions if anyone has anyone has one.

Remembering how much dieting sucks.....

So I had my fun for sure in terms of eating terrible when I was pregnant.  This almost lead to gestational diabetes.   Now I am reigning myself back in and I remember that this needs to be a lifestyle change and not just a quick fix diet.  I have to get a handle on portion control and what I am eating to ensure I am better to my body and my kidney's.  Next step is a custom meal plan with the nutritionist!  I really need to keep myself away from the comfort foods and comfort eating, especially when I am stressed. 

Today I am feeling soar from Tuesday's work out with the trainer and  I have really bad cramps in my lower back.  My kidney's way of telling me they are not happy!  Thanks for letting me know!  I am definitely nervous for next week's Nephrologist appointment.  

It has been a while....BUT I AM BACK!

I realized I have been neglecting my bogging duties.  I have given this blog some thoughts and have decided to redirect this and be brutally honest about what it is like being a mom with FSGS.  That's right since I last posted when I was pregnant I have since had a beautiful baby girl named Bridget.  I went hog wild and eat whatever I wanted and stopped exercising during pregnancy this was a HUGE mistake.  Thus the reason I am back to posting again to keep me motivated and honest with myself.  I have made a commitment to a lifestyle change.  I plan to use this blog to post about how I am doing: my ups and downs, my eating and exercising goals and how my kidney disease is progressing all while being a new mom! 

I am currently pumping although we just found out my daughter is allergic to cow's milk.  She has a hard time breaking down the protein and coupled with acid reflux we find that Soy milk formula is better for her.  I will be weaning myself of of this over the next few weeks.

I also had my first consult with a personal trainer and dietitian yesterday.  She has lupus and is very familiar with my dietary needs for my kidney.  Since I had an emergency c-section due to my high blood pressure and that my labor was not progressing I have abdominal separation so we will be working on strength training with a combination of physical therapy.  I need to loose 45 pounds of body fat.  This does not mean I will be 45 pounds lighter it just means I will be replacing fat pounds with muscle pounds. 

Next week (4/10/12) I have an appointment with my Nephrologist to see what medications if any I have to go back on for my FSGS.  While I was pregnant it seems my FSGS went into remission.  I am hoping figures crossed this continues. 

Post pregnancy Stats:
Weight 180
Height 5'5
Body fat 37.3% considered extremely high

Pregnancy labs: (will update after 4/10/12)
Protein leakage trace 1++
Bun 11
Creatinine .82
Cholesterol 176
Glucose 87

Medications and vitamins:
Prenatal vitamins
1 capsule 550 mg ginger root
2 capsules 2000 mg cranberry fruit concentrate with 100 mg vitamin C and 3 IU's vitamin E
1 Beta Carotene vitamin A 10,000 IU
3 Acidophilus plus Probiotic with 100 mg of citrus pectin

What to do with Fall Fashion?

I am normally super excited for all the Fall fashion magazines to arrive on my door step. I love pouring through the pages in search of this year's latest trends and styles.  I then start my careful planning for what to purchase and what portion of my budget goes to what including my favorite....SHOES!  This year is very different.  I am starting to feel like a bog blog.  Please don't misunderstand me I am very excited and happy for this baby to come but I am  not 100% comfortable in my own skin these days.  The mirror can be a very scare place.  I have tried to embrace maternity clothes but I have to say I find them less then stellar.  My mom tells me not to complain as they had even less options.  I am just having a hard time understanding the costs and why people want to wear loud obnoxious prints or these t-shirts with really silly sayings.  So my options not the extensive.  What is a pregnant chick who wants to stay chic and fashionable to do.....?

Pregnancy acne

Who knew acne was going to make a huge debut during my pregnancy.!  Well it has arrived and really makes for a shining beacon of confidence!   I started doing some reading on this and well it seems I have run into another wall because the topical face wash proactive that I am using is not recommended while pregnant.  I will need to bring this one up with the doctor tomorrow since I have been using it throughout the last 16 weeks.  I do have to say when you are pregnant it is like living in a bubble.  If anyone has any safe pregnant skin care solutions for acne I would love to hear them.  I found this line below shown below.

why are pregnant women obsessed with plaid?

I have noticed a growing trend in my quest to find fashion amongst flats and maternity clothes as I embrace my second trimester.  I am shocked to find how many loud prints including obnoxious plaid are considered viable pregnancy options.  I am sorry Heidi Klum I know your are a maternity designer and valued judge on Project Runway but why must you encourage the use of bad plaid?  This just does not make sense to me.  If you have an explanation for the following bad plaid disasters that are consider maternity fashion please indulge me.

why does pregnancy = no fashion?

Okay so I have decided to redirect the direction of this blog and begin to talk about my pregnancy experience.

Few things to state up front:

1. I am 13 weeks pregnant
2. I lost 25 pounds prior to pregnancy
3. I have completely lost the will to work out
4. Since learning I am pregnant we have gutted our entire kitchen as part of a home improvement project
5. I have FSGS this is a kidney disease I have had since I am 6 years old.  This make my pregnancy high risk.
6. I am a shoe addict!  I have had to tamper back my heel height.
7. Prior to pregnancy I considered myself a fashionable person - these days leggings and sweat pants are so appealing!

I think that covers the need to knows.  So my first topic is why does pregnancy automatically mean there is no such thing as style?  And will someone please tell me who thought it was a good idea to name a maternity line Moody Mamas.  Yes we are freakin moody but why are you going to remind of us that?  What once use to be an exercise in retail therapy is now just another frustration I would prefer not to take part in. 

Here are the store I have found so far that are not ridiculously expensive and still have some style in maternity clothes:

• Old Navy
• Loft 
• Gap
• Target - however they are the ones with the line titled Moody Mamas

workout rut

So I was doing so great with the diet and working out and then came along stress and deadlines for work.  I fell off the workout ban wagon and it has been two weeks and I have been traveling a lot.  Looking to find the motivation to get back to working out.  I am also not so please that I gained back 5 of the 21 pounds I lost.  Need to motivate myself!

Stalemate

Can be defined as a noun- stalemate - a situation in which no progress can be made or no advancement is possible;"reached an impasse on the negotiations".

This is exactly where I currently am in terms of a few thing and not just my diet, exercise and weight loss.  The question is now how to motivate and push through?  I am looking for a change; possibly warmer weather, maybe less stress or even the ability to fit into a different size then I currently am.  The question then becomes what is realistic?  

I am thinking it is better to tackle each stalemate separately.  Then as I accomplish a few smaller tasks I can find motivation to work on the bigger topics/tasks that are currently stuck in a stalemate.  Now on to find a few small things to get motivated on....

Commonality

Today I am not going to write about nutrition, weight or exercise.  Today I am going to write about seeking out people with similar experiences.  I am a strong believer in everything happens for a reason.  Also that there is a reason we meet certain people and go through similar experiences.  Recently I have found a few examples of this in my life.

Since I was first diagnosed with FSGS at 7 years old I struggled to feel normal.  I struggled to find those I could relate to until recently.  It started with one and then I found a group of people with FSGS or family members with FSGS and now I have a whole support group that I can turn to for help, advice, ideas, etc.
I have also found since my dad passed away 2 years ago I find more people around me who have also suffered losses in their lives.  Again unfortunate grounds to have in common but it helps with a sense of normalcy to say they know what I am going through.  They really understand me.

I believe that when character is tested the brightest shine through and humanity bonds together.  People find commonality and sense of belonging when there are others just like them.  Not masses just a few individuals just like them, to feel normal.  Some how I belong.  Some how I am not alone.  Some how it will all be okay.

You are what you eat

Could not be a more true statement.  Since starting the diet and exercise program 1 month and 1 day ago I have lost 15 pounds!  very exciting!  I have realized it does not happen over night and requires constant attention.  I have made lifestyle changes to accomplish this. Tomorrow will prove to be an obstacle as it is Superbowl Sunday and I know there will be all those fattening and high calorie food around.  I feel like I need to design a strategy just to make it through the game! I hope to loose another 10 pounds in the month ahead!  We will see where this leads.  I will remain optimistic.  I need to to get a new play list for my ipod starting to get bored with the options.

Who knew being blue was good for you!

Blue is a appetite suppressant.  I have been reading that to help curb your appetite to:

1. Change the light bulb in you fridge to blue aka the "diet light"
2. Dye your food blue by adding food coloring
3. serve your meals on blue plates 
4. Have blue tablecloth and napkins

This can all be found in the Color Matters website.  If you look to nature there are not many naturally blue foods.  I never would have though to look to colors for mood inspiration and as an appetite suppressant.

Time to make some changes!

It is all in the box. The lunch Box.

Okay so I only made it to the gym twice so far this week.  I know that is not the greatest but work threw a few curve balls that derailed the exercise plan.  I was pretty good so far this week with the diet.  I am still keeping the food journal separately.  I cheated once this week and had a grilled cheese with tomatoes and a side of waffle seasoned fries with sour cream.  Very delicious not so nutritious!

I am not searching for a lunch box/tote to take food with me as I go.  I have gotten really into this meal planning business.  I also even just subscribed to Shape magazine.  Go me! I am open to lunch box suggestion.  Not exactly sure what I am looking for.  There is a lot of options.  You have insulated, you have green options, fashionable options, technical/gadget focused options, cartoon options.  Way too many choice for me to make a decision so far!  I remember my lunch boxes from childhood.  I turned my my little pony lunch box into a switch alarm for my 5th grade innovation/inventions fair.  My dad helped me build it and I believe I got second place.  I made the town newspaper.  Wow never realized that was such an important lunch box!  Wonder what talent this next lunch box will have?

Things I do not understand about the gym....

Now that I am getting into this regular diet and exercise thing, I have started to notice more around me when I am at the gym.  Here is a recap of some of my observations:

1. Why do some women think it is necessary to wear make-up while working out? by the time you are done working out you look like a crayon left out on the picnic table in the sun.  Not attractive ladies!
2. Perfume, cologne, musk, body spray etc. the more you are the worse it is!
3. Sequins, jewels, glitter, bedazzled, sparkles etc. not welcomed at the gym.  Too distracting and especially not necessary on your ass.
4. Wording around your ass.  Why?  Are you getting paid to advertise something to me as I am on the elliptical behind you?
5. Looking anything like Ke$ha while working out.  If you are too tired to get dressed, put on shoes and practice some general hygene you have more serious issues that I highly doubt a treadmill can fix!  I am just saying.
6. People who concern themselves with your workout.  Don't be all up in what I am doing and trying to read my work out plan and calories burned.  That is between myself and the machine.  Not public knowledge! 
7. I get feeling the burn and an intense workout but groaning, weird noises and the the machine actually moving for the position it was originally in is generally not a good sign.  Maybe time to slow it down and real it back in.
8. 'Chatty Cathy's" I don't need to know about everyone on your blocks business.  You should go out for coffee or lunch with the person to discuss so and so kids or how Ethel cheated in last months lawn decorating contest.
9. Attention this is not your home, living room own personal space!  You can't through your crap every where including but not limited to the majority of the machines around you.
10. Talking very loud on your cell phone on personal calls.  Again I did not come to the gym to listen to your version of day time drama.  Save it for you momma.  No seriously the rest of us are not interested in what Jake, Mike and Susie did over the weekend.

There are some of my observations to date.  As I experience more I will make sure to share.  They never said the gym would be full of these type of distractions.  Here I thought I had to worry about getting myself to the gym and focused on my work out.  Now I know it is yet another social jungle.

Neglecting the blog but not the diet

So I have been bad at posting on the blog but I have been keeping my food journal and also stayed with the diet and exercise.  I am not doing sit-ups with the "perfect sit-up" I ordered off tv.  I find this funny because I have never purchased anything from tv, ever!  I went to my nephrologist aka kidney doctor today and seems the diet and exercise are also helping out with the FSGS.  I need to remember to try and keep as low salt of a diet as I possibly can.  I have actually trained my taste buds to really not enjoy salt at all.  When I was a kid I would play the salt is poison game and that seems to really work for me.  I have found Mrs. Dash makes a variety of spices that are really great to cook with.  Plenty of taste, no salt and a happy me!