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