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!
Adventures of K squared
I will use this blog to explore my journey to a healthier me.
"It is not the critic who counts, not the one who points out how the strong man stumbled or how the doer of deeds might have done them better. The credit belongs to the man who is actually in the arena, whose face is marred with sweat and dust and blood; who strives valiantly; who errs and comes short again and again; who knows the great enthusiasms, the great devotions, and spends himself in a worthy cause; who, if he wins, knows the triumph of high achievement; and who, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who know neither victory nor defeat."
Roosevelt
Roosevelt
Sunday, April 22, 2012
Saturday, April 14, 2012
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!
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!
Friday, April 13, 2012
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.
Wednesday, April 11, 2012
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,
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
Tuesday, April 10, 2012
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.
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.
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.
- What is my current kidney function?- need labs to determine
- What medications do I need to start if any? would like to start a blood pressure and possibly cholesterol medication
- What birth control should I go back on? he did not have a preference
- Can I have another baby? yes
- 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
- 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.
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.
Monday, April 9, 2012
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:
- What is my current kidney function?
- What medications do I need to start if any?
- What birth control should I go back on?
- Can I have another baby?
- If I can have another baby how soon should I try?
- I have been having pain, stiffness and locking in both of my feet. Is this something I should be concerned about?
Thursday, April 5, 2012
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.
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.
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