I was diagnosed with Focal Segmental Glomerulosclerosis in February of 2012. Received a kidney transplant in June of 2014, found out it came back one month later. This blog is an account of my journal and a resource for information.
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I totally empathize with this guy. The weight gain I've gone thru is much different than the first time I was overweight. The first time I was over weight, I completely chose that type of life style. I still had confidence. I wasn't "ashamed". This time around is the complete opposite. Maybe it's because the challenge is much steeper. This guy speaks to me...check it out.
Hey everyone, just a quick update on what's going on. So my last Apheresis appointment, I am down from three to two to now one, I got good news and some not so good news.
The good news my protein is not >500, I don't have the accurate number but I assume it's less than 1000. This is a vast improvement from being >2,500 a month ago. The protein levels in the urine were my doctor's main concern.
However, my creatnine is up to 3.3 and GFR is 24. The creatnine measures the output of the kidney, basically how hard it's working. The higher the number, the harder it's working. That's not good. 1.5 is normal.
My GFR is at 24, this rates the filtration function. In January when I found out my disease required me to get a transplant I was at 19.
No I will not be getting a new kidney or needed one but I will have a biopsy on Wednesday. The purpose is to take a sample and determine if I am showing signs of rejection. Lately, my blood pressure has been really high. High blood pressure can lead to higher creatnine. I am hoping that is more of the case.
If you are curious about the biopsy, it's really simple. I will actually be awake. They just numb the area, use an ultrasound and take a humongous needle with a clipper to go in and snip off a piece of my kidney. I was awake and watched the whole thing and asked annoying questions, so no worries there.
Please keep me in your thoughts and prayers. My (and my family's) immediate future heavily relies on these results. Thanks for your support!
***I apologize for the lack of posts and updates. I’m so busy with my treatment, I prefer not to talk or discuss it because it entails so much and is always evolving. This is as in depth as I can get, so this will catch you up.***
I’m approaching 3 months since I had my surgery, 2 months since I had my central line installed/Plasma Apheresis and began my Acthar injections.
The good news, at my worst I was spilling over 3,000 grams of protein (a normal person spills 150) I’m down to around 1800-2200. It fluctuates but at least we’re seeing some movement. My creatinine was as high as 2.8, last check it was 2.2 and GFR as low as 28 is now 32 (I was between 11-19 when I was critically in need of a transplant).
My weekly medical requirements are at GUH three times a week. Three of those days are for Aphesis treatment and one day of labs and one day of Iron Infusion. I also have a self-injection dose of Acthar twice a week. The anti-rejection medicine, blood pressure, cholesterol, indigestion, anti-biotic and steroids are still on my daily rotation.
My outlook is generally good. I was blessed and fortunate to find a very part time job in my field that I can work from home and keep me fresh in my field.
Physically, though I am light years ahead of where I was in May, I am still not all there. I fatigue as the day progresses and in most cases I need to rest to avoid anything serious. The last two months I have experienced slight but constant tremors in my hand. Initially noticed by my wife, it’s not a huge hurdle but my handwriting is worse, typing is a little more difficult.
It is a slight tremor and affects smaller tasks rather than larger ones. So I can drive with no issue but when I scoop formula to make my daughter milk I shake and tend to spill the powder.
I mentioned this to my doctor and she suspects it’s a slight side effect of one of my anti-rejection medicines. It’s not neurological.
So far my iron infusion hasn’t manifested any side affects. Though lately my Apheresis has contributed to some discomfort. The treatment in itself separates my blood and replaces the plasma. In the process I’m robbed of calcium among other things. So simply stretching, especially at night and in the morning can sometimes lead to some pain. The worst is an occasional bout of Charlie horse. So in that regard, Tums and milk have been good to me.
This about covers it from my end.
I’d like to send appreciation to my in-laws, Gerry and Lianne for choosing to donate (via the ice bucket challenge)to a cause that supports and researches my disease. Also to Gerry’s sister Christine and her husband Ron and my best friend from childhood Myles Harris as well. I did not ask for this, nor did I think of it but there are thousands of people in my situation and many more who don’t know they have it. I’m sure it is very much appreciated. My disease is so rare, I’m the second person on the East Coast to receive the treatment I’m getting. So if you donated to Nephcure or any kidney research-centric organization - thank you.
Thanks for reading. Look for another update after the 15th. I’ll continue posting other things until then.
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A little insight to what goes in and is removed from my body. Top picture is the albumin(artificial plasma) that is fused into me and the bottom is the plasma that is removed. Usually takes two hours and somewhere in that cloudy beige mist is the protein that has been causing my FSGS.
www.allieshope.com Last year I had the privilege to lead a team at the Nephcure Walk in Columbia,MD. Though there will not be an event like that I will be participating, I highly encourage you to check out, support and attend Allie's Hope in Reston,VA. Save the date!! The 2014 NephCure silent auction will be held Saturday, October 11 2:00 - 5:00PM. You won't want to miss the Video Scavenger Hunt for all ages! There will be beer, wine and baked goods for sale. It will be a good opportunity to meet people and understand the disease. More importantly, it will help us raise fund and awareness to fight FSGS. If you cannot attend, there are sponsorship opportunities available, so there are ways to help. The link: www.allieshope.com Thanks and God Bless!!
For years people have tried to diagnose my disease. But, in the beginning, how did I know I had something wrong? Here's a great article. I was 9 for 10 in symptoms. If you think you may have even some of these symptoms, please get checked out.
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This is interesting. I wonder how this will affect the millions on the transplant list, should this come to fruition. But if you had a choice...real or artificial?
Does this hurt? No. Initially when I began my treatment, I was getting exchanged plasma. This plasma was supplied via blood donations. Unfortunately, when this was first attempted on July 12, I had an "exorcist" type of reaction. Now, for the last three weeks, I've been on albumin and it has had very little to no affect on me. So this is what it looks like. I suppose it can get rather boring but I can watch TV and they feed me so all is well.
Does this hurt? No. Initially when I began my treatment, I was getting exchanged plasma. This plasma was supplied via blood donations. Unfortunately, when this was first attempted on July 12, I had an "exorcist" type of reaction. Now, for the last three weeks, I've been on albumin and it has had very little to no affect on me. So this is what it looks like. I suppose it can get rather boring but I can watch TV and they feed me so all is well.
Andrew S. Bomback, MD, MPH, Assistant Professor of Clinical Medicine, Columbia University, New York discusses his study on the treatment of resistant nephrot...
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Today, the House Energy and Commerce Health Subcommittee held a hearing to examine legislation to improve the Medicare Part B Drug Program. Included in the discussion was the Comprehensive Immunos...
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