Wow, I haven't blogged since May. That's terrible. But here I am! Needless to say we've been busy. Alot has changed, most of if for the better, and we are still moving forward with the hope of having a baby this year. It's not a sure thing yet, but we're getting closer.
My health has been pretty good over the last year. Had some crazy post-surgical hormonal imbalances late in the summer, which the docs said was not uncommon. I ended up having extremely heavy dysfunctional uterine bleeding (I know, TMI for the men folks but oh well!), and had to get hospitalized to be transfused with 4 units of blood. I had been feeling awful for a couple months, and it actualyl felt good knowing there was a real reason I felt like walking death- my hemoglobin was 6 (normal for my height & age is 12=14, yikes). I then got put on low-dosage birth control to get my body regulated & stop the bleeding. I went off the BC in late December, and I have had no problems.
In August Rick's brother David & his wife Mary had their first baby! Edward Matthew joined our family and he is so amazing. We love all our nieces and nephews so much! They fill our hearts with so much happiness, but at the same time it can be bittersweet, as we long so deeply for our own family. But our time will come; hopefully sooner than later.
I had all my one-year post transplant testing in late December, and everything looks great. The only snag is that I am spilling protein in my urine, which I will probably always do, but they have to keep a close eye on the levels because it can possibly be a very early indicator of recurrence of my kidney diseasse FSGS. Or, it could just mean I have leaky glomuleri in my kidneys. My biopsy showed NO traces of recurrence, so they are pretty sure it's not FSGS causing the protein spillage, but they still will keep a close eye on it.
After some debating with a craptastic doctor (NOT the one we normally see, and whom we have requested to not see again due to his horrible, snide demeanor and apparently inability to read all my records before diagnosing me...!), we finally were able to switch my meds over to the pregnancy-safe meds two weeks ago. They are now monitoring me w/ labs every two weeks, and are watching my protein very closely. One of the BP meds I used to take was an ACE inhibitor, which is not a pregnancy-safe drug. The ACE lowers BP extremely well, but it also is the only drug shown to have an effect in slowing the damage FSGS causes. So, if my FSGS is in fact trying to come back, taking me off the ACE will help them to know for sure. If my protein levels shoot up when I stop taking the ACE, then we will have to curb the baby plans for now and address the possibility of having to focus on keeping my FSGS from destroying the new kidney.
So, in a nutshell that's where we're at. I'm trying not to dwell on the fact that this is it- we're down to the wire, and the next couple of months might decide the path for the rest of our lives. Just taking things day to day for now and trying to keep myself distracted.
Which we are doing very well- we're FINALLY reaching the end of our kitchen remodel. The kitchen has been usable since the end of the summer, but there is no floor, and no pain on the walls. The new appliances are arriving Saturday, and the paint & floor should be done within the next week. I can't wait!!!! Pictures will definately follow.
Since we don't have a baby of our own in our lives, we decided it was OK for us to enjoy the last couple years of our financial success. We took a couple nice vacations, and my hubby spoiled me a bit. He surprised me with some stunning pieces of jewelry on Christmas, AND for Valentine's day! Rick has been golfing alot, and got a few new clubs.
I've kind of developed an addiction to Clinique skincare & cosmetics, much to the grumbling of my husband! I figure I'd like to enjoy something of that nature now, because it will be one of the first things to go when we have a baby.
We most certainly would rather have a family though, and would give up all the vacations and nice things in an instant to be able to fill that void in our lives.
So, for now we are just enjoying life, and enjoying each other. It's such a huge blessing to feel so much better, to be able to walk across a store without feeling like I'm going to pass out; to be able to run and be active and feel alive. God is good in ALL things, and I am very blessed to still be alive! I'm going to try and be more regular with my blogging. I enjoy it, and I've missed it.
2 comments:
So glad to see your post after a really long time! Even more glad to know that you are doing good. My prayers are for you. By the way, I am 28 years old female and I am with FSGS for the past 6 years. I totally share your feelings to have a baby but I am not yet there for a transplant. So I don't know what we are going to do. Keep your posts coming as they are a HUGE inspiration for me and makes my day! I have read your posts so many times and everytime I read them, I feel hope. keep it coming girl and many thanks! :)
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