I went to see my rheumatologist today. As per their normal protocol, I had to see the lupus clinic nurse first. She took my blood pressure, asked me a bunch of questions, including questions about my diet. She seemed surprised to learn that I’m not currently being followed by a dietician (no additional appointments needed, thanks). I’m not sure that there is anything substancial that a dietician can tell me now that I haven’t already learned over the last 14 years. I got slightly lectured on diet, cholesterol, etc. It’s always a bit of a pain to be told things you already know…but I guess everyone needs to do their job.

I went on to see the fellow first. She asked me which medications I’m on. Le sigh…the nurse I just spoke to asked me all of that. I told her that the nurse asked me all of that and I gave her all the information. The fellow flipped the page and saw the written notes.

After a few more questions and reviewing my blood results from last week, she explained to me that my c3 c4 values were a bit low *gulp*. They were not totally low, but not within range. An additional blood test was done today to re-check it. I pray that I’m not having a flare. I’ve been flare free for some time and I’d like to keep it that way. Cross your fingers for me.

In the meantime, Dr. Fortin came in soon after and suggested I take percocet for any joint pain since I cannot take naproxen. I should have asked if there is anything more permanent that I can take, as doping myself all the time isn’t necessarily the best option. In the meantime, I’m content to take anything that will help with the pain.

If you’ve been following my blog for a while, you’ll have read stories about all my hick ups that occur when it comes to transplant. Let’s revisit/summarize.

1-The first time, we were good and ready to do the transplant…and then I had a lupus flare. Lupus flares push transplants back. This particular flare consisted of a growth on my brain, which resulted in me not being able to walk, move my arms properly, or talk at a normal rate and without drooling.

2-The next time, I was fine, but then my Dad was busy with work for a while, so that put the transplant on hold.

3-After that, both Dad and I were willing and waiting to do the transplant, but Dad was found to be ineligible due to his borderline blood pressure.

4- I was put on the transplant list. My blood type is B-, and I have a lot of antibodies in my blood, so I was forcasted to essentially expect to be on the list for at least 10 years.

5- Here I am after just having finished all of the testing…then I have to get a blood transfusion (which, at the very least, will require me to re-do the cross match with my brother). I have bleeding in my stomach, and my c3 and c4 are not within range.

I spend good amounts of time being “fine”. Then, when the word “transplant” comes up…something always seems to happen. What’s up with that? Am I destined to be on dialysis forever? Does God have another plan for me, or perhaps He simply doesn’t want me to have this surgery? I’m a strong believer in the fact that if something is meant to happen, it will happen, and if things are not supposed to happen, they won’t…but geez..I really want a kidney right about now. I really want to travel and do spur of the moment things without having to think of dialysis. *sigh*


3 comments on “Is it possible that some things just weren’t meant to be?

  1. I know one thing about this disease above all things, God has the road map and we are just meant to follow it on faith. Perhaps your work is to show strength above all things. You sound like a strong young lady and one things this disease can do, is make us feel weak in one fell swoop. Take care and be well to yourself. Hugs. Tazzy


  2. I'm so sorry about all you setbacks. I pray that the low C3 and C4 are just mix ups.

    I have B- blood as well and I heard that is was really common in the Asian population and in general pretty rare. Strange…


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