And it hit me harder than I thought. I think I'm still a little stunned and a lot scared. Honestly, no matter the number of years I've been preparing or the research I've done can prepare you for someone telling you that you're in kidney failure. It's odd how much hearing those words has rattled me. I kinda feel like I'm in a bit of a fog right now.
So far, I've spoken to my transplant coordinator at the U of M and set those wheels in motion to get me active on the list. She's also spoken to the transplant nephrologists and I have an appointment with him in a couple of weeks. My insurance company has gotten back in the fold again and re-opened my case. Joacim is scheduled for his workup the 2nd week of August for a paired exchange.
I have soooo many questions.......
- When do I get a social worker?
- Is there anything that they'll do to help me feel better or am I just resigned to getting worse and worse and worse?
- How does this whole paired exchange work?
- I feel a noticeable decrease in my energy/stamina....is this real or imagined because I know my numbers? It feels pretty damn real.......
- Will my toes fall off because they're SO FREAKING COLD ALL THE TIME (okay, that's not a REAL question, but still.....fuh-reeezing)
- Will I have to go on dialysis or will I be lucky enough to bypass it?
- Are they going to do a nephrectomy?
- How much time off of work will I need?
- How do I go about getting time off of work?
- How do I continue to wake up every day and putting in the effort when all I want to do is lie down and take a nap all the time?
- Will I still be able to take vacations? I mean, once you're on the list it can really happen at any time (technically). When will the surgeon/nephrologists say it's time?
Not all of these questions have answers, these aren't all of my questions and some answers will reveal themselves as this process moves along. One thing I've already noticed is that I'm going to get VERY tired of hearing, "Oh, don't worry about that. You've got PLENTY of time." Okay, first of all...fuck "you/whoever" for saying that. No one knows how long I have...no one. And to try to "poo-poo" away my fears is condescending and irresponsible, and it honestly just pisses me off beyond words.
Thank dog for social media. Honestly, I may bitch, complain, and generally be irritated by it a lot of the time, but the amount of knowledge I gain from my kidney groups is unparalleled. There is no question too personal, too annoying, too "out there" and I get enough of a variety of answers to take back to doctors to talk to them about. And my FSGS/pregnancy group on Facebook is such an amazing group of supportive women....I'm just amazed at their generosity and the effort they put into helping others in the group, even though they're also dealing with their own issues. I heart them all.
The one thing I DO wish is that I had ASN (American Society of Nephrologists) membership. This would allow me to do much deeper research, but that's a pricy membership that I'm not quite willing to shuck out. I can read a lot of abstracts, but usually not full articles.
Ugh.....sooooo many thoughts. So many questions. So many emotions.
Ugh Jenn, I can't believe you're at this point. I thought it would be longer yet. Good for you to be listening to your own body.
ReplyDeleteps. I haven't forgotten. I plan to discuss this weekend
Hi I have fsgs as well. I was diagnosed with it in 2011 at 28 yrs old. I am now 31, and am struggling to get pregnant for the first time. I'd like to join the fsgs/pregnancy group on fb, but can't find it. My name is Jenny Nelson Pearson from Houston, TX. Anyway you can help me find the group?
ReplyDeleteYou are amazing. My daughter was diagnosed 2 years ago with fsgs
ReplyDelete1. You will be assigned a social worker when you go in for your appointment for testing and all. You should meet the surgeon, financial, social worker, etc. basically the whole transplant team
ReplyDelete2. As much as you're dreading it, you WILL feel better on dialysis.
3. I only know the basics of the paired exchange so I don't think I can help there.
4. Could be a real symptom of your ESRD or it could be depression.
5. Before I started dialysis I was freezing all the time. Like wearing a coat outside on a 90 degree summer day.
6. My first transplant I got pre-emptively. I was on the list just two weeks but I was under 18. I guess it depends on how quickly your kidneys fully fail and where you live. I began dialysis at 16% but there are others who wait til like 6%. The wait time in CA and NY is much longer than in the south or other parts of the country.
7. They only remove the kidneys if they're cancerous, or infected maybe.
8. After transplant I was told it would be 3 months recovery and away from work. My first I was back to school and regular life after 1 month so I guess it depends on your center and your type of work, but I doubt it'll be less than 1 month.
9. You should qualify for short term disability which will cover you for up to 6 months. It should retain your job for that time but I'm unsure about payments. Obama just passed a bill about paid sick leave that went into effect already. I don't know details because I'm not working, sorry.
10. Just remember your motivations and that you will feel better one day.
11. If they tell you approximately 2-3 years or something then you have a bit of a time frame. As that time nears, you can ask the social worker or coordinator if you're close to "the top". Although it's not an actual "list" with "a top" lol they can't give you an exact number or time, maybe they can give you some kind of idea. If you tell them you are planning a vacation, they could probably tell you if it's a good idea at that time or not. If anything just don't go too far away lol I think they like you to be within 4-6 hours.
I know this is a very scary and emotional time but you will honestly feel better on dialysis. I've been following you for a couple of years now and have seen your legs so swollen your boots wouldn't fit. And I don't go through that anymore, I'm able to start doing things and participating in life again. I'm not so tired all the time anymore.
Transplant is the greatest thing we can have now but I'm even scared of it and I've been thru it already. You should try to get listed in each of the regions nearest to you. (You can list at one in each state)
Best of luck and stay strong!! Don't let what anyone says anger you or upset you. No one knows what we actually go through so they can't understand.
I am a scientist working on the basic pathophysiology of FSGS in Houston. We are trying to discover some more effective treatments. I have the students in my lab check out your blog just so they have some idea as to what they are working on. Good luck to you and all the others who post here.
ReplyDelete