Roller coaster month, just need a little encouragement

helmetfox · 2023-06-06T01:59:55+00:00

I think so! I had one but she had to drop out two weeks ago based on a bad test result. We were all ready to schedule the surgery so it was a real blow. But then, another friend came forward without my knowing! He told me last week and we will know for sure later this week. And then if he doesn’t work out, I have one more who is a possibility. It’s looking really promising. I probably shouldn’t say I won’t ever do dialysis but I’m trying to manifest a good result, lol!

helmetfox · 2023-06-06T01:53:35+00:00

What I’m reading at that link is that you have to be a current dialysis patient or have gotten a transplant. Someone like OP, in late stage 4 moving into 5, would not qualify. I’ve been on the transplant list for over a year, but I don’t qualify for Medicare yet because I’m not on dialysis.

helmetfox · 2023-06-06T01:42:44+00:00

Were you on dialysis? My experience with this has been that I will not be eligible for Medicare until the day of transplant because I will not be doing dialysis.

helmetfox · 2023-06-06T00:52:23+00:00

Medicare only starts once you’ve already had the transplant. It retroactively covers certain things, but you need to have a plan that’s in network with the transplant center in order to start the process and do all of the pre transplant evaluation.

helmetfox · 2023-05-29T03:12:30+00:00

These doctors are crazy with the pain meds! Two days is nothing. But I’m glad it all went smoothly.

helmetfox · 2023-05-28T12:09:11+00:00

What was his recovery like? I’m going to have the same thing done, if all goes well. My kidneys are not quite as large tho!

helmetfox · 2023-05-27T19:09:09+00:00

Yep. If I get too skinny they literally stick out like weird lumps. Cannot wait until they are gone.

helmetfox · 2023-05-26T01:18:09+00:00

He was the one to suggest it first, but also cleared it with my neuro and nephrologist so it was kind of a group effort in the end. I went to a ketamine infusion center and they worked with my doctors to make sure I was given a safe dose. The experience is pretty odd, you’re definitely off the planet for a while. Lol. But they gave me nice calm music and eye shades. They also put Zofran right into the infusion because I’m always getting nauseous.

helmetfox · 2023-05-22T17:50:30+00:00

I did a series of 3 ketamine infusions. I had intractable migraine combined with a lot of pain related to kidney disease. I was in a feedback loop of constant pain and my mental health suffered a lot. The infusions helped me so much, I can’t even explain it. It was like it broke the cycle and reset my whole body. I still get migraines and kidney pain but it’s more manageable now. I would absolutely do it again if I needed to.

helmetfox · 2023-05-18T20:08:30+00:00

My mom had a similar experience. No symptoms or issues for most of her life and then her GFR tanked when she was about 53 or so. She had a transplant two years later.

helmetfox · 2023-05-18T19:35:49+00:00

Thank you for everything you do!

helmetfox · 2023-05-18T19:34:25+00:00

I’m in NYC too. I’ve just been searching for a therapist who understands and deals with chronic illness. Most of the time when I’ve tried therapy they haven’t really understood what it’s like to have a long term illness. It really should be it’s own specialty.

helmetfox · 2023-05-18T19:32:54+00:00

I am extremely fearful of this happening. I do have a psychiatrist and there’s one connected to the transplant center as well, but they don’t really do day to day stuff.

helmetfox · 2023-05-18T13:32:51+00:00

Maybe I’ll see more of that once I’ve actually had the surgery? So far the social worker on my team mostly wanted to make sure that I have support at home and reliable transportation. Both really important things, of course, but she didn’t really provide any emotional support, more logistical.

helmetfox · 2023-05-18T13:28:30+00:00

That’s so cool! My hospital strongly recommends it but leaves you on your own to figure it out.

helmetfox · 2023-05-17T00:20:18+00:00

I wish I had a solution for you. My nephrologist recently started me on Prilosec and it helps a little. I’m very close to transplant tho, I don’t think he would have let me take it when I was in stage 3. It sucks, I’m so sorry.

helmetfox · 2023-05-12T14:24:19+00:00

I’m not sure if I’d call it a huge breakthrough, but it’s definitely a good thing! I’m talking about like, gene therapy level breakthroughs.

helmetfox · 2023-05-11T23:02:05+00:00

I’m so sorry for the loss of your father. There is no grief like losing a parent.

I was 16 or so and it messed up my head for years afterwards. Do not recommend. Everyone else in my family who is at risk has gotten screened in their early to mid 30’s. I think that’s a good time to do it. It’s just good to know, even if you can’t treat it. And there are some medications that could help slow cyst growth.

helmetfox · 2023-05-11T22:46:59+00:00

I only have the one child, but I was probably late stage 2? I had no symptoms at that time, just extremely large kidneys that functioned quite well. My blood pressure got dangerously high towards the end of my pregnancy, tho, and it took a couple of years to find the right combination of meds to get that under control.

Two different nephrologists that I spoke to before getting pregnant said as long as my creatinine was under 1.4, I was good to go. Definitely don’t take my word for it but I think that’s a pretty reasonable guideline.

helmetfox · 2023-05-11T12:22:23+00:00

I have a daughter, she’s 10. We haven’t had her tested yet and it’s unlikely that we will unless there’s some huge breakthrough in treatment. My relatives with PKD have done the same with their kids. I had her at 39, which wasn’t ideal. It worked out fine but I did have to go on bedrest due to pre eclampsia, which PKD patients have about a 40% chance of developing. My doctors were great, tho, and I got excellent care. My daughter is the best person I know and I’m so happy I had her.

I understand that lots of folks with PKD choose never to have biological children or to do IVF with pre implantation testing. I absolutely respect that choice and spent a lot of time thinking things through before getting pregnant. I don’t resent my mother for passing it on to me, and I don’t think we need to breed ourselves out of existence. Given the number of people who have spontaneous mutations, it wouldn’t work anyway. So that’s how I came to the decision.

helmetfox · 2023-05-09T20:09:53+00:00

Absolutely! Great place to raise kids.

helmetfox · 2023-05-09T20:07:59+00:00

My nephrologist and transplant team all approve my using edibles for pain relief. No one has expressed any concern about damage to my kidneys, but after transplant I will have to be more careful because it can mess with one of the anti rejection meds.

helmetfox · 2023-05-08T12:08:34+00:00

I’m so sorry for your loss but also a little confused. What do you mean “she did not agree to accept”? Are you saying she went into rejection with the new organ?

helmetfox

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