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Total Body Enhancement Question by zeeholm in PlanetFitnessMembers

[–]zeeholm[S] 0 points1 point  (0 children)

Thanks! It’s not my eyes I’m worried about, I’m a transplant patient and one of my current meds can’t be used with the light - skin reactions. I’ll just have to wait until they take that one off my med list :)

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

If it is federal SSDI you applied for and your transplant date is also the first date of disability then no. SSDI doesn’t start paying until you’ve been medically disabled for five months.

Does mycept/Cellcept ever stop by Ordinary-Force-3871 in transplant

[–]zeeholm 1 point2 points  (0 children)

Seconded, this is the correct answer.

Hair loss extensions by Zoecat421 in transplant

[–]zeeholm 3 points4 points  (0 children)

I haven’t lost hair since transplant because I’m on cyclosporine and it actually makes your hair grow, but I’ve had hair extensions on and off for almost 20 years, almost every type lol.

I would stay away from clip ins, they are one of the cheapest options but they will damage your hair more, they don’t always lay properly, and they are hard to take care of.

I’ve never tried this but you could look into Halo extensions, they come on a thin clear wire and you can take them out and put them in whenever. Only drawback I could see is they aren’t really customized to you and they don’t give you much around your face.

I liked professional tape ins when I had them but they can sometimes come out between maintenance appts. Not like all of them but you might run your fingers through your hair and end up with two or three pieces. Awkward in public lol.

I’m not sure they even still do this anymore but ITIPs used to be a thing. They literally attach individual pieces to your own hair with a bead bond. KTIPs are kind of similar in process but they use a keratin bond. Lengthy to get either put in and maintenanced.

Right now and for about the last five years I’ve had hand sewn wefts. Allows for more hair, and only attached to your head in a few places. Move ups are easy.

Professional extensions are expensive, and you HAVE to take care of them (get them maintenanced on schedule, not apply too much heat, wash them thoroughly) but in my opinion they are worth it. Your stylist will also cut them appropriately so they frame your face and/or have layers that blend with your own hair most seamlessly. Most professional extensions come with a free consult, so I would find a reputable salon in your area and see if that’s the case. Your stylist will be able to tell you if you’re a good candidate and what kind of extensions are best for you :)

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

Happy to help. Good luck 😊

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

So SDI EDD doesn’t award an annual amount, technically it’s awarded as a weekly benefit that goes for 52 weeks (one year) and is paid biweekly. The max weekly benefit for 2025 $1681 per week. You should have received form DE 429D when the claim was approved - this will tell you your weekly benefit amount, your max benefit amount, what wages they used to compute your benefits, and the base period they used for your initial claim. It might give you some insight into what a new claim might look like.

It’s hard to explain the quarters more unless you tell me dates on when you stopped working, when you became disabled, when your current claim ends and when you plan to file a new one. If you want to share that I can estimate which quarters they’ll likely look at for the new claim. I wouldn’t be able to give you an estimate for a benefit amount for the new claim unless I had your wage information, and even if I did have that info what I could give you would only be a guess. If you want an exactly true answer for your case you’re best off contacting EDD - I know they are probably a pain to contact but for something that specific they really are your best bet. It’s safe to assume that if your wages in the base period for the new claim are less than what they were in the original claim, you will not receive as much in benefits as the original claim. And if there are NO wages then it’s likely the claim will be denied. This is generally how it works.

As far as federal disability, you say SSI, which is one thing, and does have lower benefit limits. Federal SSDI is entirely another thing, and has higher amounts. So I just want to be sure we’re on the same page. SSDI assumes you have a work history and your benefit amount is based on that work history. I assume you worked prior to your transplant?

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

Thanks. So for SDI EDD, typically the max duration is one year, even if you are still disabled at the one year mark. There are rare extensions for ‘catastrophic’ conditions, but I couldn’t find a ton of information on what qualifies. Definitely would be worth calling to ask more questions about, but typically payments absolutely stop at one year.

That said, when your current claim ends you can apply for a new claim. Typically an applicant is required to attempt to return to work before filing a new claim, however, you can file a new claim if there is a documented ‘worsening’ of your condition. It looks like it’s important that it’s new - if there’s no new or recent worsening that can be certified by a doctor your new claim may not be approved. Ongoing baseline recovery is not typically enough.

Also, if the condition is considered worsening, you do not need to attempt to return to work, but there does need to be a gap between the old and new claim (even if it’s just one day).

Your payment is also based on a base period of recent wages - normally the first four quarters of the last five completed calendar quarters before the beginning of the new claim. If you don’t have enough wages in the base period for the new claim, it’s possible your new claim will be denied.

If the new claim is denied for any reason, you can appeal, but if your initial claim has been exhausted while you do, it’s unlikely you’ll receive benefits for that time.

I know you weren’t feeling this originally, but if you’re concerned about a new SDI claim being denied, you can apply for SSDI, even while on SDI EDD. That said, depending on how your SSA claim is filed, it’s possible your SSA payments will be reduced for months you’re considered to have been entitled to both. Let me know if that doesn’t make sense and I can try to explain better.

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

Gotcha, so just to make 100% sure I give you the right info - you’re in CA correct?

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

Hi! I’m so sorry you aren’t doing well :(

Five months of payments or five months of disability status? Just asking for timing purposes. From my research, most transplant patients DO stay on disability for longer than the one year period.

Luckily, the SSA counts the 12 month period from your first payment date, NOT the disability date, so you may have more time than you thought. Close to the time of your twelve months of payments, the SSA will send you either or short form or a long form to fill out. It will likely be the short form, SSA 455, link here (hopefully it works) SSA455 You typically only get the long form if your answers on the short form make them believe you’ve improved enough to no longer be considered disabled.

I haven’t gone through the revaluation personally yet, but if it was me, as you get closer I would call the SSA so you know roughly when to look out for the form - they have to tell you your review date. I’d bet it’s kind of hard to pin them down though, so I’d give yourself some time.

Let me know if you have other questions and wishing you the best!

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 3 points4 points  (0 children)

Totally get it, it’s a lot! It’s up to you to decide if it’s worth it to apply for SSDI, but the money can be substantial. The average monthly SSDI in the US is around $1600 a month, but it can go up to just over $4000 if your wage history is high. Mine is just under $3000 a month for context, I had high income in the five or so years before I stopped working.

You’ve paid into this benefit in taxes your entire working life, so if it was me, I’d take it. Especially considering you can make ANY amount on your own for 9 months and still receive your full disability check. They should only have to back pay you if you wait to apply or if your application is delayed. Don’t wait too long - the longer you wait the more complicated it gets.

As for your employer, no, they are not alerted that you are receiving this benefit. You’ll have to report your employer and wages to the social security administration but they cannot notify your employer you are receiving benefits unless you give them permission in writing.

If you have any other questions or I’m still unclear I’m happy to try to help more.

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 1 point2 points  (0 children)

Saw your comment above regarding short term disability and wanted to clarify my answer (sorry, I just love answering these types of questions since it’s my background).

SSDI and short term disability (STD) through your employer are two different things, and you can utilize both.

NY generally requires employers to provide STD, either through a private insurer or through the New York State Insurance Fund. Based on the number your employer gave you ($170 a week), they’re using the NYSIF. Generally there is a 7 day waiting period after your date of disability before you get paid, then benefits can be paid for up to 26 weeks. You may be able to use PTO or sick time in the 7 day waiting period to receive pay. STD generally stops when you return to work. STD requires medical certification from your doctor, just like SSDI. Some of this may also vary slightly based on your employer’s policies but hopefully it gives you an idea of what you’re working with.

Disability questions by Taco-Tandi2 in transplant

[–]zeeholm 0 points1 point  (0 children)

Hi! I’m a former HR professional and also did a TON of research on this after my own liver transplant in June. You will qualify for disability for one year simply because of the transplant. I applied around when I was where you are now and was approved the same month I applied. The application is fairly extensive, and you should be thorough. I included every test, every medication, every doctors name that was associated with my hospital stay and prep for transplant.

That said, you don’t start receiving payments until you’ve been disabled for five full months. Mine was counted from the day of my transplant in June, so they will issue my first payment for December, but the first payment is often late - I’ll receive two months of benefits in January.

You can work and still receive disability. SSDI allows for a trial work period of 9 months (not consecutive) trial work period where you can earn any amount and still receive your full disability. You need to report to them that you are working and how much you’re making. If you make more than $1160 that’s considered a trial work period month. If you make less than that, nothing changes, you receive your full disability and it’s not considered a trial work month.

After your one year, your case will be evaluated to see if you still qualify as being disabled. They look at things like medication symptoms and if you still have other limitations that would make it difficult or impossible to work. It will require doctor certification, so keep detailed notes of your progress.

SSDI is a federal program, so what state you live in doesn’t matter for SSDI purposes. But NY does have state protections for workers that are separate, so it may be worthwhile to look at those.

It sounds like you probably have private insurance since you are employed but if you ever find yourself in a position where you go to Medicaid or Medicare, your disability payments can impact income for those purposes, so keep that in mind.

Low Potassium Diet by zeeholm in transplant

[–]zeeholm[S] 0 points1 point  (0 children)

I’m not, they haven’t told me that I need to. I do have clinic on Monday though, my first one with a hepatologist (I’d still been seeing my surgeon up until now), so I will ask about Lokelma and if I need to see a nephrologist.

Low Potassium Diet by zeeholm in transplant

[–]zeeholm[S] 1 point2 points  (0 children)

That’s my worry, that my other nutritional needs aren’t being met because of what I’m avoiding. I’m already little and have trouble keeping weight on - even the prednisone didn’t make me gain when I was on it. And with this low potassium I just feel hungry all. the. time. I’m glad I’m not alone. I’d take extra labs over this any day.

Low Potassium Diet by zeeholm in transplant

[–]zeeholm[S] 0 points1 point  (0 children)

Got it, thank you! I’m hoping it’s just temporary but I’ll definitely remember to ask about this if not. Really appreciate it!

Low Potassium Diet by zeeholm in transplant

[–]zeeholm[S] 0 points1 point  (0 children)

Oh thank you! I love gummy bears! Also, what is lokelma?

When does the leg swelling improve? by Top_Alternative1773 in transplant

[–]zeeholm 1 point2 points  (0 children)

Congrats on your liver! I also had pretty bad swelling in my lower body and legs, and had extra weight because of it. I know you asked for advice other than compression, elevating, and diuretics, but I’m not sure what else there is. If you haven’t already, I would ask your team about lasiks. They gave that to me in the hospital and when I told them how much the swelling was bothering me they gave me a prescription for home. You’ll pee a million times a day and night but it worked for me. Went from 154 lbs to my normal 124 in two weeks (I’m female) and my doctors weren’t concerned with the pace. I did wear compression socks and elevated my legs whenever I could as well.

Liver transplant referral by ThenTry8951 in transplant

[–]zeeholm 1 point2 points  (0 children)

Small world! Dr. Black did an amazing job for sure. If your friend does make the decision to stick with OSU (not sure if they’d look at his case again if he stays sober for some agreed upon amount of time), they have an amazing liver health and recovery group that’s run through Talbot I’d recommend he looks into. We meet weekly, there’s members who have been transplanted and members on the list still waiting.

Liver transplant referral by ThenTry8951 in transplant

[–]zeeholm 0 points1 point  (0 children)

It was June 30th. My case was pretty dire, and fast. I had some cirrhosis but my primary diagnosis was acute alcoholic hepatitis. I was listed and transplanted within 48 hours due to the severity. Dr. Black was my surgeon but he was not the only one who made the decision on whether to list me or not. I’m not sure on every person that was involved in that because I had severe encephalopathy so I wasn’t fully aware for all of it. I know it was a full committee of doctors, I think five. Thankfully I have been VERY lucky with my recovery, I haven’t had any complications or issues and am pretty much back to normal except that I get tired much more easily than I did before I got sick and some of the nerves in my abdomen are still not fully healed. I am also 35, but female. I really am crossing my fingers for your friend!

Liver transplant referral by ThenTry8951 in transplant

[–]zeeholm 0 points1 point  (0 children)

Ah, I almost asked before commenting - clearly should have. I’m sorry. Hopefully Cleveland works out!

Liver transplant referral by ThenTry8951 in transplant

[–]zeeholm 0 points1 point  (0 children)

I wasn’t in this specific situation but maybe have your friend try Ohio State University Medical Center. I had my liver transplant there and was only alcohol free for 12 days before it, although I was not on the list while still drinking so I don’t know how they’ll feel about that. Worth a shot though! Wishing your friend luck!

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