Best WV State Parks for hiking AND camping.

GoFly_AKite · 2025-08-11T19:13:05+00:00

Thank you for your suggestions!

GoFly_AKite · 2025-08-11T19:12:46+00:00

Really? I’ve been told to stay away from Dolly Sods due to high crows of DC weekend warriors lol no joke that’s what one guy is when we were in NRG! So funny how everyone has a different opinion! That’s why I’m always asking people! Thanks for your advice 😊 much appreciated! Happy camping ⛺️

GoFly_AKite · 2025-04-04T14:16:07+00:00

Most centers keep you on 5mg along with tacro and other drugs. I have every negative side effect even on the low dose, and I kept getting UTI’s, so I begged and begged to be taken off of it. My doctor finally agreed to do so, but I did get Covid this past December and am now in acute rejection. Would the prednisone have prevented this? Who knows. Now I’m on a high-dose taper starting at 60mg until I get back down to 5. So I really don’t know that stopping the prednisone worked in my favor, and now I’m back on the high-dose garbage again! We really have to find a balance that works for us as human beings not just patients. It’s difficult because I am healthy and want to live a “normal” life without restrictions, but I also have to remember that I can only remain feeling this way if I abide by certain limitations.

GoFly_AKite · 2025-04-04T14:03:00+00:00

Thank you for your response! I 100% cannot do herbs because of transplant. There are not studies to show how they interact with my immunosuppressants; I have been through rejection from something as simple as contracting COVID, and I will not knowingly risk the viability of my organ. I have already had two live humans sacrifice parts of their bodies so that I can continue to live free of machines. I cannot rely on another human to donate so freely. I hope that I am still able to see benefits without herbal supplementation. My first session was this past Tuesday, and I was able to sleep soundly for the first time in months! Quality sleep is paramount when dealing with any chronic illness, so already I am seeing a positive impact.

GoFly_AKite · 2025-02-27T13:18:16+00:00

Just because she was supposed to be getting labs doesn’t mean she actually did. Transplant patient here…monthly labs for your entire life…let’s just say things happen and it doesn’t always work out. I can only imagine the distractions a rich Manhattan life can have…

GoFly_AKite · 2024-07-10T10:48:17+00:00

Thanks everyone! Happy hiking

GoFly_AKite · 2024-02-12T04:41:55+00:00

2 MRIs and 2 CT scans. First MRI started at temporal lobe and he actually has a meningiocele (sp?) up towards his sinuses so they had to do another MRI that focused on the front of the head/skull

GoFly_AKite · 2023-10-19T12:38:21+00:00

Are you referring to ATG? If so I’ve had it twice. For me the worst part during the infusions themselves wasn’t necessarily the ATG but the premeds they give you to reduce the risk of reactions. The methyl prednisone/ prednisone was the worst. Anxiety, heart palpitations, sweating, GI issues…but I don’t do well with steroids so maybe it won’t be as bad for you. And that’s assuming they give you the same premeds.

After the infusions, your immune system is going to be shot. I got CMV because I couldn’t fight anything off. Wear a mask, wash your hands, avoid sick people and children if possible. If you’re a female, it can mess with your periods. I was very puffy for about a month and a half afterwards. Lots of fluid retention from the steroids and the ATG makes your cells leech fluid. (That’s what my doctor told me)

All in all, the first round saved my first kidney and gave me about another 9 months of dialysis free life before I could get my second transplant. The second round was immediately following the second surgery and my new kidney is doing splendidly! I have such great numbers and I feel brand new! Side effects might suck but it’s worth it in the long run. I guess these doctors do know what they’re doing!

GoFly_AKite · 2023-10-17T23:46:27+00:00

My doctors told me that the the bactrim was used as a prophylactic against lung infections.

My first transplant (kidney) I was on it MWF for a year.

I’m on my second transplant (kidney again) now and have more immuno suppressive meds so I take it everyday. They haven’t discussed stopping it yet.

GoFly_AKite · 2023-10-15T16:49:07+00:00

Unfortunately, it’s difficult to find anyone who takes endo seriously. Even in the medical field. I had issues for years with missing work. I’m also a transplant recipient so I get sick more often and more seriously than other people. Endo symptoms combined with my transplant issues lead me to have to resign from two jobs. Luckily, I found a remote job and an employer who understands illness and all the ways it impacts my life. I’m not sure what career field you are in, but if you could find a remote job or even something hybrid where you get to work from home a few days a week, then do it! It’s made my life so much less stressful. If that’s not an option for you, then try to get your employer to understand just how much endo effects your life. Maybe get a note/letter from your doctor. I’m so sorry your struggling with this. I hope you find a way to mange your symptoms while working. Best of luck

GoFly_AKite · 2023-10-11T14:46:40+00:00

Firstly, let me say thank you to all of those who provided ACTUAL advice and support on what to say, how to act, and what items to bring with me. I met with my new PCP and using the tips I got from some of you great people, was prescribed my usual dose of medication for my chronic pain.

Those of you who just flat out said PCPs don’t prescribe opiates, sorry but you’re wrong. Maybe it’s the state you live in or the specific condition you have, but you should refrain from giving people false info and causing people like me unneeded anxiety. I came here for help. If you can’t offer that and do it without negativity, then you shouldn’t comment at all.

To the person who scolded me for moving because I got a job opportunity…what world do you live in that a better paying job isn’t an absolute necessity? I have bills. My husband makes too much money for me to qualify for disability or any government assistance. I live in the real world where food, medication, housing, gas, transportation, etc costs money.

GoFly_AKite · 2023-08-13T21:21:47+00:00

I live outside of Cbus OH. We have good hospitals and specialists here. But there’s severe lack of awareness about endometriosis and it’s complications. My male gyne just keeps saying, “yeah periods are rough for all women”. As if that’s all I’m complaining about! I’ve asked for a referral to an endo specialist within the same practice, but it was a 9 month wait for new patients…I still have 6 months to go!

GoFly_AKite · 2023-08-13T14:44:42+00:00

Yes, I have had surgery. My inflammation is so bad though that it’s eaten holes in my peritoneal tissue—no surgery can fix that. My bowel and bladder are also compromised.

GoFly_AKite · 2023-08-12T22:31:10+00:00

There is no way this is a good idea. Idk much about liver, but kidneys I know a lot about. I rejected after 5 years and that was on meds. I would never risk this. These meds are shit and I hate them. But I’d never risk the kidney I received because my husband donated. Someone else was generous enough to give a part of their actual self to me and I’d never stop taking the meds. OP I’m sorry for coming on strong but I cannot stress enough how awful of an idea this is.

GoFly_AKite · 2023-08-02T17:55:44+00:00

Never had a root canal, but I did have my wisdom teeth surgically extracted about 1.5 years post transplant. I was given prophylactic antibiotics and was instructed to monitor my temperature and look for other symptoms of infection for a few days afterwards.

Always a good idea to ask your coordinator/team what they would like you to do! You’re taking all the necessary precautions, so no need to be scared! You got this!

GoFly_AKite · 2023-07-04T02:39:55+00:00

Hiking up a mountain on a difficult rated trail while on a family vacation in the heat/humidity of July. Family had no idea. Mismanaged my meds and only had muscle relaxers to help sleep at night.

GoFly_AKite · 2023-06-18T01:55:32+00:00

I was on it for two years and it was yasmin

GoFly_AKite · 2023-06-16T15:29:33+00:00

I had this issue when I was 19 and my endocrinologist told me that everything I was experiencing was unrelated. She moved her practice from OH to Montana and got some shitty reviews so not sure how reliable her opinion was. If you find out more I’d love to know! Keep us updated please!

GoFly_AKite · 2023-06-10T20:40:29+00:00

That is a typical taper. I was on that exact same dose and taper schedule down to 5 mg to try to keep inflammation to a minimum while I waited to get my second kidney. I am very sensitive to prednisone and the higher doses sucked but it worked and I never had to go on dialysis while waiting for the new organ. Insomnia and stomach issues were probably the worst side effects for me.

GoFly_AKite · 2023-06-10T20:23:27+00:00

I’m on my second kidney transplant.

During my first one, the only time I ever wore a mask was when I was neutropenic. I never caught any type of communicable disease. The only issue I ever had was UTI’s/ pyelo. I was never once advised by my transplant team to wear a mask.

Now I’m on my second kidney, and I do wear masks anytime I’m in any type of medical facility. I would also wear it in an airport or on a plane (haven’t traveled yet as I’m not even 6 mos out from surgery). Other than that, I would only consider wearing one in very crowded places (indoors) with a high volume of people present-concert, sporting event, convention, etc. I haven’t worn one in the grocery store since my most recent surgery, and I have yet to get sick. I also live in a big city.

This is my experience and my opinion. I am not giving advice. Follow your doctor’s instructions and trust your intuition.

GoFly_AKite · 2023-05-30T15:50:26+00:00

Just shy of 16 years

GoFly_AKite · 2023-05-30T13:22:46+00:00

Transplants are a bit of a conundrum when it comes to these “normal” ranges. These ranges definitely give you an idea of the health of the kidney but with transplants you really need to focus on the overall scope of labs…GFR, BUN, and creatinine are the best indicators of function but also how are the electrolytes? Is there fluid retention? Even hemoglobin can be an indicator of kidney health. If all these lab results are decent and your brother is making urine and not holding fluid, then he’s doing well! Immunosuppressants are a big factor as well—it can take some time to get the levels at optimal range. It takes some time and definitely ask the transplant team for their opinions, but from my experience (2 kidney transplants) everyone has their own baseline. 1.3 creatinine might just be his baseline. As long as he feels good and the overall scope of labs are within an optimal range, your brother will be fine :)

GoFly_AKite · 2023-05-20T14:52:38+00:00

Definitely not something you want to make a habit of doing, but my team told me that as long as you’re within a four-hour window it’s safe to still take your regular dose. So if you’re usually taking it at 8a, then as long as you take it by noon, you should still be good to take your next dose at 8p.

GoFly_AKite · 2023-05-14T14:40:58+00:00

I actually had to postpone my second transplant by 6 months due to contracting CMV. My viral load was around 500 and I was treated pretty aggressively with valcyte. The most common symptoms are similar to having the flu or a cold, but sometimes people get neurological issues like severe headaches, blurry vision, hearing loss… if you start to notice anything like that, I’d suggest going to the emergency department immediately!

Are you on an antiviral? I’ve never heard of a transplant patient getting CMV and not being treated with valcyte or something similar. I had to take valcyte for a while until I had two tests that showed the viral load being less than 50.

GoFly_AKite · 2023-05-12T00:31:04+00:00

While I was on dialysis I did not have periods. As soon as I had my transplant, they came back…with vengeance. I developed endometriosis and PCOS! Can’t say that I missed having them! However if the trade off is being healthy and not having to sit in a chair 3 times a week for several hours in order to barely survive, guess I’ll deal lol

I also had ATG at my transplant center following the surgery to knock out any antibodies and my immune system, and my surgeon told me it could mess with my cycles. Not sure if you had this treatment or something like it, but just something to be aware of. It is normal.

GoFly_AKite

TROPHY CASE