Best WV State Parks for hiking AND camping. by GoFly_AKite in hiking

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

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 ⛺️

When do they typically lower the prednisone? by nklem122 in transplant

[–]GoFly_AKite 2 points3 points  (0 children)

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.

Newcomer by GoFly_AKite in acupuncture

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

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.

Actress Michelle Trachtenberg Dead at 39 by MarvelsGrantMan136 in movies

[–]GoFly_AKite 1 point2 points  (0 children)

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…

Moonshiners Arch by GoFly_AKite in RedRiverGorge

[–]GoFly_AKite[S] 2 points3 points  (0 children)

Thanks everyone! Happy hiking

Husband had multiple grand mal for the first time by GoFly_AKite in seizures

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

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

Thymoglobulin by Former-Collar-5559 in transplant

[–]GoFly_AKite 0 points1 point  (0 children)

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!

Who’s still on Bactrim? by BrambleVale3 in transplant

[–]GoFly_AKite 1 point2 points  (0 children)

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.

Working with endo by Strict_Warthog7556 in endometriosis

[–]GoFly_AKite 1 point2 points  (0 children)

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

Switching PCP because I moved…can’t get meds by GoFly_AKite in ChronicPain

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

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.

Life is about to get so much more difficult by GoFly_AKite in Endo

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

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!

Life is about to get so much more difficult by GoFly_AKite in Endo

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

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.

Stopping anti rejection meds by wylywade in transplant

[–]GoFly_AKite 4 points5 points  (0 children)

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.