A young man with GPA who needs assistance

[Bing505z]

If you can just take a moment and follow the link (or copy and paste) I have here to post. A young man with GPA needs assistance and if you can donate, please do so, but if you can share on Facebook or on Twitter that would be great also. Thanks so much! You can really touch someone here.


https://www.gofundme.com/jetmir-medical-fund

If you can only just share it on Facebook or Twitter...that is just as helpful as a donation! Thanks!

[annekat]

Bing, the link doesn't seem to be live, at least from my phone. I managed to copy and paste it into a Facebook post but deleted it because the link wouldn't open. Will try again later from my laptop.

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[me2]

I was able to use the link by copy and past into the browser.

[Bing505z]

https://www.gofundme.com/jetmir-medical-fund

I tthink this will work...I will edit in the original also...thanks

[annekat]

https://www.gofundme.com/jetmir-medical-fund

I tthink this will work...I will edit in the original also...thanks
It worked perfectly this time on my phone, and I posted to Facebook, where many people with vasculitis, as well as others in a position to help, will see it! Big kudos to you, Bing, for your time and effort in helping Jetmir get this set up!

[Bing505z]

Wonderful! Thanks so much. Sharing this is more important to me than donations...power in numbers! The rest will follow. These campaigns are tough, so the more people who see this the better. I have set him up with enough for medicine/treatment for 2 months, but Jetmir will need further assistance. I have reached out to organizations also, so I hope something comes from that also. Thanks again!!

[annekat]

I can't donate right now as I'm recovering from a hip fracture and my cash flow is very limited for awhile. I will forward this to the administrators of a Facebook group that may be able to help. Jetmir should be getting more donations.

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[Bing505z]

Oh no don't you worry about donating. You sharing this is wonderful! Thanks so much. Yes, I do hope Jetmir's campaign gets out more. He is going through a very difficult time. I hope you are recovering well. Thanks again! Your help is greatly appreciated!

[annekat]

I've gotten a response from a FB group that has fundraising for individuals as part of its goal. Details haven't been worked out but I'll let you know if anything transpires. The campaign could simply be shared there, if nothing else, but I will leave that up to them to decide.

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[Bing505z]

I've gotten a response from a FB group that has fundraising for individuals as part of its goal. Details haven't been worked out but I'll let you know if anything transpires. The campaign could simply be shared there, if nothing else, but I will leave that up to them to decide.

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Thanks so much! So kind!

[marta]

On behalf of the foundation I started to help autoimmune disease patients and/or autoimmune disease research (Find the Common Thread Foundation,) I have donated $500 to Jetmir.
Hopefully that starts the ball rolling.

Peace.

[annekat]

Marta, thank you. You are awesome. Wow. There is a Facebook group that also is beginning to engage in fundraising efforts for individual vasculitis patients, as well as for research and awareness. I've been wanting to make them aware of you and the things you do but had sort of lost track. So I'm glad to see you back on the forum, and I'll share with them the good news of your donation. You've made my day and I'm sure Jetmir's and Bing's (Scott's?) as well. Big hugs​!!!

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[Bing505z]

On behalf of the foundation I started to help autoimmune disease patients and/or autoimmune disease research (Find the Common Thread Foundation,) I have donated $500 to Jetmir.
Hopefully that starts the ball rolling.

Peace.

Thanks to you and the Foundation! So generous and kind. This will help him sooo much!!!

[Bing505z]

Marta, thank you. You are awesome. Wow. There is a Facebook group that also is beginning to engage in fundraising efforts for individual vasculitis patients, as well as for research and awareness. I've been wanting to make them aware of you and the things you do but had sort of lost track. So I'm glad to see you back on the forum, and I'll share with them the good news of your donation. You've made my day and I'm sure Jetmir's and Bing's (Scott's?) as well. Big hugs​!!!

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Yup, I'm Scott, and I just spoke with Jetmir on Viber, it's about 530PM evening time where he is, and he could not believe it lol. He has been very depressed, and this has lifted him up!!

[Bing505z]

On behalf of the foundation I started to help autoimmune disease patients and/or autoimmune disease research (Find the Common Thread Foundation,) I have donated $500 to Jetmir.
Hopefully that starts the ball rolling.

Peace.


https://findthecommonthread.com/tag/wegeners-granulomatosis/


That's the Foundation link, Thanks so much for reaching out!!

[marta]

Yup, I'm Scott, and I just spoke with Jetmir on Viber, it's about 530PM evening time where he is, and he could not believe it lol. He has been very depressed, and this has lifted him up!!

I'm so glad Scott. We all know that feeling of complete despair at diagnosis, and I can't even imagine what it must feel like in his position. I was born in Bulgaria, and have a friend who has WG there, it's right next door, and the language is almost completely the same, so I've sent her an email with his gofundme page in case she wants to reach out to him and even have their doctors confer. I credit this site (here) with saving my life in the early days, so I'm glad I can do something small to pay it forward. I'm glad he has someone like you in his corner too. After diagnosis, we have to dig deep to look for our lucky stars, and your friendship is definitely one of his.

[marta]

Marta, thank you. You are awesome. Wow. There is a Facebook group that also is beginning to engage in fundraising efforts for individual vasculitis patients, as well as for research and awareness. I've been wanting to make them aware of you and the things you do but had sort of lost track. So I'm glad to see you back on the forum, and I'll share with them the good news of your donation. You've made my day and I'm sure Jetmir's and Bing's (Scott's?) as well. Big hugs​!!!

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Hi Anne,
As of my last flare, I have killed, I say that with pride, all of my social media. All of it. And it feels so darn good. I'm no longer on Facebook, Twitter, Instagram, Linkedin, or anything else. It's absolutely astounding how much time gets eaten up with that, and also the weird emotional buttons all that stuff is designed to mess around with - guilt, victimhood, pride, and all the other yucky ones, and it steals your precious time to boot. People can contact me through the foundation page, or just look me up. Old school.

You're too kind. I haven't done anything. I was actually going to nix the foundation after my last flare, but have since decided that might have been a rash decision based on being ill. I'm keeping it going, but doing less physical stuff, and hopefully more keyboard activities that might reach further and have a greater impact, like my initial work on creating an app, and other crazy ideas. This year PJ Day in Jasper was almost a non event, but others in town are now jumping in and taking some initiatives, so there was still something small and we still managed to raise about $1000 without doing anything. This is why I had no problem sharing this unexpected financial boost with someone who needed it more than a bank account.

I'm glad it made your day. If only I could do it daily. ;)

Peace,
m

[jeto]

Big thanks for 500$ donation to Marta very very much

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[marta]

My pleasure. Glad I could help in some small way. Money comes and goes, health and peace of mind on the other hand is much more precious.
Best of luck. Vsichko Nai Hubavo. Zdravi i shtaslivi!!!

[jeto]

I can't believe I have friends like you, big hug from me I hope one day we will meet and drinking coffee together

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[jeto]

Who want to contact me in Viber my nr is +38971706073

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[marta]

I can't believe I have friends like you, big hug from me I hope one day we will meet and drinking coffee together

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Amen to that. From your mouth to God's (or whoever is in charge up there) ears.
Heal well my new friend. I Love that little boy by your bed.
My daughter was my 'carrot' - like a carrot in front of a donkey to make it move forward.
She made me fight for it when I felt like I had no fight left in me.

[Bing505z]

I'm so glad Scott. We all know that feeling of complete despair at diagnosis, and I can't even imagine what it must feel like in his position. I was born in Bulgaria, and have a friend who has WG there, it's right next door, and the language is almost completely the same, so I've sent her an email with his gofundme page in case she wants to reach out to him and even have their doctors confer. I credit this site (here) with saving my life in the early days, so I'm glad I can do something small to pay it forward. I'm glad he has someone like you in his corner too. After diagnosis, we have to dig deep to look for our lucky stars, and your friendship is definitely one of his.

Thanks so much!!!

[jeto]

Me too Marta I'm living just for my son

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[marta]

Me too Marta I'm living just for my son

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I totally know the feeling. I love my family, and my husband, but in my mind I felt like I would have been ok to go if it came down to that because I've spent lots of great times and have wonderful memories with them. My daughter on the other hand - she was just over 3 when I got diagnosed, didn't have any time with her momma, and I couldn't bare the thought of taking that away from her. I needed to stay alive for her. She needed to know her crazy momma. We needed to make some good memories together. So I completely understand and agree that using our kids to keep us fighting is beyond any medicine any doctor can give us.

[Alysia]

On behalf of the foundation I started to help autoimmune disease patients and/or autoimmune disease research (Find the Common Thread Foundation,) I have donated $500 to Jetmir.
Hopefully that starts the ball rolling.

Peace.

Wow, you are so amazing, marta. Such heart warming act. God bless you ❤❤❤❤

[annekat]

I just looked, and someone has donated an additional $150 to Jetmir's campaign, bringing the total so far to $670. That is great and I hope it continues. Even a $5, $10, or $20 donation is important and generous, and they all add up. I hope to donate a little but this is just not a good time. Peace and healing!

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[Bing505z]

I just looked, and someone has donated an additional $150 to Jetmir's campaign, bringing the total so far to $670. That is great and I hope it continues. Even a $5, $10, or $20 donation is important and generous, and they all add up. I hope to donate a little but this is just not a good time. Peace and healing!

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It is awesome! He has been able to see his doctor and he is now on Imuran. So you see these funds helped him greatly. Don't worry about donating, you sharing this is 100X helpful and kind. Thanks so much. Also some news, Roche does have an office in Macedonia, so if he gets to the point of needing Rituxan, I think Roche may provide the drugs. At this point his Doc has the contact info, so we will see what happens when we get to that bridge. Also, later this year I will be in Munich for some entertainment and then will take off to Tbilisi for a while and I am going to try to stop in Macedonia to visit Jetmir.

[annekat]

That is great, Scott! You have been a great friend to him and I'm sure he will be thrilled to see you.. I hope that works out.

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[jeto]

You are welcome here in any time, I really want to meet the man who is doing very much for me,
All of you are welcome

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[Bing505z]

I will try and drop in at Skopje which is near him and if I make it we will post some pictures and some cheers!

[Bing505z]

That is great, Scott! You have been a great friend to him and I'm sure he will be thrilled to see you.. I hope that works out.

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We will work it out, I will be going that way to Tbilisi so that my mother-in-law can see her new grandson

[annekat]

We will work it out, I will be going that way to Tbilisi so that my mother-in-law can see her new grandson
Awesome!!!

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[jeto]

Coughing and little blood from the mouth, what can it be?

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[annekat]

Coughing and little blood from the mouth, what can it be?

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The blood could be coming from your lungs, if you have lung involvement, or it could be present in your nose and sinuses and dripping down into your lung or trachael area, where you are coughing it up from. With active Wegs there can be blood in both places. You say it is a little, which makes me more encouraged that it isn't as serious. Wegs is always serious, but a little blood here and there is normal. A lot of blood would be more worrisome.

[jeto]

Thanks annekat

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[Bing505z]

The blood could be coming from your lungs, if you have lung involvement, or it could be present in your nose and sinuses and dripping down into your lung or trachael area, where you are coughing it up from. With active Wegs there can be blood in both places. You say it is a little, which makes me more encouraged that it isn't as serious. Wegs is always serious, but a little blood here and there is normal. A lot of blood would be more worrisome.

Keep in touch with your Doctor about this also Jetmir

[jeto]

He is out of country for the moment

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[marta]

Jeto, you know what I think, but I don't want to post it here so that I don't end up steering the conversations toward my bias, but I wonder if you have someone else at the hospital that is taking over for your doctor that you could talk to about this? You're new at this, so I don't think it would hurt to just ask the doctor if this is something they think you should be concerned about or is it nothing and you shouldn't worry about it. I don't think this is a bad question to ask your doctors.

[jeto]

Marta I was today here in hospital the blood is not coming from noise, I need to go in pulmologia but situation in Skopje is difficul because protesters atacct Parliament

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[marta]

It's not easy having WG but I can't even imagine having to deal with it with that political, backdrop.
All I can say is that I know once you come through this part of the WG journey you will be so much stronger, richer and able to handle any difficulty than most people on the planet.
Stay strong Jeto. In my early days, that's when I felt the most vulnerable. In moments when something out of the ordinary was happening to the community and everyone turns to protecting themselves, and your newly acquired deficiencies, from WG, don't matter to anyone. We had a big forest fire here right after I got sick and the air was horrible, and I was stuck inside my home, but I felt like I was a low priority on the big scale of things. If that makes sense. I know a forest fire is nothin compare to masked men attacking parliament, but the feeling of helplessness is similar I think. This too shall pass. I know that your docs won't let anything bad happen. They've sworn an oath. So stay strong, and wait it out as best as you can. Sending you good healing vibes, and all the strength you need to make it through this speed bump.

[jeto]

Today I was in hospital
In my lungs founded anything doctor said me maybe are ganuloma,
I need to do an CT scan with high resolution
Thanks for all of you.

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[annekat]

Today I was in hospital
In my lungs founded anything doctor said me maybe are ganuloma,
I need to do an CT scan with high resolution
Thanks for all of you.

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Not liking that they found something in your lungs, but liking that you are getting the care and testing that you need.

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[jeto]

The doctor appeared nervous about what he saw but to be sure he tell me to do a magnetic resonance recording but in the state hospital I have to wait long, while the private is very much

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[annekat]

Sorry to hear that... In my case a CT scan of the lungs was enough and MRI wasn't needed. Maybe you can get on a cancellation list and get it done sooner.

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[Pete]

Are you being treated for wegs? I was diagnosed by process of elimination. I started treatment for wegs (cyclophosphamide, prednisone, and bactrim) and started improving in a few days.

[jeto]

Yes I was treated with endoxan infusion, but now it's complicated situation

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[Alysia]

I hope you will soon get answers and treatment, Jeto.
My dr. in Israel consults with dr. in the UK because wg is not common here. I guess it is similar in Macedonia. If your docs will be willing to consult about your case please write me a pm and I will give you more details.
Praying for you. Please update us.

[jeto]

Thanks Alysia my doctor heave experience with wg
But here problem is with hospital services

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[Bing505z]

Are you being treated for wegs? I was diagnosed by process of elimination. I started treatment for wegs (cyclophosphamide, prednisone, and bactrim) and started improving in a few days.

Yes he is now on cyclophosphamide (Endoxan) and prednisone. I am sure what had the doc nervous was the size of the lung mass and probably the scarring and the spreading of...sure it is why they are hitting it hard.

[jeto]

This is that from rtg founded in my lungs, what can it be?
I must do CT scan 😑😞https://uploads.tapatalk-cdn.com/20170430/2c98dc46f75ef1904631dc8a550d5f32.jpghttps://uploads.tapatalk-cdn.com/20170430/02e147537ef1d118840e43b9655d3550.jpg

[Bing505z]

Jetmir you need to give those to your Doc when he gets back to town. You said the other Doc says that they are granuloma...if so I would use that number I gave you and have your Doc call for rituxan.

[jeto]

My doctor is here he said me to do CT scan to verify what they are

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[marta]

That looks similar to what I had with my flare last March. I had cavitating lesions in my lungs, and the biggest one was 3cm. Perfect little round holes. I also had the granulomas which look more stringy and as it turned out I also had blood clots. They were concerned about RTX treatment wanting to make sure that the cavitating lesion wasn't actually an infection, but I wouldn't let them put a scope down my lungs just before a RTX treatment. So we decided to take a few extra X-rays while on the heavy doses of pred to make sure that it's not getting bigger. Once we ascertained that it was indeed WG and not an infection, we went ahead with the RTX (I knew all along that it was all WG, and not an infection, but they have to be sure before they sign off on the treatment.)

The CT scan was enough in my case to be sure (with mine the CT scan was more for the pulmonary embolism, because a regular X-ray showed the holes in my lungs no problem.) I don't think you need to go get an MRI and pay a bunch of extra money. They just really need to treat the WG, and stop your suffering already.

Take care buddy, and keep bugging your docs. Gently, kindly, but without giving up. Wishing you nothing but success.

[Bing505z]

As of today, with the donations here on GoFundMe along with donations outside of this campaign, we have raised about $1000 for Jetmir. Jetmir thanks all of those who shared this link and all of those who donated. The money raised has helped him and he is no longer in financial need. So at this time he has requested that we end the campaign. These campaigns are tough but we believe it was a success, and you can still contact him here at the GPA forum to see how he is doing. Thanks again to all those who shared and donated!!! I wish you well.....Cheers!

[Alysia]

jeto needs our help again. Thank you Bing505z for opening a new gofundme. Please share and if you can please donate. Thanks and God bless you.

https://www.gofundme.com/btzqkg-granulomatosis-with-polyangiitis

[drz]

Coughing and little blood from the mouth, what can it be?

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Do you have fresh blood in your sinus rinses or any nosebleeds? Blood from the lungs is usually thicker and heavier than from the sinuses where it is often is mixed in with mucous. Blood from lungs is the more serious issue.

[annekat]

Do you have fresh blood in your sinus rinses or any nosebleeds? Blood from the lungs is usually thicker and heavier than from the sinuses where it is often is mixed in with mucous. Blood from lungs is the more serious issue.That is good info, drz..
I don't have much going on right now but in the past when there was blood I wasn't always sure if it originated in the nose or lungs. It's interesting to know there's a difference in the appearance. My lung involvement was luckily fairly brief, and there wasn't a lot of blood, because I got dxed and treated right when it started to escalate. But I had already had nasal and sinus involvement for a couple of years at time of dx. Not really a lot of blood then, either, but plenty of mucus and crusting causing some bleeding here and there. My ENT really should have figured it out before it went to my lungs and my nose saddled. Have told this story many times before...just ruminating again.

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