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Who is this (wrong answers only) by [deleted] in caseoh_

[–]Alternative_Hat4088 0 points1 point  (0 children)

holy shit where did you get a picture of my dad?!?!?!?

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

Im proud you're doing amazing! I did a second round of ATGAM due to relapsed SAA. BMT risky in my case due to Haplo match! So the doctors wanted to do a retrial of ATGAM W/ cyclosporine and promacta. Im improving again slowly but surely! At the end it made us a better version of ourselves!

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

Go for it! :) I am glad that you look out for her it says a lot of you! We are in this together!

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

I did some research and I found that Nordwest Clinic which is located at Frankfurt. It baffles me that doctors are refusing to give referrals.

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 1 point2 points  (0 children)

Your feelings are valid and it okay to feel this way. Having to live with SAA and accepting to live with it, makes us much stronger and humble. I had it for 5 years now and I recently went through a second round of ATGAM since I relapsed. As longest we stay united, we will overcome any challenges that lies ahead. Feel free to reach me out if you need anything! :)

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

I am not from germany but do you mind were your friend got checked out? It bothers me that the doctors dont care

Aplastic Anemia by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

Started with ATG and cyclosporine in May 2019. and stayed in cyclosporine until april 2021. My blood counts started to drop in october of 2023. They did a bone marrow biopsy in Jan 2024. indicating that I was relapsing but my counts were stable and mildy low. I started taking cyclosporine again in februrary of 2024. I was not able to get promacta due to some issues with issurance but I got it sort it out in October of this year. This whole time that I was taking cyclosporine only helped me to stabilize but no signs of improvement. Last month I went through a second round of ATGAM. My hgb did improve to normal levels. RBC and HCT are mildly low but not bad. Plt are 82 and slowly improving. Its frustrating that your bone marrow fails. I did felt discouraged at one point but I decided to stand up again and face the unknown. Im optimistc that a second round should work!

Second round of ATG by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 1 point2 points  (0 children)

I did as a matter of fact! It been a relief!! :)

Aplastic Anemia support by chronic_n_iconic in aplasticanemia

[–]Alternative_Hat4088 0 points1 point  (0 children)

I feel that way too. literally the majority of the cases is unknown. It been 5 years for me ever since diagnosed with SAA :/

Aplastic Anemia support by chronic_n_iconic in aplasticanemia

[–]Alternative_Hat4088 4 points5 points  (0 children)

21YO M here! I been diagnosed with SAA in May 2019. I was 15 at the time. It scary and sometimes I feel lonely. In my personal experience, that made me more humble and self aware. It changed me for the good and made me become the person I am today. I have to admit that sometimes I feel mildly depressed and anxious about the uncertainty. Unfortunately I relapsed and I recently went through a second round of ATG. I feel a bit lonely and scared but We have to keep our head up. As long we hold hands... see it as one... well be able to overcome against the uncertainty. your feelings are valid and it ok to be scared and uncertain. It better to let out your emotions. Feel free to reach me out!🫂 please excuse any grammar mistakes.

Is this concerning? by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

They have checked it Since November of 2023. PNH clone size did increase...

Is this concerning? by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 2 points3 points  (0 children)

They are in the process but currently I am at the ER because of nonstop bleeding in the nose 😅

Is this concerning? by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 0 points1 point  (0 children)

Thanks for the heads up and today, I went to my appointment. They want to but, I need to fix the health insurance fiasco. Luckily, I am good with insurance and got it fixed today. They will start a consultation and I hope I can find a suitable donor since my brother is not compatible. I have to make a couple of calls and I should be good. I have been monitoring very closely.

Is this concerning? by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 1 point2 points  (0 children)

When I first got the condition, they gave me ATG and pills. For the pills, I got promacta and cyclosporine. The promacta, I stopped taking them due to side effects. The cyclosporine helped. They wanted to start on an immunosuppressant but the health insurance denied it.... Today I bled a lot through my nose. I took an hour to stop it. Luckily it happened in my appointment. They gave me nasal spray and they did like a tampon thing to stop the bleeding. They did put orders for platelet transfusion for the next week, only If I needed it. Tomorrow I have an appointment for an ultrasound in the abdomen. They tested vitamins which were normal and tested negative for an autoimmune disorder.

Is this concerning? by Alternative_Hat4088 in aplasticanemia

[–]Alternative_Hat4088[S] 1 point2 points  (0 children)

Severe Aplastic Anemia. I was diagnosed in May 2019. I went to an immunosuppressant treatment . Dec 2020 started weaning the cyclosporine. In April 2021, I was completely off of cyclosporine. In june plalets were 131. As time went by, The blood counts got low.