Devasting news (angiomyolipoma)

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Devasting news (angiomyolipoma)

Postby BuzyBee » Thu Apr 28, 2016 11:20 am

Hi, Today I have re-joined this forum, I was BusyBee way back in 2006 (just looked my old profile up and realise how far I have come from those dark, unsettled days) 10 years, wow. I will fast forward my life from 10 years ago, I was in a dead end marriage (now divorced him and pleased to say re-married to a wonderful man) my step-dad was a live donor back in 2008.
I'm back on the list (have been for nearly 14 months now) my dear mum has been having tests these last 6 months to come forward to donate. I've really been through a roller coaster of emotions with this decision, after all she is MY mum!
Yesterday we both attended hospital as it was going to be 'the decision day' when the consultant would tell us if she was suitable.....We sat down and his words...."The operation will not go ahead...." just echoed round and round my head, the whole room was spinning, it really felt like something out of a film. Bits of papers where being passed around, lips were moving but no sound coming out, voices all merging into one voice.
I know it's always a 50/50 chance but we both have been so convinced the transplant would go ahead. My mum has this growth 'angiomyolipoma' I've been too scared to type the word into google! I know its not cancer, but is there anyone in this wonderful 'kidney community' could explain the meaning of this? I honestly haven't slept last night, I have a huge headache and just feel the world had collapsed on me. Not wanting to feel sorry for myself, I thought I would turn to here as I know from previous experience there is a wealth of knowledge on this forum.
Thank you
BuzyBee
 
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Joined: Thu Apr 28, 2016 10:55 am

Re: Devasting news (angiomyolipoma)

Postby Genevieve189 » Thu Apr 28, 2016 7:25 pm

Hi BuzyBee. I'm so sorry that your mum won't be able to donate. I feel for you. It must be a terrible blow.

I had never heard the term angiomyolipoma either till about two months ago, when I was diagnosed with one on each kidney. From my own reading, they are benign, fatty tumours. Although benign, they can grow and cause problems if they get to about 4cm, when there is a danger of them haemorrhaging. Thankfully, mine are small as yet, only 5mm and 6mm. However, if they do grow bigger there is treatment available to prevent haemorrhage, so it's important that your mum has the AML monitored regularly to check the size. I take it your local hospital will be doing this.

I hope this helps somewhat, and can only pass on my best wishes to you in the hope that things improve for you in the future. Take care.
Genevieve189
 
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Joined: Sat Feb 20, 2016 9:38 am

Re: Devasting news (angiomyolipoma)

Postby BuzyBee » Fri Apr 29, 2016 11:18 am

Thank you so much Genevieve189 for this information. I understand that my mums growth is 4cm and the hospital told her that she will need regular scans to keep an eye out. Can I ask does this cause you any pain or discomfort? My mum never knew she had this until she came forward to donate, which is a good thing in one way as she would have never found out.
I've felt so down In the dumps these last 24 hours, had a constant headache. I think its shock, as we both were so convinced the transplant would go ahead. Saying that I feel slightly better today, my manager has phoned me to tell me I have won the regional volunteer awards with a big charity and my name is being forward to the national awards :)
Thank again for your information x
BuzyBee
 
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Joined: Thu Apr 28, 2016 10:55 am

Re: Devasting news (angiomyolipoma)

Postby yeh » Fri Apr 29, 2016 1:49 pm

BuzyBee wrote:Thank you so much Genevieve189 for this information. I understand that my mums growth is 4cm and the hospital told her that she will need regular scans to keep an eye out. Can I ask does this cause you any pain or discomfort? My mum never knew she had this until she came forward to donate, which is a good thing in one way as she would have never found out.
I've felt so down In the dumps these last 24 hours, had a constant headache. I think its shock, as we both were so convinced the transplant would go ahead. Saying that I feel slightly better today, my manager has phoned me to tell me I have won the regional volunteer awards with a big charity and my name is being forward to the national awards :)
Thank again for your information x


Hi dialysis really so bad?
yeh
 
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Joined: Tue Apr 19, 2016 4:03 am

Re: Devasting news (angiomyolipoma)

Postby wagolynn » Fri Apr 29, 2016 2:57 pm

No.
wagolynn
 
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Joined: Thu May 23, 2013 2:49 pm

Re: Devasting news (angiomyolipoma)

Postby Genevieve189 » Sat Apr 30, 2016 1:41 pm

Hi BuzyBee. No, I didn't know I had them at all - no pain, no discomfort. They were found after an ultrasound scan to monitor my kidney stones, so I was quite surprised that there was another problem. Having said that, my kidney stones are now 1cm and 6mm and, thankfully, so far, I haven't had any problems with those either, but they are being regularly monitored. I've got a feeling the urologist may be thinking of intervening, though, now that the larger stone is 1cm. I see him again in six months.

Many congratulations on your regional award and I hope you have even more success with the national event.
Genevieve189
 
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Joined: Sat Feb 20, 2016 9:38 am

Re: Devasting news (angiomyolipoma)

Postby lena » Tue Aug 02, 2016 5:15 am

Hello,

I had angiomyolipoma (aml) for 4 years now... we monitored it until it reached 4cm... I just learned that it turned 4cm last Saturday.
I will get back to you after hearing what the next plan is :)

There are 2 types of temporary solution for the amls... I have 3 in my right and 3 from my left, the 4 cm is on the left side.
lena
 
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Joined: Tue Aug 02, 2016 5:06 am


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