Pete Male Bristol United Kingdom: Like

0 members like this; Share Twitter

Blog Posts (5)
Discussions (4)
Events
Groups (1)
Photos
Photo Albums
Videos

Pete's Friends

View All

Pete's Groups

Localized Amyloidosis (A…

4 members
0 Comments 0 Likes

View All

Pete's Discussions

Am I being Paranoid?

Started this discussion. Last reply by Pete May 2, 2012. 4 Replies 0 Likes

Frankly I only have Amyloid in my bladder, in fact I have three spots of it. On November the 3rd 2010 I bled very heavily from my bladder and I lost half of my blood, I had to be operated on to stop…Continue

View All

Gifts Received (2)

Red Ribbon From Meredyth Red Ribbon From Louisa Marion's Daugher

Pete's Page

Latest Activity

Pete joined Louisa Marion's Daugher's group

Localized Amyloidosis (ALoc)

There are many types of localized amyloidoses. The most common and best known is Alzheimer’s disease. Localized amyloid deposits in the airway (trachea or bronchus), eye, or urinary bladder are made up of light chain proteins, similar to those in AL amyloidosis. However, in localized amyloidosis the abnormal plasma cells producing the amyloid light chains are in the tissues, not in the bone marrow. Other localized types of amyloidosis are associated with hormone proteins, aging, or specific…See More

Apr 25

0 Comments 0 Likes

Moderatordancermom left a comment for Pete

"Hi, Pete, we have a new sub-group for localized amyloidosis that I hope you will join: http://amyloidosissupportnetwork.org/group/localized-amyloidosis-aloc We are hoping this will make it easier for our members with localized amyloidosis to share…"

Apr 25

Pete left a comment for dancermom

"Hi dancermom, thank you for your comment it was most appreciated. To be honest i am fine and since my last bleed in June of last year i have had no problems.For your information when i had my last bleed i was in hospital for a week and at that time…"

Apr 5

Moderatordancermom left a comment for Pete

"Hi, Pete, I am new to the group. I hope you are feeling well. It's always peculiar as a patient to have to educate doctors about your condition; it feels like it should be the other way around, doesn't it? Sometimes I…"

Apr 5

Pete liked Louisa Marion's Daugher's discussion Peace and Serenity

Feb 5

Pete replied to Ray's discussion Good news! And hope to ALL!!

"Hi Ray, i so very pleased to see that your mum is now out of hospital and that her Amyloids are in check, I sincerely hope that all goes well and i will be praying for your mum and of course you and your dad. I send you my sincere and very best…"

Oct 20, 2012

Pete liked Ray's discussion Good news! And hope to ALL!!

Oct 20, 2012

Pete and Ray are now friends

Oct 19, 2012

StuartUK commented on Pete's blog post My Feelings about my Amyloidosis

"That's good news about the deposits being removed. I know that my dad's local doctors are in regular contact with the doctors in London because there are things like restricting fluid intake on the particular chemo that my…"

Oct 17, 2012

Pete commented on Pete's blog post My Feelings about my Amyloidosis

"Hi to my friends on the Amyloid Support Group particularly to you Stuart.In answer to your question, Stuart, asking if i have been to the Royal Free Hospital in London, i have been twice and i have had every test. My Doctors in the Urology…"

Oct 16, 2012

Pete and StuartUK are now friends

Oct 16, 2012

StuartUK commented on Pete's blog post My Feelings about my Amyloidosis

"Hi - I know it's not local, but have you had any contact with the Amyloidosis people at the Royal Free Hospital in London? I've been down there a few times with my dad and they are really good! He's been going to the local…"

Oct 16, 2012

ModeratorScott Orn commented on Pete's blog post My Feelings about my Amyloidosis

"We have a Multiple Myeloma network if that is helpful too: http://www.lifewithmultiplemyeloma.org/"

Sep 11, 2012

Tracy loves her dad commented on Pete's blog post My Feelings about my Amyloidosis

"I am sorry to hear this. If you have difficulty finding an Amyloidosis specialist in your area....check on a Multiple Myeloma specialist in Oncology....dad's local hematologist took him on and he has a good understanding based on his…"

Sep 10, 2012

Pete updated their profile

Aug 29, 2012

mike commented on Pete's blog post Catheter

"maybe try what I believe what are called kegal exercises..basically while you are urinating try to stop and start..the idea is to build up muscles..of course yes see the doc first to check things out.hopefully this will help..mike"

Aug 17, 2012

Profile Information

Are you a patient, relative, friend, caretaker or medical professional?: Patient

When were you (or the patient) diagnosed?: September 10, 2008

What medications and/or treatment have you tried?: None

How has Amyloidosis affected your quality of life? Your ability to work?: The only way that my Amyloidosis has affected me is that i am nervous when i go on trips as i want to know where the nearest hospital is, just in case i have a bleed

Please share your story with the community..(even a few words helps us know you are not a spammer. :)): I have localised Amyloid of the Bladder and i have had it since about the year 2008. In that time i have had one big haematuria when i lost half of my blood and my bladder was operated on to stop the bleeding.I go to hospital every six months for Cystoscopies so that they can keep an eye on what is going on in my bladder. I had a Cystoscopy in Dec and a growth was found but when i had another Cystoscopy in March the growth had not got any bigger so the consultant decided to leave it and they will check it in September. I also go to Haematology, i have been going every six months but now i am going in September which will be one year since my last appointment, i have blood tests so that they can see if my Amyloid is travelling to other organs. I have been to the London Free Hospital twice for all of the tests. Its been seventeen months since my big bleed but it still plays on my mind but not to the extent it used to.

How did you hear about us? (This information tells us how to best find new patients to help!): 7. Other

Why did you decide to join (multiple answers okay)?: Friendship: I wanted to connect with others, Support: I want to help support others dealing with this, Information: I want to learn more about symptoms/treatment, Information: I want to share what I've learned about symptoms/treatment

Do you want to to OPT-IN of the Ben's Friends monthly newsletter (http://bensfriends.org/welcome/newsletters)?: Yes - please send me the monthly Ben's Friends Patient Communities newsletter.

Pete's Blog

Catheter

Posted on July 30, 2012 at 9:02pm 2 Comments 0 Likes

Two weeks ago i came out of hospital having had a catheter in for a week. Since coming home i have had to have antibiotics to clear a water infection and also i am having great trouble in regaining control of my bladder, can anyone advise me please?

My Feelings about my Amyloidosis

Posted on July 15, 2012 at 9:45pm 9 Comments 0 Likes

My Dear Dear friends, at this moment in time i confess i am full of perhaps self pity and also with frustration due to the ignorance that i have encountered during this last week. In my last Blog i mentioned that i am due a cystoscopy within the next three weeks well this will not happen due to the fact that last Sunday morning i was admitted to the urology department of Southmead Hospital Bristol with the bleeding from my bladder that i have previously mentioned. I…

Continue

Update

Posted on July 7, 2012 at 12:01am 1 Comment 1 Like

Further to my last Blog, I have been in touch with the Amyloidosis Centre, that, as you no doubt know is in the Royal Free Hospital, London, they in turn got in touch with my G.P and this afternoon i was contacted by the Urology dept of the hospital that i attend and i am pleased to tell you that i will be having a Cystoscopy within the next two to three weeks. Apparently they have to wait for the bleeding in my bladder to stop and also for my bladder to settle.…

Continue

Bleeding

Posted on July 5, 2012 at 9:55pm 4 Comments 0 Likes

Hi, at this moment in time, i must confess, i am on the floor so to speak. Last Monday afternoon i started to pee blood so the following day i went to my Doctor who decided to check me out for an infection so she sent my sample off to the lab for analysis. That night i began to bleed more profusely so off i went to A & E and eventually i was told that "I COULD HAVE" an infection and so i was given some strong antibiotics and i was also told to call my consultant…

Continue

Comment Wall (10 comments)

You need to be a member of Amyloidosis Support Network - Online Support Group to add comments!

Join Amyloidosis Support Network - Online Support Group

At 8:05am on April 25, 2013, Moderatordancermom said…: Hi, Pete, we have a new sub-group for localized amyloidosis that I hope you will join:

http://amyloidosissupportnetwork.org/group/localized-amyloidosis-aloc

We are hoping this will make it easier for our members with localized amyloidosis to share information. Wishing you a good day!

At 8:57am on April 5, 2013, Moderatordancermom said…: Hi, Pete, I am new to the group. I hope you are feeling well. It's always peculiar as a patient to have to educate doctors about your condition; it feels like it should be the other way around, doesn't it? Sometimes I advise patients to print out fact sheets and just hand them out when necessary, so as not to have to repeat themselves, particularly if doctors are discounting their symptoms. Best wishes to you!

At 11:18pm on May 17, 2012, Meredyth gave Pete a gift…: Red Ribbon
Red Ribbon
From the Gift Store

At 6:04am on May 11, 2012, ModeratorLouisa Marion's Daugher said…: Hi Ratkins....Hope you are feeling well!

At 7:26am on April 28, 2012, mary cimeni said…: Welcome to the groups Ratkins :)

At 5:39am on April 27, 2012, ModeratorBen Munoz said…: Hi, Ratkins! Hello and welcome to the family here. If you have any questions, please feel free to ask. And also we're always looking for patient/moderators, so if you have any interest in welcoming new members and helping newly diagnosed patients, just let me know. Cheers, Ben

At 4:32am on April 27, 2012, ModeratorScott Orn said…: So glad you found us Rakins!

At 9:07pm on April 26, 2012, ModeratorLouisa Marion's Daugher said…: Welcome Ratkins! Stay Strong and Stay Positive! We are here for you!

At 9:05pm on April 26, 2012, Louisa Marion's Daugher gave Pete a gift… Moderator: Red Ribbon
Welcome!
From the Gift Store

At 6:28pm on April 26, 2012, John "JC" Colyer said…: "Welcome Ratkins , I know you will connect with good people here that will offer you support and information, Stay Strong!