1. < Blood Cancers & Disorders

Does anyone have B-cell prolymphocytic leukemia (B-PLL)?

Posted by bflattenor @bflattenor, Aug 6, 2018

Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jun 27, 2019
In reply to @peggy1944 "Hi bflattenor! My sincerest apologies for not answering your post sooner, me e--mail has been disabled..." + (show)
@peggy1944

Hi bflattenor! My sincerest apologies for not answering your post sooner, me e--mail has been disabled for 2 months. You are so very brave facing and fighting B-PLL with such good spirits. I should originally have said I am living with chronic congestive heart failure, respiratory distress and total deafness. Your posts and all the others on Mayo Connect have given me the courage just to take these miserable obstacles one day or one minute at a time. I also have severe chronic pain but thanks to MC, am managing OK. We are all in some kind of boat but nothing can sink us! Best Wishes, Peggy

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@peggy1944, thank you for responding to @bflattenor. Did you also know that you can check your discussions, posts and notifications on the website as well? If your email is now working, click on VIEW & REPLY at the bottom of this notification and you will be brought to the discussion on the website. This way, if your email is deactivated again, you can still check your messages and discussions. It is also a bit easier to see the conversation and everyone's posts a bit easier on a webpage as well.

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1 reply
bflattenor | @bflattenor | Jun 28, 2019
In reply to @peggy1944 "Hi bflattenor! My sincerest apologies for not answering your post sooner, me e--mail has been disabled..." + (show)
@peggy1944

Hi bflattenor! My sincerest apologies for not answering your post sooner, me e--mail has been disabled for 2 months. You are so very brave facing and fighting B-PLL with such good spirits. I should originally have said I am living with chronic congestive heart failure, respiratory distress and total deafness. Your posts and all the others on Mayo Connect have given me the courage just to take these miserable obstacles one day or one minute at a time. I also have severe chronic pain but thanks to MC, am managing OK. We are all in some kind of boat but nothing can sink us! Best Wishes, Peggy

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Dearest Peggy, I'm sorry to hear you are having so much pain.Most of my pain is only when I am trying to walk,and since the B-PLL is making me want to sleep most of the day that's not so much.Your reference to a boat "hit me where I live" ; since I am almost a life long sailboater.....anything from 8ft.to 36ft.I've owned and sailed them all. Living on a lake makes up for that loss.

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1 reply
peggy1944 | @peggy1944 | Jun 29, 2019
In reply to @JustinMcClanahan "@peggy1944, thank you for responding to @bflattenor. Did you also know that you can check your..." + (show)
@JustinMcClanahan

@peggy1944, thank you for responding to @bflattenor. Did you also know that you can check your discussions, posts and notifications on the website as well? If your email is now working, click on VIEW & REPLY at the bottom of this notification and you will be brought to the discussion on the website. This way, if your email is deactivated again, you can still check your messages and discussions. It is also a bit easier to see the conversation and everyone's posts a bit easier on a webpage as well.

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Hi Justin, and thank you for responding! Yes, I have already been a member on other sites on my computer. But not recently. I've been sick for almost 2 weeks with upper respiratory infection, ear infection. Always wanted to start a conversation about how older cleft palate/cleft lip craniofacial deformities survivors have coped many years after their initial surgeries. Like surgery in the dark ages. I did not fare well. Thanks again Justin, and have a great holiday! Peggy

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peggy1944 | @peggy1944 | Jun 29, 2019
In reply to @bflattenor "Dearest Peggy, I'm sorry to hear you are having so much pain.Most of my pain is..." + (show)
@bflattenor

Dearest Peggy, I'm sorry to hear you are having so much pain.Most of my pain is only when I am trying to walk,and since the B-PLL is making me want to sleep most of the day that's not so much.Your reference to a boat "hit me where I live" ; since I am almost a life long sailboater.....anything from 8ft.to 36ft.I've owned and sailed them all. Living on a lake makes up for that loss.

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Dear Barbara, thank you for all your kindness in responding to my post! I understand just what it is to need sleep, it is my middle name. OMG, I am scared to death of anything pertaining to boats and water!! Terrified, not brave like you. I can't even drive over a bridge with water under it! Get panic attacks at the thought of being forced off the road into the drink. Oh well, Barbara, I am so happy you lived your life with what you truly love! Gotta go, and Happy 4th!

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1 reply
bflattenor | @bflattenor | Jun 29, 2019
In reply to @peggy1944 "Dear Barbara, thank you for all your kindness in responding to my post! I understand just..." + (show)
@peggy1944

Dear Barbara, thank you for all your kindness in responding to my post! I understand just what it is to need sleep, it is my middle name. OMG, I am scared to death of anything pertaining to boats and water!! Terrified, not brave like you. I can't even drive over a bridge with water under it! Get panic attacks at the thought of being forced off the road into the drink. Oh well, Barbara, I am so happy you lived your life with what you truly love! Gotta go, and Happy 4th!

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I was not always brave when it came to water. When I was 8 yrs old I lived in Petaluma for a short time. My 10 yr old sister had a friend who lived on the other side of the river.One day we were going to her house which meant crossing the draw bridge. They walked across and turned around to find me still on the other side.My sister was not very happy with me; so I tried to get a little braver. I looked each way up and down the river and saw no boats,and the cars were still driving across;so I ran like a thief ! I have no recollection of how I got home. I've had to call on that bravado a lot in the last 6 yrs.

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1 reply
81ue... | @81ue | Jul 4, 2019

Barbara, I'm so sorry to read you were let to go down to Hgb 5.4. Truly you are brave to have to go through this, and I'm so glad you got the transfusion in the nick of time. I hope you are able to enjoy going for walks again without so much pain and that you have energy to enjoy things in life. I wish you a Happy 4th of July !

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bflattenor | @bflattenor | Jul 7, 2019

I went to the lab for my scheduled appointment. I expected it to be low, but it was 6.3---it's not that easy to guess. Now I have to arrange either a Tues. appointment,and someone to meet the Meals on Wheels, or try to get a Monday appointment; so I can be home.Nobody said it was going to be easy.The 4th was beautiful,thanks to my neighbors who ignored the law and shot fireworks over the lake.

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bflattenor | @bflattenor | Jul 11, 2019

I was given 1 bag of blood since the reading was so high(?). I read mostly the hgb,but the Dr.may be relying on the whole picture.Now I will need to go in every other Sunday for LAB work. I'm starting to feel like a burden on my friends.

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1 reply
peggy1944 | @peggy1944 | Jul 15, 2019
In reply to @bflattenor "I was not always brave when it came to water. When I was 8 yrs old..." + (show)
@bflattenor

I was not always brave when it came to water. When I was 8 yrs old I lived in Petaluma for a short time. My 10 yr old sister had a friend who lived on the other side of the river.One day we were going to her house which meant crossing the draw bridge. They walked across and turned around to find me still on the other side.My sister was not very happy with me; so I tried to get a little braver. I looked each way up and down the river and saw no boats,and the cars were still driving across;so I ran like a thief ! I have no recollection of how I got home. I've had to call on that bravado a lot in the last 6 yrs.

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Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to reply, been laid up but now back to the usual. Haven't looked through the posts yet, hope you are coping OK with your journey. What a courageous person you are! Your experience with crossing the bridge is a great parable. Just tie another knot and hang on. I was not quite as successful facing a scary water problem when I was also 8; my father wanted me to cross a lake with him in a canoe! Was so terrified I almost passed out cold. No bravado there. Well, that's water under the bridge! Let me check my posts later, and Barbara, you really give me hope for the future! Peggy

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1 reply
bflattenor | @bflattenor | Jul 17, 2019
In reply to @peggy1944 "Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to..." + (show)
@peggy1944

Oh Barbara, sometimes it is so hard to be brave! Sorry I took so long to reply, been laid up but now back to the usual. Haven't looked through the posts yet, hope you are coping OK with your journey. What a courageous person you are! Your experience with crossing the bridge is a great parable. Just tie another knot and hang on. I was not quite as successful facing a scary water problem when I was also 8; my father wanted me to cross a lake with him in a canoe! Was so terrified I almost passed out cold. No bravado there. Well, that's water under the bridge! Let me check my posts later, and Barbara, you really give me hope for the future! Peggy

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Did't you mean WATER UNDER THE CANOE????

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