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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sun Jun 17, 2018, 11:29 PM
JenW JenW is offline
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Tired

I was diagnosed 2 yrs ago with PNH. Have been on Solaris for the past two years as well. I have held down a full time job, as well as wife and mother to 4...i am just plain tired. I am really considering trying to get a release from work to focus on myself and my health. Anyone else in the same boat? I am 42 and just really need to step back and take care of my body.
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Old Mon Jun 18, 2018, 04:21 PM
GoodDay5150 GoodDay5150 is offline
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Hi Jen. I know how you feel, no pun intended. I was so incredibly wiped out from PNH, (which was never diagnosed until after I had the symptoms for years), that I was glad to know what was wrong w/ me. I was using power tools, climbing on ladders, and doing other potentially hazardous tasks all while working FT w/ basically no help from anyone. I'm REALLY lucky that I never injured myself, at least seriously, before being treated/ transplanted. I did shock myself bad one time, (my arm hurt for abt 2-3 weeks afterwards)and the dr. who treated me found some blood in my urine, but just thought that it was the result of being shocked. I can remember a few specific occasions where I had to force myself to do simple things like going to the bank or grocery store and then just rushing back home to rest/ sleep. Which of course does nothing because you are tired from PNH, not from lack of sleep. A few people would occasionally comment on how tired I looked/ was, but I just figured that it was me.... not an ultra rare blood disease. And at work during the day?! forget about it..... I would nod off ALL the time and some days I would literally be out cold if no one was around to wake me up. You did not ask but I would recommend that since the Soliris is not life changing for you that you consult w/ your doctor or another in regard to being transplanted. The HMO specialist that diagnosed me was going to treat me w/ Soliris but changed his mind because a transplant was going to be done regardless due to the severity of my disease, and he was unsure of its efficacy. I have met some patients w/ PNH who were legitimately disabled, so your thinking is not out of line. Some PNH experts do not like the idea of transplanting patients w/ PNH with the exception of extreme cases, or when PNH is combined w/ AA. I know of one such person and he is doing well. Good luck in your treatment and we are all here to help.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #3  
Old Mon Jun 18, 2018, 11:37 PM
Susan Susan is offline
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Hi Jen, I'm sorry to hear you're still pretty tired after being on Soliris for a while. What is your clone size? You don't have Aplastic Anemia or MDS - you had a bone marrow biopsy fairly recently? Are you on folic acid and iron?

I have a 99% PNH clone and before Soliris was available I went to part time work. That would be a good choice if you can swing it financially. Later I went on disability after massive hemolysis caused renal failure. (Hemolysis nearly gone since on Soliris and kidneys normal again). I strongly recommend you see a true PNH Specialist if you haven't yet. There are only a few in the country who have seen many cases. Contact aamds.org for a list of specialists. Only a specialist who has your full history can best help you look at all your options. It's such a very rare disease. If you saw one go back or see a 2nd one for a second opinion. Some patients get their Soliris dose increased and they feel better. There are drug trials now and upcoming for those who don't respond well enough to Soliris!

My PNH Specialist told me at age 46 not to have a bone marrow/stem cell transplant. With two perfectly matched siblings I still had only about a 50 to 60% chance of surviving the transplant. Not good odds. Then there are unpleasant side effects of having a transplant. It really is the very last resort.
Keep in touch and let us know how you are doing.
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Old Tue Jun 19, 2018, 04:47 PM
GoodDay5150 GoodDay5150 is offline
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Hi Susan, a few different PNH specialists I have met after my transplant advised me of the risks involved, but it's too late now!! I of course have told my transplant doctor what other dr's have said and she said that she would do everything exactly the same. My clone size was abt 95%, and after my transplant my doctor said that a transplant was the best choice because I was still relatively young and healthy, and that the risks involved increase as you get older. Another doctor told me that your entire skeletal structure is weakened following the procedure, but once again, too late now. I am part of this study. Probably the only thing I will ever be famous for!! There are a few other studies w/ similar positive outcomes.

Mario


https://oncology.by/uplds/ASH/MAC/we...aper44763.html
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Tue Jun 19, 2018, 08:14 PM
Susan Susan is offline
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Hi GoodDay, I'm happy for you, you sound like you're doing well! Yes, age and health are important factors, and it's each person's choice to have the treatment they want.

I'll take a look at the study. I believe a mini means less toxic pre-conditioning, it's been a while since I looked into it. I known several people who had that and all but two survived. Not sure why but one add severe gvhd even though it was a reduced toxicity trial at the NIH.

When you need to work and you're putting your life in danger going up on a ladder and so on, you need a good solution. I feel better on Soliris but not 100%. Be well.
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  #6  
Old Tue Jun 19, 2018, 08:23 PM
Susan Susan is offline
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GoodDay,
Did you have it at "The Hutch" in Seattle? That's where I went for my consult. Great place. I suppose you went to Denver. When I went they only had full (extreme) conditioning for PNH, the same as what MDS were getting.

One young consultant pulled me aside and said No! Very toxic, PNHers don't need that. They are like AA patients, should get and will in the future get the AA regimen for PNH. Thank goodness for advancements. I would have been too wary to get one personally though unless my life was in danger, even with a mini.

How are you, doing alright? Back to work? Enjoy your week.

Susan
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  #7  
Old Thu Jun 21, 2018, 11:35 PM
JenW JenW is offline
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I talk with my oncologist /hemotogist tomorrow. I am in Arkansas and I can't imagine there is a lot of information about this disease is around here. Thank you for all the support. I need more closeness from people with what I am going thru. I am a lost soul, please help. I have had this for two years and have quite honestly hid it for the dake of "sucking it up, buttercup".
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  #8  
Old Fri Jun 22, 2018, 08:24 PM
Sally C Sally C is offline
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Dear Jen,
Being stoic does you no good - and you aren't giving those who love you a chance to help. Just reading that you're the mother of 4 wore me out. Good Lord - you aren't Superwoman!
It is no wonder that you're having such a hard time with an already horrible situation. Please start loving yourself and let those who love you help. Your kids need you to do that. With all due respect, this mindset has to be detrimental to your health.
Take good care.
Sally
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Old Sun Jun 24, 2018, 02:25 PM
JenW JenW is offline
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Thank you Sally!! Just the words I needed to here! I am going to take better care of me
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  #10  
Old Sun Jun 24, 2018, 06:28 PM
Sally C Sally C is offline
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Yay! You go girl!
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  #11  
Old Thu Jun 28, 2018, 03:49 PM
GoodDay5150 GoodDay5150 is offline
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Hi Susan and all. Yes, my transplant was done at PSL in Denver. As I have prob stated in some previous posts, there was not a lot of discussion between myself and dr's b4 my treatment plan. I was told that I needed a transplant and that's what we did. I did not meet w/ any other dr's other than my HMO specialist and the doctor at the clinic who did my transplant and follow up care. In my non-medical opinion, but an EXPERT not by choice but because I had PNH, I doubt that Soliris would have helped me much simply because I was so sick for so long. Not all dr's are in agreement with transplants for patients such as myself. The pre treatment I had was abt 1/3 the level of radiation and chemo that would normally be used.
I have learned from personal experience that some people are just healthy and some are sick. Some people are treated/ cured of really bad diseases and some are not. Life isn't always fair... I was telling my neighbors dad abt me and my whole PNH thing; he is one of the lucky healthy people, at age 80. Which I pointed out to him!


Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #12  
Old Sat Jul 7, 2018, 10:42 PM
Susan Susan is offline
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Hi Jen, How are you?! How did your Dr appt go? Many people with PNH are or were on Social Security disability. Some went on company disability first. Later some were able to return to work once on Soliris but not all of them.

I used to go to AAMDS patient & family conferences and the support break out sessions. It was always said to ask family and friends for help. have someone do shopping some errands, babysit and so on sometimes so you can sleep, rest!

How about ordering some AAMDSIF info packets on PNH ( and Aplastic Anemia because they are related and both exhausting). Give them to family, good friends. They can watch AAMDSIF educational webinars about fatigue and coping - how serious it is.

I remember sometimes when I was working I was so weak I had to hold on to the walls for support when I walked out the door! I had no business working but needed the income. My Hgn was just a tiny bit too high for a transfusion. I should have insisted.
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