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PNH Paroxysmal nocturnal hemoglobinuria

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Old Fri Jan 4, 2013, 10:21 PM
Heather8773 Heather8773 is offline
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Location: Houston, TX
Posts: 254
PNH

I wanted to say that I know there is a huge difference between being a care taker and a patient. and I have realized that sometimes my husband just needs me to be his wife and not his (constant...overbearing...incessant) caregiver.

A blog called "Just us. Musings of a childless scrapbooker with PNH" jackiep1102.wordpress.com has been very helpful. She talked about watching the movie 50/50 (amongst other things). I have to say it was more appreciated after my husbands dx for both of us. It made us laugh more this time.

My husband has been very sweet to let me type his words, or be his voice and constantly sign us up for groups, web sites and, meetings. If anyone wants to connect we are happy to share experiences. PNH, Eculizumab, overbearing care taker, ect..

Its a "funny" thing to look at your life, the complaints and, frustrations you had before a Dr gives you news that changes your life forever. A funny thing and a blessing of perspective. I think this is true for patient and the person who loves them incredibly.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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Old Fri Jan 4, 2013, 11:57 PM
Neil Cuadra Neil Cuadra is offline
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Heather (and Ronald),

Your points are so true. A life-threatening illness gives you an entirely new perspective, helping you realize what's important and what's not. It certainly happened to my wife and me.

PNH and other marrow failure diseases can put a strain on marriages, because you have to fight not to fall completely into new "patient" and "caregiver" roles. These diseases usually can't be vanquished quickly so you have to remember you are husband and wife first. At the same time it makes you a team as you've never been before. People talk about soldiers becoming brothers in the trenches, and the same is true for families who band together to battle an illness.

You're right that Jackie has a great blog, especially because it's mostly about life, not a disease. Great photos too!
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Old Sat Jan 5, 2013, 10:56 PM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Neil thank you and your wife for being so dedicated to this site and bone marrow failure.

I can see yalls passion for the fight, cure, comfort to others, and awareness in the posts.

I hope your wife is doing well!

I believe that all of us together can make a change for the better in bone marrow failure progress!

I love the brothers in the trenches. After 10 years with my husband we have never been stronger!

You will probably see this over and over in my posts but when My husband or I feel afraid I remind us of Philippians 4:13. It helps remind (I know for myself, we're not alone. Stay positive)
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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