PNH I'm getting discouraged

I have a pre op appointment at the end of the month. I have heard that they are not doing any surgeries in July. I don't know if this is true or not. anyway, I know that there are a few people that thier number is after mine and have gotten appointment before me. This should not happen, but it does. I know everything happens for a reason and it is in God's hands. I'm trying hard to not think of everyone one else and how unfair it all is blah, blah, blah but I'm getting discouraged. I'm losing my focus. My Husband may be deploying in July and I really would like to have him home for this. Can any one give me some words to inspire me and keep me upbeat and marching onward? I would really appreciate it!

HI THERE!  I have been wondering how you have been.  I met you during our nutrionist appointments.  Hang in there, it will come quickly!  The word about no surgery in July is that there are no surgeries for a week in July not the whole month.  I know someone else will respond and tell you what they have heard also.  You have waited so long now and it will be so worth it.  The team there is awesome.  I cannot speak for the way the numbers come up and the order in which people are taken but I know that certain labs and evals will delay your next appointment.  Don't get discouraged, your time will be here before you know it.  That would be great for your hubby to be here for your surgery, you WILL need help. I had surgery last Weds the 14th of May.  I cannot say enough about the staff there.  Dr Chastanet is top notch and his team is awesome also.  I am taking one day at a time and each day that passes gets easier.  Stay close to the board here, the advice is awesome and support is wonderful.  Good Luck to you and please keep us updated.   

Thank you so much for the encouragement. I know in my right mind that everything happens for a reason and we should not worry about everyone else, but I am getting that what about me feeling! I hope I get a date and then say " I have so little time to get ready!" I am very independant and pride myself in being able to handle everything without my hubby around. I'm not a whinny military wife and know that he is gone I'll be just fine, but for once in my life I'd like him to be there.  Thanks for listening. I know you have been where I am right now adn it is nice that you are giving me encouragement. Again thanks a million!

BIG HUGS!!  I'm sure you will hear from your doctor very soon.  Keep your spirits high and I hope that your surgery gets scheduled before your husbands possible deployment.  I know this wasn't really inspiring, but please know that I'm thinking of you and hope you will hear something soon.  :)

Do not loose hope or be dispaired. Your surgery plan is in the works, and it will come when it is your time. Trust that HE knows all , and will deliver. I prayed for months before my surgery. I thought I would not get a date , I kept having to have this test and that test and then it came , my approval - then my date .  Many people believe it or not come to the place you are at , wanting surgery - begging for insurance to accept them and get turned down. You my sweety are almost there .  Sometimes when we want something so bad , it feels like it is going to take forever, then WHAM it is upon you.  Do not loose site on what is before you . Take this time to talk to others that have had the surgery, do research - learn about the lifestyle . Try doing some things post ops would do . Eat smaller portions, drink lots of water . Get into good habits now . This way when the day comes you are so very ready.  Lean on us here !! If July rolls and your husband deploys and you get a date . You can make it happen. I would have dug ditches , tredge through sewers to get my surgery date . Like I said , lean on your support here . If you need help with children, or house work , see if there are people close to you that can help . These are things you do need to think about . Just start a plan A , and Plan B, but be ready, as it could be sooner than you think,  I will pray for you tonight that you get the answers and the true blessing that this surgery brings.  God is good and trust in this and go forward.  With much love and respect,  Natalie

Well I just wanted to say that all though it doesnt make it any more fair or easy everyhting does happen for a reason and god does know what he is doing. With that being said, I noticed that two people with numbers below mine got their date about a week before I did. I decided to harrass my way back in line and didnt stop calling and leaving at least two messages a day untill I was called. Each time I just said I wanted to make sure I wasnt lost in the system somewhere. I got a call the second day :) Good luck Brandi~

I can't give you words of wisdom regarding PNH as I am not familiar with their procedures but I do want to say we are here for you.  Everything does happen for a reason even if we can't see it right away.  Your day will come!

Hi PNH is only taking off the first week of July. But other than that the surgeries will be taking place in July. I don't know how the they work the system there but it is very weird. I have my pre opp appt the end of this month too. So hopefully we will get a surgery date for sometime in June. Don't give up hope though. I started this process back in June and than Tricare told me they would cover it at PNH and not on the outside. So I had to go to two oreintation one on the outside of the military and the one at PNH. But it is almost our time. Have a great day. Gwen