Post Transplant

I am now over 1 year post transplant and doing wonderful! I am off all of my meds, and to be honest I feel "normal'... whatever that means. My experience with this transplant has been for a lack of a better word...easy. I've known of many people who have had a transplant, and to be honest there is no reason for me to have gotten through it so easy. But I will take it as a blessing. And I am grateful.
Z my son is now 2 1/2 and he is still such a joy. He has physical therapy, occupational therapy, as well as developmental therapy once a week. And has been getting it for well over a year now. He uses adaptive equipment like a walker, and foot orthotics. He is still far away from using the walker on his own. But it is something. We have been using early intervention since his birth and I am afraid because once he turns 3 he will be done with this program and these therapists. He will then start "school"... and although I know it shouldn't still bother me, ..it bothers me that he will be be going to a special needs school and be known as handicap. I know it's probably terrible of me. But it's my blog and I am allowed to be honest. I guess at home we treat him so normal it's hard to put that label on him. As much as I know that having a disability or being disabled is not something to be ashamed of I don't feel its that at all... maybe Im just a mom who has a hard time realizing and accepting how her son will be challenged throughout his whole life. Maybe it's not easy. But then I ask you...should it be?
Sorry for my year long absence, I hope to continue to write more. but I make no promises.

Hope you all enjoy the short work week. (for many anyway)

Lucky Girl

amazed...

Well apparently I am doing amazing. I have been in the hospital for 17 days now, and I am day +10 post transplant. Besides a few minor issues, couple fevers, a rash on my legs, headaches, and 2 days of minor backaches this has been *knock on wood* rather easy. I threw up a few times from the chemo, but it wasn't long last lasting, and as soon as I did it I felt better. I know I'm not out of the woods by any means, I mean my white blood count is still only 0.9, but my doctors are impressed and are already saying I could come home mid next week baring any further complications!! Crazy. God has really been watching over me during this. Here I've been waiting for the other shoe to drop basically, and I'm beginning to think that I may actually get through this without any crazy complications! Hope... I think that's what they call it. I almost forgot what it felt like. But I think I could get the hang of it.:) Thank you for your prayers and well wishes.

lucky girl

Thanks

I just wanted to thank you all for your kind comments. I apologize for not responding to each of you. I'm a little busy these days. :) Today was the first chemo infusion and so far it's gone great! I don't feel any different...no nausea or anything! I also wanted to thank Day... I appreciate your blog. With all you have on your plate you still remember others, you are a great person. I am so happy that things have worked out well for you.

Here's the link to my caring bridge site.
www.caringbridge.org/visit/heathermazz

Talk to you soon!

Lucky Girl

tick-tock tick-tock

Well in less than a week my next journey will begin. I am getting more and more excited and more and more anxious and nervous as well. But mainly I am thrilled of the thought of being free from this illness. I go in one Oct. 3rd and start my chemo and ATG treatment, then on the 10th I will have the actual transplant. The doctors are now saying that instead of a definite loss of fertility it is only a possibility now. That also means that menopause is only a possibility as well. This was very good news. I just turned 26... menopause doesn't sound fun. I was also told that I may or may not lose my hair. (Are you getting the picture yet? They basically can't tell me anything definite heh.) My mom works her last day at her job this Friday and will take over in taking care of Z. He has therapy 4 times a week. Luckily PT, DT, and OT are all in home! We only have to leave for aqua therapy. B who had been planning on working during my transplant (only because financially we cant afford for him not to) decided that he doesn't care about the bills and that he's going to take a leave of absence. I cant blame him, God knows I wouldn't want to work if he was going through something like this. I will try to update this site as often as I can. It all depends on the internet connection in my room. I've been admitted there 5 times and 3 of those times I had a great signal. I will ask for prayers if you're the praying kind. Honestly this is all in Gods hands. I have a deep sense of peace that everything will work out... but hey who goes into something thinking that their not gonna make it? ;) Talk to you soon!

Lucky Girl
(Trying to use her "luck one last time at least)

Emotions...

Is it a bad thing that I often think about the possibility of dying? My husband B never wants to talk about it. And I can't blame him really. If the roles were reversed I would be acting the same as him. But I find myself wanting to tie up any and all loose ends... "just in case". I want to write letters to loved ones or even make videos for them. Especially for B and Z. Heck if I died, Z would not remember me at all. And that is a sad thing. People get uncomfortable when I talk about the fact that it is possible I may die when I go through my transplant. I know there not going to agree with me, but I guess I just want everyone to know that it's a pretty serious thing. People look at me and I look healthy. Im not underweight, Im not weak andunable to take care of myself. I still like to go hang out with my friends and even dance now and then! So when people hear Im sick I feel they often think that I simply need to take medicine or maybe that I need a small operation. I always tell people that I honestly don't feel I'm going to die, and truly I DO feel everything will be fine. But when your put in the situation if you don't think about every possible outcome I don't think your preparing well enough.

Ever since getting my transplant date I find that I don't want to talk to people. I dont want to go out. I don't leave the house. It's almost like Im depressed. But I should want to go out now because I'm going to be stuck in a hospital room soon enough. But I can't get outta that rut that tells me to grab my son, and crawl into bed and stay there.

I get excited, and scared, and nervous, and hopeful, and sad all in the same hour. I cry for no reason, then I cry for many reasons. No one seems to be able to make me feel better. And I don't expect them to. But I hate this person. I don't recognize her. And she is getting really tired of being strong. But the months ahead is where Im really going to need that strength.

The means to an end?

Well Tuesday I got the call. The transplant coordinator said that they are trying for a transplant date of October 3rd. I would be admitted probably somewhere around September 27th to have all the chemo and such done before the actual transplant. I am both excited and nervous. This is what I've been waiting for, it's what I need to potentially be done with PNH! Granted it will most likely bring along it's own problems, but hopefuly they will be less threatening than the blood clots I have been having. I go in on Aug. 30th to have a pulmonary function test, EEG, EKG, Cat scans, xrays and blood work. They have to see that I'm healthy enough to have the transplant. Then September 10th I will meet with the Doc and go over my results and by then know the exact dates. I am trying to get everything situated. The bills, Z's therepy schedule (my mother is going to be watching him), Make some dinners and freeze them for B to have while Im gone for the 6- 8 weeks. I am printing out tons of pictures of my little man and the rest of my family to bring with me so I can at least look at pictures of my family while Im there. I will keep you all posted.

Keep on keepin' on...

Well by this time I had hoped that I could be updating you on either my bone marrow transplant or at least a date for it. But alas, I have neither to give you. Apparently my doctor has another PNH patient who will be going through a bone marrow transplant (bmt) and my doctor would like to coordinate us together. Convenient for him, but a pain in my ass. I was told now that it could be August or September... that makes me think maybe December. ;) I must say though that I have been feeling fairly well. Still have my daily headaches, but I can manage those. And have been tired due to a Hgb level of 8 as opposed to my usual 10. I am getting over a nasty cold though, so that could be part of it. I do have to say though that my latest pap came back with dysplasia. After a lovely colposcopy the result are back as mild dysplasia... which is basically pre-cancer. Granted most cases either go away on their own or are extremely treatable, but I am finally going to admit that my plate is full! So for a year I have to go back in to get checked out every 3 months. Im gonna share a little tmi here but, I got pretty irritated when I got this dysplasia thingy... I mean I have only been with 1 man... the lovely hubby, AND we actually waited till we got married! (I know... weird right?? What was I thinking?? lol j/k) I still don't understand why all this is happening to me. I know there is a reason. I just want to know what it is now. :) Don't we all, don't we all.

Little Z is as happy as ever. I do feel that he is starting to get frustrated though. He wants so badly to get up and go but his body just doesn't cooperate due to the cp. In good news his EEG came back and he is NOT at risk for seizures. There is parts of his brain that are abnormal from the bleed at birth, but nothing is different. B has been wanting to contact our lawyers about Z's cerebral palsy. He still feels that it could have been prevented and wants to check into seeing if we have a case or not. I myself don't even remember that time so I have no idea what to think. But my gut has always been to think that his condition is my fault... not that I could help it, but my condition may have caused it. Z's ped. neauologist wants to start Z on botox shots. He would need them every 3 months. Apparently botox is injected into muscle groups and could potentially allow him to have more control over his movement, and therefore help him crawl or maybe even walk. Hope is nice... I like hope. He also talked about casting Z's ankles in a 90 degree angle (when he bears weight on his feet he becomes a ballerina, pointing his toes) they would cast them for about 3 months and then hopefully this would give him an advantage if walking becomes somehting he can do. I want it all to work so bad. I'll admit, I want that magic wand to be waved over his head and have him jump up and come running toward me. I still believe he will do everything... and I'm ok with the fact that it could just take alot longer.

Apparently sometime today my not-even-a-year-old-car was hit by someone. I got out of my car to go into the grocery store and noticed that my rear left bumber was crushed in. That's great. Most likely happened in the walmart parking lot earlier. I went to walmart thinking that they could check the surveillance parking lot camera's for me... but no. I have to file a police report first and then the officer may go check out the tapes. So I am awaiting a police officer to call me back to get the details. We have either a 500 or a 1000 dollar deductable as well. Fun for me. 10 years driving and my first accident is a parking lot hit and run.

My insurance changed as of July first. Now instead of having to pay 50% of every office visit I get to pay 100%. Now everything else is covered... we can get procedures and surgeries and hospital stays till we're blue in the face. I just can't go see a doctor. And with Z's condition and my condition well... lets just say there is now financial stress as well. Me having not worked in over a year definitely doesn't help.

Here are some of his 1 year pics... a little late, but oh well.


Thanks to everyone who commented. I apologise for my posting delay, I was just waiting for something good to report. Sometimes I have to remember that "something good" may take a bit longer than I'd like. Hope your all well.

-Lucky Girl