Wednesday, November 30, 2011

Down in the duldrums...

So this last couple of weeks have hit me like a ton of bricks. I have hit the briefing stage. I am going to b completely honest on this blog so here it goes. I was warned about the depression, the anxiety,the extreme sadness. The grief. But for me I knew I was strong. Why would that happen to me? I have always faced my challenges head on cried about then was over it. I do everything the best I can and I slightly a perfectionist. For example, I have rose bushes in m front yard. I prune them multiple times a week so they form into perfect bushes. When I decorate a Christmas tree the ornaments have to be equally spaced. Yes my friends and family including me joke about my weird quarks. But with all the hardships I have always found strength to go on or detract myself with a project. I do lots and lots of projects. I have struggled with depression off and on and especially post pardom depression. I have always pulled through. This is different. Different than anything I have ever experienced.

I have felt hopeless complete dispare and just the loss of drive to continue one. Don't stop reading now and put me in a crazy house.... I realize I am at the stage of grief. I started with denial. I didn't really have time to think fully what really happend. Not with all the drs. Hospital stays etc. now that things have calmed down I have started to grieve. COMPLETELY normal. Still at times I feel defeated buti have to move on cry my eyes out and grasp for the hope and know everything will work out the way it is suppose to. I have realized I can't do this at all and no one should. I am starting therapy and scouting out a transplant support group. I am not alone.

Today came a phone call I never expected. Something I needed.

Hope.

My surgeon found a possible match! And I'm not even on the list yet. (I have one more transplant class left to take) tomorrow I go to take a one on one class with my coordinator. Then blood test. Then we cross our fingers. Now this is a LIVE donor. A good Samaritan donor. A person that comes into the center and wants the donate just because they want to. Can you believe. This gave me hope. Gave me the boost I needed to move on. As much as feel so sick all the time. I can do this. I can be positive and keep trying. Now this whole new situation that is going down tomorrow is a 50/50 shot. It could work or it might not and this is what transplant is all about. Ups and downs. I will go into with a heart with my glass being half full.

My glass is half full.....

Tuesday, November 22, 2011

Six weeks and counting





I guess I really haven't kept up on this blogging thing. It's been hard to dig deep and express my feelings. I guess I try not to think of it so i don't completely lose it. It's been six weeks since the day my life changed forever. Six weeks since my family thought they lost me. Six weeks of learning how to deal with my new way of living.

On the plus side:

I can walk for the most part without help.
I can feed myself and don't have a feeding tube
I can be at home with my family and my beautiful girls
I can somewhat bath on my own well sponge bath
I'm on the right track to get on the transplant list.
I am grateful for dialysis so I can live long enough to get a transplant
I am gratefful for those jazzy scooters in stores when I'm not strong enough to walk
I love anti nausea meds and benydryl
I love that although my insicion is still quite huge and open it looks amazingly well and smaller than before

On the down side:
I feel completely not in control of my health or life
I feel miserably sick 90% of the time. High blood pressure weekness puking my guts out and no food sounding good to eat
I have a huge fear my new kidney won't take
I have a huge realization I will probably have to have another transplant when I'm older
I don't look so much like I did before puffy and swollen
I will be on a whole lot of meds forever and ever

Dialysis:
I don't know how much you know about dialysis; but is sucks big time. Yes I know its enabling me to be alive. Dialysis is tough and slightly depressing. You go to a larger room with chairs circling the entire room. It smells of bleach and is lite with florescent lighting. The room is filled with old sickly people. I am the youngest. and one of the only women. I go Mon Wed Fri every week and have to be hooked up for 3 1/2 hours. In a chair. and yes I have terrible anxiety and it makes me feel claustrophobic. The good part it the chairs are heated which is a good thing because one of the effects I have with dialysis is I am FREEZING COLD! The first few times I had it i shook uncontrollably the whole time. I have really weird side effects from dialysis. Everyone is different. I get extremely tired, extreme nausea and vomiting, high blood pressure. My catheter site the skin got irritated so I had extreme itching and a rash. A lot of the time my entire body itches so badly i can barely stand it. Others times I have no side effects at all. So weird and so random. So i give thanks to the good days which slowly are becoming more frequent.


I have now done all I need to do to get registered on the kidney transplant list. I have ZERO antibodies which is the best possible score. Its truly a miracle because i have had two transfusions and two kiddos. Both affect your antibody levels. Now I have to wait for two more forms other doctors have to send in and find a donor match and then I get to have surgery again. I am terrified of having surgery again. I have started having major anxiety attacks. I have fear of going under and not waking up. I have fear of of having tubes down my throat. I have nightmares still about having the breathing machine hooked up to me for days and slightly being awake to feel like you can't breath and the pain of plastic going down your throat. Not being able to talk and tell people how scared and how confused you are. Its just horrible. I think I may need to find a fellow transplant friend...anyone know any?

Now the waiting..And as you know me I am a very impatient person so this is definitely teaching me a good skill. I can only picture when day comes when I can quite my part time job at dialysis and actually play with my kids again. and the LIVE my life to the fullest!


Now that I have that off my chest....I feel better. I just need to keep remembering I am blessed to be alive even if it's not to fun living through it right now. This will pass I will feel better. I have my life. I am blessed with all those that know me and me and even ones that have never met me with all the strength love and courage they have given me.