Another busy week

I have 4 appointments coming up. I understand why I need to go so often, but Im so tired of it all.
Monday I have a stress test.
Tuesday I see the GI Dr.
Thursday I see the hematologist.
Friday its another stress test.

I know my mind will be put at ease, getting to hear the baby twice a week. But ontop of all the other Dr.s I get so worn out. And to think that once this little man is born, thats when the rest of the test start. More bloodwork, x-rays and scans. More doctors. My arms are still bruised from last weeks round of tests. I am tired of having wake up early to inject and having to be home early to inject again.

Around 33 weeks I will be switching from Lovenox to Heparin. Still an injection. And then at 35 weeks we will do an amnio. I am just praying that this little man can wait that long. For now its just a waiting game.

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Early weekend :)

I called it. As of today, the weekend has started! For me anyways. Tomorrow I have no appointments and I have already told every Dr I saw this week not to call me on Friday. I am beyond drained. Mentally and phisically drained. Considering I had blood draws 3 days in a row this week. Now if only I didnt have to wake up at 8 every morning and do my morning injection. I was doing them later, but was having to work my appointments around my med times, so I moved to 8am and 8pm. Hopefully I wont be kicking myself in the a$$ for it, I am not a morning person...at all. But I figure I can always just get back in bed afterwards. And I wont have to stay up to take it at night.

My Hematologist didnt seem to concerned about my hemoglobin levels. Unlike the Trans. Specialist who was upset that no one had mentioned it to me. And everyone wants to know when my delivery date is, but my Ob and Peri wont give me a date. I see them Monday and Tuesday and would love an answer by then. I am demanding it actaully, in a nice way:)

Everyone feels the need to remind me that its only going to get harder and worse once the babys born. So much for support eh. I know they are trying to prepare me for whats to come, but I know this already. I know Im going to get sick. I know there will be more Drs, hospitals, meds and bloodwork. But for now Im tired of it. Maybe next week I will feel better, but for now, Im sick and tired of it all.

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Transplant Institute

Today I met with a Dr. from the Transplant Institute here in town. While it took a while for him to come in(he was at lunch, once he came in things sailed along. When I first went in, they put one of those hospital bracelets on and I thought they were going to admit me or something. Anthony got to watch me get weighed, temped and by BP checked. Then he sweetly asks "do you feel better now momma" Of course as soon the nurse started writing down my history, Anthony had to get out his paper and crayon and act like he was a nurse too. Then the boys left and it was just me.

Dr. O is very nice. He accepted my sarcasm, so he works for me. He was very thorough in asking questions and answering mine. It was pretty much a meet and greet and to get my name and info in to their system. A million and one questions. He felt around my tummy and was hoping to feel the baby move but he was still as ever. He showed me diagrams and explained the blood flow patterns in the body and showed me where my clots are. Then we talked about a plan. Which isn't much of one at the moment.

I go back in a few weeks to have sonograms of my liver and neck. My liver so that he can have his own films. And my neck to make sure that there are no clots in my coratid artery. I guess he felt that my pulse was stronger in one side than it was in the other and wants to rule out clots there. Fingers crossed that's all clear. He also wanted to talk with his head surgeon about what would be the best type of shunt for me. He wants to make sure no veins or arteries are damaged so that when transplant time comes things will OK to connect to. Another thing I learned today is that you can get varicose veins on you esophagus. Which he wants to do an endoscopy to make sure I don't have them. That would be another serious complication.

After that, I got my picture taken. Took a walk next door for some blood work and we were on our way....4 hours later:) All in all a pretty uneventful day, but it had to be done and is now out of the way.

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Drs Update

Well I saw the GI on Monday and my OB today. Not much news.

I love going to see my Dr. H. Its always a short wait and hes so great about explaining things in normal people language. He says that there is still a 10% chance I will not need a transplant. And says that the hope I need to hang on to. He explained how the TIPS Shunt procedure goes. And said that it will be done a few weeks after I deliver. We talked about my choices for transplant teams and I called the one I picked to have them set me up with a consultation. It isn't easy getting into the system, so he is having me do it now. That way if in 1 year or 9 years, I do need it, I will be set up and ready to wait on the list:) That was about it. I go back in a few weeks again for another check up. I'm hoping to hear back from him on how my liver enzyme test is. Hopefully all is still good there

Today it was the OB. Which means a long wait in the waiting room for a few mins with the Dr. I really do like Dr. A, just wish the wait wasn't so long. She always takes her time and answers all my questions. If she can. We talked about my fluid levels being to high. She said that they were not to high for concern, and says its most likely because of everything else that is going on in there. We talked about steroids and an amnio. And she is going to talk to my GI about the chest pain and see if I can get into see a Cardiologist just to be safe. Hopefully I will hear about that soon. And I have to do my Glucose test next week. I don't know what I will do if I fail. I cant take anymore shots. But she said there is always diet and pills first. Thank God..again:)

Next week its back to the Hematologist and who knows what that will bring about, but hopefully its something good. I'm so tired of bad news. Ive got to hit at least on good thing sooner or later. Other than that things are good. I can feel myself getting weaker by the day, and I am having a hard time eating. So I spend most of the day in bed and get up to eat as often as I can. I have lost 5lbs but the Drs say that is the least of my worries. Just to keep hydrated and keep eating healthy. Just keep swimming right?!?

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The good leg

Day6 left leg, originally uploaded by kmunoz28.

Here is my good leg:) Well my better one anyways. I started my second row, but got a little to close to another site. Im working on it though. Looks better than the right leg for sure.

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Lovenox sucks.

Day6 right leg, originally uploaded by kmunoz28.

Note to self. There is no need to squeeze the hell out of your leg. Just a simple pinch of skin will do. This is my right leg on day 6.

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Thinning out

Today I sat with a man who had cancer and we laughed together for one of the longest hours of my life.
My hematologist is actually an ocologist as well and his main office is that the cancer center down town. So today I had to go in and "get educated" on how to stab myself properly and push acid into my leg. OK a little dramatic, but Im being a baby today. Is so much eaiser getting pissed off a the nurse when you get shots, than getting mad at yourself. Getting back to my new freind, it was such a relief to sit wiht someome who had such a positive outlook when we were surrounded my people getting their chemo. It as just sad. And there I sat, young and pregnant, and the only female in there. Everytime I got up everyone looked at me funny. But atleast I got to see it. Makes me even more grateful for the health that I have. And gives me a heads up on something that I could very well be dealing with at some point in time. Sometimes I feel guilty for being so optomisitc and cheerful. I felt bad for laughing in a room of people who were in pain and sad. But comforted by this man, who had been through so much and was able to laugh about borrowing my eyebrow pencil, since he had lost all his from the chemo. So many mixed emotions today.

I also gave myself my very first self injection today. As you can tell, I didnt take it like a man. And thats ok becaues Im not. Seriously though. It stings when the needle goes in and burns like hell when the meds go in. I look forward to the day I can take the pill form. I take them 2 times a day. 10 and 10. Not to early and not to late. Im sure it will get easier, probably on my last shot though right. My kind of luck. So that was my day. Minus the 2 and a half hour wait at walgreens that I refuse to do again. And heres a quick shot of my goods. (get your heads out of the gutters)

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New month..new news?

Monday is here at last. However..Dr A isn't in her office and Dr. M is out sick. I just want to scream. I know I'm no one famous or rich, but I wish I was. To have Drs. who call back and are always there when you call. OK waking up now...

Good news is I have an appt with the Hematologist on Thursday. So at least I got some kind of news today. I know Dr A is back in her office tomorrow and I will be calling as soon as I get up.

Today was rough. Its the first day I am really really tired. I got out of bed to eat lunch and dinner and go to the bathroom but that's about it. I love having a laptop:) Spirits are still high. I have been pretty positive though all of this so far, but its getting harder to smile and harder to tell myself everything is going to be ok. I have been reading anything I can find, and while most of it is the same thing over and over, its all bad. I found a blog from a lady who was diagnosed back in 2006 but she only wrote an intro and thats it. I can only imagine why she stopped. I was supposed to start my kick counts today. I felt them, just havnet written them down yet.

I dont know if there is a procees you have to follow to get through things like this. Im more angry than sad. I want to cry but feel like thats giving in. I feel guilty. But I cant show any of this. I refuse to let my kids see me sick. I have to put on a smile and pretend like everything is ok. I dont want people to worry over me, but I cant not tell them whats going on. So here I am writing it all down. I cant promise it will always be pretty and happy, but it will be me.

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