I met with Dr. Know It All my PNH doctor last week. I informed him about my insurance changes coming up and also expressed to him my concern about this fall. As many of you may know Chrysler was recently bought by a company called Cerberus. My husband works for Chrysler... and while it was once known for it's great benefits and pay there is to be a new contract drawn up this September with the new owners and there is talk about decreasing pay by 30% and also messing with our healthcare. Whole alot of this is hear-say the problem is that we just DONT KNOW what's in store for us in the future. One thing that is causing US automakers to lose money is the fact that our pay and benefits are far far better than foreign car company's. So we are preparing for the worst. Dr. Know It All told me that he was very excited to see how my blood counts are responding to the new drug treatment Soliris. The only side effect I have had from this new drug are headaches. When asked when he is thinking about doing the bone marrow transplant he told me that it's up to the donor, depending on when he is available. (side note... since I had 4 potential donors the doctors told me that he chose the youngest male donor.. I thought that was interesting) But he did say that it could be done next month!! That came as a bit of a shock. I tend to be one who likes to plan in advance and prepare myself for things, so to hear that in a few weeks I could be undergoing chemo and a bone marrow transplant was a bit much. But as scary as it is I am even more excited to move on. have felt like the past year I haven't been able to be me... I was only as good as my illness let me be. So... I guess I am just waiting for the call to see if things will be progressing as quickly as he said.
Z is doing great... I have an appointment to get some 1 year pictures taken here in the next few weeks. I will try to post then once I get them.
"Hi" to any new friends who may be stopping by my page. You are welcome here. :)
Tuesday, May 22, 2007
Sunday, May 13, 2007
Busy doing nothing?
Sorry for the lack of posts. Although the few of you that read this probably are used to it by now. :)
Let's see... since my last post, what has happened? Alright well, at the end of March through the beginning of April I was in the hospital again. Only for 4 days, this time no clot per se, which was good, but I was there for severe abdominal pain that was only manageable through some intense IV narcotics. Then the 3rd week of April my husband B and I went to Florida for a week, baby free. My parents graciously watched him for us. It was great to get away, just the 2 of us. Since I had Z almost a year ago now I haven't been working, which means B has been working his butt off. It was nice for him to get some down time, and for us to have some time to sit, relax, and reflect on everything we've been through this past year. And to have some time to talk about the future...bone marrow transplant talk and such. We have 2 different friends that live down there just 30 minutes apart so they let us crash at their places, which is nice because hotels are quite expensive. I stayed for 1 week and B stayed for 2. I told him to. He had 2 weeks vacation left at work to use up, and I didn't want to have the grandparents watching Z for 2 weeks, so I came home. Plus that would give B time to do some scuba diving. Since I started blood thinners I'm no longer allowed...which sucks. But he had some great diving in the Keys. When I got back the abdominal pain started again. The next day I was back in the hospital for 5 days this time. This time I had a 102 fever as well. The docs decided to start me on antibiotics. Some patients with PNH also develop liver issues like Budd Chiari Syndrome. (During my pregnancy my liver took one hell of a beating. It was completely full of micro-clots that couldn't show up in ultrasounds. Not until they did the biopsy did they realize how bad it had gotten.) Back to why I was admitted this time...the doctors aren't sure, but they think I developed SPD. They tapped my abdomen and withdrew alot of fluid. (Gross I know. Sorry.) After the 5 days of IV antibiotics I am feeling better. One good thing is that while I was in the hospital I received my first infusion of the miracle drug. My insurance finally agreed to pay for it! With tons of help from my case manager from the drug company. She was incredible. I've had 2 infusions so far and besides a urine color change I haven't really noticed much else. But if it prevents even one clot, I'm grateful. I meet with Dr. Know It All on Thursday and will have alot of questions about the upcoming future. Last month I had a message on my answering machine telling me that the national bone marrow registry had not only found me a matched unrelated donor...they had found me 4! I cried tears of joy when I heard that. I was always afraid of making the decision to have the transplant. But I put my faith in God and told him that it was in His hands. Most people can't find 1 match let alone 4! So I took it as a sign that the transplant is the way I should go. I'm afraid though, that since the miracle drug is now available the doc won't want to proceed with the transplant. I'm not crazy... I know that a bone marrow transplant could potentially kill me. But I also know that it could ultimately cure me as well. While this miracle drug is great and all it still is not a means to and end. And with my history of clots, I'd rather take my chances with the transplant. One bad year for a chance to see my grandkids and great grandkids. Sign me up.
Enough medical nonsense... Z is almost a year old! He is still not crawling and I still occasionally get sad about that. But that's my issue... not his. Therapy almost seems like a joke. This woman gets paid to play with my son for an hour. I do more with him at home, which is fine with me. But I still take him once a week. My insurance is changing in July so after that we'll have to find a new therapist anyway. Z has been eating baby food for the past few months. He's still not great at it. It really depends on his mood if he's going to eat it or just spit it all back out. Now with his 3 teeth it's hard to even get the spoon out of his mouth! Ah well... such is life, and we'll just have to keep working on it. Z also has gotten glasses. And I might add that he looks mighty cute in them. The eye Dr. says he has an astigmatism that causes one eye to turn in. So the glasses are to train the eye to be straight. If the glasses do their job he won't need them forever. Just long enough to train the eye. I will try to post a pic of him in his glasses soon.
Today was my first official mothers day. It was nice. My entire family went to church to see my nephew get dedicated. Then we went to their house for lunch afterwards. B had gotten me a photo album and had filled it with pictures of our first year with Z. Starting with my belly pictures! It was sooo nice. It's funny to look back on. My last belly picture was 25 weeks. And I had Z at 28... I really wish I had taken them weekly. Anyway the gift was simple, inexpensive and perfect. I cried. I love my husband.
Sorry I was all over the place on this post... just trying to catch you all up. Hope you're all staying out of trouble. :)
Let's see... since my last post, what has happened? Alright well, at the end of March through the beginning of April I was in the hospital again. Only for 4 days, this time no clot per se, which was good, but I was there for severe abdominal pain that was only manageable through some intense IV narcotics. Then the 3rd week of April my husband B and I went to Florida for a week, baby free. My parents graciously watched him for us. It was great to get away, just the 2 of us. Since I had Z almost a year ago now I haven't been working, which means B has been working his butt off. It was nice for him to get some down time, and for us to have some time to sit, relax, and reflect on everything we've been through this past year. And to have some time to talk about the future...bone marrow transplant talk and such. We have 2 different friends that live down there just 30 minutes apart so they let us crash at their places, which is nice because hotels are quite expensive. I stayed for 1 week and B stayed for 2. I told him to. He had 2 weeks vacation left at work to use up, and I didn't want to have the grandparents watching Z for 2 weeks, so I came home. Plus that would give B time to do some scuba diving. Since I started blood thinners I'm no longer allowed...which sucks. But he had some great diving in the Keys. When I got back the abdominal pain started again. The next day I was back in the hospital for 5 days this time. This time I had a 102 fever as well. The docs decided to start me on antibiotics. Some patients with PNH also develop liver issues like Budd Chiari Syndrome. (During my pregnancy my liver took one hell of a beating. It was completely full of micro-clots that couldn't show up in ultrasounds. Not until they did the biopsy did they realize how bad it had gotten.) Back to why I was admitted this time...the doctors aren't sure, but they think I developed SPD. They tapped my abdomen and withdrew alot of fluid. (Gross I know. Sorry.) After the 5 days of IV antibiotics I am feeling better. One good thing is that while I was in the hospital I received my first infusion of the miracle drug. My insurance finally agreed to pay for it! With tons of help from my case manager from the drug company. She was incredible. I've had 2 infusions so far and besides a urine color change I haven't really noticed much else. But if it prevents even one clot, I'm grateful. I meet with Dr. Know It All on Thursday and will have alot of questions about the upcoming future. Last month I had a message on my answering machine telling me that the national bone marrow registry had not only found me a matched unrelated donor...they had found me 4! I cried tears of joy when I heard that. I was always afraid of making the decision to have the transplant. But I put my faith in God and told him that it was in His hands. Most people can't find 1 match let alone 4! So I took it as a sign that the transplant is the way I should go. I'm afraid though, that since the miracle drug is now available the doc won't want to proceed with the transplant. I'm not crazy... I know that a bone marrow transplant could potentially kill me. But I also know that it could ultimately cure me as well. While this miracle drug is great and all it still is not a means to and end. And with my history of clots, I'd rather take my chances with the transplant. One bad year for a chance to see my grandkids and great grandkids. Sign me up.
Enough medical nonsense... Z is almost a year old! He is still not crawling and I still occasionally get sad about that. But that's my issue... not his. Therapy almost seems like a joke. This woman gets paid to play with my son for an hour. I do more with him at home, which is fine with me. But I still take him once a week. My insurance is changing in July so after that we'll have to find a new therapist anyway. Z has been eating baby food for the past few months. He's still not great at it. It really depends on his mood if he's going to eat it or just spit it all back out. Now with his 3 teeth it's hard to even get the spoon out of his mouth! Ah well... such is life, and we'll just have to keep working on it. Z also has gotten glasses. And I might add that he looks mighty cute in them. The eye Dr. says he has an astigmatism that causes one eye to turn in. So the glasses are to train the eye to be straight. If the glasses do their job he won't need them forever. Just long enough to train the eye. I will try to post a pic of him in his glasses soon.
Today was my first official mothers day. It was nice. My entire family went to church to see my nephew get dedicated. Then we went to their house for lunch afterwards. B had gotten me a photo album and had filled it with pictures of our first year with Z. Starting with my belly pictures! It was sooo nice. It's funny to look back on. My last belly picture was 25 weeks. And I had Z at 28... I really wish I had taken them weekly. Anyway the gift was simple, inexpensive and perfect. I cried. I love my husband.
Sorry I was all over the place on this post... just trying to catch you all up. Hope you're all staying out of trouble. :)
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