worring about my sister

[Beace]

Hello. My sister has myelofibrosis and I’m just trying to take care about her. Not so long ago, just a few weeks ago she started to take prednisone that was supposed to regulate her blood functions. She has three transfusions per week and because of this her organism ate up a big part of her blood, the main reason of the prednisone. Also her spleen is very large and bulge. Today she started to develop a new symptom. She became really anxious. Her ferritin level became really high and this week her platelets were only 22, so we were very scared about her situation. Our doctor said that we had to do an extra transfusion of platelets in order to change this situation. Also her hemoglobin has some problems too, usually her hemoglobin is about 54 to 56 each week and they transfuse it once per week with 3 units every time. This develops her hemoglobin to 92. Blood transfusions are a very problematic thing. She is reacting to this and her temperature nails up. Also there is something that I cannot understand: why she is becoming so thirsty? However my question is: What I can do for her? I know that she won’t get better if we will leave it in this way so I try to do the best for her.

 

[bravon]

Hello, Beace. Firstly, let me tell you that I'm really and really sorry to see about what your sister is going through right now and trust I’m feeling the same for you and her loved ones. I know how hard it is and I believe that no one deserves to go through such pain!  I know that this is killing emotionally you and your family, I know that this is so heart breaking when you see her suffering but you know that there’s absolutely nothing you can do for her.  The feeling of “useless” is tearing our soul apart. I know this because I was in a similar situation…

 

Honestly, despite of all my searching, I still don't know much about myelofibrosis but the only thing I’m sure about is that the myelo part it's exactly the same type of cancer: it appears out of nowhere, makes our loved ones to suffer and then it takes them from us. In fact I would say that it is one of the worst cancers possible because you cannot have an operation, chemo or cut out that part, there’s NOTHING you can do! It is in all over your body and once it gets into your blood then you cannot replenish it with anything. I never thought about any fatal diseases and I never thought that someone from my family would ever have it but…

 

Last year my mother had excessive thirst for about 2 weeks and we simply thought it was diabetes but we never thought that this could be a fatal disease. Later in turned out that she was suffering from aml She was immediately put under medical monitor in the hospital where she spend her last 5 months of her life. After the doctor’s diagnose I could also get me a self-diagnose: I was so emotionally involved that my life completely changed immediately after that diagnose. It was difficult to stay there and to look, but the aftermath results were even harder… I was sitting with her every day for as long as I could, I never left her alone for a minute without a good reason but there was nothing left to do… She died on June 21 2013. So much time passed but I still cannot get over it, I can’t accept this thing. Every weekend I go to the cemetery and try to speak with her, but, as always, no response. I know that it is very horrible to lose someone you loved! What makes me angry and kills me from inside is the fact that this terrible disease suddenly appeared out of nowhere and took her away from us. This is just so unfair!

 

I’m sorry if I told you something that can affect you but if your sister indeed has myelofibrosis then all I can do is to try to support you. That is why you can feel free to write me any time. If you’re interested I have a lot of other things to share with you. I honestly, wish your sister good luck and a ton of health. You must be strong, but I know that it is easier to say that to do. Good luck to all your family and I hope that a miracle will happen and you’ll see your sister back on her feet.

 

[18yearsold]

I have to tell you my story and to make you understand that there is always hope. MY mom had big problems with her 18 pound spleen that was removed some months ago. We were terrified about this situation and there were no hope for us, we thought that she will die and at the end we were prepared to this. But big miracle our surgeon told us that the spleen can be removed so we did this. At the beginning my mom’s platelet was 30, and after some days doctors decided to do another blood test in order to see the result and to control the situation day by day, so they discovered that my mom’s platelet level rose from 30 to 65.000. Obviously we all were shocked, it was quite impossible but it happened. For sure when we found out about this we had no more hope and we where sure that those were the last days of her life. Removing her spleen influenced this so much and raised her platelet too much.

 

After some weeks nothing changed, her platelet was quite at the same level as always 50000 or 70000, her weight was 135 pounds when she was taken to the surgery, during the intervention doctors removed approximately 30% of her body weight when they removed out her spleen, this obviously was dangerous, but our surgeon was one of the best and helped us very much. Nowadays she feels herself much better and we are very happy that we tried to remove this spleen and that now she is with us and that I can see her smile. I hope that all of you will have the same result, because this is really happiness when your parents are In a good health and that you can stay by their side much longer. Have a nice day.