Hey all. If you didn't already know, I have a lot of health problems. I am the first of a kind for a unknown condition. It is soooo frustraighting that I have every doctor stumped. I wish they knew how to treat this.
Basically, what is happening, is that my body repeatly forms large blood clots in my right ventricle of my heart which quickly calcify. When the clots harden like that they begin to break, then spread like tiny bombs and bombard my lungs(PE's> Pulmanary Embolisms). Small ones have already gotten into my lungs 3 times, causing notable lung damage and making it harder to breathe. However this is not the main concern. If the whole clot (4-6 centimeters) were to all break at once, it would undoubtably kill me in seconds.
I have already had 2 blood clots removed, my means of two open-heart surgeries. My last surgery was in March this year, the doctors did every thing they could to make sure that the clot WOULD NOT RETURN. The even removed part of the inner muscle of my heart, making it weaker but they viewed it as "worth the risk" to ensure it didn't come back. Well, I had a check up at the Mayo in August of this year......GUESS WHAT, THE CLOT CAME BACK!!!!!!!!!SAME SPOT, JUST AS BIG, JUST AS DEADLY!
I am living with the clot right now. I feel like a ticking time-bomb. So you can see why dating is hard for me, its hard finding anyone to even relate to my age.
I am really stressed right now because I have an up coming appointment at the Mayo on November 30th. I'll be gone for a week of testing, and to find out what the plan is for this time around. I hope I can celebrate christmas this year. Last year, my son was born almost 3 months early. I stayed with him alone, 350 miles away from home for 2 1/2 months. I really hope this christmas isn't as scarey, and I am not ready to go through that surgery again so soon. I feel like I just starting to recover from the last one.
Just thought I'd let you all know a little about me.
I'm so sorry you are going through this; it must be at times unbearably stressful. We don't know what God's plan is for our lives, but He has a special purpose for every one of us.
Here are some words I go to for comfort at times when I am anxious and depressed. They help me a lot and I hope you also find some comfort in them:
"You shall cross the barren desert, but you shall not die of thirst. You shall wander far in safety though you do not know the way. You shall speak your words in foreign lands and all will understand. You shall see the face of God and live.
Be not afraid. I go before you always; Come follow me, and I will give you rest.
If you pass through raging waters in the sea, you shall not drown. If you walk amid the burning flames, you shall not be harmed. If you stand before the pow'r of hell and death is at your side, know that I am with you through it all.
Be not afraid. I go before you always; Come follow me, and I will give you rest.
Blessed are your poor, for the kingdom shall be theirs. Blest are you that weep and mourn, for one day you shall laugh. And if wicked men insult and hate you all because of me, blessed, blessed are you!
Be not afraid. I go before you always; Come follow me, and I will give you rest."
Thanks Katie for sharing that. You will celebrate more than one Christmas, just be positive and everytime you feel bad, look at your son, I know hes gonna give you the strengh you need. If you need somebody to talk, just email me Blessings for you and your little son
Thanks Katie for sharing that. You will celebrate more than one Christmas, just be positive and everytime you feel bad, look at your son, I know hes gonna give you the strengh you need. If you need somebody to talk, just email me Blessings for you and your little son
Though I have fallen, I will yet rise. Though I sit in darkness, The Lord is my light.
I'm glad I have you all to confide in. I'm doing the best to try and ignore my problems. I pretend like they aren't there. So when I have these appointments its really a reality check-slap in the face. I hate being 23 and having a living will & advance directive. My biggest fear is if I suddenly died and my son was all alone. I worry even more now being a mother.
I think all mothers have that fear hun. I know I do and did before Daniel came around. I always thought that "What if something happened to me how would my kids be treated"? God will do what is best for you and your son.
hi katie, i know how you feel, im having a lot of health problems at the moment and im waiting for a operation now and further testing. it is a very stressful upsetting time.
goodluck and take care.
if you want to talk just email me as i know how it feels to be like this.
You are most welcome. All you can do is try to get by the best you can. And even though a lot of us don't have any readily evident problems, none of us knows when we're going to die. We could be gone in an instant, for any reason.
Although it would seem easier to try to ignore the problems, the best you can do is go to these appointments and follow the doctor's instructions, take whatever medications, and do whatever else is necessary to hopefully prolong your life as long as you can.
And maybe, for some peace of mind, you could try to make arrangements in advance for someone in particular to care for your son -- just in case. It would behoove all of us to have a living will, because we just don't know what the future holds.
My prayers are with you. Stay strong and try to have courage.
Yeah my son is my world! In 2 weeks He will be turning 1 year old! He is already showing an interest in opening presents. He has really come a long way since last year. Last year he was 3lbs 5 oz, and big for his age. Now he is a long, 20 pounder! Thanks for the encouragement.-KT
I hope by you posting your situation on site there just might be someone close by who would possibly want to meet you and/or be there for you should you need them. Im talking male or female. I believe these are sometimes angels in disguise. I have never heard of this condition. My P&T be with you and your family.
Thanks for the toughts & prayers. No one has heard of this condition. I have been tested for everything from cancer, Lupus, Lydin factor 5, All clottting disorders, Aids,Heart disease, I don't have any! They are writing the books on me right now. On a lighter note, after all is said and done, this condition will most likely be named after me.
I'm a true believer that everything happens for a reason, and that right now I am being tested for my strength.
PanthersKissMiddlesex County, Massachusetts USA967 posts
Hi welcome to the forums, as you can see there are so many wonderful people here with caring hearts.
I too will say a prayer for you, and trust me when I say I understand, when you have a condition that is not understood.
I am a mom to a little girls that has medical conditions that treatments have not been develope for.
If you ever feel like chatting, I too will be here for you.
No one can take your pain away, but with much support from here,
I hope you will be less lonely, you can make great friends, and the compassion, that I have found among my CS friends is really what sometimes keeps still being able to enjoy a laugh, even if I am facing a tuff situation.
Please visit often, and do not be shy to join all the discussions.
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If you didn't already know, I have a lot of health problems. I am the first of a kind for a unknown condition. It is soooo frustraighting that I have every doctor stumped. I wish they knew how to treat this.
Basically, what is happening, is that my body repeatly forms large blood clots in my right ventricle of my heart which quickly calcify. When the clots harden like that they begin to break, then spread like tiny bombs and bombard my lungs(PE's> Pulmanary Embolisms). Small ones have already gotten into my lungs 3 times, causing notable lung damage and making it harder to breathe. However this is not the main concern. If the whole clot (4-6 centimeters) were to all break at once, it would undoubtably kill me in seconds.
I have already had 2 blood clots removed, my means of two open-heart surgeries. My last surgery was in March this year, the doctors did every thing they could to make sure that the clot WOULD NOT RETURN. The even removed part of the inner muscle of my heart, making it weaker but they viewed it as "worth the risk" to ensure it didn't come back. Well, I had a check up at the Mayo in August of this year......GUESS WHAT, THE CLOT CAME BACK!!!!!!!!!SAME SPOT, JUST AS BIG, JUST AS DEADLY!
I am living with the clot right now. I feel like a ticking time-bomb. So you can see why dating is hard for me, its hard finding anyone to even relate to my age.
I am really stressed right now because I have an up coming appointment at the Mayo on November 30th. I'll be gone for a week of testing, and to find out what the plan is for this time around. I hope I can celebrate christmas this year. Last year, my son was born almost 3 months early. I stayed with him alone, 350 miles away from home for 2 1/2 months. I really hope this christmas isn't as scarey, and I am not ready to go through that surgery again so soon. I feel like I just starting to recover from the last one.
Just thought I'd let you all know a little about me.
-Katie