Posted: 5/5/2006 5:08:56 PM EDT
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Until right now nobody here knows of my situtation. I have kept it quiet until this point because I don't like to burden people with my problems. I am not one to play the sympathy card either. With that said I will tell you my story. About 4 weeks ago I went to my doctor to try and get some relief of some kind from the pain in my neck. I was diagnosed with a disk between C5-C6 that is inpinging on my spinal cord. The pain at the time I went was gettting near the unbearable point. Unable to turn my head in any direction more than 5-10 degrees. I had also complained about a sinus infection. Along with that I was having dizzy spells, loss of apitite and getting winded very easily. At that point my doctor changed my acid reflux medication, put me on an antibiotic, an anti inflamatory, and a pain med. When I started the medication it seemed to help my neck, but my other symptoms got worse. Fast forwarding 2 weeks I had enough of the medication. I fugured the combination of this medication was making me feel sick. I was sleeping most of the time when I was not at work, etc. On April 22 (Sun) in the evening I started to feel better, so I decided to go to work. This was a mistake. I could bearly function. I told my boss I was going to the doctor. I went to the emergency room in Hartford, only to discover I was severly anemic. For those who know, my Hemocrit 5/15 and my platelets, were 40,000. They were not even sure how I was still functioning, let alone still working. Red flags went up and I was imeadiatly suspected of having leukemia. A bone marrow biopsy was done right away and I was hositalized and given 3 units of blood, then sent home the following day. Fast forward 2 weeks again and my apointment was here to get the final results from the biopsy and chromosome study. It turns out that I do not have Leukemia, yet. I have what is called Myelodysplastic Syndrome or MDS. Which is the pre-curser to getting Leukemia. I have a MDS in a very severe stage of it. I again was admitted in to the hospital at Freodert yesterday and given 2 units of blood. Today I had another bone marrow biopsy to check it's progression. While it seems to be progressing further into what will become Leukemia, I am not Leukemic yet. Which is still good news. I have been put on bone marrow transplant list now. Starting hopefully next week my brothers and sisters will begin getting checked to see if they are possible matches for me. I hope to find one in my family. The odds are good but not definitive. I will continue to need blood and platelet transfusions up untill the point of a possible transplant. I have been told that I cannot work which is going to kill me financially. My job only offers 3 weeks of short term disability and no long term to speak of. Right now I am freaked out beyond belief. I am not sure how things are going to work out or how I will pay my bills just yet, and I have a million things on my mind. Now that you know the story, here is how I could use your help. I would ask any and all here to get tested and put on the bone marrow registry. There might be a match out there, but you testing will help my odds. It is my understanding the you don't even need to be the same blood type to be a donor. The test is just simply giving some blood. Normally for this it costs between $60-$75 dollars to have the test done. I understand that there is a large scale marrow donor drive set to take place on May 12th and 13th. They are calling it a Mothers Day donor drive in which you can join the national bone marrow registry. It is my understanding that at this drive testing will be free. The drive is being held in several different locations and times. While you may or may not be helping me directly, my odds certainly increase with the number of people willing to be on the registry. You may at least be able to help someone. Here is the listing of the places and times you can donate. May 12, 2006 11:00am-1:00pm Milwaukee County Sheriffs Safety Building - Wolke Gym 821 West State St Milwaukee, WI May 12, 2006 7:00am-4:00pm Childrens hospital (Blood drive also) 999 N 92nd ST - 2nd Floor Wauwatosa, WI May 13, 2006 7:00am-10:30am 13th annual Women of the World Conference Italian Community Center 631 E Chicago St. Milwaukee, WI May 13, 2006 10:00am-2:00pm Kathy's House 600 N 103rd St. Milwaukee, WI May 13, 2006 9:00am-2:00pm Radisson Center 300 2nd St South La Crosse, WI I have never been one to ask for help. I have always been that way. This time I am in the fight for my life. I am 33 years old and not ready to give up yet. I hope some of you can find it in you to help a guy out. God Bless you all. Todd |
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Todd, I don't even know what to say my man... I am not sure I can donate bone marrow because I can't donate blood due to some Hepatitis thing when I was a kid. I am not a Christian, but I do believe in Karma, and if you are half the guy I think you are then you have some good Karma coming your way. I was wondering why I hadn't heard from you, and now I am sorry that I know. You have to beat this. I am not giving you any other option but to prevail in this fight. If there is anything I can do for you, please let me know. Dale |
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Will be making the drive to Milw. for this just cause. With that said everyone (who can) should also be giving blood when they can. If FT cannot get a donor quickly than he may need blood donations for a long time. If I remember correctly there is not a whole lot of blood in storage and more is always needed. Lemme know if there is anything else you need and keep us informed. If you are not comfortable posting on a public forum then IM the regulars but for goodness sakes don't try to go thru this alone. Keep your chin up (not sure where that saying came from becuase if you get hit on the chin you want your chin lowered not raised) and don't let things get you down. |
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WOW. Sorry to hear that, FT. I knew you had something bothering you, but had no idea that it was of this magnitude. Thanks for sharing. I mean ... I'm glad that you felt you could talk to all of us in this forum. You never looked unhealthy to me. Old lady's definitely feeding you okay. I don't know much about Leukemia, how does this happen? What causes it? |
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Todd, I'm not sure what to say. I'll make sure I get to one of the marrow registry sites. Glad you shared this with us. This kind of thing is not easy to talk about. Freodert is a top notch place, you should get good care there. I know my dad did the times he was there. Good to hear that you have the attitude to fight this. You don't have to be alone in this. I'm sure your family and friends are going to want to help, so let them. And you have friends here in ARFCOM land, let us know if there's anything else we can do. Thoughts are with you. |
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Now that the IM and email is off: Forgive me if the details are a little off, as IANAD. Now that FT has given you where he's at, I'm going to try to explain a bit of the process, and stress why getting on the registry (among other things) is so important; MDS is sort of a "Pre Lukemia" condition, in which the body doesn't produce enough, or produces deformed white blood cells. A common cold, sinus infection, anything can be deadly, as the body may be unable to fight it off. The great news is that FT's doc has caught it now, as opposed to after he may have developed full-blown Lukemia. Treatment will probably start with broad spectrum antibiotics, but that's a bit of a band-aid on a bullet wound. As stated above, FT will need a bone marrow transplant to beat this thing. I know that was a tough decision to make. FYI, MDS accounts for about 10% of the annual BMTs in the United States, with the rest going to full-blown cases of Lukemia and other rare blood diseases. Who ever is a match will have the same blood type, and as many "markers" as possible (out twelve or so). Prior to the transplant, the donor will take some drugs for about two weeks. They'll give you a headache, but they will increase your (adult) stem-cell output. Just prior to transplant, you're put on, in essence, a dialysis machine, that will "scrub" your blood of those adult stem cells. Then the fun part comes: You get a needle in your hip to suck out some bone marrow. While that is going on, the recipient will be undergoing chemotherapy to supress (kill) their own immune system. The stem cell rich solution, and the marrow will then be injected into the recipient's bloodstream. The marrow cells deposit themselves in the recipient's bones, and the stem cells will help them take hold and multiply. The recipient will be hospitalized and monitored for about two months. If everything goes well, there will be no rejection. The biggest complications come with "Graft versus Host Disease" (GVH). FT will probably be on antibiotics to keep GVH from rearing it's ugly head for at least 6 months post-transplant. "Milestones" for transplants are 1 month, 3 months, 6 months, 1 year, 2 years, and 5 years. At 5 years post-transplant, FT would be considered "cured", but that's kind of a misnomer: It's more of a cancer type "remission". Why do I know any of this? One of my best friends is currently 18 months post-transplant. I felt absolutely helpless while he was going through the process. With the Grace of God, he has not only survived, but his recovery has been described as "miraculous". Along the way he has set up an internet support group for folks with MDS and their friends and family. As a part of that group, I've seen triumph and tradgedy. MDS and transplants are not always 100% successful, and people can die. It's the sad reality, but there is light at the end of the tunnel. It's amazing what a positive and upbeat attitude can do. GET ON THE REGISTRY. If you can't make one of the test sites above, go to your regular doc. If you can't afford it but still want to get on the registry, IM me and we'll get squared away. DONATE your time, your money, or whatever you can to the Lukemia/Lymphoma Society. Every bit helps, even if it's an old laptop, so that someone stuck in a hospital room for two months can surf Arfcom. There are constant "walkathon" type fundraisers going on. We could all use the excersize. COMMUNICATE. Make FT sick of hearing your voice on the telephone, getting your emails, etc. Personal troubles like this can make someone withdraw. Don't let that happen. FT needs to be remembered: in prayer, in thought, and in deed. If we need to back off for a bit, he'll let us know. Todd, I think I can speak for the HTF when I say that whatever it is that you need, let us know and it'll be done. We're here for you and will support you in every way that we can. You will beat this. -Kris |
Todd-- Please check your IMs and contact me. |
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Hello Todd and everyone, My name is David I am 39 and I am the friend that Kris (FMD) referred to in his post. I was diagnosed with MDS a couple years ago. It would have developed into AML (acute myleoid leukemia) had I not been hospitalized a year earlier with a severe bacterial infection. After a month in the hospital being treated for the infection, multiple blood tests, and too many bone marrow biopsies (aren't those fun Todd?), I was finally diagnosed. So treatment began before my transplant. Besides multiple antibiotics too fight the bacterial infection and prevent further bugs, I was put on some drugs designed to boost blood counts. Mainly Aranesp (Procrit) for red cells and Neupogen for white cells. I also took Thalidomide which stabilized my counts but had some bad side effects. Some new drugs such as Vidaza are on the market now and have had some success. About a year elapsed between my infection and my transplant. After checking my 3 siblings as possible matches, it was found that we are all half matches to eachother. The odds of that are incredible to say the least. They continued searching and quickly found a person that the doctors referred to as a "perfect" match or 12 out of 12 (based on current points they look for). She was a 24 year old female and probably of similar ethnicity. Of course, the whole time I am going through this I am thinking, "How on earth am I going to pay for this stuff?" I had no insurance and my parents certainly aren't rich. When I got the final bill from St. Francis Hospital for the bacterial deal, my legs turned to jello. It was close to $275,000. That was just the hospital bills. There were also 5 specialist doctors putting in their time too and looming on the horizon was the next round of treatments for the transplant. WARNING TO ANY AGNOSTICS AND ATHEISTS... This is where the Almighty comes into play :) Somehow I knew that God hadn't carried me through that infection and the chance at a transplant just to be burdened financially for the rest of my life. So I took advantage of the "jello legs" and got on my knees to pray. I simply explained everything to Him... the bills, the disease, everything. I just asked for help and it came. Now, I'm not a huge advocate of social programs, but some money we put into taxes do go for good causes to people who need it, and I think we would be remiss if we didn't use those resources when we need them as long as it is in a legal responsible manner. After a lot of homework, paperwork, and help from above, I was able to get some financial aid. I feel blessed. I am almost two years post transplant now. I want you, Todd, to know that if I can do anything for you, you just say the word. Kris gave a link in his post to my website. Please feel free to join. That goes for anyone. When I see the outpouring of friendship and offers to help you, it hits close to home. Because for me, that is what got me through it all. I am like you in that I never thought I would need help and don't like to have to ask for help from anyone. I was a "Rugged Individualist". Well, I found out that it is ok to ask for and accept help from those who care and love you. Sometimes the hardest part is just accepting that help. The best part though, is when you get a chance to give it back :) I told Kris that I could feel an army mobilizing behind you. He called it a "Fire Mission". You can count me in Todd. Double_D Superabimus "We shall overcome" |
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I've some experience on this, so I'll chime in too. I got on the registry a few years ago while donating blood, figuring there was no way I'd ever be a match. I found out last summer that I was a preliminary match for someone. They took additional blood samples and it was determined that I was the best match available for this person. I got additional bloodwork along with an extensive physical. Everything looked good so we were given the go ahead for the transplant. Here is where a lot of misconceptions come in. Everyone had been telling me how painful it would be, and how they didn't think they could go through with it. Actually a high percentage of transplants involve NO surgery. It depends on the condition/situation of the donor and recipient. In my case they felt that a surgical marrow draw was unnecessary, and PBSC (peripheral blood stem-cell collection IIRC) was the method of choice. Four days prior to donation, I started getting shots of filgrastim to boost production of the cells they would be collecting. The side effects were mostly flu like symptoms. I went in early Monday morning for the first day of collection. Essentially they do a draw like you are donating plasma, one line out, the appropriate cells are harvested, and the remaining fluid goes back in through another line. This took about 6 hours plus prep time. Tuesday I went in for the final collection. Same process as Monday. The collection time varies by individual, but I was done about 2PM Tuesday. Other than being very worn out, there were no side affects/symptoms. So far everything has gone well. For confidentiality purposes, they do not release contact information to the donor and recipient until the one-year anniversary of the transplant. All I know is that there's a 60 year old male somewhere out there with my immune system. If all goes well, I'll find out who he is on September 13. Flamethrower - Keep your chin up. They are adding people tho the registry every day, and that means more available matches for you. They'll find a match out there somewhere. ETA: For those wanting more info go to www.marrow.org |
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I just wanted to say thank you for all of you who have responded. This is a very tough time in my life right now. As tough as you think you are, when you get news like this it is a crusher. It really puts things into perspective. All thoughs things you thought were important, suddenly become unimportant. I feel so trapped right now, it's got me going crazy. The doctors want me to avoid children, and sick people. Avoid gettting cut. My platelets right now are so low that I have to monitor myself to make sure I don't spontenioulsy start bleeding internally. Melissa does not want me doing anything, but sleeping, watching tv, or playing on the computer. To some that may soind like a dream. But it is not. I have done most everything for myself, now that it is getting warm out, I want to be outside and doing things. I will have to see what the doctor says on Tuesday. To give you an update, I was released from the hospital on Friday afternoon. I have another appointment on Tuesday with my oncologist(sp?) to get more blood drawn and try and see what kind of scheduel I will be on for blood transfusions until the time I go in for a transplant. I am hopping to see the transplant specialist this week as well, but that has to be preapproved by my insurance. Insurance is going to be a big battle through this whole thing. PX I know you would help me if you could, but right now all I want out of you is to get your ass back in one piece. I am not sure if I have any of your blood, as I have not had any desire to throw any of my rifles against a wall yet.  Tommy and Kris give me a little time and I will call. It has been a little difficult to talk to many people and keep my composure. I want to talk to both of you. DD no the biopsy's are not fun. But you knew that. I asked for drugs on my second one. I got 2mg's of morphine and 3mg's of Adavan and I was wide awake. It had no effect on me. It seems one of my Oncologists is overjoyed and how pretty and colorful my mutatded red blood cells are out of my marrow. So happy in fact she had to tell me about it. Pleople think I am different. I can use all of the help I can get right now and I am interested in finding out what kind of programs there are out there that you had mentioned. I am not sure exactly how to get a hold of you but I am sure Kris will point me in that right direction. My mother said something strange on her death bed a couple of years ago when she was dying of cancer. The family was all gathered around her. She had been incohearent for dyas. Doped up on all kinds of things to keep her comfortable. She had a brief moment of lucidity when she said "You let Todd do what he wants. You all have to take care of him." Than she said she loved us. That was the last things she ever said. I wonder if she what was going to happen to me? Thank you all who are on the registry already. Thank you all who are willing to get tested. I have never lost a fight yet. I am not going to lose this one. Todd |
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Todd I wish I could help you out but a few years back I found out I have hepatitis C It is dormant thank God and I know how you feel because at any time it could become active. I will include you in my prayers and offer any kind of support I can Im in Racine I don't know where you live but if your close and ever need rides or something like that feel free to ask. It seems that you have a strong spirit keep it up and keep FIGHTING! God bless you & yours. Mark Phillips |
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I'll probably end up sounding like a broken record before too long (showing my age now), but I don't care :) Todd, I know exactally what you are going through. There were so many thoughts, questions, and emotions going through my head that I couldn't think or see straight at times. I said, "Why me?", "What do I do now?", "What will I do about this?", and some other things that shouldn't be repeated here... :) Going through a situation like this really does jar a person and cause them to focus on what is important in life. After reading your posts, I see you are confronting it in a realistic and honest way. It is very humbling experience I know, but you are also keeping a sense of humor about the whole thing, reaching out to others, and have said you won't give up. These are your tools buddy. We aren't going anywhere Todd :) Double_D |
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Bump. Also, take a look at the tacked "Firemission" thread at the top of page one here in the HTF. www.ar15.com/forums/topic.html?b=8&f=21&t=231975 Both AnnieO and I will be getting registered, and Drawcut and None have expressed interest in doing the same this weekend. Hit the poll, and let's see your preference so that we can show some community support for Todd! |
I'm going in too. Todd, CALL ME. |
| FT...you are in my thoughts and prayers and I know everything will work out for you...you seem to have a good attitude and you seem to have kept your sense of humor...I am new here and haven't had the pleasure of talking with you before but I wish you all the best...I went through treatment for lymphoma and have been in remission for 3.5 years so keep up your good attutude about it and having a sense of humor about things really helped me...again you are in my thoughts and if I could donate marrow I would definitely be the first to do so but unfortunately my history of lymphoma prevents me from doing this...if you need anything feel free to contact me anytime. |
Please folks:
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Flamethrower il be hitting childrens hospital in a few hours to get tested and donate some blood,is there any paper work they will give me back with the test info that might help you? iv never got tested yet so i dont know about the paper work. i also have a few guys from work that should stop by for testing, jessi said she would but shes due in june mabey after she pops |
Sorry I did not see this in time. Did you end up going at all?? My wife and her friend went. Turns out they don't even take blood anymore. They did 4 cheek swabs, and that was it. |
yep i went and got added to the reg and also gave a pint of blood wile i was there |
Add another six arfcommers to the "cheek swab" list. Ran down to "Kathy's House". They weren't taking blood, but we did get on the registry, and were able to meet your sister, Todd. Here's to finding a match soon! 
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Sorry to jump in here but I feel I need to do something to help out, I have been a memeber of Grid.Org for many many years now doing cancer research on my 8 computers, 4 of which are dedicated "crunchers". We all here have computers with idle cpu cycles, why not put them to use trying to find a cure? I am not here to advocate or advertise for anybody or anything I just feel that in addition to our very much needed support of Todd in his time of great need we can all help 24/7/365. Read the info here www.grid.org/home.htm and decide for yourselves if you would like to help Todd and others stricken with this terrible disease, I have lost my mother and other close friends and family members to cancer, Todd, hopefully a donor will be found for you so you can carry on with your life with some normalsy, I will donate and join the donor list, hopefully I will match someone in need, I believe in God and I am a christian, with prayer anything can be accomplished, so I will pray for you Todd, may Gods peace be with you. Rob |
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FT....my thoughts and prayers are with you brother...question...do you know if the same goes for us here in Illinois...as far as the registry etc?? I'd be more than happy to help out... If you don't mind, I'd like to post this on IllinoisCarry.com, IllinoisLovestogoshooting.org and icarry.org. Please let me know if this is ok with you.... Peace and God's grace be with you and your family during this difficult time... mack |
The marrow donor registry is an international effort. You could be a match for someone in the US, or on the other side of the globe. If I remember correctly, most marrow matches (when not related), are from the same ethnic (genetic) heritage. |
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From what I heard there are matches like 1/10,000 so it takes a lot of people to make very few matches. Most people don't know or care about marrow matches and are not on the donor list because of cost / belief that it will hurt a lot when giving marrow (it does too). Bottom line tho is that even if you are a match for someone you do not know you are still saving a life (even if you never meet the person) and knowing that is a great feeling. |
the way i look at it...even if i cant help Flamethrower mabey il match someone eles and i hope someone they know might match Flamethrower if ya know what i mean...im a little gone tonight
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I am very sorry to read this. There are no words that one could say other than that I am sure I speak for everyone here when I say our thoughts ans prayers are with you. Just keep a positive mind. The power of the mind can overcome many things. Good luck to you and keep us all posted. Mike |
| My wife & I will keep you in our prayers. Don't let this beat you mentally. You can and WILL beat it. God Bless You And Your Family!! You have a lot of people here wishing you the best and praying for you. Good luck and don't ever doubt your ability to beat this. |
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FT, Sorry to read of your news. I've been in the registry for about 15 years and have been pulled twice for further match testing. Unfortunately I didn't make the next cut either time. Nothing would please me more than to end up being a donor for someone, you included. It is good to post this- the registry needs the numbers. --Prayers to you and hope for successfully finding a match soon. cohutt, rome ga |
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Hello, Flamethrower Iam sorry for the crap you have been going through the last few months, I would give some blood, but my schedual & works keeps me really busy and long needles are not my thing. But, after reading , I kinda know what it's like to be poor, not be able to work or pay bill, so. I would be ahppy to donate my services FREE of charge to you, if you or someone you know might want to organize some type of benefit fundraiser for you & your many mounting bills. I own a DJ service in Green Bay, I do mostly weddings & parties. So, if this would be something that you would like to do, I am more than happy to help out & I am sure many of the other WISCONSIN AR15.COMers would be able to help out too in some form. Lets all get together on this, and help FLAME out, either giving blood, or time, or money. The guy needs our help. so let's get on it. If anyone has ideas on a fundraiser in his area, let me know, maybe we can get a date down and go from there. I'll pray for your speedy recovery, I am 36 and 33 is way too young to get sick like that. I hope we can all pull together. email me if i can be of service. |
Check the tacked "HTF Tshirt Fundraiser <<Arfcom Firemission!>>" thread at the top of this forum (and every other HTF). It is also tacked at the top of General Discussion and Team. I also believe that some of our members will be passing a hat for Flamethrower at the Shicton shoot happening in a few weeks. There is also talk of a blood drive to happen somewhere around Independence day. We'll keep everyone up to date on future fundraising efforts, as there are several more in the works. As an FYI for all: The latest update direct from Todd is avalable in this thread. The last time we spoke with the family, Todd was having some difficulty with the Chemo treatments, but we were also told that one of Todd's sisters is a match.  IIRC, Todd will be meeting with his doctors soon to schedule the BMT. |
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Yep, I just printed out the order form for a T Shirt, will be getting it in the mail Monday, You have the rite idea, Tshirts sales, Pass the hats & future raffles are truely awesome ideas. I comend you for your efforts. But, his Medical bills will be in the tens if not over a 100 thousand dollars after all is said and done, so If anyone out there wants to do /organize something bigger to raise money, my offer stands. KEEP UP THE GOOD WORK EVERYONE, EVERY LITTLE BIT HELPS. Todd, I hope your feeling a little better. |