Shocking/Devistating News

[CBowman]

Hello everyone, today is a sad day. I am at the Mayo clinic for a second look opinion on my diagnosis of ALS. Well my family and I met with the nerologist (no names for protection) told him my story of starting symptoms on 9/25/06 till now being wheelchair bound. I also told him of my recient breathing problems but thought they were pollen, anxiety, and maybe a little ALS but the past two nights I coulded sleep because of the breathing issues. After his physical exam and everthing, he told me I was at the end of this disease and have 6 months left to live. I was shocked 6 months into my ALS symptoms and he said I had 6 months left to live................ I thought he was going to say that I needed a bypap, but 6 months to live. I am 34 years old and freaked. My breathing is bad, but 6 months left to live. I hope he is wrong. :cry:

Shocked and Devistated
Chad

[lunarruna]

Chad---Well, we are sooo sorry to hear your news, what a blow for you. This disease sucks.

I guess I am surprised to hear your doc put such a time frame out for you....as it can be so variable. Also, people can live for a relatively long time on bipap....just look at Mike (Quadbliss) on this site---he stretched out his bipap time to two years!! So, I am not trying to contradict your doctor, but I just want you to know that many people have had different experiences than their doctor predicted. I am very glad you know about this cite and so you can read up on others experiences and also get lots of support. There is also a good yahoo site, Living with ALS.....
http://health.groups.yahoo.com/group/living-with-als

We are all with you as you accept this grief, but we will also be here to help you stay as healthy and happy as you can for as long as you can. Attitude is so important and you sure seem like a strong person.
.....You take care, Beth

[midwestgirl]

Chad, I am so sorry to hear your diagnosis. There are no words that seem adequate at a time like this. Remember that doctors can not predict exact time, it may be longer. My thoughts and prayers are with you for the strength to enjoy each and every day.

[hboyajian]

Chad, I am so sorry to hear how rapidly this is progressing for you. That must have been a terrible shock for you and your family. However, I agree with the others that no doctor can put out a sure time frame for your life. Also, there are choices that you can make to potentially extend your life. I think bi-pap is one of them, and I find it unusual that the doctor did not mention this option.
Did they do a pulmonary function test? It is the loss of function in the muscles that operate the lungs that is the cause of death in many ALS patients. The other is loss of ability to eat and drink, but this can be taken care of with a feeding tube. I do not know the details of your condition, so maybe you already have one. They should, imho, also do blood tests for oxygen and carbon dioxide levels as not enough of the first and too much of the second can indicate imminent deterioration of your ability to breathe on your own.
Also, if indeed your lung function is approaching a severe level of impairment so as to require artificial ventilation, I believe this option should be presented to you by your doctor and discussed honestly. Only you and your family know if this is something you want to consider, and it may take time to work out the details of the 24 hour care you would need.
I hear your concern about wrapping up the details of your working life. That must also be extremely difficult. Is there anyone who can help support you through this? You are probably the only person who knows what to do if you own your own business, but maybe someone can go with you, and you can direct the action from a comfortable chair.
I helped my dad sell his business 2 years ago when his ALS symptoms were getting pretty bad. It was too exhausting for him to do alone.

[Al]

Hey Chad. I really don't know what to say other than I have never heard of a Doctor giving a timeline like that. Bipap is an option or a vent. Did they even discuss that with you? Think positive and keep fighting. Ask to see another Doc at the clinic if you have to. This sounds screwy to me.
AL.

[MagnusD]

Keep strong and positive bro...
Praying for you

[CBowman]

I am also in the process of getting a bipap. I am in a sleep study right now, I had the blood test yesterday, and the FVC test yesterday. The plan is to get me a bipap tomorrow.

My entire als experiance has been fast, my breathing is also going at a rapid rate. This is very scary to be given 6 months by one of the top neros at Mayo Clinic in MN. Its not like some quack nero gave me 6 months..........

Devistated and Scared
Chad

[ltr]

Hi Chad,

Forget he said that and get on with your life. Why did this doc say this to you? Did you ask him how long he thought you had? Docs don't usually say something like this unless the patient wants to know because of the impact it can have on you mentally, but especially physically. Your mind can be the power to live longer and almost all docs believe this. I know the hospitals I worked at in my city, they all believe this as a medical fact. So, please, as devastated as your are, try to put that statement away and put effort into proving him wrong. I am praying for you to have the strength. Leslie

[liz]

Chad -

Is it possible the doctor gave a six month time frame to make you eligible for hospice care?

Either way, I'm so sorry to hear how fast your disease is progressing. I can only imagine how difficult this must be for you and your family.

Liz

[hope]

chad,

Our hearts go out to you. I am sorry you are in this horrible disease. My husband has als and is very ill, the words do not come easy. We are holding on and praying very hard that a cure will soon be found. Please know you are in our thoughts.

hope.

[Sunshine]

Hi Chad, I am so sorry to hear that. I pray that the doctor is wrong. My prayers and thoughts are with you and your family. Sunshine

[joelc]

Chad, please don't let him talk you into only having 6 months! Prove him wrong!
I am into my last 3 weeks of my 2 month diagnosis and do not plan on making their prediction come true!! I am on a bipap now and it is breathing new life into me - I plan on being around years from now and watching all the doctors and neurologists eat their words.
Be careful of anxiety as well, it can make things seem so much worse than they actually are. Monitor yourself and how tense your body is, then try to totally relax. It could help a lot.

You are in my prayers! DON'T GIVE UP!!

[caregiver0204]

Hi Chad, love your name.
My husbands Dr. gave him 6 months to live over two years ago and he is not on a Bi-Pap. Wishing you the best.

[JenniLee]

Hi Chad!

I must apologize because that doctor's words are unacceptable to me. He does not have the power to foretell that. He may have an opinion based on experience, but my friend, this is your experience not his. I agree with Leslie & Joel....PROVE HIM WRONG!

Go for another opinion. It doesn't even have to be in state. Make an adventure out of it if you have to with your family. But go see another...not so you can hear what you want to hear, but, just for you.

Regardless, and eitherway, do you understand what this "condition" means? It means it is time to "condition" yourself. Take care of yourself! Not the "dx". But YOU! Take care of your heart, soul and mind.

I re-write his dx to say "you have 6 months to take the best care of yourself that you can and we'll see you back then". So, dear Chad, go to a retreat or spa. Get a massage, get some accupuncture, go to an energy healer....anything you can think of to help health your mind.

I am not saying you are not allowed grief...I know that feeling....feel it and respect it, then work with it. Don't ignore it, just put the grief aside when you're ready and meditate on you, your health, your most magical place to be, your family, whatever it takes to feel soothed.

It's all about you!
Jen:)

[bogey]

chad- keep your spirits up that doc is not god,they are like weathermen there wrong as often as there right.my friend darryl was told in 1996 he had 1 to 1.5 years and its 2007 and he's still here. bogey

[JLH Alabama]

Chad sorry, However remember doctors practice, forecast is really yours. Good luck Jim

[CindyM]

Chad- I cried when I read your post. If there is any wiggle-room for a better prognosis let's find it! Hugs, Cindy.

[Jamiet]

Chad,

This guy cannot predict the future. We all know with the people we talk to, many of them have fooled the doctor, and i will be talking to higher powers for you!

Call me when you get a chance, my cell is working..

Keep the faith and take care.....

Jamie

[CBowman]

Thank you everyone for the kind words, I really appreciate it. It has been a rough couple of days.

I found out today that my breathing is between 78% and 88% (normal breathing is between 90% and 100%). I am going to sleep in the hospital tomorrow so they can monitor me to see if I qualify for a bipap.

I saw a nurse today and a social worker to go over living wills, disability, als association, and MDA association, etc.

I saw another doctor who wrote scibes or tickets for a hospital bed, wheelchair comode/shower chair, and pressure stockings.

You are right, I need to prove them wrong and enjoy these next 6 months. The breathing thing is especially bad when I exert myself to much. I need to manage my life make it as comfortable as possible.

My fiance and I set a date to get married for next Saturday (yes the day before Easter). Her freinds are setting everything up. She is taking time off work to be with me and with a 6 month diagnosis, hospice can be called in to help. I am trying to live my life the best I can. We are making modifications to the bathroom.

Thanks everyone for the kind words of encouragement, I would like to invite everyone to the wedding. You are all very special caring people.

Thanks again
Chad

[BWk]

Chad, Make the best of the time you have left and it sounds like that's what you intend to do getting married and all. And I hope your wedding goes smoothly for you and the bride. Barry

[ltr]

Congratulations on your marriage this coming Saturday! I hope it is one of the best days of you and your soon to be wife's life. Best wishes, Leslie

[Beebe]

Hi Chad, Just want to tell you my son-in-law Jack had the same dx. DR. didn't even wait for us to get there, told Jack you have ALS and have 3-6months to live. Go home and save your strengh for what you like to do and get your life in order. That was a year ago. One day at a time no one can predict how long . Congratulations on your upcoming Wedding. May you have a Long and Happy Marriage. My best to you, Beebe

[CindyM]

Hi Chad - always wanted to ask you if you'd set a date and now here it is upon us! Congratulations to you both! You're a great couple and deserve a wonderful wedding and and long and happy life together. All my best, Cindy

[nsmith555]

Chad,
Congratulations and best wishes for your wedding and new marriage. As far as what that doc told you - like so many others have said - disregard that and make every day count! Only God knows the number of our days and so far, I don't think He's delegated that knowledge to any doctors!
Stay strong and faithful. Dwell on all the great things in your life and in the world - like your upcoming nuptials!
God Bless!
Nicki

[patricia1]

Dear Chad good luck on your wedding and dont believe that rediculous dx noone knows the future and by your symptoms I dont know why he said such a thing I was told 2 years ago I would be in a wheel chair and I am still walking Believe me that dont know. They go by a medical book and generize. We are people not books , Live your life youll be here next year to tell that jerk he was wrong,God Bless Pat

[Paty]

Hi Chad:

I agree with everyone here, doctor's are not God, how did that doctor dare tell you that you have six month's to live, like someone said if they cannot Dx this awful sickness how can they tell you when you're going to die.

Hold on, enjoy your marriage, your wife and LIFE.

Sincerely,

Paty
Husband's caregiver DX 10.17.05
Baja California, Mexico

[rcharlton]

Hey Chad,

Hope you have a great wedding.

I got married after my dx as well - but I was not faced with your brutal timeline.

Sounds like you are approaching all of this in the right frame of mind.

As you already know - it is best just to take one day at a time with this disease.

The long term does not look too rosey for any of us - I try and not look more than a few days or weeks into the future at any time.

Who knows where any of us will be in a year's time - but you have a lot to look forward to as your wedding approaches.

As a PALS - every second is valuable to us and makes us appreciate every moment. Since my dx I have experienced more love, laughter and passion than I did in my entire life up to that point. I'm sure in whatever time you have left you will experience more of life and love than most people do in a lifetime.

Plus - I always tell myself - you never know how you are going to die. Whenever I stress about my fate - I think to myself "What if after moping about ALS all the time I ended up getting hit by a bus? I would feel pretty stupid wasting all that time getting depressed about dying from ALS only to actually die from something else".

I friend of mine had it all - beautiful wife and kids - successful career - then BAM - dead at 42 in a snowmobile accident - All our lives our precarious - at any moment any one of us could drop dead from some accidental cause - is there any point worrying about that? No.

The hospitals are full of people who have been given hours to live and there are people all over the world being subject to unimaginable horrors all of whom would trade places with any of us in a heartbeat.

Please don’t think I’m trying to minimize your situation – most people – myself included – would have just crawled into a foetal position and resigned themselves to dying.

You are doing amazingly well.

Congratulations and have a great wedding.

Richard

BTW -- When I got married last August - I told the minister to take out the part of the vows dealing with "for better or worse, through sickness and health" but was pressured to put them back in - I told them it was not going to be pretty. When we got to that part in the ceremony - I was sobbing like a baby - and I just could not get those vows out of my mouth - finally after what seemed like hours I squeaked them out - it was torture and there was not a dry eye in the house. I was able to joke about it afterwards.

On a lighter note – I bought suits for myself and the grooms men from at an amazing sale – only problem – they only had 44 inch waists for the pants – some of my friends have 34 inch waist and tailors refused to alter them – it was pretty comical

[Teej]

Hi Chad,

First of al CONGRATULATIONS on the wedding! That's awesome! I am so happy for you. Second of all, I wanted to tell you that my husband's breathing capacity has been at below 50% for the past year or so, jumping between 33% and 48% some days, and they are call his a slow progression! Usually they base things on the diaphragm strength too, but your breathing capacity sounds outstanding to me.

Also, consider a vent. That can extend you life by years. This disease is a strange one, going from rapid to slow progression overnight. Did they give you Rilutek? That slows the progression for some people. Hang in there and GOD BLESS! Teej

[emjoi]

Just is all just too sad.
No one deserves this.

I just wish peace for everyone who knew the guy.

[ltr]

He only had symptoms since 9/06. I just can't believe what happened to him and how hard it was for him to get help. This is so wrong.

[Meg1]

I just wanted to add for anyone reading this post later that we were notified of Chad's death on April 3, 2007.

[CBowman]

Hello everyone. This is Chad's fiance, Kelly. Chad passed away on the 2nd of April. We came back from Mayo on Saturday and on Sunday Chad was in the hospital. He was placed on a vent and as many of you probably know, this was not Chad's desire. As such, he was taken off the vent in the very early morning on Monday. It has been rough for all of us. He thought of you all as family and was comforted by your words. Please feel free to email me at k_wasmer@yahoo.com

[CindyM]

Kelly-my most sincere condolences on the loss of Chad. We on the forum were looking forward to hearing about your wedding. It is obvious Chad loved you very much. Cindy