Wednesday, May 15, 2019

Wistful Wednesday: 2013

This is a photo of Far Guy and Chance before Far Guy was diagnosed with Alpha-1 Antitrypsin Deficiency.

2013
We have returned from The University of Minnesota. 

We have a few more hoops to jump through.   Pathology reports from a previous Colonoscopy and possibly a Colonoscopy.  PSA results.  They will call us when we get the go ahead for a week long visit for numerous other tests.  The Lung Transplant Specialist sees no huge roadblocks for a transplant at this time.  One day and test at a time. 

Far Guy has lost even more weight.  The Doctor was young...in her 30's.  She said Lung Transplants  are one of the most difficult transplants.   Many people don't make it through the surgery, many don't live a week.  Some die within the first year....those that make it a year live on the average of 7 years.  She was quite brutal with the facts. Recovery will be difficult because of his age.  Anti rejection drugs are hard on your kidneys, there are three forms of rejection.  Cancer is a concern when you are on anti rejection meds. 

She said something that I have never heard a Doctor say before.  " Everyone has cancer, our bodies natural immune system fights it off all the time."

Far Side

27 comments:

  1. Not sure that doctor has an ounce of empathy in her. Tom has known two people who have had lung transplants. The transplants gave both of them additional years that meant a lot to them. One got to see his son play football in high school and get a scholarship to college. The other who had been born with a serious lung condition, had some years of breathing better and seeing her young son as he grew for a few more years. For both of them the operation was worth having.

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  2. Sending prayers for you, Gene, and your family.

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  3. The doctor could have at least given you some hope. I know I would want the truth but at least give me some positive hope . Prayers and positive thoughts being sent your way.

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  4. What a great photo of Far Guy & Chance. I know you treasure it.

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  5. I agree with Pauline. Brutal, you do want to know the real facts, not the fluff. It will be a hard, challenging road. But you can make your decision from there. My friend's mother lived to see her grandchildren turn from babies to school children. She bought enough time to see them walk and talk and have conversations with her. Moments they will always treasure. None of us know what is in store for us. No one knows their expiration date. But an informed decision is what you need to make. God Bless you both and guide you to the right choices. So sorry you are both going through this.

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  6. I am not sure how I feel about a doctor being so brutally honest like that. Yes, it is good to know the facts, but there are so many other ways to help a person make such a momentous decision. I love that picture of the two of them and I would cherish it also. Sending you my love, my heart is filled with concern for you both.

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  7. That's a little too much honesty for me. My doctor keeps wanting to show me sane of my lung aanaand I say no.

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  8. Recently my husband saw a doctor for a colonoscopy this was before his pulmonary emboli event. She was honest in saying that she didn't feel it was necessary as he wouldn't survive any cancer treatment if anything was found.
    I understand ... I think how hard this is for you both. Thinking of you.

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  9. Yes, everyone has cancer cells in their body.... and many "outside forces" can cause our bodies to not be able to fight them & keep them at bay so they start growing out-of-proportion. That's when the cancer cells "make themselves known".

    Yes, lung transplants are hard. I don't think I'd tackle it at my age of 62. I'd just continue with prescription medications to help my breathing, make adjustments in life for my difficulty breathing, and use oxygen when needed. Both my dad & one of my brothers died of lung cancer and I now have calcified granulomata and scarring fibrosis in my own lungs (which I have yet to get checked out... by choice). So you can tell I've thought a lot about this whole "breathing" subject. I'm notorious about just letting the chips fall where they may, without getting on the "medical hamster wheel". I have no patience for doctors, hospitals, tests, treatments.... and I'm a retired RN so that's odd, I know. I guess I know too much.

    Good luck and blessings with all the choices you & your husband make. Follow your intuition. It won't fail you. XOXO Love, Andrea

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  10. Personally, I prefer doctors who give me the facts, even if they are hard to hear. It's important to know what to expect before making difficult decisions. Blessings as you take in all the information and make your decisions.

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  11. There's a difference between providing the facts in an empathetic manner and brutal honesty. I guess she's decided to go the latter. Far Guy and you have decisions to make and I'm hoping for the best outcome.

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  12. That's the scientific viewpoint. They go just by facts and the odds, etc. I'd rather hear it so I know, but then I also keep in mind that it is their medical version. I remember them telling me that Dagan was going to die soon--period. Very outside chance of reaching two years old but "he will never live to be five and you have to just accept that fact". But they don't take into account love, hope, and faith. There are always people who beat the odds...even if we all eventually do end up with the same ending.

    My uncle had cancer in his heart and lungs. They told my aunt to gather all the kids from around the country to say goodbye and weren't sure they'd make it there in time. He lived for months.

    My girlfriend's mother was sent to hospice to die and lived there for over four years!!????

    And I have known of circumstances where the person was physically so miserable they seemed to choose to leave earlier than doctors predicted. (Not sure I wouldn't do the same, to be honest, after living with constant pain for going on two decades.)

    You never know how anyone's life or death will go. But I deeply, personally believe it is the combination of both medical science and personal faith that can keep people going beyond the doctor-odds. But having a surgical option can be like the brass ring in your hand.

    I have never relied solely on a medical opinion. There are always people on the outside of the curve. They've told me that Dagan could die on the table and we have had to sign away all responsibility for the surgeons three times so far. So I hope that science and all the people praying for FarGuy will help land him on the far side of the curve.
    *love and hugs*

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  13. That is a great photo of Far Guy and Chance. I have read through all of the comments. You have been given so much wonderful advice and many opinions and I can add nothing. Except that I am praying for you both. Life is so difficult sometimes and there are no black and white answers to any of it. May you feel God's loving arms around both of you as you make these choices.
    Blessings and love,
    Betsy

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  14. Such a nice photo of Far Guy and Chance. Wow - I'm thinking that your doctor visit was a very unsettling one for sure. Hugs to you both as you make some tough decisions.

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  15. Such hard news to hear. Praying for you two. May you see the blessings in your life as well as the trials. May God give you HIS peace in all of this.
    Jean

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  16. I know these are difficult days filled with fears and questions. We will pray every day for you and Gene. With love, Mildred & John

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  17. The doctor was harsh but I do believe you need to be aware of all possibilities. A better bedside manner would not have hurt though. These kind of things are such personal decisions. You have to weigh all the possibilities and consider all the options. Only you two know what is best and even that knowledge may not come without much thought and prayer. It is good that these days there are options and choices. And I always believe there is hope. Keeping you both in my thoughts and prayers.

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  18. I was just going to recommend a book I've been reading...The Art of Dying Well by Katy Butler. It's very good and goes along with my philosophy of 'dying well'...we'll see how I do but I already refuse certain meds, most all tests and after watching my parents and what they went through before they died....I will most likely and hopefully not get the hospital system involved if I can help it. Living alone helps....no one to call 911. I tell people here 'don't ask a question you don't want the answer to'. I think your doctor was more than frank with you. I'm not sure how Far Guy feels but it is his decision. I for one, would not put myself through it...those are not good odds and there will be suffering just having it done but that's me. I would read that book though...it might help.

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  19. I've been reading your blog for many years and I know this is my first comment. I didn't realize your wonderful husband had AT-A1. My brother was diagnosed with that several years ago. His manifested itself in his liver, not his lungs, which I now know is far more common. After a few miscues he did receive his liver transplant and that happened nearly 3 years ago and he is doing well. He is 70. I wanted to let you know that there is great hope beyond what we can sometimes imagine. I truly wish the best for you and your husband.

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  20. Wistful is the right word for this post

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  21. That's a really nice photo of Far Guy and Chance.
    I've heard that we all have cancer that our bodies are busy dealing with. Makes me feel guilty for not eating more healthy foods.
    You sure got the brutal facts from that doctor. She sure gave you the worst case scenario.

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  22. Beautiful photo of Far Guy and Chance. Hard decisions ahead but hopefully you will have all the information and facts you need along with a healthy dose of hope, love and peace to do what is right for you. As always, you are in my thoughts and I wish you continued strength and patience as you travel down this road.

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  23. I agree that is a great photo! Sending prayers as you and FG go down this journey.

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  24. Such a nice photo of Chance and Far Guy and better times. The doctor’s statistics must have been very hard to hear and i hope thE “facts” were tempered with some compassion. Sending love and prayers ....

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  25. Those look very cozy for some tiny occupants. I’m sure they are appreciated by the organization you send to.

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  26. Wow...what a lot of heavy thoughts in that one paragraph. My prayers for the best for both of you in this situation. You have a lot of family and friends holding you up; that makes a big difference, too.

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie