No peg for me

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Pam,

Well done on your description of Andy's procedure! This seems like it may be just what the doctor needs to order for Pdaddy!

I never cease to be amazed at the wealth of experience that is shared here.

Zaphoon
 
PDaddy ... Pamnandy's description sounds like the way they do it at UCLA, where they put you on a kind of x-ray table to guide the placement. PLEASE get a second opinion on this. Hospice may be a good step, but you need to have everything in place BEFORE hospice to give you the maximum quality of life. Could you get transferred to UCLA or Cedars ?

And I agree with Thelma ... what the hell was your pulmo guy thinking, to not keep on top of the situation.

But it's not over till it's over. In June, Paul and I signed a contract with a local hospice, at the suggestion of our insurance case manager. (There was no money-saving motive on the part of the insurance, of course. :-() Paul's kidney function was 22% and my FVC was 36%. I'd been fighting a defective BiPap and wrong-size masks for 6 months, and was declining very quickly.

The next day, Paul's kidney doctor talked us out of hospice, saying he thought improvement was still possible and it was not time to stop fighting. I called the hospice and cancelled it for both of us. Now after 3 months of using a BiPap all night, my FVC is up to 45%, and after a Hail Mary minor surgery on Paul, his kidney function is up to 44%.

These treatments for ALS ... BiPap and PEG ... aren't miracle workers, but they improve strength and stamina and quality of life. You may still want hospice ... but do everything you can to get a PEG first.

Praying for a solution ...
 
My wife's was not quite that low, but they ventilated her during the procedure and all went well.
 
This is Diane, Pat's wife writing. The doctor said the reason he didn't do the vital lung test was because Pat showed no signs of respiratory distress. When we expressed interest in a peg, that is when he had Pat do the test, and referred us to a gastro dr. at Loma Linda. That doctor wanted us to see a lung doctor, but they wouldn't give us an appointment until Pat had a chest x-ray and some other test first. All I could think of was that you have to stand up for a chest x-ray and I told them Pat couldn't do that. No one told me that it could be done another way. I found out later it could. They told me that someone would call me after the two doctors talked it over. I waited, but no one called, so I called them back. The doctor we saw was not there, but another doctor said that they were referring us to radiology and to expect a call from them. No one called for a week. Finally, someone called from radiology and asked me a bunch of questions, and then kindly explained that if they did the procedure their way, they would do it with a general anesthetic and with Pat's VLC he most likely would not breathe on his own afterward. But they wanted to talk to our neurologist first. Again I waited for a phone call, but none came, so I called the neurologist to find out if they had consulted with the people in radiology. I had to leave a message and my call was returned days later. All this back and forth and waiting for calls to be returned took 6 weeks! During this same time, we were also waiting for the Bipap Rx to be faxed to Pulmo Care. I would call Pulmo Care to see if the Rx had been faxed, but they said it had not, so I would call Loma Linda and leave a message to check on it. They finally said that they didn't see an order for one, but remembered doing the VLC test. They finally got the Rx faxed and then asked us to come in for an appointment the following week. They did the test again and it was lower than before 15%. (However the test was done late in the afternoon, and our respiratory therapist said that a test done that late in the day would not be expected to have a good result.) The doctor said that he could call and check if the gasto doctor would be willing to do the peg with Pat on a Bipap, but the gastro dr did not think that would make any difference. I told the doctor that if our choice was to do the peg and risk Pat not breathing on his own, I'd rather not do the peg and keep him around as long as I could. So then he asked if we wanted Hospice. He faxed the order for Hospice and we are done at Loma Linda. He gave us no hope at all that the peg could be done without risking breathing problems that would force us into an end of life decision.

Last Monday, we were in the ER because Pat was in horrible pain in his lower back. They think, but can not confirm that he has a kidney stone. Our family doctor is now our only doctor, and he isn't convinced that it is a stone, and gave us an Rx for antibiotics. Now here is where I am angry! Pat can't swallow the pills! If he had had the peg, I could have given him the meds through the peg.

I hope this explains all the questions about how this all came about. But I think we got lost in Loma Linda's system as we were shuffled about from specialist to specialist, and in the process they wore me out. I did have an appointment with another doctor for a second opinion, but we canceled it as that was the day Pat got out of the hospital, and he was in pain.

Right now we are focused on getting Pat out of pain, which has been severe. Although we are in Hospice and it may seem like we have given up, at least the Hospice nurse returns calls on the same day, she is compassionate and caring. Thank you all for your concern and encouragement to seek a second opinion. After this crisis of Pat's pain is over, maybe we can think about it again, but right now we are going through hell with his pain and I can't think about anything else right now. I can't stand to see him in pain. I am at the end of my rope with doctors and I know you are all trying to be encouraging, but it just reminds me that I have not done all I could for my dear husband. It is a regret I will have to live with for the rest of my life.
 
Diane, it is most obvious that you are an extremely loving and caring wife. It sounds like you have done all you can and then some.
I know how it can be with all the doctors and phone calls, etc.. Please do not blame yourself for anything or have any regrets!
None of us here would ever want to make a loving caregiver like yourself feel that way. We are here for you. Post anytime and let us know how we can help.

Linda
 
Diane,

The love you and Pat share is so evident! Just the way he talks about you, and the photos of your two together speak a thousand words. Don't ever EVER think you're not doing enough for him. I've said so many times on here before, that I'm so glad that its me that is sick rather than someone I love. You have the hardest role to fill imaginable.

It does sound like Pat fell through the cracks. We all know "it" happens, we just don't want it to be with someone we know. If the source of his pain can be found, and he can become more comfortable, then you can think about the other stuff again. After he's been on bipap for a while, his readings should come up. It really does help with the fatigue and weakness.

Please keep us posted until he's up to it again, we're really fond of him. (hugs!)
 
Diane, I am so sorry that you and Pat have had to go through this medical hell. You have been a magnificent caregiver.

I apologize to you both for trying to pressure Pat about this ... we are all so fond of him, and anxious about him, and never thought about the bigger picture. It is terrible that he is in this pain, too. Thank heavens hospice is there to respond and do all they can to keep him comfortable.

I'll be praying for him ... and for you. Thank you for connecting with us and explaining the situation.
 
Diane,
You are doing everything for your husband. I can't tell you how many times a day that I feel that I am not doing enough...when in reality I am doing everything. Caregiving is often putting out the fire at hand. Please do not put so much pressure on yourself. The immediate issue is to relieve him of his pain. My heart breaks every day watching my husband suffer from this crazy disease. So, do not be so hard on yourself...no one is judging you. I can totally relate to how you are feeling....if you ever want to chat (like you have time) ...I am here for you.
Fondly,
Kelly
 
Diane, you said that your husband can't swallow the pills. Can you get the antibiotic in liquid form? I remember we used to get that kind when the kids were little. Banana flavor. Please don't beat yourself up. You are doing your best for your husband. It's not your fault you are getting caught in the middle of hospital beurocrasy.(Don't think I spelled that right).
Colleen
 
You know, hubby's doc was very concerned about breathing % as well. If I remember correctly this has something to do with the diaphragm. I wish I could remember more about that conversation, but he just touched on it since Greg's % was ok.

Peace to you,
 
i agree with- trying to stay positive- - and when you dont know ... you just dont know..not your fault ...we just care and you understand that and so does he at least i hope .... the 2 of you do .. you both have our love and prayers.
 
My heart goes out to both of you. I wish I knew the perfect thing to say. I hope for comfort, both physical and emotional, and I hope you find decisions that feel right in your heart.
 
Diane & Pat,

Are these the doctors connected to the local ALS Rehab center ? If not , call them and explain what is going on. They might be the people to snap these other doctors back to reality and give Pat some quality care.

You are doing a fine job taking care of Pat , its those professionals that are not being so professional. Take no prisoners , go after them.

And I must say THANK YOU for your post. It clears my thoughts for Pat.

Get well soon Pat. Keep up the awesome work Diane.

Glen
 
Hi Diane, Thanks for posting and updating us on the rest of the story. My heart goes out to you and Pat, and certainly the priority here is to get him out of pain! How very agonizing for you, I can see how desparately you are trying to prioritize and care for each and every need. The last thing I wanted to do was make you feel inadequate. We all were just responding to what Pat had originally wrote. I wish I knew of an advocate who could represent you both and get these issues resolved. You are only one person, and you are doing way more than you think. Truly, you are Pat's Angel. Unfortunately, us caregivers fight a losing battle, ultimately, given the outcome of this disease. Pat has expressed his love and gratefulness for you on here. Please take it to heart and don't beat yourself up. One day at a time, right? Hang in there, and please know I'm praying for you both! -Pam
 
Dear Diane,

You are doing the ultimate best you can! Don't blame yourself for the incompetence of others!

Both of you are in my thoughts and prayers. Please let Pat know we are all thinking of him and hope he is pain free soon!
 
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