Did anyones symptoms begin in the respiratory?

[Zina Perry]

Mike's condition

Well the new doctor was very nice and told me more in 10 minutes than the other doctor has said since October. Although, he told me the only way he would consider letting Mike out of the hospital is if he went to a nursing home. He is retaining fluid which means his heart is not doing all of its job and they are having to control his blood pressure with medicine. If they back off of the medicine the least bit his blood pressure drops low. The doctor has set up a conference with me and my sons and the neurologist for this afternoon at 5. I know what they are going to tell me and as long as MIKE PERRY is alert and knows what is going on he will not be sent to a nursing home of taken off the respirator. After we have the conference I will discuss his condition with him and what he wants will be the decision. God bless each of you for your support and I pray for you daily. I might not be home for a few days but will check back as soon as I can. All of you are wonderful people and are very supportive.

God Bless,
Zina

 

[hopingforthebest]

Dear Zina

Praying for you and the boys and of course Mike. Asking God for wisdom for you all!

Take care of yourself also!

Patty

 

[CindyM]

I am thinking of you and your family today, Zina. THere are no right workds in a situation like this. Hugs, Cindy

 

[Zina Perry]

Round three

Well I came home tonight to get some rest. I fired doctor number 2 yesterday. He was a member of the same group as the other (((&^&%. All they want to talk about is being removed from the vent, nursing home and then hospice. I told him he was just trying to get rid of me and that Mike would go home and if he would not do that when the time came that he could leave. He said he felt we had no patient/doctor trust. After 11 days of battling with these idiots, I demanded to see the chief of doctors. They called him and put him on speaker phone and I ask him if he could come to the hospital because I prefer to look in the eyes of someone when I speak to them. He came and I told him that doctor 2 had told Mike that his only choice was to be removed from the vent, nursing home or hospice. How long does he think hospice will allow Mike to be on a vent? He also told him that he would have to sign a DNR and that he could not come back to the hospital with pneumonia, bed sores or any other problems. He is not God and does not own the hospital. I told him to get out and not to come back. Doctor 3 showed up today and she was very kind, informative and was concerned about Mike NOW. Although, because she is a member of the same group, she has to stand by the choices. The head doctor told me that Mike could leave when pneumonia is clear and blood pressure is controlled. He also said that I should not have to fight for what the patient wants. He also told me that the new group did not want to assume responsbility and they were looking at group 3. I know its because of Mikes loving wife but I will not settle for less than what Mike wants. He said that they could not keep him and they would discharge him when he was ready. I asked him to put it in writing!
I know that someone must have left that hospital with a vent before. I also asked if they thought that I could not take care of him. The neurologist wants to try an IVTP treatment on Mike. He is kind, compassionate and is trying to help Mike get better instead of killing him. He also told me that Head doctor would step on some doctors toes for what they said to us. You know that man loved being called back to the hospital on a Friday evening. I told him if we had not researched and learned that hospice would discontinue the vent we would have had problems. I ask him how many people had died because of these people not knowing they had other choices. Please pray for Mike and now I do understand mental anguish.


Zina

 

[MtPockets]

Zina please go read my comments about my experience with Hospice at: https://www.alsforums.com/forum/showthread.php?t=5383
Maybe this will help you. They basically told me they would help me die comfortably, but normally only covered someone for 6 months. I guess according to them if you live any longer than that, tough luck.

I'm sorry you are having such a tough time with this.

 

[brooksea]

Zina,

I pray that I have your strength when times get tough!

I hope your husband recovers from the pneumonia and his blood pressure stabilizes soon. Please keep us informed and let your family know we are pulling for your husband!

I know your husband must be so very thankful to be married to a woman such as you.

 

[CindyM]

Your husband and family are lucky to have you in their corner, Zina. You are doing what we all wish our loved ones would do for us if needed!

 

[rose]

Zina, I just cry for you every time I read your posts. I'm so sorry that you're in the position you find yourself in! Your husband is blessed to be loved by someone like you. Do try to get some rest! you know how many germs are floating around a hospital just waiting to get to someone that is run down. I hope your husband recovers from the pneumonia and the blood pressure is able to be better controlled! (((lots of hugs!)))

 

[fiddleplayer51]

Zina,
You shouldn't have to fight so hard. It's ridiculous! I truly admire your persistence and ability to state your case with unrelenting strength and determination. Stay strong! Many people are thinking of you and your family in this horrible situation.
Jane

 

[Zina Perry]

Mike's condition is improving

Mike's xray showed that the pneumonia was better and they have begun the autoimmune treatment. They come in once a day and turn the respirator the the settings that were on his bipap and he was able to breathe 15 minutes. That's not long but considering the fluid and pneumonia I am pleased. He is ready to sit up in the bed and they will not allow him to do that but maybe after the trach is in. ALL of the doctors are being so nice and doing their job. The nurses are wonderful and when his favorite nurse came on duty I decided to come home and sleep in my bed tonight. I want to thank each of you for your concern, comments and prayers. He is a fighter. He won the battle with carcinoid cancer and he will continue to fight. The neurologist told me that really did not know what caused the diaphram to be paralyzed. He said it looked like ALS, but he had never seen the onset in the respiratory before, but tests do not confirm, but there is nothing else to look for. He said if it looked like a horse and walked like a horse but it might be a zebra. He will continue to support me and care for Mike until the end. God bless each of you and your families and have a great week.

Zina

 

[fiddleplayer51]

Zina,
This is great news. I know you must be exhausted and maybe now that you don't have to worry quite as much you can get some much-deserved rest. You're a true inspiration as you go all out for your loved one. Mike is very lucky. Thanks for posting all the trouble you've had and the various run-ins with doctors. Freely posting such information can be a real encouragement & give strength to others in their struggles trying to navigate the medical world. Your persistence paid off. I wish your family well as you continue on this journey.
Jane

 

[hopingforthebest]

prayers being answered

Dear Zina

Have been praying for Mike unceasingly! God is good! May he keep up the good work!

God bless him and you during this fight for his life!

Patty

 

[Zina Perry]

Home again for the night. Mike got his peg line put in yesterday and his trach today. The new doctor has ordered physical therapy and is trying to wean him from the respirator back to the bipap. His diaphram is producing 18 to 24 per cent of the breath and the setting is on 34. They have him on every other breath and today he made it for about 3 hours. Many prayers have been answered and I pray that he will be able to go back to the bipap, but it will be long road to travel. He is a fighter and I know he will do the best he can. He can inhale 33 per cent and exhale 18 per cent. That is not much, but only time will tell. He still has a lot of fluid and today is his final day of the 5 day auto immune treatment. The new doctor was shocked to learn that he could use his arms and legs. He must have been told by the doctor from***& otherwise. He said it is unusal for ALS to be in the diaphram and no where else. I still think this was caused from his neck surgery in 2006. Of course, they will not pursue that theory because he had his surgery at the same hospital. Need to close and get some rest. God bless each of you and you are in my prayers.

Zina

 

[brooksea]

Zina,

As Jane said, thank you for sharing all of this with us, as it could help us down the road!

Hope you get well deserved rest you need.

Please keep us informed.

 

[checkmat2]

Hi Zena

Yes my husband symptoms began with his breathing and his muscle started to go away as well....he is 45 years old and self employed...he gets extermely tried when he walks a few steps.

Christina