Author Topic: very rare autoimmune issue in friend--need prayers  (Read 8064 times)

loulou

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Re: very rare autoimmune issue in friend--need prayers
« Reply #15 on: July 05, 2008, 12:01:20 PM »
Hi Irish

I offer my prayers for your friends family its unbelievable that sick people have to fight so hard and push for should be done with no hesitation, it simply not fair.

I pray for a positive outcome for him.

TAke care
Loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

YICKelly

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Re: very rare autoimmune issue in friend--need prayers
« Reply #16 on: July 05, 2008, 12:08:15 PM »
Add my prayers too.  I am sorry I missed this post the last time I was here.  But. I will pray now for the family and for the ability to get the care he needs!!  You are wonderful to do all that driving!  Prayers for a safe trip for you also.  Please keep us updated.

LenV

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Re: very rare autoimmune issue in friend--need prayers
« Reply #17 on: July 05, 2008, 03:45:57 PM »
Irish,
It just breaks my heart!  I get so fed up and disgusted with the medical field.  I know there are good medical  personnel.  I've had a few of them.  But it seems that the bad outweigh the good. 

He's in my prayer box.  God will know his name.

You be careful please.  We need you.

Billye

irish

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Re: very rare autoimmune issue in friend--need prayers
« Reply #18 on: July 05, 2008, 09:29:59 PM »
Another update that makes me feel better. My relative called the wife last evening and it turns out this fellow had a better day yesterday. His pain was down from excruciating to bearable. The wife got the little wading pool out for the girls and the neighbor kids came over so there was kids laughter and fun going on.

That evening the wife fixed up the back of their small SUV and managed to get him in it and they went and watched the fireworks. It made me feel so good to know that they could have such a good day after the past week. Monday the wife will start back in on the quest for IV therapy for him. She said if they put in a PIC line she could do it at home and it would be so much easier than trying to transport him.

I want to thank you all for your prayers as I feel they have been working in his life. I would appreciate it if you would continue as you see fit. They have a long row ahead of them. Thanks again. Irish ;D

fatburningmachine

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Re: very rare autoimmune issue in friend--need prayers
« Reply #19 on: July 11, 2008, 08:55:25 PM »
The prayers will continue. I have been wondering while I was gone how it was going. Hopefully things will be uphill from now on.

irish

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Re: very rare autoimmune issue in friend--need prayers
« Reply #20 on: July 13, 2008, 10:16:02 PM »
An update on this fellow situation. My relatives left the beginning of the week to visit and get things in motion. It seems that the fellow ended up in the hospital again on July 5th and was in really bad shape with pain and lots of extra limb movements that were so bad the bed moved.

The wife was exhausted. My relatives said that the neurologist did not think that this patient needed to go to Mayos as "they won't do anything". Anyway, there was a lot of conversation and it ended up that my relatives helped get things in motion and he was transferred to Mayo's on Wed by ambulance. I guess he had his IV's pulled for some reason for the transfer. He had been medicated well when he left and it was about 2 1/2 hour trip. He ended up in a room at St. Mary's ER in Rochester waiting for workup and admit. However, he had to wait 3 hours with no IV and no pain med plus he was in a room with no TV, no call light, no nothing. Anyway, they finally got to him and he got admitted.

By that night he had improved. They have him on IV's and it was a blessing in disguise to have him to without pain meds and IV's as the docs got to see him in agony. He has had MRI with dye and nothing has showed up on that---I have always wondered if he had a for sure diagnosis on the MS. When his brain scan came back clean he quit taking his IM medication for the MS that he may not have.

The docs thought about sending him home until Wed when the head of the department comes back but he can't live without the IV's and he is not stable so he is to just wait and they will run some tests. Hopefully, they will find out why he is having these spinal cord leaks and get that problem addressed. Otherwise, it makes one wonder how much good it will do to patch the leaks. I guess they inject some glue into those leaks. Will be interesting. Prayer is certainly still needed as he is not out of the woods yet. At least he is comfortable. They drugged him up and he took a shower for the first time in a couple weeks. He said the shower was worth the pain.

I have to tell you this though. My relative is something else. She and hubby were there when the doc made rounds. I guess the neurologist was quite arrogant and know it all. My relative told him "one of us is going to leave here on a stretcher and it isn't going to be me". In other words, the doc was not going to win this round cause it was time for the patient to move on and get diagnosed. The doc wasn't too happy about being callenged.

They asked the doc what the plan was for the patient and he didn't have one and hadn't had one for the past 3 years. He admitted this. I guess I am just totally freaked out by some of the doctors responses to patients. I don't know if he thought this guy was making up the pain or what.

Will keep you posted on the surgery etc. Irish ;D

Katybarstool

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Re: very rare autoimmune issue in friend--need prayers
« Reply #21 on: July 13, 2008, 11:55:15 PM »
Irish

That sounds absolutely awful - th epoor man, and his family. My prayers aare definitely with him.

Kathyx

navydad

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Re: very rare autoimmune issue in friend--need prayers
« Reply #22 on: July 14, 2008, 08:56:03 AM »
first rule of thumb for doctors is do no harm, seems they thrive on that now,,

Scottietottie

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Re: very rare autoimmune issue in friend--need prayers
« Reply #23 on: July 14, 2008, 09:56:11 AM »
Hi Irish

I'm so sorry this is happening. poor man. Keep us posted for for sure. I hope they change their attitude and sort out what's wrong.

Take care - Scottie
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loulou

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Re: very rare autoimmune issue in friend--need prayers
« Reply #24 on: July 14, 2008, 11:11:40 AM »
Hi irish


Its just incredible how this man has been treated, its bad enough that he is dealing with tremendous pain, but to have to deal with all the uncertainty of what is happening.

I continue to pray for him and for his family. I pray his health will improve and be relieved from pain.

TAke care
loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

Sjenny

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Re: very rare autoimmune issue in friend--need prayers
« Reply #25 on: July 14, 2008, 04:54:56 PM »
Dear Irish:

My heart goes out to this young man and his family.  Prayers are continuing.

Sue

irish

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Re: very rare autoimmune issue in friend--need prayers
« Reply #26 on: July 16, 2008, 07:19:06 PM »
I have just received information on this fellow and it is not good news. My heart is aching for them. Now that this is getting so much more serious I will tell you that this is my middle son's BIL that is sick. Son lives next door to us in the country. Jerry's (the patient) folks just brought the 2 girls to my son's house an hour ago. They will be here for an unknown length of time. I will have them tomorrow and feed them along with my grandaughter. My BIL and SIL from Mesa are here living in their trailer in the front yard for 6 weeks. They will be good about helping with the girls also.

Jerry's specialist came back today and examined him etc. The word is that it is a basically inoperable situation. Mayo has never done a surgery this complex. They are afraid that he will get infection and have damage that will cause him to be in pain and need multiple fusions on his spine. The chances of this is 50-50. They have done this surgery at California at Mount Sinai but Carol and Jerry are trying to wrap their brain around this whole situation. It was devastating to them. Jerry says he can't live like this any longer. The question of going to California is how would they get him there as he can't sit up any longer than 20 minutes. What will they do for money if they go out there as Carol will not be able to get back to Wisconsin to work part time. What will they do with the girls for a long, long term thing.

Jerry has stated that he is willing to have surgery on just the lower part of his back in the lumbar area. Try it and see how it goes. This is where the worst leak is. Surgery in the lower area will be about 6-24 hours. The good news is that he has not had any brain damage nor is there any flattening of the brain which would be a very, very serious situation. I am thinking that with the flattening of the brain he could be prone to have a herniation of the brain through the larger "foramen" (hole in bony part of upper cervical spine base of brain) where the spinal cord enters the base of the brain. This is basically a fatal situation.

I would be so greatful if you folks could keep them in your prayers. This has thrown them for a loop and the rest of us feel that way also. Thank you so much. Irish
« Last Edit: July 17, 2008, 09:21:18 PM by irish »

Katybarstool

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Re: very rare autoimmune issue in friend--need prayers
« Reply #27 on: July 17, 2008, 05:50:22 AM »
Irish

I am so sorry to hear of this poor man's situation. I will continue to pray for him. Remember to look after yourself, as well as the little ones.

Kathyx

irish

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Re: very rare autoimmune issue in friend--need prayers
« Reply #28 on: July 22, 2008, 09:47:12 PM »
Just an update on Jerry with his spinal leak which goes from his lower spine to his cervical spine.  Some areas are leaking more than others.

Our son took their 2 girls over to Rochester on Sat to spend time with their folks and the plan was for them to stay there with them. Last night at 10PM Jerry started having seizure like activity again and she had to get him into the wh/ch they have that folds out flat for him. She had the 2 girls with her and they had to go through a more narrow crosswalk with 4 lanes of traffic and up the long sidewalk to get him to the hospital.

He was admitted and had blood patch at the Mayo Clinic today and then sent back to the hospital. The blood patch has already failed. The head surgeon is back from vacation as of last week and he has refused to operate also. There is the possibility that they will attempt to fix the lower part of the cord only--just to do the part that is leaking the most. The wife Carol is just exhausted and at the end of her rope from the stress of all this. The youngest girl is worrier and will be hard to console.

These 2 girls and my grandaughter will be over here tomorrow while DIL works. This is getting to be an unbelieveably long haul and a decision has to be made whether to transfer him to cedars-Sinai or to attempt a fix here. Jerry is also at the end of his rope. I would appreciate more prayers as this seems to be an endless situation at this point. Thanks for all the prayers and well wishes you have sent their way. Hugs to all of you. Irish ;D
« Last Edit: July 23, 2008, 07:06:57 AM by irish »

Katybarstool

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Re: very rare autoimmune issue in friend--need prayers
« Reply #29 on: July 23, 2008, 05:47:03 AM »
Irish,

I'm so sorry to hear this news. It seems there is no end of trouble for this poor man and his family.

They are firmly in my prayers - and you too.

Kathyx