Living with Sarcoidosis

My father has been diagnosed with Sarcoidosis and his health is getting very bad. I do not know where to turn to try and get some help for him. I wonder whether he really does have sarcoidosis or whether ti is something else and the treatment is all wrong. As an example an allergy to a stent.

A little history. My dad never went to see a doctor while growing up.. He’s a mans man. He would grin and bear it through aches and pains. About three years ago while he was on top of a ladder at work installing windows he suddenly fell over backwards. He did not even try to catch himself. It is thought that he blacked out or fainted. The result was a severe injury to his lower back. He was lined up to see a specialist (1 year later - so much for Canadian Health Care).

In that 1 year he developed several other injuries. He was working under a vehicle when the jack gave way and the vehicle dropped onto him. This sent him back to the hospital - they said he was bruised but did not find anything else. He then had what was thought to be kidney stones When they try to dissolve then they found that the urinary track between the kidney and bladder was clasped. They installed a stent. Then discovered that his is allergic to plastics - They changed the stent every three months - very invasive.

In the meanwhile, the doctors kept increasing his dosage of pain medication. He was now experiencing pain from his back, the stent and abdominal pains that they could not identify. He started to get shakes. He could not control trembling and his hands kept getting very itchy. His legs would go numb and so he would go for walks. In a period of 3 months his ability to walk was reduced to simply standing up and then he could no longer bear the pain.

The back specialist appointment came ( that was a year and half ago now) - the doctor said that he qualified but that his body was too weak and he feared that sedating him would be very risky. Suggested waiting. His health has never gotten back to the point for them to consider surgery again. In February of last year he was diagnosed with Neural Sarcoidosis. The doctor that diagnosed him is not a sarcoidosis specialist but rather ALS He however gets referred to patients that are believed to have sarcoidosis. This since there are very few specialist in this area.

When this doctor began treating him my dad showed a marked improvement. This was in May June of last year. He had been in the hospital for since October 06. He was ready to go home - he had a day pass in which he visited family and was outside for the entire day. It was a nice sunny day. They following week his health drastically did a 180 turn. All the past three months of rehab disappeared.

It was thought that he had colitis or some form of bowel obstruction for which they were considering operating - they stripped him cold turkey of all his meds - he was in terrible pain and what I assume now was several withdrawal symptoms The doctors finally determined that it was not a bowel obstruction but rather an infection which had to be treated carefully with antibiotics. I am not sure when he was diagnosed as being MRSA positive. So treating him with antibiotics is tricky. He was nursed back to health to the point where they sent him to a smaller hospital. There he contracted a couple of infections for which he was quarantined - for the sake of others or him it was others that had an outbreak.

We finally were able to have the house renovated to be wheelchair accessible in May. He came home at that time. He still has a catheter, he still has the stent, he has oxygen generator in the house, etc. he has contracted an infection a couple of times that have sent him to the hospital. Once he was sent to the hospital due to an overdose of his medications. This as it turns out was due to the fact that he had a stool movement in a couple of days. He has a nurse that comes by the house every other day and a VON nurse to assist with bathing etc twice everyday.

His moral has diminished. His discussions are of his funeral; regrets in life about his short comings, his love for his family - strict instruction not to do any heroic efforts to keep him alive. He has a DNR.

His medications have been reduced drastically. ( Maybe too much to quickly ) He was on prednizone for a long time - every since he was diagnosed. In last four weeks he has been completely taken off them ( this is on part because of my suggestion that I did not want him on this drug - everything that I read suggests that prednizone is very bad drug to be on)

He was also on some psychotic drugs - that he no longer has. This may be the reason for his low moral.

The following are the drugs that he is currently on.

Fluconazole ( for diflucan) - 100mg daily ( for a yeast infection that was present in his urine - finished the dose this week)
Nitrofurantoin Monohydrate IN.M - 100 mg twice daily ( antibiotic treatment - just finished this week)
Alendronate Sodium (for fosamax) - 70mg once per week (for his osteoporosis)
Bisacodyl for Dulcolax - 20mg twice daily ( laxative to keep him regular side effect of all the drugs)
Hydromorphone HCL ( Dilaudid) - 2 mg @ 4hrs max - as required - ( pain killer - as last resort when he can no longer bear the pain )
Hydromorphone HCL Injection - 4 mg @ 2 hrs every two hours ( regular dosage of pain killer - anything less than this and the patch and it is unbearable for him)
Cyanocobalamin Rubramin - 1000 MCGM/1 - 1 per month - ( Vitamin B12 shot )
Fentanyl Transdermal - 100 mcg/h - change every 72 hours - ( pain killer patch )
Lorazepam Ativan - 1 mg - as required - ( given when he has not slept or can’t rest)
Baclofen - Lioresealos - 20 mg @ 4 times daily - ( muscle relaxers - his muscles tighten up and need to be massaged daily )
Citalopram Hydrobromide - Celexa - 20 mg @ 1 daily - (
Docusate Sodium Soflax - 100 mg @ 2 daily - (
Ferrous Gluconate - 300 mg @ 1 daily - (
Furosemide - Lasix - 40 mg @ 1 daily - (
Gabapentine Neurontin - 100 mg @ 3 daily - (
Nabilone Cesamet - 1mg @ 2 daily - (
Pantoprazole Sodium Pantoloc - 40 mg @ 1 daily - (
Potassium Chloride - 8 MEQ @ 2 daily - (
Preferred Calcium Carbonate - 500 mg @ 1 daily

As you can see this is a long list. Many to treat the side effects of the others. Most noticeable is the pain medication. A question that I have is - does he really have sarcoidosis? He is very prone to infection. Should he be on probiotics instead? My brother really likes and believes in the use of hyperbaric chambers. Is this a viable option?

Thank you in advance for your help.