Confused granddaughter looking for answers

[Jimbob]

eve,
He has not posted since jsut after he was here in June. He was very positive at that time but he was not doing well when we last spoke. He had just gotten out of the hospital and was too tired to even talk much. Time seems to be a blur but I think that was about 6 weeks ago. I have tried to call him since but his cell number has been disconnected with no forwarding number. I just sent an email. Hopefully he will soon respond to your question himself.
Jim

[uno grasshopper]

Hi Jimbob and all of John Hess’s friends:

I’m not at all good about this sort of thing. After reading that you tried call John and that his cell was disconnected without a forwarding number, I got very concerned and called his home. I spoke to Cheri, his wife. She told me that John passed away on September 25, 2006. Apparently his Sweet’s Syndrome was too much to handle. It kept moving from one place to another until it appeared to end up in his lungs, and he developed pneumonia. There are a lot more details in between, but in the end while being hospitalized for pneumonia, his kidneys also failed, and he passed.

John touched many lives, including mine. For those of you inclined to pray, please remember to put in a word for Cheri. She is absolutely heartbroken.

Marla

[Jimbob]

Marla,
Please let Cheri know that there are many of us who were shocked to hear of John’s death and offer our condolences.
Jim

[Bkwits]

My deepest sympathy to John’s wife and loved ones.
Barb

[patti]

Marla,

In my gut I knew something was wrong. Thank you for telling us.

patti

[eve]

i am in shock

my deepest sympathy to his family

eve

[uno grasshopper]

Thank you for your comments. I will print them up and send them to Cheri. I’m sure nothing at this moment can completely take away the sorrow she’s feeling right now. However, I’m confident that some of your kind words will at least be of some comfort to her at this time.

Marla

[Marsha]

I am so sorry to read about John; I pray to God to send Cheri the strength to continue life’s journey. John was a really nice person and had so much to give to people here. He will be missed.

Marsha

[cthomas555]

Jimbob

When John in GR saw the Chinese Doctor Kou he was taken off the Prednisone, the only known successful treatment for Sweets, and put on a chinese medicine.

I think he would have had a better chance for survival on the Prednisone.

[Jerry]

Well said Chris … According to one of the most prolific contributors to this forum, the eminent Dr. Kou cannot show us any successes here in the US … all of his “cured” patients are in China … how convenient … it was said recently that staying on Prednisone long term has bad side effects … maybe so, but I bet John in gr wishes he was still on it … my fears about this forum are starting to be realized …

Jerry

[uno grasshopper]

Hi Chris and Jerry and anyone else interested:

I had corresponded with John before he went to see Dr. Kou in June. What John told me at that time (I still have his emails saved) was that he was on “high” dose prednisone, and it was becoming less and less effective in combating his Sweet’s. It did seem to work in the very beginning around spring of 2005 when he visited here, but it never cleared it up completely. As his Sweet’s returned, it became more resistant to pred. His docs, therefore, were switching him onto other meds like Dapsone. The problem was that the drugs they wanted to give him to treat his Sweets had side effects of lowering his blood counts, thus increasing his need for transfusions.

John suffered much during his last 6 months and was “not” rejecting conventional treatment for his Sweets. His wife Cheri had to actually inject steriods into his lesion at the local sites in addition to pred. Even that was not enough.

Regarding Dr. Kou, John did call him after his visit when he was having fever (there was an e-coli outbreak in his area and not surprisingly with his low white count, he caught it), and Dr. Kou recommended he take the Pred and other treatments (antibiotics) of the other docs. And John “did” as Dr. Kou recommended–he continued with the standard meds and never got a chance to make a second visit with Dr. Kou, although he very much wanted to(as Cheri explained to me on the phone yesterday).

At his last hospital stay, the docs wanted to do a biopsy or some sort of exploratory surgery to see what was happening in his lungs, but because of his low platelets (which were not low in Jan 2006 when I met with him. I don’t know if it was low as a result of his MDS process, Sweets, or the drugs), they were reluctant to do it for fear of causing more bleeding and fluid buildup. What they did recommend was to put him on ventilator and scope him under those conditions. He accepted and did the whole process of sedation, etc. to get under ventilation. He was only supposed to be on ventilator for 2 days, but once he got on, he got worse, and he never got off of it. The rest you know.

John was really in a bad spot. There are a lot of details that you need to know before judging his treatment choice/s and final outcome. The hostility exhibited on this forum by some of you is really distasteful, and I’m glad that Cheri isn’t on the net to read any of the mean-spiritedness displayed here.

Take care,

Marla

[cthomas555]

John wrote:

“He [Dr. Kou] was not surprisingly not familiar with the Sweets but he believes it will resolve as my underlying condition improves. He stated that he has had very good success with MDS patients, especially those who have not become leukemic.”

“Of course, I wanted to know what he meant by “very good success” or “very good prognosis”. He indicated that based on his experience for persons in my situation (no guarantees, of course), he thought it not to be unreasonable to anticipate being cured, as in no more MDS in 1-2 years.”

Any doctor who says he thought he could cure MDS in 1-2 years is suspect in my opinion. I also don’t think I would want a doctor unfamiliar with Sweets to be treating me for the disease.

My different point of view does not indicate hostility nor disrespect to John’s memory or to his family.

Maybe someone else will benefit from my opinion by being conservative when seeking out alternative medicine.

Chris

[shirlsgirl]

Hi Chris,

You haven’t displayed any hostility or disrespect to John’s memory at all. Quite the contrary…you are obviously caring and show deep concern for John and others seeking alternative treatment. I too am very sad that John has passed. I really hope that anyone seeking alternative treatment shares everything with their oncologist/hematologist!!

I see no “mean spiritedness” here at all. Just caring people!!

Jody

[patti]

Marla,

Thank you for filling in some of the blanks. I knew some of that but not the latter stuff towards the end of his life (he really wasn’t in contact with anyone).

When John was here one of the things we discussed what that Dr.Kou can do a lot with the naturopathic remedies on a long term basis. But he clearly advocates standard medical care when someone is in an acute phase because naturopathy takes time to work. Sometimes many months. When John came out here he was just starting out with Dr. Kou and he knew he would have to continue on the prednisone (which was already starting not to work) for awhile until the natural stuff could take a good hold. He was hopeful because the chinese medicine was successful in healing and relieving the pain of the the sweets lesions. Cheri had been injecting steroids into the leisons prior to that and it was hard on him.

Chris, Sweets is so uncommon that many doctors don’t even know about it. Although Dr.Kou is also an MD (he worked in oncology in China) he had not been exposed to it either; not unlike many docs here in the US.

Jerry, just like all of us on this forum when we’re making treatment decisions regarding this disease, John made a calculated decision. He chose to do natural medicine as much as he could. John got medical care when he needed it to take care of acute phases of his sweets. We are all making calculated choices in our medical care and in the end the outcome will be the same. Some will have a shorter life, some longer. The fact that his body was overtaken by sweets is no more a damnation on his choice of using naturopathy then it is a damnation of the medical care he received in the hospital. His body could not fight it. Period.

His wife is truly one of the sweetest ladies I have ever met and my heart breaks for her.

Patti

[cthomas555]

In John’s own words but contrary to other reports John did begin discontinuing the Prednisone and began Dr. Kou’s medications after his June visit.

John continued to write in My visit with Dr. Kou:

“He mixed up a formula that I take 3-4 times per day and I’m taking some pills. I am no longer shooting up cortisone and am tapering the prednisone (Dr. Kou understood that prednisone should be tapered and not stopped cold turkey). I stopped the Dapsone.”

John did taper off the prednisone and took the formula and pills treatment that Dr. Kou prescribed for him. It’s a given that this was John’s choice and no one is criticizing him for making that choice considering the proposal that Dr. Kou made to anticipate a cure of the MDS in 1-2 years.

Patti is your M-I-L cured yet? Has it been 2 years since she began her treatment with Dr. Kou before you referred John? I wish her success and I pray for us all.

Chris

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