[sugarwhale]

Dear Carmen, Mary and Caroline,
Sometimes this Forum surprises me. When I allowed my anger and bitterness against UNM Hospital and my mom’s doctor to spill out above, I half expected that Forum members would rally to the defense of the medical establishment. I figured that someone would tell me that I was wrong and that no doctor would exhibit such a lack of caring. Well, I stand corrected! I have to give each of you above my debt of gratitude. You sent me your sympathy, your empathy, your knowledge. I can’t thank you enough.
Like I told Jack above, MY MOM COUNTED. Her doctor didn’t think she did. He was far, far too busy to put his efforts into saving a 90-year-old. Jack’s wife counted too, and so did Eve’s dad. Mary’s and Carmen’s husbands count, too. And Caroline’s dad counts. Yet our doctors seem to feel that THEY count more than anyone else. Doctors think they are gods. Well, they’re NOT.
My mom and I always loved to travel together. When we first met her doctor, we had been in the midst of planning a very long vacation (about a month). At the time, my mom was very well. Now, had the doctor told us that there was a degree of risk in having my mom away from the UNM Hospital and the Cancer Research and Treatment Center for any length of time, we’d have appreciated his wise counsel. But, ‘know why he squashed one of our very last trips together? He told us that he would ALLOW her only 2 weeks, because “that is all the vacation I get, and I AM THE DOCTOR!” We could NOT have a longer vacation than THE DOCTOR. We didn’t COUNT enough for that!
I must thank everyone above with all my heart. You understood. You REALLY understood, and you came through for me.
Carmen and Mary, you are absolutely correct about the yogurt. No, our doctor didn’t recommend yogurt at anytime for my mom. Gee, that would have taken 30 seconds of his important time! During the MONTHS of taking antibiotics for the cellulitis, no one mentioned yogurt. When we traveled to Alaska and my mom did begin having the symptoms of C-diff, I saw to it that she ate Activia yogurt twice per day. This just wasn’t done quickly enough to save her. Had she been eating yogurt twice a day for the 4 previous months, she might now still be alive.
And Caroline mentioned something too that’s really important. She says above that “we have a prescription for Flagyl in the drawer just in case….” That’s how it should be. My mom’s doctor never gave us a prescription for C-diff or even mentioned c-diff or its symptoms to us. However, he was quick to give her an expensive prescription refill for the Levoquin, a drug KNOWN to cause C-diff.
When my mom’s C-diff was diagnosed in Alaska, the doctor gave us a prescription for Vancomycin. Even WITH my mom’s fine insurance, the Vanco cost nearly $400 IN CASH. It was 2 a.m. when we were released. We couldn’t get the prescription filled until 9 hours later. It was too late.
If my mom’s doctor had done the RIGHT thing, he’d have TOLD her about C-diff and given her a supply of Flagyl or Vancomycin to take WITH us.
Interestingly, the two Vanco IVs that were given to my mom at the UNM Hospital are far inferior to the vancomycin CAPSULES. The drug needs to reach the COLON, and the caps work more efficiently than the IVs. My guess is that the doctors and hospital got more money for the IVs.
The UNM Hospital is a public hospital. To my knowledge, they turn NO ONE down, even if the person has no health insurance. My mom’s doctor once told her that patients WITH insurance (like my mom) more than make up for the patients lacking it. UNM Hospital now has a brand new building, and they’re building more and more. I feel that my mom paid for a great deal of this building boom.
By the way, when the doctor didn’t bother seeing my mom anymore and sent his assistant instead, I should tell you that this lady was a nurse. She was NOT a doctor. My mom didn’t count enough to be seen by a doctor.
I just want to say one more thing, then I’ll end this message. I want to say THANKS, to all of you, for supporting me. All of you above make me feel somehow that I count and that my mom counted. I cannot thank you enough.
Yours in friendship, Janet

[sugarwhale]

Dear Judith,
I’m not sure from your post whether YOU are Judith; ‘sorry if I called you by an incorrect name. Thank you for your entry. I’m glad your husband survived C-diff. You were wise to do the research. My mom and I were traveling, and we had no access to a computer. We figured that her doctor would inform us of anything we needed to know. Ironically, when we left on the trip, he provided her with a new prescription for Levaquin, an antibiotic which often CAUSES C-diff in immune-compromised patients.
I hope you and your husband are doing fine. Thank you again for your kind entry.
Your friend, Janet

[sugarwhale]

Dear Eve,
Thank you also for your nice message. I’m glad your girlfriend survived her battle with C-diff, but I’m sorry you lost your dad. I have lost all of my family now, although my mom was the only one with MDS. Thank you for your kind note.
Your friend, Janet

[sugarwhale]

Dear Jack,
Again, I am so very sorry for your loss. I found that our “Center of Excellence” wasn’t really very…excellent. C-diff is quickly becoming a major, major health problem. Increasingly, doctors and patients are finding the more virulent strains; there are very few drugs which will kill these horrible C-diff bacteria.
The symptoms in my mom developed very slowly over a two-week period. She first noticed a “touch” of diarrhea, so minimal that it could well have been attributed to anything else. As I recall, this went away for a few days. My mom was very tired in the week before she died; however, we had traipsed clear across the West Edmonton Mall, and I was tired too. So, we didn’t think anything of it. About 3 or 4 days before my mom died, the very violent diarrhea began. At that point we KNEW something was wrong. I immediately took her to get medical care, but I was too late. The big problem is that doctors need to STOP hiding C-diff and start informing vulnerable patients of the information which could save their lives. The original “Cause of Death” on my mom’s death certificate is: “arteriosclerotic cardiovascular disease.” She had NO evidence of this AT ALL. There’s a word for this: It’s called a LIE. I cannot get the Alaska Medical Examiner to change this “Cause of Death” either. Unfortunately, patients’ welfare takes a backseat to doctors’ reputations and motives. People like my mom don’t count, especially if they are elderly. The only thing that counts is the DOCTOR! This is NOT ACCEPTABLE, and it HAS to CHANGE. My sweet mom DID count.
I am so sorry for your loss, also, Jack. Your WIFE counted, too. And the people we love count a great, great deal more than any corrupt doctor!
Your friend, Janet

[sugarwhale]

Dear Jack,
My letter to you posted before I was finished. I wanted to express my sympathy to you on losing your wife. I am so very sorry. You know what this is like!
Your friend,
Janet

[sugarwhale]

[sugarwhale]

Dear Mary Lou,
I am so very sorry to hear about Neil. He has helped so many of us on the Forum. My mom and I wish him and his family the very best. We are so grateful to him. Please know that we are keeping our thoughts of him always in our hearts.
In friendship,
Janet

[sugarwhale]

Hi, Neil!
I was shocked that you had been through so much! Hopefully, you’ve weathered the storm by now and will soon be back to your “old” self. I am thinking of you and wishing you the very best.
Your friend,
Janet

[sugarwhale]

Dear Forum,
It has been a very long time since I have posted on the Forum. When I first came, I felt thankful that the Forum consisted of all kind, understanding, compassionate members. It was comforting feeling that I had a place to go for help.
Sadly, I was wrong. Chris’s post above is a good example of why I quit the Forum.
Oh, and just for the record, NO ONE ever suggested that I come here and defend anyone. I am just completely disgusted.

~~~ Janet

[sugarwhale]

We think we know EXACTLY what caused my mom’s MDS: an OVERdose of radiation for breast cancer 30 years ago. At the time the doctor gave the same dosages of radiation to his patients that were given similar patients at M.D.Anderson Hospital in Houston. However, Houston is sea level; we’re over a mile high. The dosage should have been cut in HALF! Many of these patients died. We could write a book! In addition to the overdose of radiation, my mom’s dad died of acute leukemia at the age of 82. He worked around benzene. A survey would be very interesting. I just wanted to add radiation to the list!
~~~ Janet

[sugarwhale]

Dear Lizy,
I can’t help you to decide between Texas and Colorado. But I can tell you that our New Mexico Center of Excellence (The Univ. of NM Cancer Research and Treatment Center) is OUTSTANDING. We love our doctor! He has saved my mom’s life. You didn’t say WHERE in Colorado you might be moving to, but Albuquerque is only 4 hours from the border. Every case of MDS is different. My best advice to you is to arm yourself with knowledge. And, yes, try to go to a Center of Excellence.
~~~ Janet

[sugarwhale]

Dear Alex,
No one knows when he/she will die. A diagnosis of MDS does nothing to change this basic fact. My mom first had the characteristically low blood counts in 2000. MDS was diagnosed in 2002. The doctor (I use the term loosely!) told her to make her final arrangements. So, we found a REAL doctor, one that we love. My mom will be 90 on her next birthday. She’s out doing yard work! Remember, no one knows the hour of death. We’re not meant to know. Instead, grasp Life and make the very best of it.
Your friend,
Janet

[sugarwhale]

Dear Bill,
My mom had cellulitis also about 3 years ago. This was due to the fact that the Thalidomide which she was then taking caused her to itch. She’d scratch the daylights out of her legs and bacteria entered. She caught the infection in time, and was never hospitalized. The Thalidomide stopped working shortly thereafter, and my mom was transfusion-dependent. Last March she started Revlimid. She has been just fine! I mean, she acts as young as I am. She’s doing GREAT!
Of course, I have no idea what your mom is suffering with. All MDS patients are different. I just want to tell you that your mom may well be OK. I remember that my mom got really sick with the cellulitis; we were frightened, to say the least. Yet, she got OK, and now she’s a whole lot BETTER than OK. By the way, my mom STILL has a couple of those dark blotches on her leg. From what you describe, it’s the cellulitis. Of course, I don’t know. But that’s what happened to MY mom. Best wishes to you and your mom! Remember that NO ONE knows when we are going to die. My mom was told that she would die within the next 2 years; that was in 1976. So, have hope! If I can be of any help, just email me.
~~~ Janet

[sugarwhale]

This may not even be relevant, but my mom developed an itchy rash from PROCRIT. We later found that, although my mom was not allergic to the Procrit, she WAS allergic to the PRESERVATIVE used in it. At the time they simply switched her to epogen, which she tolerated fine. She needs nothing now–just revlimid. I’m thinking that if someone can be allergic to the preservative in Procrit, couldn’t they perhaps be allergic to the preservative in neupogen? Just a thought!

[sugarwhale]

Dear Forum,
Not to have embryonic stem cells available for research is just plain STUPID. I mean, they are THROWN AWAY!
I too am not a one-issue voter. So many people are suffering needlessly now though. It’s not only people with MDS. Our country lags behind others in medical research. You might say that I am “pro-life.” However, I’m pro-EVERYONE’s life–not just stem cells that are thrown out!
~~~ Janet

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