HELP PLEASE Patrick critical Stanford Red tape

[Britt]

Patrick was supposed to go to Stanford today for a consultation with Dr. Greenberg. He was so sick he couldn’t get down there and had to be taken by ambulance to Kaiser Hospital in Santa Rosa. I just heard from his sister…….he was told ‘today’ after tests were taken that he now has full blown Leukemia. His first Diagnosis was RARS. It took us months to get an appointment, but now they are saying even if Kaiser sends him to Stanford by ambulance that Stanford ER won’t accept him because his appt was with a Hematologist not an oncologist and he doesn’t have a Stanford oncologist. Stanford even told his sister to call in Hospice. How can they give him a death sentence like that after refusing for so long to give him a referral? He even saw an outside (of Kaiser) hematologist (Dr. Julius Jaffe who works with Stanford all the time) from Santa Rosa. He said Kaiser should take him off Prednisone and start him on Dacogen….which they never did do Kaiser. Monday his plts were at 6…….today they say he has leukemia. We don’t know where or how to turn to someone who can make things happen. Does anyone know how to get through the damn red tape. It’s literally killing him, and I for one him so angry I can’t keep the tears back. You can call me at my cell phone 707-364-2896 or his sister Vickie at 707 953-4657 (cell) or home phone 707-838-6268 or email Vickie at Bsteele1943@comcast.net please put in subject line To Vickie re: Patrick
God bless each and every one of you.
Britt AKA Susan

[Bkwits]

Oh Susan,

My heart is aching for you and Patrick. How did the Dr. ascertain that he had full blown leukemia? Joe’s hemo doc said he couldn’t tell for sure without a BMB. I don’t know if it’s usually the case, but Joe’s hematologist was also an oncologist. Take a deep breath….now, can you talk to his doctor at Stanford? I really wish I could be more help. I hope others can jump in and help get you through this. Praying for you, Barb

[Neil]

Hi Britt,
There is much unsaid in your message.
Most types of leukemia can be treated.
Doubt Dacogen would be a treatment for Leukemia.
Might be best to speak to his doc in order to find out exactly what is happening, what the options are and what the treatment plan is going to be. KAiser should certainly be in a position to help.
Does not make sense a hospice recommendation would be made without ever seeing him.

[lindajo]

Whenever you have trouble with insurance companies each hospital has social workers that can help you navigate the system. They do it everyday all day long. The other option is to use the State Insurance Commisssioners office in your state. Look in your phone book most of them have toll-free numbers and free websites that can help point you to the best help available in your area. Lindajo

[Susan C]

FROM BRITT
Hi this is Britt again, I lost my password for Britt….. . They said it was a blood test they had given him and the immature cells and blasts that showed up, but no one gave any details. Supposed to be a special blood test. He was transferred to another Kaiser facility because they had no beds in Santa Rosa. I asked for the summary the ‘Hospitalist’ (never got to meet the oncologist although I spent the night, he came after I left in the morning) had written up to send to Kaiser as they are in the process again of transferring him back to Santa Rosa. Suddenly the printer wasn’t working……how convenient. I don’t know what information I need to give you (Neil) that might help you help us. Tell me what to ask, and his sister, Vickie, and I will do everything we can go get that information from them.

He went into the San Rafael Kaiser with a fever……the doctor said he didn’t have one when he came in…….the nurse said yes he did it was 101.3. He said even if he had a fever, he wouldn’t know what kind of antibiotic to give him since he couldn’t know the source of the infection. I explained that this happened once before and the ER doctor…..just gave him an antibiotic that would take care of everything. He came out of it fine after the antibiotic and a unit of plts. He has been having severe pains (starting Monday before his infusion) on the left side of his chest down into his abdomen. He says he hasn’t had a BM in days, but xray showed no blockage and very little fecal matter. He hasn’t been eating. Then the hospital he was transferred to repeated all the same tests he had earlier in the day. Oh, the Santa Rosa Kaiser said the blood test showed his MDS had turned to Leukemia. This is all I can tell you now………when I have more, I will write.

Lucy! You really helped give Vickie some hope. You were so wonderful, you are all wonderful. I can’t thank you enough for all your help.

For Patrick…..

[Engel]

Britt,
Maybe I can shed a little light on this. My husband dx in Jan.06 MDS, in May a routine blood test showed blasts. They did a BMB and discovered that he had 69% blasts and he now had AML. He did chemo ara-C after first treatment, complete remission. He is doing Vidaza now for his consolidation and is doing well, all his counts are within normal range, his counts went down very little during his Vidaza treatment. We will keep Patrick in our prayers, there is so much hope out there, never give up. Hope this will help. Neil is the best sorce of information out there and Suzanne has been very helpful to me. Blessings, Gloria

[Susan C]

To everyone: Patrick is on his 7th day of Chemo tomorrow. He said he wanted to go home yesterday, so his sister insisted his doctor tell him what would happen if he did leave. He decided to stay. His vital signs are all good, but they still don’t understand the distention of his stomach and bulging sides even after doing a cat scan. His colon and spleen are swollen. They said Chemo would take the swelling down, but we haven’t seen it yet. Other than that…..he feels totally rotten as everyone who has had to go through this does. He is also depressed with good reason and I’m afraid not very hopeful. If anyone cares to send him well wishes his address is as follows:

Patrick Leighton
C/o of Kaiser Hospital
401 Bicentennial Way # 1B
Room 415
Santa Rosa, CA 95403

[Suzanne]

Britt, Tell Patrick to hang in there and stay in that hospital until his counts are back in a reasonable range if they will let him(Just about a month for me) . They had a “target” for me and even though I hated being shut in that room, I feel like being kept there and watched for problems that got addressed quickly was one of the factors that made my treatment a success. I was there even longer for the consolidation round but that round was not as hard -no sickness and no complications at all the second time except that it seemed to take forever for those counts to come back (I was actually afraid they were not going to come back) But it was all worth it. I feel great these days. I am orking close to full time and leave for a vacation trip to Greece on Saturday. It has been almost 3 years since I went into remission and My diagnosis was so “high risk” that I thought I had no chance of getting there and then no chance to stay very long! Even when statistically few people make it past the crises in our disease-some of us make up that number-they learn more every day and more of us make it into some real quality time. We all hope that will happen for the people here whatever treatment they are trying.

[Susan C]

Dear Suzanne
Thank you so much for your words that give one so much hope. The doctor said today that Patrick’s AML was the worst kind possible because the MDS was caused from the chemo/radiation treatment for his non hodgkins lymphoma. Do you know of anyone who has come through this kind of Luekemia? Greedy over here for even more rays of hope. Thank you once again.
Susan aka Britt

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