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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Fri Mar 13, 2015, 12:29 PM
vickij vickij is offline
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Location: Connersville, Indiana
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Family Dr & Transplant Dr

I have searched the forum and didn't find anything about when to go to family Dr and do what she says. I had BMT 20 months ago. I now see transplant Dr every 4 months . He was happy when everything was going good, at last visit he said I had fibromyalgia and was upset, like it was my fault. He wanted me to have physical therapy. I would have to drive an hour to a place that will take my insurance. I went to family Dr because pain was so bad. She said that massage would help. She also put me on Cymbalta & Vitamin D.( My vit D was 13 & should be 30 ) I go back to transplant Dr next week and I am afraid he will be mad that I am taking these prescriptions. I don't know if me or family Dr should have OK'd with him before taking. I have never had a Dr that stressed me out so much.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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Old Fri Mar 13, 2015, 01:54 PM
Marlene Marlene is offline
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The bottom line is that you need to do what's right for you. Is what you're doing helping? Unless there's a contraindication with Cymbalta and other meds you are taking or with transplants, then I cannot imagine he would have a problem with it. And vitamin D...well, not certain why he didn't have that covered already. I think most who are under treatment are deficient. They continue to not address nutrient deficiencies...many which can occur as a result of the treatment because of eating issues or meds. You have to do what you can (within reason) to restore your health. It is a balancing act with transplants.

Hopefully his ego is not that fragile. I would just ask him what are the things he can/will handle and what role your primary care doctor should have. If he gets upset, it should be with the doc who prescribes the meds and not you. So don't let him put it on you.

Regarding the vitamin D, if it's prescription, it's probably D2 and not as good as OTC D3. Better results are achieved with D3. So you may want to discuss with your family doc next time.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sat Mar 14, 2015, 01:26 PM
vickij vickij is offline
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Thanks Marlene

The Cymbalta & massage are helping. Transplant Dr said to avoid stress because it makes fibromyalgia worse. Nurse told me that I need to tell him that he is the one causing me stress. I am doing good & haven't needed transfusion since June 2014 when my blood type changed to donors type. My hmgb has been 14. He spends 10 -15 min. with me, looks at results of blood work & then starts in about fibromyalgia. Praying that this visit goes well.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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Old Sun Mar 15, 2015, 10:24 AM
Marlene Marlene is offline
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Vicki,

I went back and read your other post on fibro and saw you were on a long term dose prednisone for your transplant. After reading that, it seems that there is a connection and that maybe your transplant doc is dismissing it too quickly. There are many unintended consequences as a result of treatment and I think they get ignored since it's no longer a blood disorder.

I am sorry that he is so quick to blame "stress" on your symptoms. Many times doctors will tell patients it's stress when they don't have any answers or if they just can't be bothered. Stress does play a big role in all of this but so does long term therapy with prednisone. It can take up to a year for your adrenal glands to fully recover. Prednisone basically takes over for them and they stop producing cortisol. Once the steroid is stopped, the adrenals need to kick in again. That can take time for some. So your ability to deal with stress is not optimal. AND...just having this disease and treatment is enough to push anyone over the limit.

IMO, a doctor telling you to relax or it's stress causing your problems is not helpful on it's own. This approach usually causes more stress.

You may want to explore a second opinion with another transplant doctor if this doctor continues to make you feel uncomfortable or intimidates you in any way. You should feel comfortable expressing yourself with your doctor and should expect some level of compassion. To blame patients for their illness/symptoms, especially after a transplant is just not right.

Good luck on your next visit.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Wed Mar 18, 2015, 12:42 PM
GoodDay5150 GoodDay5150 is offline
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Hi Vicki. I had a trans for PNH 3 yrs ago. In 2014 I was forced to a new insurance provider from my HMO. My trans dr's did not change but I now have a new primary care phys. Other than needing to lose weight, my new prim doc has not advised or discovered any new med issues w/ me. If there is some confusion between dr's, you can request that they contact each other. Your prim care doc is aware that you may have new med issues after a trans so he or she should be open to comm w/ your specialist. Good luck in your follow up care.

Mario
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  #6  
Old Wed Mar 18, 2015, 06:22 PM
vickij vickij is offline
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Dr visit today

I went to transplant Dr today, he was in a good mood today. Couldn't get results of blood work because computers were down. I told him about Vit D from family Dr. He said that was good & would help my bones & immune system. I don't know why they don't test for it. Don't have to go back for 6 mo.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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