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  #1  
Old Tue Aug 14, 2012, 10:44 AM
Al's Wife Al's Wife is offline
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Location: Jackson, Georgia USA
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Quick question about port

We are checking with heart doctor to see if Al is a candidate for a port. He asks me to find out if you are awake when they insert it and if it is painful? I am sure one of y'all will know. His Troponin level is elevated and they keep checking it. I hope we get to go home today. Will post later. God bless all and thanks for all the kind words.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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  #2  
Old Tue Aug 14, 2012, 11:48 AM
PattiDean PattiDean is offline
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Linda,

Dean just saw his cardiologist this morning. He is also going to get a port, and asked the cardiologist if that would be okay. Dean has had open heart surgery twelve years ago, and has some blockage again. Our cardiologist said it wouldn't be a problem, that you are put out, but it is a mild drug, you are only out a short while.

He said it is usually the "Michael Jackson" drug, Propofol.

There are many people in the treatment room when Dean is receiving his Dacogen that have ports.

I hope Al is doing better, and I hope this helps regarding Al getting a port.

You are in our prayers!

Hugs!!!
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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  #3  
Old Tue Aug 14, 2012, 12:32 PM
Sally C Sally C is offline
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Hey Linda,
Don was mildly sedated when they put his port in. He never had any pain afterwards.
Ports are a true Godsend. They just tell Don to take a deep breath when they access it and he just said it's more like a little sting - and sometimes he can't even tell they have accessed it.
Now that he's transfusions independent he has to have it flushed with saline and Heparin every six weeks. Otherwise he can't even tell it's there.
He has not had the first bit of trouble. It is just under the skin about an inch or two above his left nipple. Al will never regret getting it.
You have both been in my thoughts and prayers. Keep your chin up and keep the faith! Take care of yourself too - if that's possible.
God Bless,
Sally
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  #4  
Old Tue Aug 14, 2012, 01:42 PM
Birgitta-A Birgitta-A is offline
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Port

Hi Linda,
As far as I understand different hospitals sedate patients in different ways before a port is inserted. I don't think I was sedated - they only uesd local anesthesia.

The operation didn't hurt at all but since my platelets are dysfunctional I bled much even though I had received platelets. This meant that it was impossible to start to use the port at once.

I have now had the port 5.5 years without any problems.
Kind regards
Birgitta-A
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  #5  
Old Tue Aug 14, 2012, 02:11 PM
maria&lola maria&lola is offline
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Hi, Linda:

My mom was sedated as well and was just a little tender afterward but no problems. They were going to start Dacogen the day she had it put in, but it turned out to be such a long day she didn't have the energy to go up for the treatment. Turned out she had to have one transfusion before the Dacogen cycle and the nurses at the hospital were not able to access the port the first time for some reason. But they had no problem at the doc's office during the Dacogen cycle. No problems otherwise and she is happy with it.

Good luck to Al!

Maria
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  #6  
Old Tue Aug 14, 2012, 05:20 PM
Sally C Sally C is offline
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Hey again Linda,
One thing I wanted to mention is the port can only be accessed by an RN.
Also Don's platelets were low so they transfused him before the procedure and he had no problems with bleeding.
Take care and God Bless,
Sally
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  #7  
Old Tue Aug 14, 2012, 08:09 PM
Chirley Chirley is offline
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Gosh, I was given a full blown anesthetic in OT to have my port inserted AND I had to stay in hospital overnight.


They must have thought I looked whimpy.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
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  #8  
Old Tue Aug 14, 2012, 11:47 PM
milliken2 milliken2 is offline
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Mediport

Linda;
Earl had a PIC line for almost 8 months (actually 3 different ones) but had been having trouble withdrawing from it. They could infuse without any problem, but the Doc and I thought it was time for a mediport, and it is definitely a God send - especially to me - since I was the one who was cleaning and flushing it daily, and with anything outside of the body, there is always more chance for infection - and Al certainly does not need that. They put Earl's in on his left side - they left the PICC line in for 2 weeks after they put the port in because he developed a hematoma around it, and they wanted it to heal before they used it. He was totally anesthetized, and went to the short stay unit before and after surgery - was discharged the same day.
But, with all of the transfusions Earl has been having - it is a blessing for sure. But, just like with a PICC line, a Registered Nurse has to do the blood draw. I take him in in the wheelchair, then I go back to the lab to pick up the tubes - then off to the infusion lab to see the nurses. By now, they all know us, and I just sign the paper and off we go. It just saves Earl steps, especially when he has been so weak. He has to have a blood draw twice a week, so when we go for the second one - I pre-register him for the next week, so if we do go early - you don't have to wait to register - it's all already there. Too - since his orders are always the same - the lab just jeep him in the 'standing orders' file, and I attached a copy of all of the Docs I want the results sent to - and they do it all for me - and we have 6 of them - the hema/onc here in New Castle, the hema/onc in Pittsburgh, his rheumatolgist, his APS Doctor, the Veterans Admin Doc, and Dr. Sekeres at the Cleveland Clinic. It makes it so much easier.
Both you and Al are in our prayers. Please keep us informed on how things are going.

((((HUGS))))
Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.

Last edited by milliken2 : Tue Aug 14, 2012 at 11:50 PM. Reason: misspelled word
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  #9  
Old Wed Aug 15, 2012, 12:09 AM
cathybee1 cathybee1 is offline
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Bruce had conscious sedation, he was in the hospital about 7 hours total. It has been a godsend for him.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #10  
Old Wed Aug 15, 2012, 12:32 AM
Snuuze Snuuze is offline
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I had a port installed a year and a half ago and have no regrets. I guess I had partial sedation - out but not totally under. Can't remember how long I was at the hospital - maybe a couple of hours. I had some pain afterwards. I think they tweeked a nerve in my neck. But now, being accessed is a piece of cake and my arms thank me every day they don't have to be poked.

Sue
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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  #11  
Old Sun Aug 26, 2012, 07:43 PM
Roscoe Roscoe is offline
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Ports

Ports are good. Full anethesia is not required, but, I suppose, depends on the Dr. I have had a port for 5 years. The initial port was removed last month and replaced. I also had a PIC line implanted just before the SCT and it was in for a year. I am 4 years out from SCT. Still working through chronic GVH. There have been many challenges, almost all overcome as they occured. I have a caregiver (wife) who never gives up; would not be here today without her. Be happy to help others, just ask.
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  #12  
Old Fri Sep 21, 2012, 02:42 PM
Coping1 Coping1 is offline
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I am actually on my 8th mediport-have had this one for almost 2 years. I have had conscious sedation for the placement for all of mine and I have been taught to access my own. This allows me to bring my own blood samples in the to my doctors who don't have nurses who are trained to care for mediports-my gp, endocrinologist etc.

I only have one arm that can be used for sticks and blood pressure and the veins in that arm aren't good so the port has been a Godsend!

~Coping
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