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  #1  
Old Fri Aug 12, 2011, 07:37 AM
JodyW JodyW is offline
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Can't get an IV- Has anyone had this problem

Trevor was scheduled to have a CAT scan with and without contrast last week but they couldnt get an IV started so they did it without the contrast. Yesterday 3 nurses and the Dr tried to get an IV in him including in his neck and they had no success. He no longer has a pic line as it was removed when the tansfusions ended. They are sending him back to OSU medical center to have them try using the ultra sound.

Is it normal for AA patients to have difficulty getting an IV like this. Does it have something to do with the amount of blood? His Rbc were 2.5 his last report.

THanks
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #2  
Old Fri Aug 12, 2011, 07:44 AM
Marlene Marlene is offline
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Could he be dehydrated? Also, have they used heat packs to bring up the veins? It's always a good idea to drink plenty of fluids 24 hours before the stick.
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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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  #3  
Old Fri Aug 12, 2011, 07:51 AM
JodyW JodyW is offline
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Thanks, I dont know why I didnt ask him that question. Hopefully thats it and he will work on drinking more fluids.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #4  
Old Fri Aug 12, 2011, 02:18 PM
Karenish Karenish is offline
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Fluids is the answer, which he should drink plenty of to help protect his kidneys from the cyclo too......my veins stick up quite prominently once i have drunk a couple of pints.... good luck
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  #5  
Old Fri Aug 12, 2011, 05:01 PM
amberb amberb is offline
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I had a similar experience when I first entered the hospital for treatment. Several nurses tried several times to start an IV and could not get it. They eventually had one of the PICC nurses come to use the ultrasound to start the IV. I wasn't dehydrated, they said my veins were small. But they also said they were scarred from having so many IVs from transfusions.
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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  #6  
Old Fri Aug 12, 2011, 06:36 PM
Chirley Chirley is offline
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Hi, many years ago I used to insert IVs for a private company.

As other people have mentioned. Drink WARM fluids, dress warmly, use a heat pack and the one I found best...if you can, go for a bit of a jog or do some vigorous exercise (I used to love coming along after the physiotherapist had just given the patient a workout). This one is only for people with ashtma...veins seem to dilate after using ventolin, I never did work out why. Years ago we used to put GTN cream on flat veins....poor patients, imagine the headache...ouch. Don't forget to use gravity, hang the arm down over the side of the bed then place the tourniquet and leave hanging down for 2 to 3 minutes.

One of the "tricks" I was taught was to use the blood pressure machine (manual, not automatic). Pump the cuff up to above the systolic pressure, effectively cutting off the blood to the arm. Leave the cuff at that pressure for about 20 to 30 seconds. Release the pressure entirely and IMMEDIATELY pump the cuff up to about 20 above the diastolic pressure. Locate the vein.

It's too long ago, I can't remember the rest of the tricks but there were heaps of them. Nothing worse than HAVING to get IV access at 3 in the morning and no one to back you up if you can't get the IV in....except maybe being the patient.


Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
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15q11.2 deletion
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  #7  
Old Fri Aug 12, 2011, 08:37 PM
JodyW JodyW is offline
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Thanks everyone, I will pass all of those ideas on. Really appreciate responses.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #8  
Old Tue Aug 16, 2011, 04:38 PM
Steve Drewry Steve Drewry is offline
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Jody,
I had a similar problem with IVs. 3 different nurses would try, then an IV specialist would try. No one could get a good one. This went on for months and was obviously painful. I opted to get a "Power Port" put in. The best thing I ever did. The port is surgically implanted just under the skin in my chest and a line goes over my clavicle and into a vein. One stick instead of 4 and I can leave it accessed for about a week. May not be an option for your son, and not sure how insurance will handle it. It has been a gift for me. Good Luck!
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Steve, 44 year old, MDS RARS, Dx Nov 08, 3 rounds of Vidaza, RBC trans dependent, BMT sched for 12 Sep 11
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  #9  
Old Fri Aug 19, 2011, 07:23 AM
JodyW JodyW is offline
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Quote:
Originally Posted by Steve Drewry View Post
Jody,
One stick instead of 4 and I can leave it accessed for about a week.
Steve,
What do you mean by can leave it accessed for about a week. How long can it last ? Does this sit under the skin? Is there a greater chance of infection ? It sounds like a great answer to Trevor's problem. I will tell Trevor to discuss with the Dr.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #10  
Old Fri Aug 19, 2011, 01:09 PM
Birgitta-A Birgitta-A is offline
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Port

Hi Jody,
Most patients with ports get them to receive blood transfusions, Desferal, chemo etc in the port. Of cause the nurses can draw blood from the port too.

The port is a small device (often made of titanium) that is inplanted under the skin under the clavicula with a line to a big vein. The nurses can put a needle through the skin into membrane on the port. This needle can stay there for some days if you are getting a drug for example Desferal for iron overload, antibiotics or some kind of chemo during several days. In Sweden the needle has to be changed every 4th day.

http://www.bardaccess.com/port-powerport.php
This info is perhaps an advertisment but since Steve mentioned PowerPort I found this info.
Kind regards
Birgitta-A
Port-a-cath inplanted Jan 2007 for txs and Desferal. Used for antibiotics during neutropenic fever too. Never any problems with my port yet (knock on wood).
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  #11  
Old Sat Aug 20, 2011, 11:57 AM
evansmom evansmom is offline
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Hi Jody,

Evan had a portacath as well and it was wonderful. They could draw blood work, give blood products and use it for regular IV's as well. He never had to have it accessed for more than a week at a time (i.e. continual IV during week long stay in hospital for ATG) and it never let us down. We applied numbing cream 30 min. before a poke was required and Evan never felt a thing.

Word of caution to all re: blood work:

When getting blood drawn, especially for kidney function while on cyclosporin etc., NEVER allow the lab tech. to leave the tourniquet on or the manual blood presure cuff inflated while obtaining the blood samples. It's OK for them to place the angiocath into the vein BUT they must release the pressure on the vein before they get the tubes of blood. Potassium (K) results will most certainly come back higher if obtained with the tourniquet on than if it was obtained with the tourniquet released.

Best wishes to your son,
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #12  
Old Sat Aug 20, 2011, 07:12 PM
Chirley Chirley is offline
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That's right Nicole, the tourniquet can really distort results. However in the hospital I worked, we were not permitted to take blood samples though the IV even when it was just being inserted. It was considered a risk of infection and the bouncing of the blood from side to side along the canula was supposed to break blood cells and give inaccurate readings.

Regards
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #13  
Old Sat Aug 20, 2011, 10:06 PM
evansmom evansmom is offline
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Ah yes, by angiocath, I meant the blood work needle, not a needle used for IV's. Thanks for the clarification.

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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #14  
Old Sun Aug 21, 2011, 02:55 AM
cathybee1 cathybee1 is offline
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Hi Jody, You had asked about greater risk of infection with a port. I believe statistically there is a greater risk of infection with any venal access device such as a picc line or port-a-cath than no device.

That being said, when the veins in my husband's arms became weakened, his family doctor and hematologist recommended the port-a-cath. He is quite neutropenic. One of the selling points for the port-a-cath is that there is considered to be a lesser risk of infection for it than a picc line. And once implanted, it can remain in place for quite a while (several years).
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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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  #15  
Old Sun Aug 21, 2011, 10:41 PM
JodyW JodyW is offline
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I was out of town for a couple of days and unable to get online only to return to great information from all of you.. Thanks so much. This will be very helpful.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #16  
Old Thu Aug 25, 2011, 10:32 PM
JodyW JodyW is offline
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So they ended up putting a port in Trevor. But when they got blood they found his rbc had dropped and he had to get a transfusion. He had been indendent for over a month. The nurse told him his kidney's were failing and his potassium was off the charts. Just last week they were tapering him because they said he was stable, now they are giving him transfusions because his numbers are dropping. I wonder if they just started to taper too soon. He said he is feeling dizzy and chills, Im hoping he doesnt have an infection. I will wait to see if I can talk to a Dr . I am hoping they will talk to an AA specialist as none of these Dr. are AA specialist and seem to be guessing every step of the way. But maybe thats the way its done.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #17  
Old Fri Aug 26, 2011, 12:21 AM
evansmom evansmom is offline
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Jody,

This update is distressing. I'm glad that Trevor has the port but how low was his hemoglobin? Could it have been low enough to cause the dizziness and possible low blood pressure which would have injured the kidneys from decreased blood supply? Is he dehydrated? How high was his potassium? What are they doing for his kidneys? Hydrating him immensely, I hope.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #18  
Old Fri Aug 26, 2011, 08:04 AM
JodyW JodyW is offline
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Hi Nicole,
It is distressing but unfortunatly I only have the info Trevor gave me. I m going to try to talk to a Dr today. His hbg was below 7 but Im not sure far below. I dont have any of the numbers so hopefully they will give me today. I assumed the chills and dizzy were from the blood transfusion and hopefully not an infection. He said they gave him lots of IV fluids because he was dehydrated. Im just really bumbed about the transfusion and where that may be going. But not to freak out until I talk to a Dr today.

Was very happy to see you met Evan's donor.. That must have been very special.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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Old Fri Aug 26, 2011, 10:54 AM
evansmom evansmom is offline
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Good plan Jody.

One thing I alsways mention when I hear of an AA'er who had been transfusion independent and then suddenly shows up with a super low Hgb as Trevor did, in the 60's, is that there can be a rare but serious complication from cyclosporin (and tacrolimus) that can result in damage to the tiny blood vessels, especially in the kidneys and eyes.

The med causes injury to these little blood vessels and in an effort to fix them, platelets and fibrin go to the damaged areas. As a reult, there ends up being tiny little cross fibres inside the blood vessels and as the blood is travelling through them, the red cells get sliced in half, causing a rapid decrease in red cells and hgb (as opposed to his AA getting worse). I would inquire about this today as if Trevor has this, and that's only an if, it can be very serious.

It's called calcineurin inhibitor(AKA cyclosporin) related microangiopathy and the flags for it are red cell fragments (schistocytes/bitten cells) in the blood smear, urine positive for hemolyzed blood (will be tea coloured - ask Trevor) and a very high LDH.

Did you not mention previously that Trevor's sight was going bad? If not, I apologize, it was someone else.

Anyways, not to add to your worries, but what I described above is very rare and it may not be what's happening here but if it is, unfortunately many doctors don't recognize it until too much damage is done. I know this first hand as Evan experienced this himself and we had a very scary few weeks because of it.

Hope you get some where today, I know it's very challenging being involved in Trevor's care in this situation.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #20  
Old Sun Aug 28, 2011, 09:57 AM
JodyW JodyW is offline
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Hi Nicole,

I read about schistocytes and compared to Trevor's complaints and will definalty talk to the Dr about it. You referenced LDH being high and the only thing I can find on his lab reports is LD so was wondering if those are the same thing. His LD back in June (most recent report I have) was 402. According to the report high is 243.
So I did talk to the Dr and he said he wanted to wait to see if Trevor's blood count drop was real or the result of all the fluids they gave him. He said that could be the cause so he will do another cbc in a week. (seems strange to me, but ok)..They took him off the K since he was getting a daily dose and when they drew his chemistry it was 6.2. His creatinin was 2.2 and had been since the last lab of 8/18 but no action was taken on 8/18. Then with his numbers decreasing (maybe only from fluids) they reduced his cyclosporin even more. THey attributed the dehydration to vomiting which Trevor reported is only a few times a week. So not sure how thats the case if he is drinking plenty of fluids. The Dr also told me they did a Pic line because they needed to get fluids in him quicly and they didnt do a port. Trevor told me he has a port. So noone really knows whats going on with him in any comprehensive way.
The schistocytes from cyclosporin study I read shows it effects males between 20-29 in the first 6 months on cyclosporin the greatest and some of the other symptoms include gate imblance (trevor has) severe migranes (trevor has) vomiting (trevor has) darker urine (trevor has ) changes in eye site (trevor has ) . As of now , all these symptoms have been addressed separatly or just attitbuted to "side effects" of cyclosporine. I will definatly try to discuss with the Dr. tomorrow. My concern is if this is the case, do they take him off of cyclosporine and if so then what. If it is a transplant then we are close to out of luck. But wont go there now. Try not to play the what if senarios too much.

Cant tell you how much I appreciate the info, hopefully its not the case but it helps me understand that I have to pay attention to those "side effects" of cyclospronine more comprehensively. I have also been paying to much attention to his blood counts and definatly not enough to his chemistry.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #21  
Old Sun Aug 28, 2011, 10:42 AM
evansmom evansmom is offline
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Jody-

They can switch Trevor to MMF aka Celcept. It's another immunosuppressant not traditionally used in AA after ATG but it does pretty much the same thing. Do not let the docs switch him to tacrolimus because it will cause the same damage as cyclo. It's the same med basically. They switched Evan from tacrolimus to the MMF and it fixed everything while still keeping his immune system suppressed. Evan's team never recognized these cluster of symptoms, I had to force it under their nose. Very frustrating, but yes, you have to learn this stuff quick and thoroughly in order to help secure a fix.

Trevor is very lucky to have you in his corner.
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #22  
Old Sun Aug 28, 2011, 11:48 AM
JodyW JodyW is offline
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Nicole,

Thanks again, I will discuss it with them first thing. I just sent an email to the head of Legal for the DOC to see what it would take to get a consult. Im hoping this latest issue will motivate them to act. I am also going to take a crash course in chemistry results as well as subpoena more of his records. Unfortualty they are always weeks behind.

Thanks and nice to have someone in my corner to talk through this with.. Cant tell you how much it helps.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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  #23  
Old Sun Sep 11, 2011, 10:07 AM
JodyW JodyW is offline
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Trevor had been unable to get an IV so they put a port in about 3 weeks ago. Last night he had a temp of 103 .2 and he has swelling around the insision. They took him for a chest xray and were trying to do a blood test but could not get blood from anyplace other than the port. Trevor had had a pic line for months and never an infection now just after 3 weeks with a port he has an infection. Does anyone know if one is considered better then the other.
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Jody, mother or Trevor 23. Diagnosed VSAA 3/11 , ATG cyclosporin 3/11 response 6/11, Relapse 1/13, Round 2 ATG 1/13
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