Horrible Veins,sick of Numerous needle sticks

[kaesara]

Hello,
I was diagnosed with SLE and Fibro in 1995 and declared Disabled in 1997. Since that time I have been Hospitalized countless times.
I have terrible veins and everytime I go for lab work or have to get an IV put in it is a ORDEAL. The Nurses hate to see me get admitted with orders for IVs because they know what they will be up against.
I was in the ER two months ago and one Nurse stuck me seven time attempting to get an IV, the Doctor finally changed the Antibiotic Order to Rocephin IM which had to be given with a numbing agent because it hurts so bad. Then the labs he ordered werent drawn so they sent in their best phlebotomist and she stuck me five times in attempts to get blood. They had to use a lancet to split open my finger tip and then squeeze, sqeeze and squeeze to get the blood needed.
This happens again and again. When I have been admitted to the Hospital the Supervisors and ICU Nurses that come in to try to get my IVS say they dont understand why the Doctors wont order a Port for me. My Internal Med Doc hasnt been open to referring me for that in the past and I understand the potential risk of systemic infection with Ports. That potential would even greater now that I am on Prednisone and Imuran.

Last Monday I had a Adenosine Stress Test ordered. The Three Rns on duty and the Cardiologist were all so very nice to me. Very compassionate about the Lupus and noted how much swelling I had in my fingers, hands and tissues in general. It took one hour and countless sticks to get an IV started in my thumb with a pediatric needle.The Cardiologist ordered a IV Dose of Demerol and Phenergan for me because he knew that laying on the table for a prolonged period of time was going to be hard on me. I thought he was very compassionate to do that. They were able to put the thalium in and get the pictures. When they went to do the adenosine the small vein that the pediatric needle was in had infiltrated. The Cardiologist and the Nurses tryed several more times to get IV access and eventually cancelled my test. They told me that I would have to come back on another day and hopefully they would have better success at getting the IV in.

Those who have Lupus and are flaring understand how hard it is to even make it out to these appts. We have nearly a hour drive each way. I have to be NPO , delaying all meds until after the test,thus a lot of pain and stiffness to deal with. I dont fancy having to go back and again and again.

I undertand that they were doing their best. I just dont see how another day is going to make a difference since this is a long term problem.

The Head of the Cardiology Center suggested that I call my Rheumie and ask about a referral to a surgeon for a port. I called and Spoke to the Nurse and she told me that the Doc was out of town and that she would discuss it with him as she recalled that she wasnt able to get my blood and had to send me out to get it drawn when in the office the last time. The Doc is supposed to be back in town today. I dont know what the outcome will be.

I am not on any meds routinely that are given IV. I do have several test coming up that will require IV access. I am patient about the sticks and I dont give the Nurses a hard time as I know that it isnt their fault that I have terrible veins.

I would like to hear from any of you that have had this experience and if you had a port temporarily or long term and what your experience has been with that.

Thanks for listening to my vent,
Kaesara

PS. HUGS TO EVERYONE

[lisade]

Hi, sorry you are having such a time and this is a big decision you have to make. When I go in for my chemo they usually have to stick me 6 or 7 times for a IV. This last time they ordered a port to be put in, when the nurse came in to do it I begged her to try one more time for an IV and fortunately she was able to get one. I have chemo scheduled again Wednesday and I will pray they can find a vein. If not I too will have to make the decision.

I do know it depends on the type of port you have as to the care it will require. The nurses where I get my chemo tell me they have several patients with the ports and that they do very well. I would discuss it with my rheumy and depending on how many test you have then make that decision.

I am sorry I wasn't much help, but I'll be thinking about you. style_emoticons/<#EMO_DIR#>/foryou.gif

[flowergarden]

Ah, I can tell you my experiences. I, too, had a very difficult time with blood draws and IV's. One time it took 11 tries to get an IV in. I also had to have the IM Rocephin (OUCH!).

I asked my rheumy if it was OK to get a port. Then I went to my PCP and asked to be referred for a port. He asked some questions and sent me to a surgeon. The surgeon asked a lot more questions, such as why I would ever want one. He didn't seem to understand the part about having to go through such a trial every two weeks when they need to draw blood.

I did some research and decided I wanted a chest port (Port a Cath), not an arm port. The surgeon said he refused to do a chest port because of the dangers of having to do a portion of the surgery "blind" (underneath the clavicle). He did agree to sending me to an interventional radiologist at the hospital for a port.

I checked around to be sure I could get the port accessed at several places nearby. They all said it would be no problem.

When I got to the hospital the radiologist said the surgeon had ordered an arm port instead of the chest port I thought I was getting. The radiologist showed me both ports and said that the arm port was so much smaller and less irritating. He said more and more people were getting the arm ports now. So I gave in.

He didn't tell me several things. Number one: the arm port area of my arm is irritated every time my arm moves back and forth. Number two: the port is small, making it harder to access than the chest one. Number three: there isn't bome behind the port in the arm, making much more difficult to hold while it's being accessed. Number four: Yes, some places will access it, but often they want you to be admitted to the hospital in order to do it.

My local hospital wants me to be admitted just to have blood drawn. The local labs can't access the port at all. The hospital near my rheumy will access the port and draw blood without me being admitted, but if I need to just have the port flushed (it hasn't been used in 4 weeks) I have to be admitted. I've learned to get around that by having my rheumy order a CBC every month whether he needs to or not.

INcidentally, I'm on pred. MTX, CellCept, and a host of other meds.

My advice? Call around about where you can get a port accessed, and IF THEY HAVE TO ADMIT YOU, then beg to get a chest port (Port a Cath) put in by a interventional radiology. It's a quick procedure if they do it, and safer than having it done surgically.

It does hurt to have the port accessed. Usually they will either spray the area with a freezing spray or inject lidocaine. I put a lidocaine gel on the site 1 hour before it's accessed.

All-in-all, I'm very pleased with my port. The only thing I'd change is having a chest one.

If you have any more questions, feel free to pm me. style_emoticons/<#EMO_DIR#>/flowers.gif

[kaesara]

style_emoticons/<#EMO_DIR#>/Thanx.gif for all of the replies to my " sticky issue",lol.
I have to laugh to keep from crying...... lol.

I do appreciate you all taking the time to be supportive, sharing your experiences with me.
style_emoticons/<#EMO_DIR#>/foryou.gif
Hugs,
Kaesara

[SoCalEric]

I know what you mean! I think getting the IV in is the worst part of chemo. I've gotten into the habit of TELLING the nurse to bring me the best they got, and if she hits it I'll make note of her (or his) name. When I went through chemo the first time I had one nurse try 6 times and miss them all, when she started another try I gave her a dirty look and told her to not even think about trying again, go get someone who knows what they're doing! I know once I found someone who was good at it I never had too many problems (they still miss now and then, nobody's perfect!). I start chemo again Friday, sure hope they got a good nurse handy!


Best Wishes, Hope things get better for ya!

Eric

[peonyprincess]

I too have veins that have disappeared. Prior to my illnesses that had me in the hospital for a good part of 2004 and 2005, I had veins that the nurse could blindfold themselves and throw the needle across the room and hit..........................now it is a definate search for the buried treasure of a vein.

After I was released from the hospital, I had a PICC line placed in my left arm for IV therapy. All went well until the blasted thing kept clotting off and would not run the antibiotics properly. I went back in the hospital sick and was found to be septic. It was determined that my PICC line was the site of the infection and it was pulled and a new PICC was placed into my right arm. A week after that, it was found that I was full of blood clots in my left arm and my left side of the neck. Then I was placed on Lovenox and Coumadin. Now we all know that means weekly blood draws to check the level of the Coumadin. I was very thankful for my PICC line as I could continue to receive my antibiotics and get blood draws without being stuck. However, I knew I was also running the risk of getting another infection. As soon as my IV antibiotics was completed, I had them pull my PICC line. I would rather be stuck than to be that ill again.

Now when I go in to have my levels checked, I make sure the order is on a day that this one particular lab girl is working as she can get me on the first try...........what a gem!!! Prior to finding her, some of the lab girls thought it was a game to stick me. They quickly learned that they had two chances to stick and get blood. If they failed, they were out. They thought that I was just being a pain in the butt and being rather b*tchy. Yup, that is me. I am not going for the bruised and bandaged look thank you very much. Thankfully my doc is very understanding or maybe just tolerant of me and my odd ways, but he also knows that he is going to get the information he wants and needs.

Before asking your physician for a line or a port to be implanted, be sure you realize what you are giving up. When you have these in your body, they are a direct path to your heart and you run the risk of a bad infection that can develop quickly, not to mention blood clots if you are not on a blood thinner. One thing to also remember that just because you are on a blood thinner doesn't necessarily mean that you will not develop a blood clot, it can still happen. Also, when you have these ports, you are very limited to certain activities such as swimming (not allowed) showers, clothing, etc. There is alot of care that is required by you when you have an implanted line. There are weekly dressing changes, etc While they are a nice thing to have when it comes time for blood draws and chemo, but really think it thru before doing it. Be sure to ask your physician about all the risks and benefits and then weigh it out for yourself. If possible, talk to others that either have them or have had them in the past.

While I was quite ill and required IV therapy around the clock, I was extremely thrilled to get rid of the line. I was able to shower again by myself without the worry of getting soap and water on the line. I was happy that I didn't have to plan my life around dressing changes and blood draws (to draw blood from a line or a Port, the nurse has to have had specialized training). If I was ever that sick again, I would probably consider another line, but I wouldn't want it just for blood draws.

One other thing, after I got rid of my PICC line, I noticed that if I raised my arms above shoulder level, I had a tingling and numbness sensation start. I went to the physician and was found to have absolutely no blood flow in either arm when they were raised. I have gone thru weeks of physical therapy to no avail and I know that I am looking at surgery to open those veins and restore blood flow. Is this a problem that just happened to crop up or is it related to having my PICC line? Who knows, but I myself wouldn't rule it out.


Nancy

[flowergarden]

Nancy, my port is completely under my skin and healed over. (It's not like a Hickman.) I don't have to take anything to thin my blood, either style_emoticons/<#EMO_DIR#>/smile.gif .

I do realize there is a greater risk of an infection, but my doc said it wasn't that much. I decided to take the risk.

I find that it's so much nicer than feeling like I had an encounter with a porcupine every two weeks or so. Even then they often didn't get enough blood.

I realize I will have to have ithe port replaced in a few years, but I'll just go with a Port-a-Cath (in the chest) then.

[SusieBB]

Hi there:

Wanted to let you know that I had experienced alot of the same issues that all of your are speaking aobut with the constant sticks and I have horrible veins. I am only able to have blood drawn from my right arm as I have lymphadema in the other and am not to have any blood pressure or blood drawn from it. There are only a few spots that they can draw blood from -- my veins roll and constantly collapse and i've also had numerous infiltration problems both while on chemo in the fall of '04 and during my first initial IVIG treatments last spring.

My docs recommended that i get a port put in and the procedure was done last June 23rd. I love it!!! It's a BardPort Implanted Port with Groshong Cathetor that goes from my jugular vein and is implanted in my chest centered in between my right breast and underarm. Sometimes they draw blood from it and others they don't. For testing procedures they definitely do not. It has been a godsend for me. No complaints here!!!

Hope this helps. Let me know what happens or you can PM me for more info. Take care.

Best regards -- Susie