Topic: Another blood clot;...now can't get my IV Rocephin....
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I use a heplock to get my IV Rocephin every week. It has looked pretty sad the last few days, quite a bit of blood under the bandage, etc.
Last night after infusing with difficulty, I pulled it out. There was a big hole in my arm/vein and it bled a lot.
It was also all red and swollen around the whole, like a crater or top of a volcano. Sorry to be so gross.
This morning, the hole seems to have closed up some but in the hole or crater part is greenish color. It isn't oozing but it looks like pus. It is still read and swollen around it.
Now I know with any regular wound this would be no big deal, neosporin and a bandaid, but this is an opening directly into my vien. It is in the inside/crook of my elbow.
Should I do anything special or be concerned? No fever or chills or anything.
I will go today to outpatient procedures to get a new heplock put in but I don't think this is something they will really address, they just put the lines in.
Any advice would be appreciated. I don't want to go running to my PCP for nothing. I figure I'm on all kinds of antibiotics, so what can I do other than neosporin and keep it covered???
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hey Tracy I would deft. call your homecare nurse if I were you, they should know what's going on and usually they are always more than happy to help!
I used to have trouble with my PICC Line, and they were always very understanding.
better to be safe than sorry!
Posts: 14 | From VA | Registered: Mar 2008
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Tracy9
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I feel so defeated, but I am so sick of whining about this crap.
I noticed my arm was swollen after I posted this. When I got to Outpatient Procedures, they took one look at my arm and said no way were they putting another heplock in me.
They called my doctor's office and he instructed them to send me to the ER. They made me wait in a room while they gave the ER a full report, and then walked me down and brought me straight into a patient room. (...do I look like a flight risk???)
They did an ultrasound of my arm and I have ANOTHER FREAKING blood clot. It is in my right arm, superficial, at the IV site, just like the other one was at the PICC site that then somehow morphed into a "life threatening DVT."
So the ER doc called my LLD who instructed them NOT to send me home with another line, to fax them my ultrasound report and to call him tomorrow for further instructions on how to get my IV Rocephin. He did have them infuse me in the ER. I tried to slip the nurse $20 to leave the heplock in, but it didn't work. Just kidding, but I was thinking about it.
They said most likely I will have to go to Outpatient Procedures every day and be infused there. I am waiting to get a port. I just need my PCP who is out till Thursday to fax the order over.
I am guessing there is a good chance I"m off Rocephin now for a couple weeks, dammit. I'm just too sick to travel back and forth to the hospital every day, and next week is Cody's school vacation week and we are spending it in New Hampshire.
As important as the port is, I will put it off another week before I disappoint my son who never gets to go anywhere!
I was almost in tears, gearing up for a good cry, but Blake took me to Friendly's and got me a chocolate ice cream cone with sprinkles and was making funny faces at me in the car from inside Friendly's. Truth be told, he mooned me; lucky he didn't get arrested.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
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Tracy, So sorry this is happening.
Can you do IM shots of rocephin until you get the port in? I did really well on them for several months until I developed hard painful lumps at the injection site. Even then I was able to keep going for awhile.
You are not defeated!! This is temporary.
Terry Posts: 6286 | From Oregon | Registered: Jan 2006
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feelfit
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Member # 12770
posted
Tracy,
I'll give you this, you are a trooper. If I had these problems, I couldn't handle it. i would be SO afraid by now I would have given up on the lines.
Have a great vacation, you deserve it!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Tracy9
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posted
Thank you, I feel like it's "GAME ON" and I'll be damned if the blood clots are going to win!!!
Terry, what an awesome suggestion. I just called my LLD who didn't seem to agree. He told me to just get another heplock in the other arm. I called Outpatient Procedures and they said they ain't touchin' me without a new order. Which of course, cannot come from him, because he is not on staff there.
So my PCP is out today. I see him tomorrow to have him take a look at my arm (at the insistence of Outpatient Procedures and the ER yesterday.) My appt is at 3:20 with him, and of course Outpatient Procedures closes at 4.
Now I don't think there is any way in hell my conservative PCP is going to order a new heplock for my other arm (which had/has? the DVT in it) without seeing me first if at all.
So my guess is, I'm pretty screwed all around right now until I get the port. I'll ask my PCP to order the IM Rocephin but I cannot imagine he will. He doesn't want to touch any of my Lyme meds with a ten foot pole.
My only other idea and I will do this is to email Dr. L, whose care I am technically still under and see if she will order me the IM Rocephin.
I think it was a great idea, Terry....especially with going to New Hampshire next week and being able to be in the pool with my son.
I hope I don't have to go without the Rocephin for a couple weeks if none of this works out.....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TerryK
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posted
My LLMD (who I consider to be top notch) seems to think IM rocephin is fine. I don't understand why your LLMD would not order it at least until you can get the port installed. Did he say why?
In any case, keeping my fingers crossed that you can get an easy solution to this. I don't think being off for a few weeks will make a huge difference. I didn't start backsliding until a few months after I'd been off rocephin.
If you can't get any solutions for rocephin for now, perhaps they can put you back on orals until you can get back on IV?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Tracy9
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I'm glad to hear you didn't start backsliding for a while, so the two weeks or so if I have to go that route won't kill me.
I could call my LLD again tomorrow and tell him I can't get a heplock in the other arm, but I guess first I should see what my PCP says, who knows, maybe he'll do it.
The good news is I AM on a bunch of orals too; I'm on Bactrim, Mepron, Zithromax, and Plaquenil in addition to the Rocephin....so I should probably not fare too badly, I guess....if I have to miss a couple of weeks of it.
Frankly I'd rather go to New Hampshire without a heplock in my arm....though I will probably spend most of the week in bed I am hoping to get in the pool a bit.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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I heard back from Dr. L, who can't write me a script for the IM Rocephin.....but she also said she does not think it is safe for me to continue with heplocks anymore.
So my last ditch effort is to ask PCP for script for IM Rocephin, which I highly doubt he will do....so I'll probably have to wait a couple of weeks for the port to resume Rocephin.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Okay, did I mention I feel defeated????
I just got home from my appointment with my Primary Care Physician. He basically fired me.
He said that although I had gotten him the two letters he requested in order to order the port for me, he changed his mind and would not order it.
He said he doesn't really believe in all this, he is very opposed to all the medications I am on, he thinks it is dangerous, he knows nothing about it, and he thinks he has no business being my primary care doctor due to this.
Much of this came after he asked me why I had Dr W now instead of Dr L, and I stupidly but honestly told him what happened to Dr L.
Of course he wouldn't order IM Rocephin for me, and futhermore he told me Outpatient Procedures at the hospital called him and said they will not put any more heplocks in me. They said it is not a safe situation for me anymore. Dr. L. said the same thing.
All I need is a port.....my LLD REFUSES to order it because of the distance I live from him which I think is stupid.
I am going to call the hematologist tomorrow and beg her to order it....she is more familiar with ports because she deals with cancer patients, and my PCP said he will back me up on that one and talk to her if need be.
Other than that, I'm done with him. I'm going back to my old PCP who was really great, but when I got too sick to work I lost my insurance and had to get CT Medicaid and he is over the line in Mass. Now that I have Medicare it won't be an issue. If the hematologist won't order the port, I'm going to see if he will.
I am so down about this. The silver lining is we go to New Hampshire for a week and there is a great indoor pool and I dont' have a line....and Cody doesn't have one yet either.
I am going to be so stressed until I can get someone to order this port for me!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Don't know the law in Connecticut, but technically in Virginia a doc can't fire you without sending you a 30 day letter first to give you time to find a new doc. Hubby has gotten 2 of these I think.
Also, in Virginia if you have an order for an out-patient procedure from a licensed M.D. it doesn't matter if the doc is on the hospital staff. Hubby has had orders from docs in Maryland and North Carolina and Missouri that were all honored at local hospital. This included orders to replace PICC lines and various CT and MRI scans.
Personally, I think I would be hesitant to get a PICC line and not even sure I would attempt a port in your situation.
Good luck with whatever you decide.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tracy9
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He didn't outright fire me, I guess, but he pretty much did. I think at this point going back to my former PCP is a good idea anyway.
A chest port is really my only option now. I just can't get any of the doctors to write the order. The hospital will honor it if someone would write it.
I am going to call the hematologist who evaluated me for a clotting disorder and recommended the chest port to see if she will order it. I'm just so scared no one is going to.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Well the story just gets worse. Now I got a voice mail from Dr. W's office saying he does NOT want me to get a chest port. I know one of his requirements is that your local PCP agree to be available if you have any issues.
Great, obviously my PCP talked to him. I need to make an appt with my former PCP ASAP, but without Dr. W on board, I won't be able to get any line! I am hoping if my new PCP is amenable to it all, Dr. W will agree with it. Ugh.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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Are you seeing results with any of the treatments you're doing Tracy?
I've stayed far away from the IV therapy since 2005, but if I had a choice, IV Vancomycin would be my friend. Of course that's assuming I was monitored carefully -- since I like my Kidneys and all.
If I was in your shoes though, I would definitely steer clear of the IV lines.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
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Member # 7521
posted
Well I am having debilitating fatigue, but many of my other symptoms have improved or cleared since I've been on IV for ten weeks.
My pain is almost completely gone. My balance is better, I can walk. I am no longer getting nightly rashes. I'm sleeping better. There are many, many things that have improved.
I am however struggling with profound fatigue and bedridden most of the time, but many have told me that is common after a month or so on Rocephin.
I dont' want to go off it and don't know what I am going to do. This is so upsetting to me, because obviously no matter what I'll be off it for a while while this gets sorted out.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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With all the treatment you've been on (and still are on), you should hold steady without the IV long enough to recover, and then you can go back to it.
I know exactly where you're coming from. I went through the same thing physically and emotionally. I was so incredibly hell bent on keeping the IV.
You know my story: for those who don't, I was prescribed IV and oral antibiotics by a doctor who "never" prescribes them, and at the time, he was all I knew. I knew nothing pretty much.
I stayed on the IV even after I developed an allergic reaction to one of the drugs. We're talking hands doubling in size, my face looked like a punching bag too. I still stayed on the drugs. Then I developed Sepsis, and I still waited.
It's called desperation, we'd be willing to do just about anything when as ill as we've been in our lives (some of us, like Tracy), but now -- looking back, there were other options, I just didn't know about them at the time.
You'll get back onto the appropriate treatment Tracy, and right now your body really needs time to heal from these lines. It's not the end, I can promise that. You'll get where you're trying to go.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I have been following your posts and feel so badly for you. You may remember I wrote you about my daughter who has a clotting issue like yours. She cannot get a port or PICC line because of it.
We go to her neurologist seven days a week to get an IV and be infused. We were lucky one week that her vein stayed open and we were able to infuse at home for six days. Now it is maybe every two days we have to go there. We are very lucky he has an infusion room to get these meds.
At the beginning we were flushing the line, then infusing, then flushing and then heparin. Well, it seemed that she would clot faster with the heparin, which I know goes against everything. So her hematologist had her stop the heparin entirely. Now we just flush, infuse, and flush.
When she was having trouble with the vein clotting off after getting the IV, they would remove the IV right after the treatment so we would leave with nothing in her arm. I was wondering if maybe this would work for you for a while until your body heals. I know it is more work and more traveling, but at least you will get your medication.
If you want the name of our doctor, I can email it to you.
Lisa
Posts: 51 | From Connecticut | Registered: Sep 2008
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Tracy, I understand what you're feeling. I lost my Picc Line and was helping me dramatically.
I'm fighting with insurance to get it back. I wanted to tell you that I had a bad oozing and swelling problem and it ended up being a reaction to the bandage. I switched to the Silverlon patch instead of chlorahexadine patch. It made all the difference in the world.
If you get it back, watch what it is cleaned with and covered with. It made all the difference to me. Truesun
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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Tracy9
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You guys, thank you so much for your encouraging words. I feel so much better reading them.
I know I am on a lot of orals and I should be okay without the IV for a bit. I am caught in between several doctors right now, none of whom will order a port for me, and it is just a nightmare of phone calls and dead ends.
Lisa, I did turn out not to have a clotting problem, and I think I see your daughter very active on www.lymefriends.com which I think is great. I've just had a few too many heplocks.
I have to explore every avenue, next week I will call around and see what my LLD wants me to do. I am very upset he is suddenly calling and saying he no longer wants me to get a port. This is clearly going to take some time. Since my PCP is being such as ***, I have to go back to my former one who is good, but can't get in till May 11th. Then he'll have to write a letter that he will cover me for any potential issues, etc.....that's what my LLD requires.
I am also going to call my former LLD Dr P. and see if he might be willing to order a line. There really isn't any reason I can't get a PICC line now that I know I don't have the clotting disorder.
OMG I never knew this would be such a nightmare. I will keep telling myself, IV isn't the be all and end all, and I did have ten weeks of it already, and I am still on four oral antibiotics.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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