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What are the chances?

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

So my first port was put in on a Thursday, and I was in the ER Friday night with an infection. Admitted for the weekend on IV antibiotics and they removed the port. I was told I am the only case for this hospital or this surgeon group to have gotten an infection the day after insertion.

Second port inserted - no problem.

Fast forward 8 months. I made the decision to get off Coumadin which meant removing my port. I got it out on Thursday. Guess where I went Friday night, and where I am today? Yep - infected again.

Since I was here anyway, they've been trying to dx the ongoing upper abdominal and chest pain, and why my hemoglobin keeps dropping. When omeprazole or pantoprozole didn't work anymore we assumed it wasn't heartburn. When my pancreas lit up on the PET and my enzymes were elevated we assumed it was pancreatits causing all the troubles. Well, now my enzymes are normal and I still have trouble, but not as bad as when they were elevated. Since I'd just gone off Coumadin for a week, they suspected another PE. So one more scan for me. This was my 5th CT in the last 9 months (plus 3 PET, an MRI and several chest x-rays). I am sure I glow in the dark now. ;)

No PE - good news! They are trying me on a different heartburn med. I've been getting the "GI cocktail" which is pretty much like the swish & swallow I had before, and now lansoprazole (two tablets that dissolve under the tongue). Today the pain level is lower - still there, but lower.

My blood pressure is way down. I've been under 100 the last two days. I'm normally 100-115 over 60-70. Now I'm running from 89/56 to 99/68. Crazy. On admission I was 139/89 which is very high for me - I've only hit that once before. Before coming in to the hospital my temp was 101. The highest it has been the last couple days is 99 (I'm normally under 98). The area of redness has shrunk way down, is cooler to the touch, and is more pink than red now.

The good news is I should get out of here today - the infection responded well to Vancomycin, and now they've switched me to Doxycycline and if I'm doing ok with the switch I can go home. I have to schedule my colonoscopy for next month, and have to schedule an upper GI with it. If the abdomen/chest pain has not resolved by then, they insist we need to find out what it is. If it has resolved, I won't go through an upper GI needlessly. And since I have to go through the prep and the appointment anyway I'd rather do it together if I have to do it at all.

I'm hoping I can finally get to the point where I only go in every 3 months for labs and 6 months for scans, and don't see another doctor or medical facility in between. I'm MORE than ready for that! I shouldn't complain - I am cancer free! But, it is getting harder to believe I'll ever get to just move on and be done with it all. What next? has become my big question that I do not even want the answer for. I'm looking forward to the answer being - nothing medical related!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Wow, Kathryn- you've been through way too much! I'm sorry to hear of all the complications and things you've had going on lately.
I will be glad to hear from you soon that all is going well! I will pray for that. Hang in there- you're sure brave and have a good attitude.

Hugs to you,
Lisa

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Vancomycin has side effects that include low BP.

http://www.livestrong.com/article/49717-side-effects-vancomycin-antibiotics/

Hope you're doing better now!

John

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I've been complaining about the ringing in my ears (which I have all the time) being way worse and driving me mad. But I've just been complaining to my husband. I'm off the vancomycin now, so hopefully the ringing backs off soon.

I'm allergic to sulfas, erythrmycins, penicillians, and cepholosporins, so with my first port infection and this one, they went to IV vancomycin to treat it since it takes out about 95% of organisms. I didn't look up anything about it since I tolerated it so well last time.

I did have a lot of pain with the first IV site. They put in a second IV for my CT scan because they needed a larger catheter and larger vein. Afterwards I had them switch out the IV site and do the rest of the vancomycin into the large vein inside the elbow instead of the small one in the back of my hand. My hand got all red and swollen (even my fingers swelled). After they removed the IV Saturday night it started getting better. It sitll isn't back to normal, but getting close. But the drug didn't bother me once it went into the larger vein. I still have that IV in, just in case, but I should get released today and it should come out.

It seemed to make me really sleepy which I didn't remember from first time around. But that is easily solved - go to sleep. ;)

abrub's picture
abrub
Posts: 2149
Joined: Mar 2010

Feel better soon, and be done with all of this!

I, too, had rare complications with my port placement, and ended up overnight in the hospital for a re-do the next day. My port was removed 2 years ago without complication, except that I cannot tolerate IVs.

For my surgery in 2 weeks (hernia repair, plus exploratory) they'll be placing a central line, so I'll only have the IV for a couple of hours rather than 5 days.

Take care.
Alice

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

if this hasn't been performed?? i would ask for a blood culture. there are cases where the blood becomes infected and what can happen is the bacteria can attach itself to the catheter and the result is pain and redness.if so it may require a different antibiotic? until the blood is treated the infection will not go away.

ed

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Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I had no problem ever with my blood or clotting prior to chemo. It is considered chemo/cancer induced. The standard is to be treated a minimum of 6 months. I was told that I'd have to stay on it as long as I kept my port, because that may have been the cause of the clot. But since it had been 6 months, I could go off if I had my port removed.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Oh yes - first port infection was cultured. Very rare anaerobic bacteria which didn't even show up on the cultures until after I was released from the hospital - it took longer than usual to grow and show. The doctor told me it was a bacteria never found on skin.

They cultured again this time. 2 bottles of blood from each arm in the ER, and two bottles from each arm the next day in the hospital. My hemoglobin was already low, but has dropped even farther. I think it is from all the blood they've taken. Lately every office keeps taking their share! Friday mornng I had two tubes taken at the GI doctor's office. Then in ER that night the 4 bottles and 6 more tubes. The next day 4 bottles and 4 more tubes. I was relieved when they only took 2 tubes on Sunday, and then only one yesterday to re-check platelets (which have also been dropping).

Nothng had shown on my cultures as of Sunday afternoon. I'll be calling to check and see if anything showed yesterday or shows up today. With my first infection they didn't have culture results till Tuesday (and I was admitted through ER on a Friday night).

AnneCan
Posts: 3692
Joined: Oct 2009

Kathryn,

You have really been through the ringer. I hope all is well for you soon.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so sorry you've been through so much. I hope you'll be getting on a more even keel very soon!

*hugs*
Gail

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Home from the hospital and have NO intention of going back, other than twice per year for scans!

I'm on Doxycycline for a week, and then am to follow-up with a primary. I have my colonoscopy and upper GI scheduled for July. I'm on a time-release Prevacid (dexlamsoprazole) for now. If my abdomen/chest pain resolves I can cancel the upper GI.

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad to hear you are home now. Take good care!

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