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forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hello Dearhearts,

I am safe at home, my favorite place to be these days. I so hate hospitals!

After spending a long 7 hours in the ER, and feeling like I was at my lowest point, I convinced them to let me go home. I have been resting most of the day, but I know that you all are waiting for my update. So here goes..

I thought that I was just getting iv fluids. Wrong! I went to a smaller community hospital two towns over, since my reg doc and I both feel that the care and the speed in which I would receive that care would be so much faster. I have been to this hospital before, for the same reasons and found it to be a really nice local option. Since I was supposed to just have fluids, the choice to go there over the big university hospital made sense.

Well. I got some fluids after many tries at starting an iv. Then was told that I would be getting another ct scan. That makes three in the past month. That is a lot of radiation, and given my history, I don't want any extra. But, I was in such a low place both physcially and emotionally I said okay. They wanted to compare to last weeks scan. That turned into another nightmare experience. The iv blew just as the contrast was starting to go in. So I needed another one started, right there in the scan room. So scary nurse ratchett came in the room demanding to see all of my arm, which I had told them only some veins work. I told her no, not to touch me and asked for the earlier nurse who was able to start the iv with kindness and compassion. There was another awful nurse before her, which my hubby told to leave. She slammed her paper work down and left. It must have been a bad night for the nurses. But I was able to luck out with this lovely second nurse. Anyway, she was able to come to the scan room and understood why I was upset and got another one going.
I will talk to the onc tomorrow about getting the port put in. This has become so hard on top of all the other hard stuff, I really do not need anything else to be so difficult.

They gave me iv pain meds, which helped after the second or third dose. I don't really remember.
The scan showed the same pocket of fluid and the ER doc then called over to the cancer center and talked to the onc on my team. They are still thinking it "may" be an infection, although this time they used the word abscess. My blood counts are very very low including the wbc. The doc said it is possible to have an abscess/infection and not have an elevated white count. So they hooked up some antibiotics to the iv and told me that they were going to transfer me to the "big house". Hubby and I wanted more info at that point. So at first the doc said they were going to transfer me so that they onc could take me back into surgery to drain the abscess and to better manage my pain. Whoa, wait a minute, slow down.. No one has said for sure there is an abscess/infection, so no way am I going back into the O.R. without better proof. Hell No!!
We talked to the ER doc for awhile and the three of us decided that if I could manage the pain at home, then it was okay to go after the antibiotics finished dripping. He got back on the phone with the onc team and they agreed.
Sometimes you really need to keep check on these teaching hospital docs (my team). First they want to rush me into surgery and then they say it's okay to go home and manage the pain there with oral meds.
So we went home sometime after 1 AM. I see the onc tomorrow and if nothing else happens between now and then, we go from there. Where exactly, I don't know..

As far as my counts go, I am at the exact cut off for transfusing. It sucks, since I am only a tiny bit from needing blood but if I can manage without it, then I am better for it. My hemoglobin is 8 and my hematocrit is 24.6. the cut off for the crit is 25, but since the hg is 8 and that is the cut off , they are either waiting for the hg to drop or the crit to rise. if I drop any more, I get transfused.

As far as the fluids, I don't feel like it made a difference, but it's so hard to tell at this point. I am beyond fatigued and the pain and pain meds really are taking a toll. So, I really have no idea. I am just resting mostly and trying to eat little bites of anything.

Hubby is napping right now, poor guy. This is really hard on him too. I wish I could spare him some of the stress and fear he must feel. If I feel fear, he must really feel it. He tries so hard to be strong and just take care of me, I just feel so bad for him.

Anyway, that is my update. I'll try to post later on. I need to lie down for awhile.

Thank you all for sending me strength and positive energy. I have so little right now to give to myself, but I gladly share that with you too. I know that so many of you are going through you own struggles right now, I send you hugs and hope that you days will become easier also.

(((hugs)))
Lisha

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Holy ****. Good luck with the onc. Definitely get the port. What other tests are they doing to confirm abcess?. I know the transfusions I had made me feel sooo much better and gave me energy. Rest honey.
You're in my thoughts sweetie.

Beth

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Gosh, Lisha. I'm so sorry this has been such a nightmare for you.
I can't believe the behavior of the nurse(s).

I hope you sleep restfully with beautiful dreams this evening.

Hugs,

Jim

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Lisha,

Wow, not what I expected to read! How dare nurses treat you that way!

And then to have confusion about abscess or no abscess...well, don't know what to say. I'm sure you will get more info tomorrow and then will have a better idea of what's next.

We are with you and your husband... praying for strength for both of you. And for relief from your pain. Please keep us posted as you can.

Hugs,
Donna

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I wish there was something to say to make you feel better, I admire you for taking a stand, don't let them bully you. Rest Lisha, as time passes so shall this, you and your husband are both strong people, stay as positive as you can. Praying for you guys Vinny

miss maggie
Posts: 929
Joined: Mar 2010

Dear Lisha,

Once again I am speechless at all you have to go through. The toll on hubby is also
to be considered. I just hope someday you will be well and look back on this time
as a distant memory.

I wonder, exuse my ignorance. How will they find out if you have an infection or
abscess?? Even though your blood work is not showing anything. Hopefully without surgery. I do know infections and abscess can cause pain. I also wonder if IV anti biotics is a
better option? It's about time you will have a port.

I send you positive energy. I hope all goes well today. Love and hugs Maggie

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Lisha I'm speechless to everything you have been through! When is this nightmare going to end??? I'm praying with all my heart that you start seeing some relief and start hearing some answers. I can't believe that from all docs you have seen, they have not been able to give you an answer and have taken care of your pain/problem. How frustrating for you and your husband! Hang in there sweetie....praying and sending you lots of positive energy. (((((HUGS))))

Sincerely,
Liz

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