Jump to content

WHAT IS HAPPENING TO US????


lisaRN

Recommended Posts

Dear God, Please Help Us!

I have had so much difficulty lately with the computer and have not been able to post....

Ahmed came home from the hospital on Oct 5 with IV antibiotics...... for the post obstructive pneumonia and 4.5 cm abscess he was diagnosed with in the hospital.

The IV therapy has been a challange ..... he has been getting 1 gram of Primaxin every 8 hours .... @ 12am, 8am, 4pm..... each dose takes about 2 1/2 hrs to infuse because he was getting nauseated when it was running faster.....

As of last Wed.... he has also been getting IV hydration fluids....all of which I have been administering.... The IV company dropped off the supplies on the first night a nurse showed up to get signatures from us for treatment and insurance purposes and that was the last time we saw a nurse.... I have been changing his port-a-cath access and everything...

When I questioned the IV home care agency.... they said " but you are a nurse arent you? " ..... God help me if I wasn't..... I am having a hard enough time with this.....i dont sleep more than 3 hrs at a time because the pump is always beeping and I have to physically disconnect the hydration fluids to connect the antibiotic and vice versa.....

I am a home care nurse myself....i do not understand how non-medical patients and their non-medical caregivers are doing this stuff 24/7....

This weekend was so difficult... Ahmed has declined significantly and the tumor that was in the airway seems to be obstructing at a greater degree....the docs think that as the pneumonia and abscess are breaking down from the antibiotic that the thick secretions are getting hung up on the tumor in the airway causing a bigger obstruction.....

he is going to see the surgeon tommorrow....hopefully to get a bronchoscopy ASAP.....hopefully the surgeon can laser out this tumor again and give him some relief....

we shed a lot of tears this weekend....he thinks he is dying an keeps talking about money.... i am 36 years old with a 14 year old son.... I AM NOT READY FOR THIS !!!!

I thought things were going good with Iressa, the doc decided to stop it again as of yesterday in case this pneumonia is related.... we may be able to begin again over the weekend if the surgeon rules out interstitial pneumonitis....

Ahmed's hemoglobin yesterday was 8 and the onc wnats to give him a blood transfusion on Friday.... we had another CAT scan this past friday....only the preliminary report was back, final due tommorrow.....

the prelim seemed to imply that disease appeared the same or slightly worse than the last scan..... i don't understand how Iressa could work so Fabulously in the first 4 weeks then turn completely around so fast....

Ahmed was having trouble breathin earlier tonight.... i called the onc and he was asking if we wanted him intubated if things got worse..... I said " Of course, HE's FULL CODE!"....I STILL CAN'T BELIEVE ALL THIS IS HAPPENING! What happened to us???

I feel like I am just melting away......God PLEASE HELP US..... I can't stop crying...

I am so sorry if I am depressing anyone....I just needed to vent....

:cry::cry::cry::cry::cry::cry:

Lisa :cry::cry::cry::cry:

Link to comment
Share on other sites

Hi Lisa! We've had some folks asking how you are doing. So sorry to hear that things are rough right now. I understand. I got a bit of bad news about my Dad today. Lisa, it's so unfair and I'm so sorry. I wish that I had a magic wand...........I would wave it and make your hubby better. Since I have no such thing, I have prayers, many prayers, for you and your family. I pray that things improve.

In my thoughts and prayers~~~

Angie

Link to comment
Share on other sites

Lisa,

You need a break. So you're a nurse, so what? You are paying for a service, correct? Why do they assume that YOU are any more willing/able to do the job than someone without a medical background? You are willing to do it, but Lisa, you need some sleep! I'm not saying take off and head to a resort leaving your husband alone, just get that company to do it's freakin' job so YOU can get more than a cat nap!

Iressa...I was taken off that as it was being used as a suppressive therapy trial. When he took me off, my oncologist told me that just because I had a horrid time with it did NOT preclude me from using in future if needbe. Of course, if it IS causing the pneumonia, you want him off it - and something else as a "Plan B/C/D..."

Call, Lisa. Get a nurse to "spell" you. Even when you are working, you are not on 24/7 call. NO ONE can handle that for long - it catapaults ya into "helpless/hopeless" mode because your brain is too foggy to function.

You have my best,

Becky

Link to comment
Share on other sites

Lisa,

So many of us have been worried about you and Ahmed. While I am glad you have posted I am so sorry that the news is not good.

I believe that Don Wood's wife Lucie got pneumonia from Iressa, a somewhat lesser known side effect.

You are right, you are too young to be going through this. Do you have any family or friends close by that can help you. You need to take care of you so that you can take care of Ahmed and your child. That doesn't mean you have to do it all yourself.

I hope the procedures that are coming up help Ahmed. You will be in my prayers.

Link to comment
Share on other sites

Lisa,

I am sorry to hear that things aren't going well right now. I agree with Becky - You need a break. Nurse or not, I believe that dealing with cancer is much harder mentally on the spouses since they are the one that needs to provide so much emotional support to their spouse. Call and get some help - you will still be present to make sure that Ahmed is getting the best care but it will help eliminate some of the stress and give you a few minutes for you. It is so hard to be strong when you are exhausted.

Please know that you are in my thoughts and prayers. I truly hope that tomorrow brings a better day for you and that your husband finds some relief!

Wendy

Link to comment
Share on other sites

There you are!! As I told you in my PM, I have been so worried about you and, even though things are really stinko for you right now, I sure am glad to hear from you.

Lisa, just like the others said - you cannot keep up this pace. My instinct tells me that, particularly because of your nursing background, you might not feel comfortable with a friend or relative to help with these infusions and fluid drips, beeping machine, etc., etc. I don't know if the company that provides your supplies actually provides nursing care, but is there any chance that you can contact some type of in-home nursing service to at least give you some relief for a 6-8 hour night (or day) sleep? Will your insurance cover that? If not, maybe it would be best if he went back in the hospital until this crisis passes. Is that do-able?

Please hang on and take a lot of deep breaths. You sound really stressed and if you don't get some help, I'm afraid for your health and your ability to continue to care for Ahmed and your son.

By the way, how is your son coping with all this? What is his name?

All my love and prayers, Lisa. Please let me know how I can help you.

Love,

Peggy

Link to comment
Share on other sites

Hi Lisa

Sorry to hear things are so rough for you at the moment. It is scary how dramatically things can change, but remember that they can change back too!!

I ditto what everyone else has said about getting some assistance if you are able to - you will cope much better with everything if you are well rested.

I wish there was something I could do to help. Please know that I am thinking of you all and hoping for a rapid improvement.

Karen

Link to comment
Share on other sites

You post just breaks my heart. I won't repeat what everyone else has said, but I can't believe the home care agency has not scheduled nurse visits for Ahmed. This year I ended up needing IV's from an infection. The nurse trained us in how to do the procedure and came to change the picc line dressing and was on call if we had any problem. They get paid by the visit so why wouldn't they wish to schedule them unless they are under staffed?

The truth is, your medical insurence is saving tons of money by having him home and not in a hospital. Why not call them and ask what is covered? If you were a secretary they would be paying for nursing visits....

I know this is hard. I can't imagine how you're still standing. If you were in Michigan I'd be glad to come give you a break.

Rochelle

Link to comment
Share on other sites

Lisa,

it sounds like the weight of the world is on your shoulders. Be very careful about not taking time ti care for yourself. Perhaps you can enlist your son for just a little time of relief. Many of us hve been through this battle several times, and there is no easy way. We are here to support you and listen. PLease post when you can, we are here for you.

Cheryl

Link to comment
Share on other sites

Lisa,

I am so sorry to hear all that you and Ahmed are going through. You have every right to come here and scream and vent as much as you need to. Please know that I have been thinking and praying for Ahmed and hope the bronchoscopy can give him some relief.

Please listen to the others and get some help. Just because you are a nurse does not mean that the home health agency can NOT do their job. Call them and ask for help. You have to get some rest, you can not keep going like this. I don't know, but I wish you had some family in the area that could help you. Don't be afraid to ask for help.

Please keep us posted,

TAnn

Link to comment
Share on other sites

Lisa, so sorry to hear everything you guys are going through right now. I just want to let you know that many prayers are being said for you, Ahmed and your son. Just be sure to take care of yourself, Becky is right, the helpless/hopeless feelings are much worse when you are not feeling rested and up to par. Hope everything turns around for the good.

Love and hugs,

Nancy B

Link to comment
Share on other sites

Lisa, I too was distressed to read your post and I only hope things are going better for you today. We all have to have trust, in our doctors and in ourselves, and as many advised in their posts, please get some time to yourself, even it it's just a little walk around the block. I know it helps me tremendously when I get to "escape" from it even for just a little while.

Cyndy

Link to comment
Share on other sites

Dear Lisa,

My heart breaks for you and I have no idea what words can be said or written to you to give you any comfort; but I KNOW that there are many people in this forum that will find a way to console you. I too am 37 years old with two sons, 14 and 10 and cannot imagine how hard this must be for you. Please know that I will be thinking about you and will pray very hard that you find some relief and strength to help you thru this nightmare.

Love,

Beth

Link to comment
Share on other sites

There isn't much left to say except I agree that you need some relief. Your insurance company should provide for some help...it is saving them tons of money. I hope things improve soon and that you get some rest. I know when I am exhausted, I see everything in its worse light..even though it sounds horrible what you are going through. I have Ahmed and you in my prayers and hope that the meds work and the procedure can be done to give him some relief.

Nina

Link to comment
Share on other sites

lisaRN Posted: Tue Oct 26, 2004 6:55 pm Post subject: WHAT IS HAPPENING TO US????

... the prelim seemed to imply that disease appeared the same or slightly worse than the last scan..... i don't understand how Iressa could work so Fabulously in the first 4 weeks then turn completely around so fast....

/////////////////

Lisa :

I'm sorry to read about this turn of events. As with the others I'm praying for a turnaround for you amd Ahmed. The above statement that you made caught my attention. Coincidentally, I spoke with two patients and caregivers at my wife's oncology med group yesterday. Two older men with NSCLC receiving Iressa with good responses initially then a reversal. In one case a significant reversal. I have no other specifics about these patients other than they both have advanced NSCLC. Have you ( or anyone else ) heard anything about this being a pattern with Iressa ?

Link to comment
Share on other sites

So sorry to hear about this. I agree it is ridiculous to not have more nursing visits. Could they use a different antibiotic like Zosyn? That could be given through a programmable CADD pump that would only need to be changed out I think once per day at most. Primaxin is too unstable in solution to use a CADD. I'm not sure why the Iressa stopped working so fast, is it possible the changes they are seeing on the scans are from the infection rather than the cancer?

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.