Earl in the hospital - via ambulance

[milliken2]

Hello Everyone;
We went today to get Earl's second Vidaza treatment. He said he wasn't feeling great - but then he has those days. We got to the Dr.'s office - and I dropped him off at the door - and went to park the car.
I got into the office - and he was sweating profusely, said his chest felt funny - and wanted to lay down on the floor. Of course, I called the staff nurses - and they called 911 - and off he went to the local ER. We were in the ER cubicle for 6 hours. He was supposed to get one unit of platelets today, which they finally administered to him there. Finally got up to a room around 6:30 PM - and of course - I had to tell them all the meds he was getting - and they couldn't believe I could rattle it off like that.
Finally sent him for a chest Xray, CT scan, and doppler of his left leg around 8PM - got back around 9, and the young new grad male nurse (who was scared to death of me) said they were going to transfuse him with one unit of blood. Like I told him - one unit does nothing for Earl, and then I asked if he was going to get the Desferal - and he knew nothing about it.
So - I had the charge nurse call the hema/onc - and he got on the phone with me. I asked about the Desferal - and he said "Of Course he is supposed to have it. Doesn't he always get it after a transfusion?" To which I replied
"Yes - but the nurses don't have an order for it - and I handed the phone to the charge nurse so she could take the order. About a half hour passed - and the young male RN came in with the tubing for the blood. I asked him about the Desferal - and he told me that they don't use it on 'in patients'. Then I reminded him that we are in the infusion lab at least once a week - and he ALWAYS gets the Desferal. He still said he couldn't give it. At about 10:00 PM I left for home, and when I got here - I called the hospital pharmacy - and told them point blank that I would hold them responsible if Earl went into kidney or liver failure. Guess what - they ordered the med, it is already on the floor, and I just got off the phone with the supervisor so that we are all on the same page. Sometimes, I just wish I weren't a nurse - but then I realize that I am glad that I am, because he would be totally lost.
Of course, prayers are appreciated.

Beth

[gramous]

Sorry to hear that about earl...I hope that he'll can get better today. Don't stop to fight.... a lot of hugs from belgium... take also care of you, Beth. béné

[PattiDean]

Beth,

So sorry to hear about Earl, there will be prayers for both of you.

You are always so helpful to everyone on this forum with your medical knowledge, and thankfully you are there for your husband to make sure he gets the best care possible. Each of us, and Earl are thankful that you are our "nurse".

You are in our thoughts Beth! Hoping for better news today.

(((HUGS)))


Patti

[Al's Wife]

Beth,

You tell Earl I said to behave himself, that we need you too much and if you are having to give him all this attention then you don't have time for us!

All (trying to joke) aside, I am so envious of your knowledge and ability. He is one lucky guy to have you on his team and so is everyone on this Board.

Hugs, prayers and love are coming your way. I so hope he's feeling much better today.

[Birgitta-A]

Hi Linda,
Didn't you get any explanation to Earl's sweating and illfeeling?

You did a good job getting the Desferal. I could never get Desferal if it wasn't ordered at least 2 days before. They loaded the pump with Desferal especially for my dose according to my weight. I think it is different when you get Desferal during 4 days from a home pump as I did.

Hope Earl will manage well when he is receiving the second cycle of Vidaza!
Kind regards
Birgitta-A

[Sally C]

Dear Beth,
I agree what everyone has said about you - you are a treasure to the forums and to Earl. I hope and pray that he will improve and that things will settle down for you both. I don't know where he would be without Nurse Beth - or the rest on the forums as well.
Take care of yourself!
God Bless,
Sally

[bebop]

I thank God Earl has you Beth! I am keeping you both in my prayers!

[Mydad]

You are awesome Linda.

Prayers and hugs to you both!!!

[milliken2]

Hello All;
Well - I got to the hospital today - and Earl wasn't in his room - I asked the nurse where he was, and he told me they sent him down for a stress test. That's fine - but they left the oxygen running in the room with the canula laying on the bed - and you are billed for how much you use. He came back up from part 1 of his stress test, and the cardiologist's PA came in - and said they would be sending him down in an hour or so for the second half. We sat there, and they never reconnected him to his monitor, not did they start his IV back - of course - they did when I was done.! Meanwhile - I asked if he was going to get a lunch tray - at the nurses station - and they told me he couldn't have one due to the test. But - lo and behold - the PA was there, and she said he most certainly could have his lunch since he had been NPO (Nothing to eat - or more medically put Nothing Per Oral - hence the NPO) since midnight - they finally brought the lunch tray around 1:30 or so - and wouldn't you know it - he was just going to try a few bites when they came to get him for the second half of his test.
Bad news - the stress test shows some abnormalities - so he has to go to Pittsburgh tomorrow for a cardiac catheterization. Now - since we have been using West Penn Hospital for his other auto immune diseases - wouldn't you think it would be reasonable to send him there? No - the charge nurse comes in and says they are sending him to Shadyside Hospital - to which I replied 'NOT" - his insurance does not cover it there, and we would have to pay the 40% for out of network. I don't think so. I gave her 2 hospitals to choose from - West Penn, or Allegheny General - and she comes back with Mercy Hospital. I ended un talking to the local hema/onc on the phone, and told him where I wanted him to be transferred - so tomorrow AM - he is going to be transported by ambulance, and I will follow. I just have to get our bags packed, because I am staying there. I have farmed Hannah out to my dear friend, and she's doing fine.
Thanks for being here for me. I will have the laptop with me at the hospital and try to keep in touch.
((((HUGS))))

Beth

[milliken2]

Thanks everyone for your words of encouragement and confidence in me. I do what I am trained for - nursing and taking care of people - and since you are all my extended family - family comes first. Thanks again everyone for the thoughts and prayers.

Beth

[maria&lola]

As you know, you're both in my thoughts and prayers. I'm sure many people, my mom included, feel like they are at the mercy of the docs & nurses on duty. Take care and try to rest, although I know it's not easy given the situation and environment!

[Chirley]

Hej Beth,

I'm a nurse too and isn't it eye opening to be on the other side of the fence.. It's astounding how often medical and nursing personnel try to bully you into doing or accepting things without question.


I just hope I was never like that and I deeply regret any thing I might have done that made a vulnerable person feel more powerless. If I did disempower someone it wasn't on purpose but the end result was the same....hurting people who are already hurting.

I realize now that patients need to have a vocal advocate who are willing to be outspoken and even downright disliked as long as the patients best interest is being protected.

I have a high respect for your advocacy of Earl, I know how hard it can be when you see both sides of the story, know what's right and what's wrong, what to make a fuss about and what to let slide and have enough knowledge to be worried but not enough to be reassured.

I wish I had someone like you on my side....Earls a lucky man.

Regards

Chirley

[PattiDean]

Hi Beth,

I imagine you and Earl will be leaving soon for the new hospital. You both have so much to deal with at this time. I want you to know Dean and I are thinking of you and have you in our thoughts and prayers.

It was so nice talking to you the other day, you are so caring and supportive to everyone on the forums, I am happy that we are a part of an extended family.

Chirley, your post was so touching and you said everything perfectly. I wish every nurse and patient or advocate could read it.

Hugs to each of you.

God Bless,

Patti

[bebop]

praying for you and Earl that everything is going to be just fine!

[Al's Wife]

Yikes, Beth, I'm away from my computer for a couple of days and look what happens. So sorry to hear Earl is going through this. A heart catheterization was the way they first found Al had a platelet problem back in October
2009. When they did the lab work before the cath was done, they came in and told us his platelets were low. And that's where our journey began. He wasn't actually diagnosed with MDS until May 26, 2010 after a second BMB was done.
Anyway, I'm praying for a good outcome and that they'll find nothing serious with Earl. I think he's dealing with quite enough already. He's just lucky he has you in his corner. My poor husband has to deal with a nonmedical person like me!
God grant you strength and healing for Earl.

[cathybee1]

Beth, you are always there for everybody. Earl and you must both be exhausted. Thinking of you both.

[donna j.]

To All,

I have been following the forums these last couple of weeks and am so sorry for the problems it seems everyone has been having regarding their spouses health. I cannot tell you, caretakers, how impressed I am at your selfless, determined, actions to care for, provide, and do what ever is necessary to make sure your loved ones get the best treatment available.

You are God in your actions.

Donna

[milliken2]

Hello All;
Thanks for the confidence in me - and the compliments as well. Yesterday did not turn out like I had planned. I came home on Wednesday night, got both bags packed - and some extra things I thought I might need. Had to drop more dog food off for Hannah in the early AM - then I went to the hospital - I was there around 7:30 AM - thinking we had everything in order from the night before.
Lo and behold - they tried to change hospitals again - and again - I had to insist on where he was going. By 10 AM - Earl was getting antsy - and they kept telling me that AGH didn't have a room. I found that hard to believe due tp the size of the facility - but okay - we will wait - for a while. His lunch tray came, and we still didn't have an answer. It's now 1:00 PM.
I finally called the hospital patient advocate - and she came up to the room - the heads turned when they saw she entered his room - and we closed the door and had a frank conversation. I told her of the obvious medical errors, the poor communication, and other things that I don't even have the energy to mention. She was taking notes, and then left the room after an hour or so.
More time passes - and it's 3:00 PM. I told Earl I was going to go to the hostess shop and grab something to eat since I hadn't had anything all day.
Here I am in the hostess shop ordering when the patient advocate, the Director of Nursing, and the floor charge nurse surround me, and ask if we can further the previous conversation, of course I said yes. They took me across the hall to the C.E.O.'s conference room, and we talked. They were aghast at some of the things I told them, and promised to correct the problem, and get Earl on his way to Pittsburgh as soon as possible. They gave me a $5 voucher to pay for my lunch - and when the volunteer saw it - and I knew what I had came to over that - she said "I have never seen one of these before - you must have some pull" - and I told her "No - I just rattled some chains." and she left me have the coffee, sandwich, Earls candy bars, etc. for the $5.
So - I get up to the floor - and he says the sandwich looks good - and he ate about 1/3 of it, and his candy bar. Then the eveing meal came, and he ate part of that too.
Finally - at 7:10 PM - the paramedics arrived - and we were on our way to Pittsburgh. Got there about 8:30 PM, and they did get the ball rolling quickly. Saw the cardiologist fellow - and she said she did not know whey they sent him - but that she would discuss it with the actual Doc - and see us this AM. A hema/onc fellow also came in - and we had to go through the entire history. I went prepared with his med list and a copy of his advanced directives. Long story short - his platelets dropped from 38,000 yeterday to 24,000 today, and his Hgb was 9.8 yesterday and dropped to 8.6 today. In essence - they did not want to touch him with his levels, and said what they saw on the reports - he did not have a heart attack, his cardiac enzymes were normal, so they sent us home - after all the Docs got their ducks in a row - we were on our way home at 2:30 PM. A wasted trip, and a lot of apprehension on Earl's part. The only good thing about it was that he had a large room - complete with a couch that folded out into a bed, and I slept better than I had in nights - just knowing I was next to him. He said I snored, and I probably did. LOL
So - we stopped and picked up Hannah - came home, and he went right to bed for a good hour and a half. She was very happy to see us - and has not left us out of her sight since. Thank You All for your positive thoughts and prayers.

((((HUGS))))
Beth

[Chirley]

Hi Beth, sorry you and Earl had to go through that but at least his hearts ok.

If I remember correctly it was the PA who made this diagnosis and recommendation wasn't it?

You know Beth last time I was in hospital they tried to run my IV copper at twice the rate that the doctor ordered and I had to threaten to refuse to have it before they ran it at the correct rate and then they took someone else's blood (with AML) and put my name on it so my doctor thought I had redeveloped MDS or worse. The hospital never acknowledged this mistake or apologized so I put in a complaint to a nurse manager. She called the Director of Nursing who came to see me and he told me that by making a complaint I had upset the nurse who made the mistake and that the nurse was now suffering anxiety! As far as I know I never even met this nurse!

The DON wrote in my chart that I was irrational. I only found this out when my GP received a discharge letter. My GP was furious because he has known me for many years and knows that I don't make a habit of complaining. The Prof also saw the chart entry and asked me about it, I told him what had happened and he wrote down the name and number of the patient advocate and told me to pursue my rights to have this entry withdrawn. He said that it wasn't the first time he had seen patients labelled as disruptive because they made a complaint about service or mistakes. He said it's done to cover themselves legally if there is ever a court case. It undermines the patients
reliability.

Even my haematologist reckons I'm one of the most placid people he's known. Little does he know that I'm like a duck, all serene on the surface and paddling like hell underneath.

Anyway, it's over for you now for the time being. I hope you both get a good rest and lots of loving from Hannah.

Regards

Chirley

[cathybee1]

Beth, I'm so glad you are home safe and sound. And what an ordeal!

[Al's Wife]

Oh, Beth, I'm so glad things turned out well for you and Earl and that he was able to come home. But isn't it a crying shame that with all the other things we are dealing with, we have to put up with such incompetence. I really ought to write a book!
When Al went to the ER after passing out almost two Sundays ago, I had to ask for the patient advocate due to some issues in the ER.
Hope Earl's numbers come back up too. If you are like me, you are worn out. I told my sister on the phone tonight that I couldn't even feel my body - and that's the truth.

[Sally C]

Dear Beth,
As if you don't have enough to deal with but you are coming through like a champ. And I'm so glad that Earl's heart is ok. You don't need that worry!
Try to get some rest this week-end. You certainly have earned it and need it. And there is nothing like a dog's love to make things a little better.
God Bless,
Sally

[PattiDean]

Hello Beth,

Wow, you and Earl sure had a long two days. So happy to hear that it ended better than it began.

You are in our thoughts and prayers.

God Bless,

Patti and Dean

[milliken2]

Chirley;
It was the PA that ordered the stress test - and the one that said he could eat between the 2 sessions, but it was actually the Doc that she practiced under - or one of them (not the one I wanted to see) that said he should be sent out for the cath - and since I was not familiar with him - I guess I should have questioned more. But what's done is done, and he's home. Now, his vasculitis is acting up, and he has lumps popping out all over his arms and legs. He is just so immuno-compromised that anything seems to get to him.
The Dr.'s at Allegheny seemed puzzled as to why even the local hospital sent him down - due to his dropping numbers. Thank God I sent him - as the actual cardiologist said they could perform the heart cath here in New Castle - and I replied - NOT - no way. I am sure they were glad to see us go - since I did not sit back and just put up with poor care.
Thanks to each of you for your concern.

Beth

[Al's Wife]

Beth,

All I can say is: Been there, done that! I am so amazed at the incompetence in the medical profession. It's scary. Some day we'll have to get together and write a book!

Hope you and Earl get some well-deserved rest. You are both in our thoughts and prayers.

I think I am at a more peaceful place. Hope it's not the calm before the storm. Lots of friends and family and celebration of Al's 75th birthday. I only cried twice today so I'm doing better.

Have a good rest of the weekend.