Home BUT ....

[Al's Wife]

We made it home this afternoon but I am very uncomfortable. Al is extremely short of breath and this is a new symptom for him. In the past (other than when he was on Vidaza) his platelets were his only problem. But now his reds have begun to tank. His hemoglobin was 7.1 when he was admitted to the hospital on Sunday after he passed out at home. His platelets were 4 but they have been low for quite a while.
So they gave him two units of red blood Sunday night (actually early Monday morning 3:00 a.m.) but his hemoglobin is only 25 now - not much of a bounce.
And while they discharged us today and we are home, I am very nervous and anxious.
I told Al he was going to have to get used to having a shadow for a while because I'm not going to let him out of my sight!
I stayed with him at the hospital as there was no reason for me to come home if he wasn't here. But those hospital chairs that are supposed to recline don't exactly make the most comfortable of beds; so, needless to say, I slept very little and we are both exhausted.
I've read a lot of the other posts on the forum and seems like there are a lot of us dealing with stressful issues this week - not that we're not always dealing with them - but this week seems like more than usual.
Thank everyone who has responded to my questions and offered support. It means so much.
Hopefully once I get a little rest I'll have the energy to catch up with everyone.
Thanks for your thoughts and prayers.
God bless,

[Mydad]

Hi Linda

I am glad that Al was able to come home. It is extremely scary when they are uneasy on their feet. I will be praying for you both.

Thank you so much for sharing so much of Al and your experiences.

Will be praying
Kim

[cathybee1]

It's great you're home. You had quite a time of it and getting second opinions are a whirlwind even for someone who's feeling at the top of their game. Sending prayers your way.

[PattiDean]

Hello Linda,

I just want you to know that Dean and I are thinking of you and Al, and we are keeping you in our hearts and prayers.

I hope each new day will become a little brighter!

(((HUGS))) to both you and Al,

God Bless,

Patti and Dean

[milliken2]

Linda;
You will be fine - just take it easy. I know that is harder said than done - but if Earl could have a Hgb of 25, I would rejoice. I think, if I remember correctly - that the highest his Hgb has been in the last year was 14. something, and that is always after 2 units of PRBC's.
Do you have a pulse oximeter? If not - you can get a decent one at Walgreen's for about $50.00. I have one, and I frequently check Earl's sats (oxygen saturation in your body) with it. It also gives you a pulse reading. I have had one for years because I got it when I was doing home health care nursing - but they have come way down in price, and it's just another 'tool' for diagnostics.
Have Al take several deep breaths during the day - hold them in for as long as he can - then slowly exhale at least 10 times each time. In normal breathing, we only use the top 2/3 of our lungs - this way - the oxygen will get to his entire body, and you use the lower lobes. This can help - and I stress help - to decrease the chance of pneumonia because you are using your entire lung capacity. You can also check his fingers for capillary refill. Gently squeeze the tip of the finger until it turns white. If the blood doesn't rush back in and return to the normal pink color before you hit the count of three - then you aren't getting enough oxygen to your body.
Okay - I'm sounding too 'nursely' here. But know that you both are in our thoughts and prayers.

((((HGUS))))
Beth

[Sally C]

Dear Linda,
I am so sorry you and Al are having so much trouble. And your being exhausted doesn't help either. I hope things will start to look up for you both.
Beth, it's great to have our own "in-house nurse". It's wonderful of you to take the time to be so helpful to others when you are dealing with your own situation.
My prayers go up for all of you!
God Bless and (((hugs))),
Sally

[Al's Wife]

Beth,

Thanks so much for sharing your nursing wisdom. It is invaluable.
I was so tired last night when I wrote the post I put hemoglobin and it should have been hematocrit. His Hgb was 7.1 when we got to Emory and 9.2 after the two units of blood.
Hematocrit was 20.3% before transfusion and 26.2% on discharge.
His platelets are still at 4, but other than the blood blisters in mouth (which are much better) and the petechiae he is not bleeding.
I'm going to get one of those pulse oximeters today, as you suggested. In the hospital they kept having to put him on and off as his oxygen level would get down in the low 80's and after being on the oxygen for a while it would go back up to 95 or so. I'm also going to get him to do the deep breathing. I was a secretary and then a court reporter during my working years. I'm wishing now I had been a nurse! lol

Sally, Patti, Cathy, and Kim - Words of support and encouragement are greatly appreciated. I know each of us is going through our own hell.
I honestly feel like I could deal with this better if it was happening to me instead of having to watch my love and my life of 40 years go through it. I am just so scared. Didn't expect things to turn bad this fast.

Thank all of you just for being here. This is the greatest forum with such sweet, caring, and super knowledgeable people. You all rock!

Hugs,

[milliken2]

Linda;
Hope Al is doing better today. If Al's oxygen saturation (SATS) are 92 or above, there is no need for added oxygen. But, if it drops below that - yes - he needs supplemental oxygen. If, in the future, your Dr. feels Al needs oxygen and you get a home respiratory company - make sure you tell the Doc you want an oxygen concentrator - NOT the big green tanks. Because when you get a concentrator - it takes the oxygen out of the room air, and you can use as much as you need - it is not metered like the tanks are. And you can get the portable tanks to fill from the concentrator. The only metered tanks you will need are 2 of the three foot tanks, and that would be in case the electricity was interrupted for a period of time.
And I fully understand what you mean about wishing it were you instead of Al. I always ask God to take this disease away from Earl - and if someone in this house has to have it, then let it be me. We have been married 41 1/2 years, so I completely understand. Earl is laid back and easy going - but you would think by now he would know better when it comes to his health. Today - we had our emergency appointment with what I thought was the Gastroenterologist. But, they somehow forgot to tell me that they made the appointment with the PA - and she was green - just out of school. She had no experience with MDS, let alone APS or Leukocytoclastic Vasculitis. She didn't even look at Earl's med list - which I provided - until I suggested that she do so - then she asked me what Arixtra, Dacogen and Neulasta were used for. Now - all of a sudden - my husband has a heart murmur - per her - and she wants him to have a heart cath and abdominal CAT scan before they even consider the upper and lower GI along with the mid section camera scan. More money out of our pockets again. Sorry for the tyrade - but when I know more than the supposed professional does - it makes me worry.
Take care everyone - and well wishes to all of our loved ones with this disease.

((((HUGS))))
Beth

[Al's Wife]

Beth,

Al has made more than one physician's assistant angry. Most of the time he absolutely REFUSES to see the PA, saying, it cost me the same thing whether I see the doctor or PA, so I want to see the doctor. We have seen a few PA's that he liked and felt comfortable with, but they are the exception rather than the rule.
Another big time scare last night. He got up to go to the bathroom and he said he got up too fast and lost his balance and stumbled and hit his head and arm and he's got a big bruise on both. He didn't tell me about it until this afternoon. You can't see the bruise on his head because it is in his hairline and I thought the bruise on his arm was from all the IVs he had in the hospital. I CAN'T BELIEVE I slept through it. I am a very light sleeper and the least little thing wakes me up. But last night I had taken an anxiety pill that the doctor prescribed for me last week. I only took half a tablet before bedtime. And believe me, I will NEVER take another one. It scares me to think what could have happened to him and I didn't even know it! I have made him promise to wake me up if I'm not already awake when he needs to get up during the night. I'm still shaking just thinking about it. Maybe I'll tie a string from my leg to his leg so he CAN'T possibly get up without my knowing it. lol
I bought a pulse oximeter today (thank you for the suggestion). And we have done the breathing exercises because the pulse ox is about 87 when I first put it on his finger, but after he takes the deep breaths, it goes up.
He also ran 101.5 fever which is higher than it has been being. I gave him some Tylenol and we put cool rags on his wrist and head and his temp was normal last time I took it.
I emailed our local Emory doctor's nurse today and told her that he is short of breath and still very weak and did they want us to come in before our scheduled lab appointment next Wednesday. She checked with the doctor and said, yes, the doctor was concerned about the shortness of breath also and could we be there at 7:00 a.m. Friday morning because all the other appointment times are filled. So of course we will be up bright and early (it's over an hour drive) Friday morning and at the doctor's. But I will feel better seeing the doctor because I can't stand the thought of facing the weekend not knowing what the red count is and especially with the shortness of breath.
You being the nurse and expert in this, I hesitate to say anything, but I think I would want the gasteroenterologist to see him rather than go by what the PA said, especially considering her lack of knowledge of his medicines, etc.
It's hard enough to get through these days when everything is going good, but when you run into these brick walls and incompetence and all this other stuff, that's when you really just want to explode.
Here's hoping for some good news for us and our loved ones.
God bless all,

[bebop]

I am praying for you all! it is tough for sure.

[Chirley]

Hi Beth, I can understand the reluctance to do the upper and lower scopes because they can have some complications associated with them but I don't understand why they don't do the pill cam. I've had this done three or four times and it's safe as houses.

Maybe they don't think he needs it! You know, they want to rule other things out first.

Isn't a cardiac cath more of a problem than the scopes? Have they done a cardiac echo? I would have thought an echo would be a better diagnostic tool for a murmur.

We don't have PAs in Aus and I don't think I would agree to see one in any case.

All the best to both of you.

Regards

Chirley