Tough day for nursejoey and dh

Tweety, BSN, RN · Aug 5, 2005

I'm sorry to hear of your worries. Best wishes for good results to come.

MIA-RN1, RN · Aug 5, 2005

We just need a little pity party today or some cheerleaders to cheer us up.
DH has been at the hospital for 5.5 hours so far today getting 2 units of blood. We are supposed to leave on Sunday to visit relatives for a week during my break from school. Don't know if we'll be going or not.
He started having LUQ pain and nausea, and the pain radiated up and into his left shoulder. So I'm thinking "spleen" and made him an appt with the doc. Doc did a CT and of course the spleen is more enlarged then it has been. Also, HGB is 7.7, hence the transfusion. He gets EPO shots q2weeks and ususally responds well. Last 3 shots, however, he's been 8.0 to 8.6 tops. He just had a shot last Saturday and it's this low today. I'm worrying it's time for Mr. Spleen to come out, which opens dh up to many more issues. Also, doc says kidney labs aren't looking good, either and he's concerned. DH is not exhibiting any signs of dehydration so doc hopes that is due to low hgb and that the labs will bounce back after the transfusion. Supposed to hear from doc later tonight. He ordered labs p transfusion to see where everything stands.
Just wanted to talk to someone who understands. I don't like to share my concerns with dh until they have been validated by doc.
Thanks for listening!
Joey

My husband has been living w/ leukemia for almost 4 years now I totally understand where you are coming from in terms of worry and medical tests and doctors. I don't know what your hubby's dx is, but I DO know how illness cuts into any-and everything else in life.

My husband's spleen got to 23 inches and the pain started first in his shoulder and was followed by increasing left sided pain--he groaned when he moved--and loss of appetite. I was scared out of my mind because he was in pain. I didn't want to tell him how worried I was--I'd already figured out the leukemia part before he got the dx from the doctor. Like you, I didn't want to worry him or bring up my concerns prematurely.

Its hard to be the spouse, the supporter, the advocate...people forget that you need the same help in return. I totally empathize and I hope things get normal for you soon.

jnette, ASN, EMT-I · Aug 5, 2005

((((((((((((((((((((((Nursejoy))))))))))))))))))))))

I'm so very sorry to hear of all this. I can only imagine how concerned. worried, and frustrated you must be.

I wish you and dh quick resolution to this troublesome time. Remeber to take a "time out" for you.. to keep your strength and your sanity. (((HUGS)))

nursejoey05 · Aug 6, 2005

My husband has been living w/ leukemia for almost 4 years now I totally understand where you are coming from in terms of worry and medical tests and doctors. I don't know what your hubby's dx is, but I DO know how illness cuts into any-and everything else in life.
My husband's spleen got to 23 inches and the pain started first in his shoulder and was followed by increasing left sided pain--he groaned when he moved--and loss of appetite. I was scared out of my mind because he was in pain. I didn't want to tell him how worried I was--I'd already figured out the leukemia part before he got the dx from the doctor. Like you, I didn't want to worry him or bring up my concerns prematurely.
Its hard to be the spouse, the supporter, the advocate...people forget that you need the same help in return. I totally empathize and I hope things get normal for you soon.

Thanks Coopergrrl. I figured that not only would I get support from the regulars, but also someone with similar circumstances. My hubby has Myelodysplastic Syndrome. Like you, I knew he had something wrong in the leukemia family. Had to pack him up and take him to Mayo in Minnesota for a diagnosis. ("forgot" to mention to him that we didn't have an appointment, just had to show up and take our chances. But God worked it out for us and my husband didn't even quit speaking to me :rotfl: .)

So what happened to your husband's spleen? How long ago was this, and how is he doing?

MIA-RN1, RN · Aug 6, 2005

Thanks Coopergrrl. I figured that not only would I get support from the regulars, but also someone with similar circumstances. My hubby has Myelodysplastic Syndrome. Like you, I knew he had something wrong in the leukemia family. Had to pack him up and take him to Mayo in Minnesota for a diagnosis. ("forgot" to mention to him that we didn't have an appointment, just had to show up and take our chances. But God worked it out for us and my husband didn't even quit speaking to me :rotfl: .)
So what happened to your husband's spleen? How long ago was this, and how is he doing?

My husband's spleen went down with treatment. He started interferon (viscious stuff!) and then failed that treatment after a few excrutiating weeks, and is now on Gleevec which is now the standard treatment. (It was just approved when he got sick and insurance was requiring a trial of interferon before approving coverage...grrrr)

He got sick Christmas 2001, diagnosed New Year's 2002, started interferon lat January 2002 and got very sick from that mid-February. Started Gleevec around Valentine's day and in remission by May 2002 d/t Gleevec. So far so good; he has been in a stable remission for three years now.

I don't know much about myelodyplastic syndrome but my husband's leukemia is CML--chronic myelogenous leukemia. So they must have lots of similarities. I think there are a few people in his L&L support group w/ diagnoses similar to your husband. The L&L society might have information and support for you too. We have a Gilda's Club here where he goes to meetings.

I am going to look up your husband's illness and learn more. They sound similar.

i hope you are feeling better!! It DOES get better, I promise! :)

chattypattyCRNA2B · Aug 6, 2005

:icon_hug:Just wanted to give my support as well. I hope everything works out ok.:wink2:

nursejoey05 · Aug 6, 2005

After finishing his transfusion at 1930 last night, he was looking a gazillion times better. But today he looks about 20 years older than he is and just seems pitiful. Our trip out of town is a family vacation but centered around him having a guaranteed ticket to play at the Blue Bird Cafe in Nashville, TN for open mic night. I don't know if I feel comfortable going out of town. I took his vitals: P70, BP 102/70, AP 77. BP ususally runs low. P and AP are lower than normal. I just kinda feel that something "ain't quite right". I guess I'll monitor him for the rest of the day and make it a "game time decision" tomorrow morning. :confused:

Thanks again for everyone's support!

JGLPN2BE · Aug 6, 2005

Just wanted to say take care during your trip and I will keep you and your hubby in my prayers.

nursejoey05 · Aug 14, 2005

Hi everybody. Just wanted to check in and let you know that we just got back from Nashville. Thanks to everyone who had me in your thoughts and prayers. DH is supposed to get his usual bloodwork tomorrow morning, so we'll see if he's any worse for the wear. I also plan to get him an appointment with the oncologist and see if we can get some kind of realistic idea of dh's current condition. To spleen or not to spleen, that is the question :rotfl: (I crack my self up!)

Thanks again!

beckyrntobe · Aug 15, 2005

I also wanted to wish you good luck. It must be difficult, what you are going through. I am sure your husband is strong and I hope things go well for you both.

live4today, RN · Aug 15, 2005

Joey, it's good that both of you were able to go ahead with your vacation plans. Sounds like dh is in for some more treatment plans and test. My prayers are with you both. Thanks for the update. :icon_hug: