stress test report and other stuff

[irish]

Just a note to let you know that I had my stress test with the radioactive isotope uptake and pictures taken before, during and after the stress test. I flunked the test, sort of!!!

I was able to walk within only about 20 seconds of the established norm for my age and weight. I thought I would die cause I was weak from my myasthenia and family stress. Also, I swear that they have changed the way the stress test is done and made it harder. Yuk, Yuk!

Got a call a few days later telling me that my heart was strong and I had no blockages. I could not believe it. Guess it pays to walk and puff and pant all the time----builds up heart strength? Also, got a letter regarding the echocardiogram and there was a little something but not of great significance at this time. So, I am lucky at that.

The stress in the family is my hubby. He has continued to have infections and requires a lot of care as far as setting up medications. He is on a whole bunch of medications and inhalers and then has the 3 rotating antibiotics that are given for 14 days and then off 7 days and on to the next antibiotic. Also, he has been on prednisone tapers that run 16 days every month since August. He has had IVIG infusions monthly since September for his low IgG levels. We sit next to each other in our recliners. Isn't that romantic???

He was in ER on the 10th and made an ambulance trip 9 hours later to a bigger hospital 2 hours away. Got home the 13th and today I had him to ER again. He coughed so hard yesterday that he broke a rib. He has pseudomonas in his lungs and I swear that this hides and shows itself about once a year. He was put on nebulizer treatments last week and finally his lungs are loosening up. His infection if very bad and his white count is 17,000 again.

His pain is so bad from the ribs and he doesn't look good at all. Color is very bad but 02 sats are not low enough for oxygen. He may end up on long term antibiotic therapy, but he is a poor surgical risk. I would bet that he has an abscess in his lungs that keeps all this going. Outlook is not good for someone with COPD and low IgG levels. It takes time to build up the IgG levels and I think his health has gotten too bad. Also, starting him on nebulizers made me sit and think how to set up his neb protocol so that we had no chance to spread it to me as I have a nebulizer also. We now have 2 entiely separate routines in which nothing is the same or in the same place thus making it less possible to spread infection back and forth. Sheeesh!!!

Just the skinny on the whole shooting match. Oh, my neuropathy in my fngers is bad and my carpal tunnel and achilles tendons are kicking up a lot. My muscles are also aching. In other words I feel like crap and am not getting enough sleep. We went to ER today and no family tonight or on Christmas day. Sort of lying around and just resting. Have to keep hubby drugged up and watch him so that he doesn't fall and break a hip.

Family coming on Saturday for Christmas.

So with all this being said. May you all have a very Merry Christmas and Blessed Holiday Season and may your hearts be filled with peace and joy for at least a few hours. Irish

[eyeamdry]

Irish, I am set to do the same stress test with radioactive stuff on Dec. 27th.  I have done it once before I think.

I am sorry that you and your hubby are stressing and not feeling well.  I know his health puts a burden on you, but it's what we wives (or husbands) do.  Watch out for those we love.

Take it as easy as possible and let some of the younger ones (kids & grandkids) help out.  Suppose Grandma stays in her bed for the afternoon?  How about the couch?  I hope you are doing a bit better after the holidays.  Lucy

[slccom]

Irish, I am so sorry that you two are struggling so much. I don't know if you have considered talking to your insurer about hospice care for your husband. It would lighten your load, financially and with assistance in caring for him, and it doesn't necessarily mean he has only 6 months; he can be recertified after six months.

My husband and I spend a lot of quality time the same way. And it actually is quality time, which some people might find hard to believe!

Hugs to you both, Sharon

[irish]

Lucy, The bad thing about this is that he has had this infection, at least, off and on for about 3 years and the doc says now that he is colonized. It can be a very wicked infection with a high mortality rate---especially in those with low immune systems and COPD.

I am using a lot of infection control techniques around the house, but I am to the point that cancelling Christmas is a very real possibility. I am going to call the doc on Thursday and see what they have to say. What he has going on right now is not going to be taken care of with oral antibiotics and he is in need of hospitalization again, I do believe.

Unfortuately, this is not a good week to end up in the hospital cas the staff is always skeletal and not the best time to be sick. The old saying is "never have surgery on Mondays and never go to ER and be admitted during holidays." I tend to go along with that myself---if at all possible.

I am not anxious to have the grandkids exposed to grandpa at this time. Gets complicated and I am just praying that I stay healthy. Thankfully, my last blood work showed that my white cell levels were in normal range---finally, after over 6 years of IVIG. IRish

[irish]

Sharon, Thanks for the suggestion. I don't think he is quite at that point yet. That day is coming though and will be here sooner than later. Last thing pulmonary said was possible once a day antibiotics with a PIC line. The appt with her in mid January and that is too far away. He needs reassessment now and I will call on Thursday and try for some type of change in plan.

Ain't being sick just a hoot!!! Irish

[Scottietottie]

Hi Irish 

Thinking about you and your hubby this Christmas day. Hoping that it is good to have your family around you. I think the idea of you and your hubby sitting : next to each other in recliners is quite romantic. It says a lot about the love you share and the number of years you have shared it.
I am sorry about the declining health. I can but imagine the stress. wow you are fighters - the pair of you. I hope there is enjoyment in the day.

Scottie  x x x 

[MaryBee7]

I agree, you two are fighters!  And blessed to have one another.  Merry Christmas!

[Tivia]

Wow Irish that is some load you are carrying. I feel so bad for your husband, is there nothing they can do to clear out the infection? I dont mean to pry but how advanced is your illness, I mean I dont know how you can care for your husband with you being sick also.

Maybe I need someone to look after, then I wouldnt focus so much on my own misery and fear.

[Katybarstool]

Irish

My heart goes out to your and your husband. You have come through so much together, but it does sound that your load is getting too much.

Prayers for you both, and good luck with the doctor on Thursday.

God bless.

Kathyx

[irish]

Thanks for the posts of encouragement. Yes, we must be fighters, either that or we are just plain stupid!! Actually we got through the last couple of days better than I would have imagined.

I gave my nurse sister a call this afternoon so I could vent. When things get heavy I call her and bounce stuff off her in order to see if I am missing anything that I should be doing with hubby;s care and to whine and moan. I told her today she is so lucky that she can hang up and not have to live with me!!!

She gives me suggestions and helps me keep grounded when I feel like screaming. Hubby is having pain and thankfully is coughing up some of the junk. Tomorrow I call the pulmonary and see where we go from here.

My husbands IgG levels have been low and we don't know how long this has been. Immunologist says that it is likely that they were low when he had the really bad infections following back surgery back in 2002. I am still of the opinion that he could have been harboring the pseudomonas infection in his lungs since that long 75 day hospitalization.

His lungs have not been the same since that long hospitalization but no one else but me would have been aware of it. Hubby has a lot of things wrong with him. Two ER trips and one hospitalzation since 12/10 have showed some strange stuff on his EKGs along with some blood test that is off a little. They keep thinking he could have had a heart attack, but he has had no symptoms and right now the infection is the big thing.

My health is not the best and I have had a lot of Sjogrens issues lately along with the weakness from the myasthenia gravis. I just have to rest a lot. I don't drink but I sure eat when I am stressed out. I will not be able to fit in my recliner if I keep eating so much!!!

Hope everyone had a good Christmas. Right this minute I am hungry for stuffing, turkey graavy and cranberry sauce. I will have to buy a little turkey breast and cook us some decent food. Take care all and stay warm. Such strange weather we keep having. Hugs to all. IRish

[irish]

Well, now that I moaned and groaned yesterday things seem better. Hubby felt a little better this morning. His pain is still there between a 4 and 6 on the scale and worse when the pain pill starts to wear off. He can stand a whole lot of pain and has lived with pain for 20 years.

He is still getting up and getting dressed in the morning with my help and sits in the recliner much of the day. I got about 3 1/2 hrs to 4 hrs of sleep last night. I also fell asleep about 4 PM and slept til 6 PM last evening so that was great. My recliner is a great place to catch a nap now and again.

I can't reach pulmonary and could get the doc on call, but hubby says "just leave it be". I understand where he is coming from. A person gets sick of the wild goose chase in medicine these days. Our pulmonary is 2 hours away so that makes it even harder. There is not even a pulmonary at the 2 bigger clinics and hospital about 30 minutes from us---that is why they shipped him by ambulance on the 10th. It is a wild goose chase.

He is coughing up the stuff, he is not having the chills, nor having drenching sweats and he is able to eat and take nourishment. He is on antibiotic and has his nebs and pain meds. He had his IVIG last Wed for his low white cells. Soooo, it is sort of up to mother nature to see how this plays out. It is very negligible as to whether they will do any surgical procedures on him as his lungs are really crappy.

We see the family doc on Friday and see what we can do to proceed. Probably have white count done and another sputum culture and more pain meds ordered so he can cough. The thing is, there is so often not much that anyone can do for us. We just have to trust our docs and let common sense and mother nature prevail. My hubby knows that his days are numbered and he knows that oxygen will be coming one of these days. I am always amazed at the human spirit and what it can endure.

May we all have peace in our hearts as our health issues affect us. Often it is our wailing and worrying that really do make us worse. I told my hubby that "joy cometh in the morning"---from a Bible verse that I have remembered for years. If we can just make it to the morning it seems that the days roll on and life "is what it is". It takes a lot of faith to keep us going, but, hey, we don't have anything else to do anyway so we might as well work on our faith and other virtues that will serve us well. Have a good day folks. Irish

[quietdynamics]

Irish happy husband is feeling better, and that you have at least caught some naps (on alert..the kind you take when caring for a sick loved one. The cycle of life, we return to alert just like when we brought our babies home  )

"He is coughing up the stuff," I gave mom morphine to help move it "out" .. just a small dose as instructed by Hospice. Something I would never have known it was used for.

"just leave it be". So hard to sit on our hands, we so want to help. I have been in the" leave me alone place" and I am sure you and many other as well. Just too sick and tired to see a doctor. It is not just 2 hours away...it is an all day process. And sometimes with no result. We are with you Irish and wishing you a restful day.

"Often it is our wailing and worrying that really do make us worse."  That is the Truth. And it is a waste of time... and energy. Nothing productive. 

"My hubby knows that his days are numbered"... I hope you are snuggling. Touch has amazing effects. I am sure you know about the old and new studies on the "lack of a will to thrive". My first college degree is in Behavioral Science. Touch...so simple; so powerful.

"joy cometh in the morning" My step-grandmother made it to 99, fully functioning.teeth and hair. Sometimes I would check her in the morning to see if she was breathing. Her eyes would pop open...and she would say...."Not yet"...It was so funny.

Yes, we all enter and pass from this visit.  We can spread the wisdom of our journey or squander with "wailing and worry" 

So Dear Irish ...what good thing did you do for yourself today? Hugs

[harrigan]

Sending love to you both and hope that you both start to pick up and can enjoy some family time xxx Ailsa

[harlin]

Irish
I will be saying many prayers for you and your hubby.
Blessings, harlin

[Dolly Dimples]

Dear Irish, once again that true grit of yours shines through in your message.
You certainly give your all for that dear man of yours,  Hope he realizes what a catch he got!

        But dont forget yourself in all this.
             .
      Have a great , but restful time,  and may the New Year bring much peace and better times.
                         Take care , all the best Dolly x