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
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
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
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
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
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 :)
I agree, you two are fighters! And blessed to have one another. Merry Christmas!
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.
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
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
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
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
Sending love to you both and hope that you both start to pick up and can enjoy some family time xxx Ailsa
Irish
I will be saying many prayers for you and your hubby.
Blessings, harlin
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
irish bless your heart, and your husband's heart. You are both doing all you can, and it is romantic setting side by side in your recliners.
Not many people do that anymore so you are both blessed.
I do know that God is watching over both of you. I can tell just reading between the lines that the two of you cherish each moment, as in the little things being wonderful big things.
Hope you are both doing some better, because you both deserve it.
susanep :)
Had an intersting visit with family practice doc yesterday and he was not in a good mood and was not much help. He did order the pain med and did a culture on the sputum that we brought in. I was disappointed in the visit.
I am sick now with a cold and sinus infection that has been picking on me for 2 weeks. Called and got an antibiotic to keep me from going down the tube.
I also called the pulmonary on call in the cities and he was very nice. I did acknowledge that we were having a rough time with this whole thing but he discouraged us from coming up to the ER. He said all the hospitals in the cities are full to capacity and even some ICU are full because of the flu and another virus that is going around that is worse than the flu.
The doc said to stay home unless there is something that goes wrong. So, we are warm, have food to eat, son lives next door and have pain meds for about 6 days. Hubby is still having a lot of pain, but has times when it is less and he can rest. We are to call back on MOnday to pulmonary to see how the situation is up there. It would not be good to put hubby or me in those circumstances. I will also call the oncologists if I have to. I have some mixed feelings about this whole situation and would not be surprised if hospice may end up being needed. Life is interesting and we must not weaken. There are many seasons in the life of man. TAke care all. Irish
P.S. Today was to be our family Christmas. We were not able to be around the rest of them so I sent the presents and all the pizzas that I had bought for tonight. A grandson just called and thanked us for the Legos that we gave him and his sister also thanked us. We are glad that they were able to get together. So often we parents are there with the kids and familys and there are times the kids and their families need to be alone with each other to rebond. After all, they need to get along when we are gone!!!!
PS. I JUST CHECKED THIS POST AND IT SOUNDS LIKE I AM TALKING ABOUT ME. i AM TALKING ABOUT MY HUSBANDS VISIT WITH PRIMARY.
Irish, I'm glad you don't have to endure a trip to the cities for your husband. The viruses around now are awful. In the UK there have been over million cases of the Norovirus, and some hospitals are closed here too. You are well advised to stay at home, if you possibly can.
I think of you and your beloved often. You are so philosophical about your situation, and I admire you greatly.
Sneding healing hugs your way
God bless
Kathyx
Irish, stay in and stay warm if you can. I'm still in my pj's at 6 pm. No sense in putting on clothes now. I am chilly and we now have winter weather in Mich. Finally. Some snow, but not a lot for us. The temp is going down tonight too. Brrr.
I looked on Facebook a little bit ago and found that my BFF fell when out walking her dog and broke her shoulder in 2 or 3 places. She walked the rest of the way home (by herself) and said she kept having to rest it hurt so bad. She is a widow and her 2 grandkids live with her. She called the oldest who was at work and she came home and took her to the ER. She has to see an ortho surgeon early next week. She is bandaged in a sling til then. Makes me remember when I fell on the day before New years Eve in 1986 and broke my leg in 2 places. Was in a cast for 4 1/2 months. Different casts.
Thinking of all this makes me want to stay inside and not tread out in the snow. Be careful Irish and hubby and have a good New Years Eve, day and year. I have PT tomorrow at 2 pm. Lucy
Thanks for the responses. For those of us who are of the older generation doesn't this flu season remind you of back in the 60's when there was so much flu and the hospitals were so full. Years ago we just learned to live with the flu and stayed home more.
I think that our immune systems are getting weaker from all the antibiotic soaps that we use and all the antibiotics we are on and all the chemicals that we inflict on ourselves. The human race will slowly eradicate itself with stupidity. OPn that cheey note---hunker down and stay warm. Irish
Just adding more info about our dilemna.. Hubby is not feeling good and has this terrible cough yet but can't get much coughed out these last 2 days. I called Immunology and told them what is going on. They extended hubby's cipro until Thursday when we can get ahold of his pulmonary.
I heard from our GP who did the culture and sensitivity on Friday and the infection is not going to be cured by oral medications. Sooo, then I called and talked to pulmonary nurse on call and told her what was going on. She said "are you kidding me"???? I said no I am not. This is like a soap opera and here we sit out in the country waving a white flag trying to get someones attention so we can get some help.
Do not get sick on a holiday---ever and don't have a GP who will not offer to help call your specialists. I am beyond mad about how this has played out. I probbly have the same bug as hubby and we could both end up on PIC lines. I do wonder if I have a cold/flu things or some other oportunistic disease that I tend to get on occasion.
Anyway, the nurse will call us Wed and check on us and we are to get the C & S faxed up to the pulmoanry.....Now, you know that is just such a simple task, but it can take a week and many phone calls to get the job done. This has been like dying of thirst with a well with in one block while being blind, deaf and unable to walk. No one seems to help speed up the process.
Well, that is my lament. Heaven help us if Obamacare makes the health care process worse. Too many computers and rules and regs!!! Happy New Year everyone!!IRish
I hope that you both start feeling much better soon!
Hugs to you both,
Sharon
Just an update on hubby. He will have his third IV antibiotic tomorrow. He goes to a hospital about 1/2hour from us. They have an infusion center that has "pods". They each have 4 recliners and tv's, etc. Very modern and clean, up to date. Lots of staff. There are 15 of these pods and then 3 private rooms for infusions.
This is mainly for cancer treatment, but also antibiotics and other IV treatments. I don't know if we could have our IVIG here, but I don't feel like it is very homey and I would not doubt for a minute that the IVIG product and procedure would be much higher priced. This is not a low cost set up, that is for sure. Nice to have it though.
Hubby is doing this to see if he can gain some improvement in his current health status. He is not in very good shape. The pain from the broken rib is also wearing him down. He did sleep better the last couple of nights, but still not what he needs.
I am awaiting my culture report and am concerned about what I have. If I have the pseudomonas also it could get interesting as I am allergic to penicillin. I did get to the store after his treatment and got a few groceries and picked up meds. My DIL has gotten groceries for us otherwise. It is really nice to have them close to help out. We don't require much help yet, but know where we can go for it.
We have been hunkered down except for doctors and ER visits and now the IV antibiotics. We are comfortable and thankful for a warm house and our recliners. I doubt I would enjoy spending the whole winter like this, but I had better shut my mouth can anything can happen----and usually does. Take care folks. Irish
Irish, I sure hope that things get a lot better quickly! In the meantime, bundle up and cuddle up!
Hugs, Sharon
Have been following your posts for a while now; you are so helpful to us all. I wish the best for you and your hubby!!
Well, I am so lucky. My doc sent a letter that showed that my sputum culture was negative. Yea!!!!!!
Long story short, hubby had his Ertapenam discontinued and was started on a loading dose of Tobramycin IV on Saturday. We did not have to go in for an infusion today and tomorrow the pharmacist at the hospital will contact our pulmonologist and get further orders on the tobramycin.
The truth is, when a person has been a smoker and has COPD the bacterial infection pseudomonas has a high mortality rate. This infection is very hard to cure when a person has crappy lungs. Hubby doesn't know all the bad info, and we just take one day at a time. I have not read any info that will promise me that he will show a huge improvement. I think that is why his pulmonary was treating him with a less invasive antibiotic. Time will tell.
All I know is he has one bad cough. My sister is my "samity saver" and she also told me that if I have something that I should not forget to tell her and she will put it on her calender also so she can remind me. She also insists that I start on a daily vitamin so I don't get so run down. She is a nurse, so you just know that she can be bossy. lol
Facing the death of a husband is a scary thing. We started going out in January of 1961 and have been married 48 years. We think so much alike after all these years that it is almost scary. We will make it through this and we are not afraid---sadness is overwhelming at times but that is normal. Anger comes and goes also, and that is normal. We are not rich or worldly people and yet we have been so blessed in so many ways throughout the years. Oour faith and our family is what life is about. Hug your spouse, your kid and your dog today as life is short. Irish
Thanks Irish. Off to hug my hubby now. Take care, Pie
When my daughter was little she would say...
"Mom, lets cuggle! " Cuddle+ Snuggle...lol
She is 19 now and I still take her hand when we cross the street...actually I take everyone's ' hand.
The practice of Momism...
Prayers of strength to you, rest when your husband does as best you can.
Irish, on top of all of this, how is the mucous? Are you able to sleep?
Styx
I am a nightowl and don't get as much sleep as I should as I can't sleep late in the morning. However, I am able (on occasion) to take a good nap in my recliner. These naps run in streaks though.s Sometimes I don't nap either.
Believe it or not, my mucus issues are better than they were since I started the plaquenil at 400 mgm a day. However, I still get infections in my glands and throat. I am on cipro again now as I had infections in my chest, salivary glands and some infections noted in my thoat, I also had swelling in my glands on the right side f my
I am still irrigating several times a day and spitting and hacking more than I did previously. I still have the mucous issues, but they are not nearly as bad as they had been yers ago.
I don't hear much about other people having less mucus hen they use the plaquenil. I noticed the decreasee in the mucus within the first week on the med. Good luck. Irish
Irish ... how are you and your husband doing?
Hi, I think we are still alive. Hubby has 2 more infusions left of the tobramycin. We drive 30 miles each way for this. His lungs have dried up considerbly, but he still has some infection down there. He doesn't cough much now but his cough is still pretty ragged and his broken rib is still giving him fits--it is better though and the bruising on his chest is finally starting to absorb.
Sunday las antibiotic infusion and then leave early Monday morning to drive 2 hours so we can both get IVIG and he has appt with immunologist. Then we drive 30 miles to our son's and stay overnight and visit the grandkids. On Tuesday morning we drive about an hour for his cat scan with dye and appt with oncology. In the afternoon we drive about 2 miles from the oncologists for pulmonary appt for both of us. Drive home 2 hours then.
We can't wait for next Wed as we plan to sleep in and rest. Hopefully. You all know how that goes.
On top of all this we have needed to trade off our 1997 SUV and on Wed afternoon we were looking at cars and there was a used SUV with his name on it. We traded cars that day. Hubby was in lots of pain but refused to take a pain med so he could drive the SUV home. That was unexpected stress for both of us. We couldn't pass up the good deal cause it is hard to find used cars with lower mileage. We don't trade very often either as you can tell.
See next page. Irish
We are sort of in a holding pattern for now until we talk with pulmonary. His pseudomonas is resistant to everything except the tobramycin so his options are running out. I was just checking the calendar and all his appts and series of antibiotics and prednisone in the last 6 months. It has been a full time job just keeping up with his antibiotic changes and the burst and tapers.
I have a system pretty well worked out so it goes pretty good. The thing that drives me crazy is trying to keep all the meds ordered. Hubby has plans to help me clean up the house the throw things out. I think that he is coming to terms with his mortality. It has taken him longer than my feelings toward my mortality. I have wanted to get things in order for years and he has been in denial. Guess he thought we would both live forever.
I have always said that if I could get things in order around here I could die happy. My folks had so much work for my sister and I that I have never forgotten that. I have always swore I wouldn't do that to my kids. Dying isn't the hard part, it is cleaning up from the living that is the challenge and so emotional.
Stay warm all and out of the snow and wind. Could be a nasty weekend in the USA. Irish
"Hubby was in lots of pain but refused to take a pain med so he could drive the SUV home."
Men Gotta' love them...how they love new toys...lol.
Oh my, so much driving, so many days in row. How do the two of you do that. A caffeine IV?
"The cleaning".. makes me think of 'nesting'
I was lucky in that Mom had been getting her home ready for sale and she wasn't a saver anyway. There was an issue in the basement ... so everything was tossed by the workers and she had the garage emptied. I need to contract some minor damage from in the spring from Hurricane Sandy.
Here at this home is a totally other issue... hopefully when we get into gear to have work done (starting this spring/summer? roof, flooring...dampness in the basement from a storm...groan).
Hmmm..Hubby has the walk-in closet 'filled to the max'. It can hide all 3 cats...yet like me he wears the same favorites! That fit...lol.
I have the small closet. I just change the look by playing with long scarves. :)
Godspeed Irish, you have been a woman with a mission.