John's Home take....Yeah I've lost count!

[Stephanie78]

John is home again! This was a crazy hospital stay. He had a total of 7 plasma exchanges, another RTX infusion, pulsate steriods and began oral cytoxan. He was in ICU for a total of 4 days. After having a heart cath done we found that he has a 80% blockage in his secondary artery and an aneursym in his main artery leading to the heart. He will go back to the cardiologist for a re-check in a couple of weeks.
This trip was especially stressfull due to the fact that some of his family flew into town. Of course they have read up on WG on the internet so they are experts and I (the one living it with my husband knows nothing). It's sad that anyone would want to cause problems and make this about anything OTHER then John getting the help he needs. I don't think people understand what stress this causes to the patient and their spouses and children. Unless you live IN the home and care for that person you have NO CLUE what it is like. I can't just buy a plane ticket and visit and then go home and NOT have to deal with it. I don't think (unless you are dealing with it) how although it is not happening to you physically that it is HAPPENING to you emotionally and mentally. I don't think that people realize that money sometimes is secondary when it comes to being with your spouse. I have talked with all of you. I have talked with the doctors. I know his case is rare. And if something were to happen to him (I hate the thought of that) I never want to regret NOT BEING THERE WHEN HE NEEDED ME. It makes me sad to think everyone doesn't feel that way about their spouses. It makes me feel sad for their spouse....I can't imagine not loving them enough to want to.
Ok so off the rant..
Surgeon came in before we left and looked at Johns toes. His feet have become a very sensitive topic. However we had good news! She said that his color is coming back in 2 of them and she has high hopes that since the plasma exchange that the blood flow may return and he will not lose any of them, worse case scenerio right now is that he loose part of his little toe and just the tips of a couple more. YAY (Best news of the week...other then going home).
He added 8 new medications to his already stocked pharmacy.
One of the things we talked with the dr about last night was...."Did the tapering off of prednisone cause this" and the answer was "Most likely". Oh My Lord...I'm terrified of when they start the tapering again.
His color is back! Last night he sang on the way home (Chicago an awesome 80's band) When we got home he watched Wrestling (something he had not watched in months!) And actually went to the bedroom and went to sleep (normally he was up all night in the recliner) I'm hoping for some better days.
I don't know how many of you believe in God, but there were days that I was angry at him. I couldn't pray due to feeling that he had betrayed us in a way. I'm over that point but thankful for the ones who prayed in our place. You ALL are a walking testimony. I know my husband is!

[delorisdoe]

awsome news. Prednisone tapers are like that though...It goes horrible one time and then maybe not horrible the next time. Id like to say he will learn the difference 100% between the pain and symptoms of wegners and the pain and symptoms of a taper but I would be lying. You do get better but are never quite sure. Toes are good.

[DEE]

That great news , thinking of you all ,DEE x

[Chris G]

Awesome news Staphanie!! It sounds like things are FINALLY under control.

Don't fear the next pred taper. When he's better, and the time comes to start the taper, ctx and rtx will surely allow for smooth sailing. Yes, my glasses are rose colored, and I'll keep wearing them with you in mind.:biggrin1:

[RudiK]

That is good news Stephanie, let's hope John will continue to improve. Please do not loose your faith and please do not give up on God. He does things for a reason, and we may not never understand him.
I hope my wife sticks with me like you stick with and support your husband if I ever get as sick as John is (although my wife stuck with me for 44 healthy years so far, and if you knew me you would know that is a pretty good test of being loyal to someone - LOL).
Our prayers and thoughts are with you, John an your family. Rudi K.

[NicShaf]

Stephanie,
I'm glad to hear that you and John are back home, and he seems to be feeling better...at least in better spirits it seems.

It is interesting after being diagnosed how people start acting. My conclusion, people are CRAZY! I'm sorry that you've had to deal with these people when you were going through such a hard time. One thing is for sure, you find out who your friends are when you're faced with adversity like Wegs.

We'll all keep thinking of you both. Take care:)

[renidrag]

Great news Stephanie and John. YAHOO

[mishb]

Fantastic news Stephanie.
Keep up the great fight John.....steps forward from now on.

[JanW]

Great news, Stephanie, hope things continue to improve!

[Sangye]

Wow, this is great news!!! Keep singing, John. It's good for the lungs. :thumbsup:

And Stephanie you are absolutely right that no one else knows the whole story unless they've been there day in and day out. Good for you for standing strong. :smile1:

[Psyborg]

I think people think they are helping sometimes when they are just causing more problems. It's worse if they are particularly out of the loop. Obviously they have no idea what you are going through, let alone what John's going through. I can say that outside this forum I've not found many people that seem to be able to empathize/sympathize.

I'm so glad that John is making progress now. I hope he'll continue to show improvement now that treatment appears to be working.

[Jack]

That is one hell of a bumpy ride John and the rest of your family are on, I just hope that the smoother bits start to last longer. I'm sorry that the situation can also bring out both the best and worst in the people around us. It's all a bit of an eye opener isn't it? At least here on the Forum, you can vent to people who know exactly how it feels.

I have to add that I'm surprised at how short his hospital stays have been, or is this by choice? When first diagnosed I was not allowed home for 10 weeks even though I was not feeling too bad for much of that time. The doctors just wanted to monitor me day and night until they were sure that I was stable. Even then, I lost my kidneys, so perhaps I was not as well as I felt! ;)

[JanW]

Jack, your post only proves that you are not American!

People are forced out of the hospital pretty quickly here, whether they should be or not!

[Sangye]

Exactly. Very rarely will they let you stay just to keep an eye on things. On different occasions I've had massive lung hemorrhage, been filled with uncountable blood clots, had severely elevated intracranial pressure, had pneumonia while immune-compromised, etc... and I've never been admitted for longer than 8 days! It's made for a very rough transition home, since the minute I'm feeling better they discharged me. There is no time to start walking around the unit in order to regain strength or anything. So I go from being bed-bound for a week to having to function living alone with 3 pets.

[pberggren1]

This is why I am so sad for Americans. It makes me very ticked off. When I was in the hospital last year in August, to start the IV antibiotcs for the lung infection, they wanted me out after I was in there about a week. I asked if I could stay longer to see if I get any better. They said yes. I stayed for another week and I improved a bit. I was in very rought shape. I constantly was coughing and had very low energy and massive headaches. They wanted me out as soon as possible because they did not want me to catch anything else. Once I got home things got worse. The first week home I thought I was going to die. Then by the middle of September things started to turn around.

[drz]

Exactly. Very rarely will they let you stay just to keep an eye on things. On different occasions I've had massive lung hemorrhage, been filled with uncountable blood clots, had severely elevated intracranial pressure, had pneumonia while immune-compromised, etc... and I've never been admitted for longer than 8 days! It's made for a very rough transition home, since the minute I'm feeling better they discharged me. There is no time to start walking around the unit in order to regain strength or anything. So I go from being bed-bound for a week to having to function living alone with 3 pets.

I find it amazing with your health issues that out got out in 8 days. Last year I was in patient for five months in hospitals and skilled nursing home from end of March to end of August. Two months were in hospitals with half of that time in ICU units. Ten days were in rehab hospital across the street after my release from the medical units. My skilled nursing home closer to home was attached to the hospital and i made the 50 yard trip down the hall to the ER and hospitals section frequently during my stay along with transfers back to my main hospital as needed. During this time I had about a week of visits outside with two over nights to a hotel for out patient appointments and one three day visit home. The brief visit home convince me I was not ready or able to be home and try help care for myself. I had pushed hard to go home and the rehab staff thought I should try it but it didn't work out at all so off to a skilled nursing home where i could take longer to convalesce. At nursing home I could also get out for a couple hours for a meal or activity or medical appointments. Despite this nice graduated plan I still found it difficult to handle my return home even with my live in nurse (spouse) and hired home maker help since any effort was so exhausting. I can't imagine how you can handle going from being bed bound to live alone with three pets.

I guess I was also very lucky not to ever feel I was being pushed or forced out of a hospital or care facility unless I felt ready and wanted to leave. And yes, I do live in America.

[Sangye]

It's odd because all those times I've had great insurance that didn't push my doctors to discharge me. There were abundant reasons for keeping me. Hospitals are short on beds though, and they need to move people out.

[jola57]

It is quite evident that hospitalization is different here and in Europe. I do however agree that unless the patient is in a bad way, or has no one to take care of him at home, it is best to go home.
There are many hospital bugs that are dangerous to our health, also, at home we are more apt to move about, to get and make food or just putter around. One of the things I heard from the nurses when I visited poor Moyan was that she did not want to get out of bed. They wanted and needed her to get up and walk. She had a special machine by the bed to help her get up. Sadly, she felt that she just didn't want to get up and walk about.

[Psyborg]

Frankly the hospitals in the US (not sure elsewhere) seem quite inconsistent. Some appear to be significantly better than others. I had very bad experiences in the ER in both major hospitals in Columbus, Oh last year. Since they didn't think I looked all that sick they left me sitting for an EXTENDED period of time before even talking with me.

[Sangye]

Hospitals really vary. I spent a lot of time in Flagstaff (AZ) hospital, which even though it's a regional trauma center is still a small hospital. My care was excellent, particularly in the ER. The doctors didn't generally know what to do with me, but they knew that they didn't know. LOL

At JHU, my ER experiences have been pretty awful. I've never been seen in less than 5-6 hours, even when I was coughing up blood with a known history of lung hemorrhage. When I needed to be admitted, I've never gotten a bed in less than 12 hours. They are enormously overcrowded. When you do get admitted, the doctors are excellent. The nurses aren't so great-- too few, I suspect.

[Hammy8241]

Nearly a week at home Stephanie and I hope that you both are settled into a happy routine - You in the kitchen making Jam Roly Poly, John asking for more custard !:wink1:

Take care both.

[Stephanie78]

Jack-
The reason Johns hospital stays were not shorter is due to the fact that we voiced our opinions. We made it clear that we did not want him going home until....(whatever reason, maybe pain free or cough gone etc...) Here in the US you have to basically be on your last leg to even be admitted into the hospital. Remember my past posts, John was seen at our local ER two different times (Once he couldn't walk and bleeding out of eyes, nose and ears the second his oxgyen level was in the high 80's) And for him to be in ICU for 4 days...well that meant he was REALLY bad!
It's pathetic that we pay such high costs for health care (insurance, copays, and deductibles) to get the care that we do. Now I can't complain about Johns care at UNC because his doctors are very attentive and have really taken good care of John. But in my honest opinion, looking back at his recents hospitals stays, I believe he should have been kept longer the first time and monitored. Maybe then some of the worse effects could have been prevented or atleast tended to before they got so bad!
Towards the end of all hospital stays, John gets very quiet and emotional. He gets scared that once he is gone home that something will happen and he will not be aware of the seriousness of it and it will land him in the hospital in worse shape.

[Stephanie78]

Frankly the hospitals in the US (not sure elsewhere) seem quite inconsistent. Some appear to be significantly better than others. I had very bad experiences in the ER in both major hospitals in Columbus, Oh last year. Since they didn't think I looked all that sick they left me sitting for an EXTENDED period of time before even talking with me.

That's the problem. When a person has Wegners Granulomatosis, you don't neccessarly LOOK sick. (although the past visit John looked horrible due to his hemoglobin being so low). But to look at him laying in ICU you would never imagine that he was as sick as he was. I've noticed that once you start eating or walking around the unit they are pushing the discharge. Sadly enough sometimes you have to act SICKER so they will let you stay LONGER. I think that their are Drs who are very well educated with the disease HOWEVER being educated does not give them knowledge on what it feels like to have it. Therefore when they see that the bleeding has stopped (even though you feel horrible) they assume it's time to go home. In most cases though, it's too early!

[Stephanie78]

Hospitals really vary. I spent a lot of time in Flagstaff (AZ) hospital, which even though it's a regional trauma center is still a small hospital. My care was excellent, particularly in the ER. The doctors didn't generally know what to do with me, but they knew that they didn't know. LOL

At JHU, my ER experiences have been pretty awful. I've never been seen in less than 5-6 hours, even when I was coughing up blood with a known history of lung hemorrhage. When I needed to be admitted, I've never gotten a bed in less than 12 hours. They are enormously overcrowded. When you do get admitted, the doctors are excellent. The nurses aren't so great-- too few, I suspect.

The one thing I can say about UNC hospital....John is seen as soon as he walks in. I guess with it being the hospital that studies this disease in particular, they are quick to get him back. On one occasion we had to wait for a little while, however it was a CRAZY night. Once back in a room they realized he needed help STAT. However when it comes to admitting him, he has to wait several hours. BUT they do every test on him possible, have the drs who will be caring for him on his regular floor come and meet with us and even offer an extra bed for me to lay down on. This last visit there was not 10 minutes that he did not have a dr in the room with him (And that was over a 8 hour period of time).

[Psyborg]

It's good to know that UNC is at least taking good care of you guys. You've been through enough already.