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Post by stargazer on Jan 20, 2009 0:08:07 GMT -5
It was a long day today. Like most people with COPD and others with lung issues, it seems that mornings are always a challenge.
We had to go the hospital for some blood work then to physio.
We managed a quick coffee and muffin and then a Multi Organ transplant meeting. Meeting was from 5pm til a little after 8pm
I had heard it was a good session so was looking forward to it however, not quite what I expected. The meeting started out with a general talk about transplants as the group was not just lungs but liver, kidney, heart etc. It then moved to Spiritual Care which I had already seen as it was at one of our regular support meetings. ICU nurse practitioner went over what goes on when you get to ICU, she had a lot of slides so if you have never been to an ICU and seen the ventilator and various other machines it might have been a bit overwhelming. The last speaker was a liver transplant patient who had his transplant 6 yrs ago from a living donor (his son). By the time we were finished most of the lung patients were about done in and some had an hour or more drive to get home. This meeting was mandatory as well so no excuses!
Like I said earlier mornings are just not the best for my partner and wouldn't you know it he has a PFT appt tomorrow at 9am. Lucky for us we are just a few minutes from the hospital so he can come home and rest before we go back for physio in the afternoon.
There was a lung transplant performed last night so that makes the number 5 for January. I have not heard any news on if it was anyone from our rehab. Whoever it was they are in my prayers.
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Post by Blossom/Jackie W. on Jan 20, 2009 8:42:25 GMT -5
Here's hoping the transplant recovery goes well for the recipient Kathy!
How often does Lionel have to have a PFT done while he's there "waiting"?
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Post by shelley on Jan 20, 2009 8:55:54 GMT -5
Kathy, I can only imagine the morning scenario as I just tell people 'I don't do mornings" ;D It's true though, it takes a while to get the wee windpipes turning and by that time it's 10am and then I'm just either going to the treadmill or if I'm going out, I'm up to take my shower. A PFT a 9am is cruel and unusual punishment but they know there stuff there and perhaps they have their reasons. Yesterdays seminar would have been difficult, I think, on even the strongest of us all. At this point, they're pulling no punches and getting you ready for what's coming. Hopefully, at the same time they're also getting you ready for the positives of 'what's coming' I have a question that perhaps you may not be able to answer...do you sign a confidentiality clause that prohibits disclosure...ie: not saying anything when things go wrong with someone. Just always wondered as we hear mostly of successes and then very little about probs. Don't mean to be negative, just wondering. Anyway, my prayers for the person who got their chance last night, may they live long and breathe easy. Hope in all the shuffle of appts. you're enjoying yourself in this cold weather...it's good that you have people to share with and enjoy time together. Take care and all the best to you and hubby.
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Post by cocojax on Jan 20, 2009 12:09:15 GMT -5
Kathy, I guess they really want to advise you of everything so there are no surprises, The drive in for us is usually 1 1/2 hours depending on traffic and I usually have my PFT at about 10:00 am, have to forgo any puffers before doing that test, they sometimes throw in an ABG, then it is on to the 6 minute walk so I quickly take my ventolin before doing that...then onto Dr. Singers office for her consult and then our 1 1/2 drive home depending on traffic....I don't know when I can book my next appointment as I missed January's...maybe May when all is said and done...My thoughts are with you and your partner....
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Post by shelley on Jan 21, 2009 8:51:40 GMT -5
I think how they do it must be individual based on the doctor or something. As I said earlier, I see Dr. Hutcheon and my PFT is in the afternoons and although I've asked regarding the puffers, I'm just told that if I can go without...fine...if not..fine. I think at this point in the game they pretty well know what it's like without our meds. I haven't done anything in over 10 years without taking my meds first thing in the morning. Just the thought scares the pants off me. It takes me about 40 minutes to get to TGH in traffic or less in off hours and my husband usually takes the day off as I tend not to remember things well when I start to get stressed so I have found that having another set of ears works well for me.
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Post by stargazer on Jan 22, 2009 10:49:16 GMT -5
Not sure how often we will have to go for PFT..this was the first one he has had since we arrived. He does take his meds before he goes like you Shelley he does very little without them.
Jackie you asked about problems or when things don't go well....the only time we seem to hear is from family of the patient or word of mouth. The staff can't really talk about any patient due to confidentiality issues, we have never and i haven't heard of anyone having to sign anything about disclosing information. I will ask around tho and see. As of yesterday they had done 6 for the year, numbers are climbing!
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Post by Blossom/Jackie W. on Jan 23, 2009 8:10:28 GMT -5
Thanks Kathy
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