Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Hey All, Its hard to believe but we'll be moving to Florida in like 2.5 weeks ! ! ! I will miss those at rehab here at Duke but can't wait to get down there. They have had 3 in the last week there at Mayo so I guess my wait will be next to nothing. Actually I am so nervous, I feel sick.... I mean I knew I wouldn't get called as long as I was in NC and now that I'll be moving down....it could happen VERY VERY soon ! ! ! In my head I have even had myself thinking, do I really need one now ? This coming from someone who has only been off IV's 1 week. We lost someone at rehab last night. I didn't know him that well but I have spoken with him and his wife. They were sooo sweet and whatnot. When I was told, I just felt numb.... I couldn't react....I feel horrible. People probably think Im a horrible person.. I couldn't cry or anything. I was lost for words. Ive cried for so many friends this year.... Anyways, I couldn't sleep.I am thinking of the TX and how close its coming, I mean I never thought Id even get half way to this point. I remember in January when I got listed I thought that the wait would drive me bananas. I thought May and June was ages away.... Then with the passing of a rehab member....my mind is going a zillion miles an hour. Becki Life is not measured by the number of breaths we take, but by the moments that take our breath away. Listed for Lungs 1/19/04 at Mayo Clinic ville,Fla. YOUNGLUNG EMAIL SUPPORT LIST http://health.groups.yahoo.com/group/YOUNGLUNG/ Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Becki, Hugs to you. I amprayging that God may surround you with His love and fill you with His peace. You take care and RELAX! thinking of you with much loveMissGooberGirl@... wrote: Hey All,Its hard to believe but we'll be moving to Florida in like 2.5 weeks ! ! ! I will miss those at rehab here at Duke but can't wait to get down there. They have had 3 in the last week there at Mayo so I guess my wait will be next to nothing. Actually I am so nervous, I feel sick....I mean I knew I wouldn't get called as long as I was in NC and now that I'll be moving down....it could happen VERY VERY soon ! ! ! In my head I have even had myself thinking, do I really need one now ? This coming from someone who has only been off IV's 1 week.We lost someone at rehab last night. I didn't know him that well but I have spoken with him and his wife. They were sooo sweet and whatnot. When I was told, I just felt numb....I couldn't react....I feel horrible. People probably think Im a horrible person.. I couldn't cry or anything. I was lost for words. Ive cried for so many friends this year....Anyways, I couldn't sleep.I am thinking of the TX and how close its coming, I mean I never thought Id even get half way to this point. I remember in January when I got listed I thought that the wait would drive me bananas. I thought May and June was ages away....Then with the passing of a rehab member....my mind is going a zillion miles an hour. BeckiLife is not measured by the number of breaths we take, but by the moments that take our breath away.Listed for Lungs 1/19/04 at Mayo Clinic ville,Fla.YOUNGLUNG EMAIL SUPPORT LISThttp://health.groups.yahoo.com/group/YOUNGLUNG/Pediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/ Tina Hillier Mum to , 13 years old and possesor of an Extra Special Chromosome. Rosie 11 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 7, A budding Artist and Singer, And who is 5 years old and a lovely friend! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.com Yahoo! Messenger - Communicate instantly..."Ping" your friends today! Download Messenger Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 oops i forgot to say that i'm sorry you're sick andhurting so much........i'll wave my magic wand and hope that you'll be able to cope better real soooooooon. jenniferMissGooberGirl@... wrote: Hey Everyone,I haven't been writing much b/c its been so hectic here.So I'll do a nice detailed update and explain why moving is no "FUN" adventure....I have not been feeling so hot lately. The pan in my lungs is horrible. I get to the point I can only sit up or walk around for a few and then I ahve to lay down and take something. Its like someone is sticking a knife in my back and then my lungs just spasm up like someone balled them up in the palm of their hand. I guess from trying to breathe through all the freaking mucus, the muscles in my back and ribcage go into spasms and we are talking knots. It gets so bad my stomach starts to knot up. This makes breathing even harder.I am taking Soma, which is a muscle relaxant, to help and some other meds. The Soma helps a little bit...at least it gets my stomach out of a knot. I try to go without the Narc's as much as possible but lordie it hurts. I am also taking maga doses of Neurotin b/c of the Neuropathy in my legs and feet. That at least makes me somewhat loopie so I don't realize how bad Im hurting and can get out of bed.I just finished up my IVs and Tobi.I dunno if I really feel that much better or not. My port was starting to hurt so I just decided to let them run out and if I get worse, I'll just call and make an appt. I usually can get in that day or the next. They are very very good about that.Now for the adventure continues part....Brad is having MAJOR MAJOR asthma issues and we arn't sue why. About a week ago I rushed him up to the local hospital thinking that they should know what to do b/c they have a pediatric clinic there...they won't see anyone over 21 in the CF clinic. I think that is totally retarded but anyways.My assumption that they would know what to do was totally wrong and I have never seen a group of health care providers so darn stupid. The pulmo doc was ok. He did have a few CF patients that he took care of that were kicked out of the peds clinic once they were of age.But the ER doc, talk about complete idiot. Im surprised if he could take care of some little old lady's hemorrhoids. No, I am not exaggerating. You know the joke that goes :" What do you call a medical student that has the average of a D- ? "" A Doctor . . . "Well guess what, I think we found the Dope...But let me back up some here....We get to the ER and have to park clear across the freaking campus. By the time we got there neither of us could breathe....When we opened the doors of the ER I about fell onto the floor.Every puking, hacking, snotty nosed kid within a 100 mile radius was there. I'm not even counting the bleeding ones. now this is where it gets interesting....we sign in and say he's having an asthma attack.now most would have seen him in triage to make sure he's stable but NOOOOOOOOOOOOOOOOOOOOOOOOOOOO...we wait 3 freaking hours before he even sees a triage nurse. She then says it shouldn't be long....it was another 2 hours before he was called.....5 hours sitting in the waiting room with 50 or so contagious individuals.I was just praying that the IVs would hoepfully prevent me from catching whatever the kids had the were puking all around us.Nothing like a bucket full 5 hours worse of bile to look at as you wait.Then there was the mother who would hold her vomiting newborn over the floor to let the projectile vomit there...Why you say, she said b/c its easier to clean up. Tell that to everyone's shoes. So, we sit there with our hands in our lap and trying everything under the sun not to touch a dang thing.He finally gets called and this is when we meet Mr. Moran.The nurse was fine but tried to start an IV line twice and blew it each time but at least she knew what CF was. The RT was pretty cool too. He used to actually work at a CF center. So we thought it was looking up and then in walking clueless.I can laugh about these things now b/c the comments he made were sooooooooooooooooooooooooooooo stupid but at the time I was ready to go off and I usually let everyone walk all over me.The first words out of his mouth are:" 27, thats kinda old to have CF"Not a good start....He then goes on to ask us where our medical records are. We're told him we gave the nurse his CF synergy testing from Columbia that listed his two bugs, the last clinic notes, and the report from the sinus surgery in early May.He said " No, I mean ALL of your records...".I told him we are setting up with a doc in St. Augustine that sees Cf patients and he'll get the records when we see him. Well, he starts yelling at us that people with chronic illnesses need to keep, get this, a complete set of medical recors with them at all times. Now even though its 3am I look at him and say " Ummmmm, the doctor requests them b/c its like $.30 a page and we have 27 years worth of records." Well, he basically then accuses us of lying and further demonstrates total lack of intelligance. He responds by saying" Thats rediculas, they are your records and so they don't cost anything. Did you bother to even tell your doctors you were leaving or did you just up and leave." I am now totally pissed and said " No, I am waiting for a double lung transplant and they told me its time to move down here."Well, he then looks at me, totally serious and asks why would we move to ville. We should have just stayed in NC. I then told him they said I had to come and he gets huffy with me and asks...this is the best comment yet:" So, when is this transplant of yours scheduled ? "Now my brain is totally shutting down to protect itself against the stupidity that's attacking it and all I can do is look at him and say " You have to wait until a door becomes available." Now Brad is getting really pissed. Keep in mind this is a young ER doctor so he should be aware of organ donation.The dumbness continues but my backs hurting so I'll skip ahead.The next day Brad gets a lovely TB airborne precautions sign on the door. He freaks and tears it down...he knows he doesn't have TB. Well, the nurse who bearly speaks English or understands,I think the doctor downstairs and this nurse share the same gene pool, says Yes...doctor say you do. Brad says no I don't and tells her what he has. She say "Yes, sew-mon-ahs same as TB and Dr. say you have sew-mon-ahs." Of course she can't even come close to pronouncing it.Brad then says, he doesn't have pseudo and the doc couldn't believe that a CF patient wouldn't have pseudo...ughhhhhhhhhhhhh.So, she retapes the sign on his door and everyone comes in his room with a mask on...no gloves but a mask and tells him he can go for walks. Now think about that for a minute. They won't go in the room without a mask but he can walk around the halls without one? Now we know what he grows and TB is not one of them nor Cepacia and there weren't any CFers around to pass anything to either. But the scary thing is...what is someone did have TB. Would they too be allowed to walk the halls? As long of course as the staff wore a mask to go into their room.So Brad asks the doctor why he has a TB sign on his door and the doc looks confused and looks at the door and then looks back at Brad and says " Because they are idiots..."So we ignore the sign and chalk it up to bad genes....The last evening he was there one of the most serious of the events happened....I say it was the worst b/c this was just plan nasty. The nurse's aid was training another assistant when she dropped the thermometer onto the dirty floor. She then picks it up comes over to Brad and tries to stick it into his mouth. Now Brad had seen her do this and pushed it away and made her wash the thing but the scary thing is : "What if he wasn't with it or was some elderly person....stuff like that is how MRSA and whatnot are passed around...." The other thing is....she was teaching someone else . . . So finally he is home and doing better although he can't quite get control of his asthma. We see the CF doc in St. Augie on the 29th. He had a sooner one but missed it during his stay at the funny farm. I could go on and on with other tales of stupidity but I think you get the gist.The support group here for Mayo is awsome. We had this really great picnic, indoors of course, and their is nothing better than a room full of 50 southern cooks on prednisone. You should have seen the food. Not great if you are on a diet but then again almost everyone post-tx there is one a diet.The docs were their the cordinators were there and one of the docs whom was the one to agree to take my case although I haven't seen him since, came over and gave me a hug and a kiss on the cheek. I cannot empathize how wonderful the staff at Mayo is. When I told the social worker about the moran in the ER she was dumb struck. Its a huge group and everyone is so social and nice. There are a lot of stories like mine there where other centers told the individual to go home and that they will never make it to TX or that they were too big a risk to take on. So there were some REAL miracles in that room. Donna Murrey will agree with me on this one, Right Donna...When we left they piled us up with food to take home so that we wouldn't have to make anything since we just moved here. Needless to say I amLean Cuisening it for a little while....I also started rehab and everyone there is really nice too. I can definitely tell I haven't exercised in 2 weeks though. But the best thing is that its not until 1:30pm. I am not a morning person by ANY stretch of the imagination and can't see that changing even after TX. If it does, that'll be the biggest miracle of all.....So I finished IVs today and still hurt like the dickens and brad has another week of IV's although he's on anti's that the culture showed he was resistant too. Luckily, its an asthma thing and not a major CF exacerbation.Anyways...I am just trucking along and hoping that I get my call sometime soon. BeckiLife is not measured by the number of breaths we take, but by the moments that take our breath away.Listed for Lungs 1/19/04 at Mayo Clinic ville,Fla.YOUNGLUNG EMAIL SUPPORT LISThttp://health.groups.yahoo.com/group/YOUNGLUNG/Pediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 Becki, Major Hugs on the idiot doctor front we have met a few of those in our time. There was one great oncodent when a doc said that Rosie looked lik she had a strange growth on her stomach???? It wsa her Mic key button gastrostomy??? I am glad you both survived that trip with no major complications. Hugs Tina Hillier Mum to , 14 years old and possesor of an Extra Special Chromosome. Rosie 12 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 7, A budding Artist and Singer, And who is 5 years old and a lovely friend! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.com ALL-NEW Yahoo! Messenger - sooooo many all-new ways to express yourself Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.