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Post by Blossom/Jackie W. on Jul 13, 2007 18:35:29 GMT -5
We learn by the research we do as individuals, and by sharing information with each other.
As some of you know Coco (Ellen) has been referred as a possible candidate for Lung Transplant. Her intial paperwork has arrived. It's quite a process; one that can bring quite a physical and emotional challenge; not to mention a lot of soul searching.
She; nor any of us knows, how things will progress in these situations since the final decision as to whether we're accepted into the program and if we go from applicant to candidate, is not in our hands. BUT; she's willing to share that journey from the testing, interviewing; basically all the hoops she will have to jump through for as far as her journey takes.
Ask any questions; cheer her on or just read if you're so inclined.
And Ellen; regardless of how far you go; whether it's phase one or through to the BIG DAY; we'll be right here reading, learning and cheering you on.
This is YOUR journal; we just get the privilige of sharing with you and asking questions. On behalf of all of us;
Thank You; Merci Beaucoup.....Jackie
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Post by the bear on Jul 13, 2007 20:41:08 GMT -5
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Post by cocojax on Jul 13, 2007 21:19:28 GMT -5
Hi Everyone: I received a letter from Dr. Lianne Singer Respiratory and Transplant Assessment Doctor. Back to Toronto General Hospital for another Pulmonary Function Test this time no bronchodilator for 4 hours prior to test. 6 minute walk test. Metacholine test ( not sure if I have had this one before ) no bronchodilator, coffee or tea 6 hours prior to test. ( that is going to hurt)  . Then see Dr. Singer at 2:00 p.m. Thursday August  /2007. With this letter there was a 4 page insert with information for patients and their families who may be considering lung transplantation as an option for treatment of severe lung disease. This is the initial referral with the respirologist from the Lung Transplant Program. If the patient appears to be a possible candidate, arrangements are made for a more formal and intensive assessment at Toronto General, if the patient lives within Southern Ontario, they will have a first appointment with the respirologist ot discuss the transplant process further. This is it, the beginning of my journey. I am to say the list a little overwhelmed, but I am going to see what happens, my family are all behind me, so we will begin the process and go from there... So everyone come along for the ride...Captain Nana is going full speed ahead...  |
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Post by Blossom/Jackie W. on Jul 14, 2007 6:11:36 GMT -5
Good Luck Ellen. A question for you. WHO referred you as a possible candidate and WHY?
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Post by morningstar on Jul 14, 2007 9:23:26 GMT -5
Coco, My thoughts and prayers are with you as you start this road through life. If you need me at anytime please feel free to call me day or night. I will be watching as you grow strong with this NICE bone builder you take. Because I know you enjoy it so much. I am with you Captain Nana. Rose |
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Post by cocojax on Jul 14, 2007 9:36:47 GMT -5
April 9/2007My Respirologist in Oshawa Dr. David Ross, after having a Cat Scan on March 29/2007, referred me to Dr. Thomas Waddell a Thoracic Surgeon at Toronto General Hospital, to be considered for either LVRS or Stents.
June 14/2007 Toronto General HospitalPulmonary Function Test V/Q Scan 6 Minute Walk test. At my appointment with Dr. Waddell he advised that the emphysema was throughout my lungs, so the LVRS was not a viable option. He also advised that possibly the blood clot I had in my groin in 2000 splintered off an went to my lungs. He then advised that I was young enough and in good health other than the lung problems so he referred me to the assessment team.
First Assessment August /2007 If I pass Go, () then I will end up back at Dr. Waddell as he is the transplant surgeon.
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Post by LindaNY on Jul 14, 2007 11:11:29 GMT -5
Let me include my best wishes as you begin this journey. We will look forward to hearing all about this journey.
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Post by cheryl on Jul 14, 2007 21:41:24 GMT -5
Ellen, Good luck in this and please keep us updated. We're all behind you in this and will be with you every step of the way.  |
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Post by John on Jul 14, 2007 21:52:23 GMT -5
Ellen : We are with You IN our hearts & Prayer  |
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Post by the bear on Jul 15, 2007 12:58:23 GMT -5
Hi Ellen; I will also be with you in your journey and I most certainly will keep you informed here of any thing of value I learn regarding alternate therapies, like stem cell injections. I hope to have a meeting soon with both practicioners in Toronto within next couple of weeks. Hugs, as ever, bear.  |
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Post by cocojax on Jul 16, 2007 13:45:39 GMT -5
Hi Everyone. Had a call from Nina Dr. Waddell's secretary (she is so nice) she is going to try and book the appointment for my heart test, the same day I have the other tests at Toronto General Hospital..Hopefully that will work out. I also called Dr. Ross's secretary Judy (another really nice lady) to ask her advice about getting a Doctor in Oshawa. She will ask Dr. Ross's opinion, because most Doctors these days are not willing to accept patients that are complicated.  I told her that is why I called their office, hopefully Dr. Ross may know some Doctor out there might find it interesting and a challenge to go through this with me. Crossing my fingers.  |
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Post by cheryl on Jul 16, 2007 17:34:30 GMT -5
Keeping my fingers crossed for you too. It's important to have a doctor that you feel is actually interested in your well-being.  |
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Post by cocojax on Aug 8, 2007 10:40:05 GMT -5
Nina from Dr. Waddell's office just called this morning to advise she finally got the Echo Cardiogram booked for 10:00 a.m. the same day as the other tests August /2007. Should be an interesting day.... |
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Post by bobbioh on Aug 8, 2007 11:06:26 GMT -5
Oh Co Co Im sure you have butterflies in your tummy I do just thinking about you doing it. You are a brave women. Im sure all will go good for you after all your Captian Nana Only good should come to you. bobbioh |
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Post by cheryl on Aug 8, 2007 19:22:39 GMT -5
You'll certainly have a full day. We'll be thinking of you and sending good vibes. |
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Post by cocojax on Aug 10, 2007 9:29:58 GMT -5
Hi Everyone I have been thinking for some time that if after the surgery, (hopefully I am excepted) when you are kept asleep, I have asked my family to read things to me. One is a letter that my cousin wrote to my Mom a couple of weeks before my Mom died of breast cancer. When I used to read the letter of memories from my cousin to my Mom, my Mom would then drift off into her peaceful sleep of pain-free memories. I finally got a copy of that letter from my sister and have posted it on photobucket. So if you would like to read a lovely memory letter here is the link...click on each letter to make them larger. s195.photobucket.com/albums/z113/cocojax1/Dianas%20Letter%20to%20My%20Mom/ As I get my memory letters from my daughters and my friends, the ones that are printable I will post. I am going to write a letter of memories for each of my grandsons and will post on here. I think if these letters from my Memory Album are read to me by my loved ones, again the " POWER OF POSITIVE THINKING" will speed my recovery. |
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Post by virginia on Aug 10, 2007 15:50:53 GMT -5
I think your right Ellen...What a lovely place. It brought back memories of a spring we had when i was small..It was down a wooded hill, but we had made a trail by going down it so much.. The spring had the coolest water, it didn't matter if the weather was hot the water was cool and i haven't dranked any that taste that good since..
You're going to be fine. My brother had a tx. and he went through it really well. I was talking to him on the phone, i think it was the second day.And he always said he would have it done again.You will be in my prayers...
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Post by Blossom/Jackie W. on Aug 12, 2007 19:33:04 GMT -5
Ellen; What absolute lovely memories and sentiments. Heck lady; you might set a new trend with the concept.
I think I would like that too......to be read to with such loving thoughts/memories. Positive thinking like Virginia said; even Larry talked about that.....
I hope Ellen; with all my heart, that you get a shot a a TX; it would be the best reason of all to have those and other memory letters read to you. Regarless of what transpires your light is shining bright and far from being dimmed Captain Nana. Love You hon and we're gonna be there for, and with you, on the 16th for what we ALL hope will be YOUR journey like Virginia's brother.
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Post by cocojax on Aug 16, 2007 15:50:58 GMT -5
Well today I had what Harry and I call really good news, all that exercise has paid off, 6 minute walk with only one break, last time I had two breaks (keep in mind no ventolin this time) the difference was only 4 meters. Heart rate was high 186 but O2 level only dropped to 89. Echo Cardiogram showed some pressure, but that could just be from the COPD. Dr. Singer says I am doing really well, and that at this time she wants to wait before proceeding with the transplant assessement. She said that the average life expectancy of a transplant person is still only 5 years, so she says my condition is bad Fev before ventolin 33 and no significant difference after 4 puffs of ventolin. But she feels at this time, we should monitor me and bide our time. So I go back Nov 30th for another PFT and 6 min walk....How great is that....by the way the room was so crowded, could not move....I felt all of you there cheering me on. Now I am acting like a big baby as I have tears in my eyes, so it is hard to type. I told her that I am a less invasive type of person so the longer we can hold out, I am opting for stem cell. She said yes maybe and also they are improving transplants all the time.. What a relief......Thanks so much everyone.... |
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Post by morningstar on Aug 16, 2007 16:06:12 GMT -5
Amen,
What wonderful news Coco. That is so great. I am doing the happy dance here for you. Keep it up exercise does work. In spite of my CHF my breathing was good today and the o2 level was 98.
The longer you can wait the stronger you will be and the more they will know. I am so happy and please for you my friend.
Love ya,
Rosie
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Post by Blossom/Jackie W. on Aug 16, 2007 16:47:32 GMT -5
Oh Ellen; Ellen.... Ellen.........hon; I am SO pleased for you. ; obviously you're not sick enough yet (TIC; tongue in cheek). And YES exercise DOES help!!!! Look at you! You and Harry SHOULD be pleased and I'm right there smiling for you both and rubbing your back. And Yeahp; I can see Rose doing the Happy Dance; after all she has the 02 today to do it!!! Seriously Ellen.....I know what your Dr said about the 5 year issue...keep in mind the lady from N.S. here who's on her 2nd tx after 9 years. Nothing is written in stone and YES Stem Cells are always a possibility the future; we just don't hear about all the stuff. I am just sooooooooooo happy for you!!!! (and your family too ). Sllep well tonight dear..... |
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Post by bobbioh on Aug 16, 2007 18:45:25 GMT -5
Co Co What wonderful news,Its great you have the option. But girl if its not time thats GREAT. Im so very happy for you! Keep doing whatever it is your doing to stay so well. Take Care bobbioh
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Post by John on Aug 16, 2007 21:24:46 GMT -5
Excellent Ellen ! Sleep well this night & we will see you @ the fence in the am . |
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Post by cheryl on Aug 16, 2007 22:10:46 GMT -5
Ellen, that is good news. Like Jackie said, the 5 years isn't written in stone. Why is that anyway - does the body start to reject the new lungs or what?  |
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Post by cocojax on Aug 17, 2007 8:00:03 GMT -5
I'm not sure Dr Singer just said the average life expectancy is 5 years. She said some are certainly more and some are less. So as long as I can, I will keep exercising, keep eating right, so I keep the weight on. Take the bonebuilder, Calcium, Vit D and a Multi V. She was quite impressed that I have not had a cold since last December..Touch Wood..I am just happy with the results...
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Post by LindaNY on Aug 17, 2007 8:39:02 GMT -5
That is wonderful news Ellen. Just keep on exercising and hope for the best.
Gee, your FEV is much better than mine. Mine is 23 before albuterol and 29 after.
My doctor also said Transplant was really not all that good when I asked him about it. He won't recommend it at this time for any of his patients. He said the quality of life after is not very good at all.
He is also saying that about the other less invasive procedures.
He is hopeful about stem cell treatment,but not for many years in this country.
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Post by virginia on Aug 17, 2007 9:32:46 GMT -5
Ellen, I'm so happy for you...Like they all say its not written in stone ..The doctors have been enjoying telling me i'm about to go anytime for 15 yrs. seems your taking really good care of your self thats a plus...I take the supplements also..You take care..(((HUGS))))
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Post by Joyce7 on Aug 17, 2007 16:27:53 GMT -5
I'm so glad for you Ellen. Just keep doing what you are doing, and show them all what can be done. Good for you.  |
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Post by Blossom/Jackie W. on Sept 24, 2007 10:53:34 GMT -5
Note: This topic/thread has temporarily been moved. It will be picked up again if/when Ellen starts her jorney again.
Jackie
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Post by Joyce7 on Sept 26, 2007 5:37:14 GMT -5
You are in my thoughts and on my mind. Update us as often as you can and keep up that exercise. You inspire me..Joyce  |
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/2007.
