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Post by toni on Mar 1, 2009 10:04:34 GMT -5
My Transplant Voyage Jackie has asked if I would be willing to share my voyage with you and I have agreed. You have all given me so much support the last little while so it's time for me to give back a little. This week I had an initial consultation with the transplant team at Toronto General Hospital. My husband and I were asked at the end of the interview if we wished to proceed further and we said yes. A big decision...one I have been thinking about for seven years. In the BeginningI was diagnosed with COPD at the age of 48. I was a smoker and I knew what was going on...my father had died of a heart attack which was the result of COPD three years before...yet I ignored the symptoms. I had a family doctor who prescribed me Ventolin pretty much when I wanted it and I abused it to the point of being dangerous. What I didn't know was how severe my COPD was. In Jan 02 I had a very serious asthma attack, which landed me in the hospital for a week. Once I was released I was referred to a new respirologist in town...I'll refer to him as Dr S. After having my first set of PFTs done I went to see him. The minute I walked into his office he said that he was expecting to see a 70 year old woman because my lungs were in such bad shape. My FEV1 was 21%. Dr S. put me on new medications, and he told me that I would not be returning to work from that point on (I was an office Manager for the Provincial Government and I had worked there for 30 years). He also discussed me needing a Lung Transplant. My life just did a complete 360... The Last Seven YearsI was able to function pretty well for the last seven years. I attended a respiratory rehabilitation program in Sept 2002 and have continued in their maintenance program ever since. We have travelled to Las Vegas over 20 times, done eight cruises, and travelled to the Virginia in the US to where my daughter lives. I didn't let this disease hold me down. The only bump in the road was my going on oxygen 24/7 in 2006. Every time I would see Dr. S, he would ask me about Transplant and I would say not yet...I'm coping fine...until this past year. I started to really notice a difference in what I could do and not do. It turned out my FEV1 had dropped to %. At my appointment with him in Dec/08, I said "It's time." Consultation AppointmentMy appointment with the Transplant Team was Feb 24/09. I had been sent a letter telling me this and a package with a lot of information...some of it pretty scary. Wouldn't you just know it; I got sick late January and have been on two rounds of Prednisone. But I was NOT missing this appointment. We arrived at Toronto General and Gord dropped me off at the front door. He made sure I was seated in a wheelchair and he went to park the van. (By the way Parking $ is outrageous! I think I'll have to go back to work ;D) We went to Admitting and got my Hospital card and proceeded to the West Elevators and up to the twelfth floor. (TGH Website has great maps of the hospital). Told them at the Transplant Clinic Reception that we were there, waited for about three minutes before a woman came and took us to an examination room. It was there that she sat us next to a computer and ran a slide show of about ten minutes which gave us a lot of information. After it was completed she came back and introduced a Dr Ruddell, a resident from Ireland who proceeded to interview me and Gord. He then presented my history to Dr Hutcheon, who is the Dr who had sent the initial letter to me. Dr Hutcheon went over a few things more and answered a few questions I had. He also tried to look at the chest x-ray CD which I brought but couldn't get it to open on his computer. He said it didn't matter as they would do their own. Three things did come up worth mentioning: My weight. I need to lose approximately 25 pounds. It will be tough especially since I'm just starting a slow wean off the Prednisone, but I have joined Weight Watchers and have stuck to it completely. AFIB...I had an episode last summer of Atrial Fibrillation. I'm taking meds for it and it hasn't happened since. He said sometimes it will worsen after transplant. Acid Reflux...sometimes I get it...I take Nexium for it. He said Acid Reflux will cause the transplanted lung to reject and asked if I had ever had a bronchoscopy done. I answered no and also told him that I don't get acid reflux that often...maybe once every couple of weeks...he seemed okay with that. Once the interview was over, Dr Hutcheon asked us if we wanted to proceed. I answered yes (Gulp!) and he told us that a woman would contact me next week to set up some tests. Now that we have taken the first step, it will become more challenging the more we move along. Once I hear from the hospital with my test appointments I'll post again...but promise not to write a novel next time. Toni
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Post by mary57 on Mar 1, 2009 12:36:27 GMT -5
Toni, Thank you for sharing, it must be an intense time for you. You made a good step with joining Weight Watchers, I'm sure you'll do fine. Take Care Mary
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Post by wendyco on Mar 1, 2009 19:14:05 GMT -5
Toni thanks for telling us all about it....so many will want to know this information and I sure hope this all goes well for you... as you get some test we can compare results
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Post by Blossom/Jackie W. on Mar 2, 2009 19:59:15 GMT -5
Thank you Toni; you've quite some challenges ahead and though you may not realize how many you will possibly touch along the way; the things that you post WILL help many I assure you!
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Post by stargazer on Mar 2, 2009 21:55:07 GMT -5
Toni, welcome to Toronto General !! I have been living here since Dec 08 when my hubby was listed for a transplant. Please let me know if i can help you out with anything. Once you are listed I am sure I will see you in the Treadmill room!!
Kathy
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Post by toni on Mar 3, 2009 8:51:14 GMT -5
Thank you all...
Toni
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Post by Blossom/Jackie W. on Mar 8, 2009 18:07:36 GMT -5
Toni; just checking...e'thing O.K. in your world?
I can only imagine the "psychological" impact on you and I know you're waiting to hear from them.....
It must be so much to consume.......
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Post by toni on Mar 9, 2009 21:06:55 GMT -5
I'm still waiting to hear about when they want me to come down for some tests. I was told during my appointment, that the lady that does the scheduling was on vacation and she was due back last week. Hopefully I'll hear this soon. In the meantime, still slowly weaning down off prednisone and getting used to the change in my meds that my specialist made. Not sure I want to stay on the 600mg of Uniphyl though...it's making me really shaky and I don't feel there's that much difference in my SOB. Toni
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Post by Blossom/Jackie W. on Mar 11, 2009 7:50:49 GMT -5
Toni; I hope you're feeling/doing better now... Have you heard anything yet re: the tests?
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Post by toni on Mar 11, 2009 13:09:56 GMT -5
Got my call this morning from the Transplant Coordinator.
I'm booked for May 19 - 22...all four days, to go to TGH for a variety of tests. Usually they book for five days but the Monday is a holiday. She did tell me they'll book another day if necessary. I have to be there at 8 or 9 in the morning and it usually goes until about 2pm.
All kinds of information will be sent to me in the mail along with an itinerary which will tell me what tests will be done when.
Some of the tests that will be done...ECHO, PFTs, six Minute Walk, Blood Gas, and I'm sure a lot of others.
In the meantime, I'm to arrange with my family doctor, a Bone Density Test and a TB Skin test that can be done here.
If I have any questions, I'm to call her or her assistant.
Now the hard part...waiting
Toni
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Post by Blossom/Jackie W. on Mar 11, 2009 13:13:55 GMT -5
Toni.....you GOTTA be nervous!!!!!!!
Wooooooooooo. Way to go! Please let us know how it goes!
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Post by bobbioh on Mar 11, 2009 16:00:33 GMT -5
Good Luck ! We will all be there with you. Bobbi
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Post by virginia on Mar 11, 2009 17:07:02 GMT -5
Toni, I'm excited for you, I know the waiting is the pitts, but it will all be worth it..I'll be thinking of you and praying for you through your journey...
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Post by wendyco on Mar 16, 2009 20:29:21 GMT -5
since you have to wait thought I'd at least say "hey" to help the time go by hang in there, the waiting is the worse part of it all
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Post by toni on Mar 17, 2009 12:43:32 GMT -5
The wait is tough but I'm hoping to take my mind off of it by driving down to see my daughter who lives in Virginia for a few days. That is if i can get this darn breathing under control!
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Post by John on Mar 17, 2009 15:47:36 GMT -5
Were with you Tony
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Post by toni on Mar 17, 2009 18:58:34 GMT -5
You guys are so supportive! ;D
Thanks...it means a lot!
Toni
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Post by cocojax on Mar 17, 2009 22:34:09 GMT -5
Toni you will do Great, I have to book for my regular check-up down there in May, it is always on a Friday, Pft, 6 min walk, then go the Transplant Floor to see the Dr...
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Post by wendyco on Mar 18, 2009 13:59:23 GMT -5
hope you made it down to Virginia Toni....that's great therapy, seeing your daughter, enjoy!
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Post by toni on Mar 18, 2009 15:51:32 GMT -5
We're not leaving to go down to Virginia until April 1! ;D Today I had my TB skin test done at my family doctor's and I go back on Friday for them to check it. I also have my appointment on March 30 for a Bone Density Test which will be done at the clinic here. Two down..... Toni
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Post by mary57 on Mar 19, 2009 13:59:19 GMT -5
Toni, you are doing so well with this journey your'e on, enjoy your trip to see your daughter, that's the best stress relief you can get. I'll keep you in my prayers.
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Post by toni on Mar 30, 2009 14:36:35 GMT -5
Had my Bone density test done this morning. That has to be the easiest test going! Saw my family doctor for some prescription repeats and she wants to repeat my TB test??? Not sure why but she said she usually does it twice. I'll go back next week for it. We cancelled our trip to my daughter's as I'm not well enough right now and I can't seem to get my breathing to improve. Still tapering slowly off the prednisone...at 15 mgs for five days right now then I'll drop to 10mgs for five days then 5mgs for five days. I just find it so hard to do anything without getting really SOB. Also my feet are really swelling. I'm taking a water pill, cutting down on my fluids and keeping my feet up. Hopefully that will improve once I'm off prednisone. Toni
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Post by Colleen-Pa on Mar 30, 2009 16:36:04 GMT -5
Toni, sorry your not feeling too well, hopefully you will feel better soon.
I just read your story, I don't know how I had missed it, maybe confused you with stargazer?? The testing your going to go through sounds a lot like what they do in the US. It is exciting/scary at the same time. I felt good getting all the tests done, knew exactly where I stood health wise after. Wishing you lots of luck and if you need to chat about anything, Pm me and I'll try to help as much as I can.
Oh, as far as weight, I don't know which is worse, I had lost too much and was floating around 100 lbs, cut off was 95lbs. and it scared me to think that I could be disqualified due to poor nutrition. I did improve my diet and am now up at 118 and holding steady. It was hard! (I know there are some who would want to be in this situation, but no, you really don't) Hope your doing well with the WW, I know its not easy.
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Post by mary57 on Mar 30, 2009 17:18:13 GMT -5
Toni, sorry to hear that you're not able to visit your daughter. Hope you are feeling better soon, and that you will be able to get out and about a bit. I'll be keeping you in my thoughts and prayers, be well.
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Post by aero63 on Mar 31, 2009 10:48:18 GMT -5
Toni I hope you get to feeling better soon.
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Post by toni on Mar 31, 2009 14:33:28 GMT -5
Some good news! My daughter is flying up on April 23 for the weekend. That has made me feel so much better!
I also got a large package from TGH today with a lot of information in it.
A form to complete for the nutritionist, the form for my doctor to sign off on the TB test, a form to sign if I want to communicate by email, a list of hotels/apartments/etc in Toronto that give special rates for patients.
A detailed information package about lung transplants that was sent to me previously ...now I have two!...
Now lot's of reading to do and a few corrections to make.
They have spelt my name Tony instead of Toni and in one spot have referenced me as "he" so I'll be making sure that's fixed.
I once ended up spending the night in emergency because they couldn't find a bed in the men's area...there were lots available in the women's area but someone thought Toni was a man. It's funny now...not at the time!
Toni
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Post by aero63 on Apr 1, 2009 10:18:59 GMT -5
Toni, Glad you are able to look forward to your daughter's visit. Sounds like a lot of paperwork for you to do. , at the Toni, Tony mixup. Many people call me Toni because my name causes them trouble. Yep, it does cause confusion.
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Post by mary57 on Apr 1, 2009 17:37:44 GMT -5
Toni, I'm so glad that your daughter is coming up to visit with you, that will make you feel so much better. It sounds like it's all coming together now, just remember to get lots of rest.
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Post by toni on Apr 8, 2009 16:30:03 GMT -5
I received my schedule today from TGH. It tells me what tests I 'm to have and when. I initially thought from what I was told that it would all be done during the four day period of May 19-22. If further tests were needed they would let me know. Now I see that the four days have been booked pretty well all day each day and they have also scheduled a test for Monday May 25 and one for Tuesday May 26. We are going to stay in Toronto for the four days as each day starts early and I know that Gord doesn't do rush hour very well! ;D I need to sit down and really read through the material they sent as it explains each test in detail. I'll post more once I do this. Toni
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Post by bobbioh on Apr 8, 2009 16:50:07 GMT -5
How exciting, You will have a bit of time before for it all to sink in. GOOD LUCK! Bobbi
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