Where Oh Where Did My Energy Go?!?

Ok, so another quick update.  After receiving mega-doses of solu-mederol for 3 days plus 5 times the prednisone I normally take orally after that, the steroids have temporarily knocked out my pancreas’ ability to produce enough insulin naturally. I’m having to take fast-acting insulin before each meal for now but hope and pray that once some of the meds in my system level off I will no longer require it.   I’m not used to having to test my blood sugars so often since I am not normally diabetic and I don’t mind saying it’s a pain in the arse.  Just a tad grumpy tonight I guess. 

 

Also I started on Prograf, my new anti-rejection med today, which may also be contributing to my irritability.  I know that my body will eventually adjust and the side effects will diminish or go away altogether but till then, I am dealing with some real wild mood swings,  abdominal cramping, irritability, a very pronounced tremor in my hands and legs and just general weakness and malaise.  Oh and my prednisone moon face and neck are ba-a-ack! Yay.  Oh well, with my immunity so severely compromised, I can’t really go out much right now anyway.   And so ends my rant for the day. Whew, that was cathartic. LOL

I’m hanging on to the knowledge that each day will get a little better till I’m feeling back to normal.

Take care and thanks for taking the time to read my update.  Your interest is really appreciated. J

NINE MONTH CHECKUP COMPLETED

 

I finished my nine month checkup this past week.  I would like to say all is well but unfortunately there was a complication.  I heard the one word no transplant recipient ever likes to hear.  REJECTION!   It’s a scary word with lots of negative implications,  but still, not something to panic over. 

 

I have to admit that I cried for a bit when they first told me but not for long, just a therapeutic  little cry.  I take comfort in the knowledge  that the lung transplant doctors are right on top of it and know how to treat it. 

Really when you think about it, the human body never ceases to amaze me.  My body is doing EXACTLY what it is supposed to be doing and that is finding anything foreign, in this case these strange and unknown lungs I now have, thank you donor and donor family,  and trying to protect my body from what it sees as an invader. 

 

The point of all the anti-rejection drugs I take is to try to fool my immune system into believing they ‘should’ be there, and that they are a normal part of my body.  Apparently every once in a while my body catches on to the trickery and says “HEY, ‘sup.  You guys aren’t supposed to be there and you’re going to have to go.” Then the drugs I take have to work even harder to fool the immune system.  Delicate balance but lucky for me,  not impossible.

 

I was told I have a stage 2 rejection and the treatment for this will be 3 boluses of solu-mederol which is the IV form of prednisone, over the next 3 days.  To keep the amount of the doses I will be treated with in context, normally I was taking 12.5 mg. of prednisone a day but for the next 3 days I will receive 1000 mg daily.  After the 3 days I will go back on the oral form of prednisone at 50 mg. reducing it weekly till I am back down to 12.5 which is my maintenance dose. I will be severely immunosuppressed for the next little while because of these high doses of this steroid.  Also the prednisone tends to make me feel kind of emotional and yucky.

 

In light of the fact that this is my second bout of rejection, they are going to switch me over from Cyclosporine, which is what I have been taking up to now,  to a different drug called Prograf as my main anti-rejection drug.  There are still several other anti-rejection drugs that I am on and as far as I know, they will stay the same.

I have every confidence in the lung transplant team at Toronto General to treat this latest bout of rejection but I will also have to do my part as well.  I will have to adjust to the new drug regime I will be on, I will have to have another bronchoscopy sooner then I normally would have, probably in about 6 weeks, and I will have to be vigilant about not being exposed to any illness or viruses as much as possible while my immunity is so severely compromised.

Having explained all this, the fact of the matter is that I feel great.  I am keeping up with my exercise regime, and in general enjoying life.  Glitches like this will happen from time to time but I’m not going to let it bring me down.  Life goes on and I’m just rejoicing in living my life every day to the best of my ability. 

 

 

 

 

Till next update, take care and thanks for taking the time to read my updates. J

TIME FLIES

Wow! Time flies and it’s been a long time since I’ve updated my blog.  I decided the service I used before was just too much money so I decided to change blogger providers (hmm … is that even an actual term?) LOL.  It took me a long time to decide on one and then copy everything from the previous blog site to this one.  So I’m trying to think of any info or events to add that will bring everyone up to speed.

 

A lot has happened since I last wrote.  I can hardly believe how fast the time has gone but I am already due for my nine month checkup at Toronto General next Monday and Tuesday.  I had my six month checkup at the end of October/13 and sailed through it with flying colours.  No signs of rejection or fungal infections in my lungs. That’s terrific news for me.  The blood work showed that I had a mild CMV infection.  "Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don't know they have CMV because it rarely causes symptoms. However, for people who have a weakened immune system, CMV is cause for concern."  I was put on the anti-viral medication Valganciclovir (Valcyte) for about 6 weeks at a therapeutic dose and then a couple weeks at a maintenance dose.  It seems to have been effective because my last few blood tests have shown no sign of any CMV infection.  

To my great frustration, one of the side effects my body has succumbed to is increased appetite and weight gain probably caused by the prednisone I have to take daily.  Hopefully they will be able to lower the dose eventually and my appetite and weight will decrease with the dosage of the pill.  The other side effect that I have is that I am getting downright furry. 

I am not sure if it is the cyclosporine or the prednisone that causes the excessive hair growth.  Perhaps both.  Anyway, it is definitely a side effect I have.  Still, when all is said and done and I look at the dramatic side effects many of these drugs are capable of causing, I’m amazed and thankful at how well my body accepts and copes with these drugs with only mild and/or very limited reaction to them.

I learned an interesting fact the last time I went to see my respirologist.  We were discussing my latest bronchoscopy. This is a procedure where they take a long thin flexible tube that has a light and camera attached to it and insert it down into each lung.   They look for any signs of infection or bleeding but my doctor said that one of the things that they cannot ‘see’ is rejection.  I just assumed they could see signs of rejection and that is part of what they look for during the bronchoscopy.  He told me that’s the reason biopsies are taken from various places in the lungs.  The tissue is then sent to a lab to be tested for rejection.  Only through these lab tests are they able to tell if the body is rejecting the transplanted lungs. 

On a different subject, we had a great Christmas and New Year this year.  It was so wonderful to be able to go shopping and not be so sick that I became exhausted or had to be pushed around in a wheelchair like I had to be last year.  No oxygen tanks to drag around.  I could walk and breathe and enjoy the season and the shopping and all the fun and excitement that goes with it. Last year this time I wasn’t even sure I would be around to celebrate another Christmas.  I baked cookies, decorated the tree and hosted Christmas Eve at our place. 

Simple things perhaps but things that I haven’t been able to do for the last couple years.   It was wonderful and with each activity I said a little prayer of gratitude for being able to do these things now and for the generosity of my donor who gave me these beautiful lungs. Speaking of which, I just saw a very touching story on the news where a young lady donated a piece of her liver to her neighbour and in doing so, saved her life.  What a truly heroic act.  I tip my hat to that brave and compassionate young lady.

Even though the New Year got off to a great start, there was some sadness too.  I heard about several transplant recipients who have died in the last couple weeks and that’s always tragic news.  I’ll be visiting the treadmill room when I go for my checkup next week but that’s often a mixed bag of news.  We hear the good news of the latest people who have received their precious gift of life and we rejoice but there is usually a downside too as we hear about those who tragically didn’t get their transplant in time and also those who got the transplant but due to various complications or rejection, they passed away.  It’s a delicate balance of emotions, learning to celebrate and rejoice the good news and successes and alternatively, mourning the losses.

 

The other sad news I got was that my dear friend Vicki passed away a few weeks ago from cancer.  I have known her since we were both 11 years old.  She and I were best friends during those all-important teen years and we were practically joined at the hip during that time.  Her family felt like my family because I knew them as well as my own and vice-versa.  Many of the firsts in our lives were shared with each other.  She was in my wedding and we both attended each others 40^th anniversary parties a few years ago.  We always managed to keep in touch over the years and I will miss her.  Once again it hits home for me how truly blessed I am that I also had a life-threatening condition but was given a second chance through my lung transplant while she was not so fortunate.  She is gone but her memory will live on. 

 

Unfortunately I didn’t attend my friends’ memorial service because I have been avoiding large gatherings for the time being.  There are several nasty flu bugs going around right now.

Due to my anti-rejection drugs, my immune system is seriously compromised  so I am being extra cautious until the worst of it is over.  Needless to say I have had my flu shot but because my immune system is so suppressed there is some discussion as to how many antibodies my body is actually able to produce therefore anyone entering my home must have had their flu shot too.  I ask anyone who is ill to stay away till they have recovered and I wear a mask when entering doctors’ offices or go to the lab for blood work.  I don’t want to be paranoid about it but I also think it’s wise to take reasonable precautions and avoid large gatherings where chances are greater that someone may be harbouring the flu without knowing it.

Well I guess that’s about it for now.  I’ll add another entry after I have had my nine month check-up next week.  Till then, stay well and hope you have a great week.  Thanks for reading!
 

 

REMEMBERING BACK TO MY SURGERY

Please Note:  I am reposting my old blog on this site including old posts that were previously published on another site.  After I finish putting up all the old posts I will bring the new blog up-to-date with some new thoughts and posts.  Thanks for your patience. :)  Also, I am not adding all the previous people made from the old blog because I can't figure out how to add them however I appreciated each and every comment and have saved them all so I can go back and read them every now and then.  Thanks to everyone who signed the old blog.  Please take the time to add any comments you like to the new posts. Thanks :)

REMEMBERING BACK

Posted on August 19, 2013 by Gale

 

 

PART 1

 A  TRIBUTE TO MY DONOR

 

April 19, 2013 was a day of good news for me when I got ‘THE CALL’ from the hospital.  They had lungs for me!    I was also intensely mindful of the fact that for this family it was a day of sadness and mourning for the loved one they just lost. To make this easier to write, I am going to refer to my donor as him because even though I will never know for sure, I just always have the feeling that the donor was male. Yet, even in their grief they were compassionate and generous enough to honour their loved ones’ wishes to donate his organs.  My donor and his family are truly my heroes.  I do not say that lightly either; I mean it sincerely.   Even though the spark of life died in him that day, our lives forever meshed when his lungs were placed in my chest.  I pray his family takes comfort knowing that this gift saved my life and the lives of the other people who received organs from him that day.

In honour of the gift my donor made, I am asking any people who may read my blog, if you have not yet signed up to be an organ donor, please, please consider it.  It only takes a few minutes and so many lives can be saved or helped because of you.  It doesn’t matter how young or old you are, it doesn’t even matter how healthy you are.  There is always something that can be used thanks to your generosity.  

Remember to let your loved ones know of your decision to be a donor  and encourage them to become donors too.  I’m living proof that it works.   Thanks to my donor I am enjoying my grandchildren and my family and even planning for my future, a future I would not have had if not for my gift of life.  
Thank you in advance for your generosity and compassion in choosing to become a donor.

Go to   https://beadonor.ca/

 

PART 2

‘THE CALL’

 

Where do I start?  Well I may get sidetracked but for now I’ll start with the day that I got the call for which I had been  hoping and waiting.  It had been 3 years since I was first diagnosed,  and more than a year and a half since I had my first transplant interview and 5 months after being officially listed.  I doubt I will ever forget getting this oh so important and life changing call! 

April 19^TH   2013    

I attended TGH for my clinic appointment and my respirologist was quite concerned with the results of my tests.  I had performed poorly on the pulmonary function test and also on my 6 minute walk test.  Both these indicated I had deteriorated significantly since my previous visit 6 weeks earlier,  so he changed my status to “rapidly declining” and asked if I felt ready to be admitted to the hospital. 
I did not want to be admitted yet (I think it still had not sunk in how seriously my condition had gone down), but I was reassured by the fact that if I needed to be, they would arrange for me to be admitted. 

We were on our way home around 3:30 p.m. when Eric’s cell phone rang. 

I got an instant adrenalin rush when the person said she was calling from Toronto General and that they had lungs for me.  She wanted to know how long it would take us to get to the hospital.  My heart was pounding and my thoughts were racing ahead of me with a hundred questions but I tried to calm myself and focus as I explained that we had just left the hospital and we were on our way home.  We were near the Mississauga cut-off but being that it was rush hour, it would probably take us about 1 - 2 hours to get turned around and get back there. 

I wish I could say that the next thought that crossed my mind was for the donor and his family but in all honesty I was still too gobsmacked to think that clearly.

I remember thinking and praying that this didn’t turn out to be a false alarm, although I knew only too well from listening to other people’s experiences that it easily could be if the lungs turned out not to be in good condition.  I held my breath and used the back-seat-driver-brake

the whole time Eric cut across 3 lanes of traffic and took the next cut-off so we could head back to Toronto. 

 

PART 3

 TIMELINE AFTER ARRIVING AT TORONTO GENERAL

 PRE-SURGICAL

When we arrived back at the hospital Eric dropped us at the Elizabeth Street entrance and went to park the car.  My daughter Laurie and I went in and we walked down and got a coffee and muffin.  I know, I know, I shouldn’t have eaten but it had been a long time since I had anything to eat and I knew it would be even longer till I would get something to eat again, especially if the surgery was a go.  We finished our snack and then proceeded to admitting.  I was given a room on the 7^th floor to wait (and wait and wait) until we knew if the lungs were good enough to be transplanted.  Times are approximate but I’ll try to make a sequential list of events as they happened.

v5:30 p.m.      Admitted to my room on 7^th floorto wait for word on the viability of the lungs.

v6-7 p.m.        My youngest daughter Allison and my 12 year old granddaughter Emma arrived.

v7:00 p.m.      Two doctors from the transplant team arrived to meet me and informed me that the O.R. was tentatively scheduled for midnight.  The required tests and blood work were ordered.

v9 p.m.            Dr. B. returned to take my history and informed me that the surgery time had been changed to 3 a.m.

v10 p.m.          Then Dr. D. came in (yes it felt like they were taking turns J, and got me started on my first dose of Cyclosporine which is an anti-rejection med so that my body didn’t start rejecting the new lungs during the surgery.  Dr. D. told us he still hadn’t heard anymore with regard to the time of my surgery.

v11 p.m.          I finally fell asleep and Eric and the kids went and found a place to try to get some rest as well.  We knew if this surgery went ahead it was going to be a very long day and we were right!

April 20^th      7 a.m. – Dr. D. came in to announce the surgery was a go.   I honestly didn’t know whether to laugh or cry.  I was so happy and excited, but I was also so terrified.  I mean, this was it! They were about to take the lungs I was born with out of my body, and put someone else’s lungs in it. 

v8:45 a.m.      They came for me and took me to the O.R.  My family walked with me to the doors of the O.R. and we all hugged and kissed and said goodbye till later.  I remember that my 12 yr. old  granddaughter Emma cried a little but I re-assured her that I was going to come through this surgery just fine and she seemed to settle down a bit then.

v9 a.m.            I was fascinated as I looked around the O.R. 

There were so many high-tech machines and so many people and I knew my new lungs were nearby, breathing on the EX VIVO machine and waiting for me. 

http://www.youtube.com/watch?v=gXqMsraSb84

v9:05 a.m.      Dr. Yasufuku, the surgeon, came over and introduced himself to me and talked with me for a few minutes.  He was so calm and reassuring that his demeanor had a calming effect on me as well. 

http://www.uhnresearch.ca/researchers/profile.php?lookup=14277

9:10 a.m.      The anesthetist came over next and introduced himself and his colleague and then explained what they were about to do and that’s it, that’s all I remember.  The next conscious thought I had was when I woke up in ICU.

v10:00 a.m.    Prepping was completed and surgery began.

v2:00 p.m.      Right lung was in and breathing & then they began the left   side

v  6:30 p.m.      The surgery was finished and the surgeon went out and spoke to my family to explain all that had happened during the surgery.  I was moved to the ICU where I remain for the next 6 days.

PART 4

IMMEDIATE POST SURGICAL COMPLICATIONS

The first few days were fairly uneventful although they did withhold the cyclosporine because my creatinine levels were rising which is an indicator that my kidneys were not functioning quite up to par.  Considering the amount of drugs I had been subjected to during the surgery and the first couple days afterwards and the cyclosporine which is known to be hard on the kidneys, the elevated levels are not surprising.  They were hopeful that as my body adjusted, my kidneys would also settle down.

v  April 23^rd     my kidneys were still being very fussy and not liking all the changes and medications so the decision was made that I would need about 5 dialysis treatments over the next 5 days. 

v  April 25^th     I was taken off the respirator and given actual food to eat.  It tasted soo good even for hospital food.  I enjoyed it immensely!

v April 26th     I was moved out of 10^th floor Intensive Care Unit to the step-down unit on the other side of the ward.  Also today my heart decided to throw a little tantrum and went into Atrial Fibrillation which I was told is also pretty common after this surgery. 

At one point they actually had to give me an injection that reverted my heart back to its’ normal rate and rhythm.  The injection worked temporarily but the A-Fib actually lasted off and on for several months and was treated with several different meds. 

v May 2^nd      My last two drainage tubes were removed and I was transferred to the second step-down unit on the 7^th floor

v  May 3^rd          The A-Fib continued to the point where they decided to transfer me back to the 10^th floor step-down unit so they could treat it and watch me a little more closely. They ran some more diagnostic tests on me to make sure there were no blood clots or any fluid in my lungs.

v  May 6^th         My condition had improved enough to move me back down to the 7^th floor.

v  May 8^th         I spent the evening before going home packing up my things and then watching Pollyanna and Summer Magic on my laptop to pass the time.  I’ve always been a sucker for both Haley Mills and Disney Movies. J

v  May 9^th          Discharge Day!  I was finally well enough to be discharged.  I was very happy to be going home on this day since it was our 43^rd wedding anniversary and also I would be at home to enjoy my birthday 3 days later.  I was still feeling weak and my legs were feeling quite wobbly so I had to leave in my wheelchair but I didn’t care, I was just so happy to be going home. 

Till next time, stay well