Transplant Update

[muggsmom]

It's been 6 months, but I finally heard from the Transplant Team. I had a Teleconference with Dr. Matthew Binnie, the Repirologist on the team. He said my breathing is definitely bad enough for a transplant. The next step is spending approx. 4 days at Toronto General for the assessment. He said I should hear from them sometime in May.

To say my head is spinning and I'm scared to death is putting it mildly. I must change my mind about having the assessment done a dozen times a day. But when I stop and think about how bad I've gotten just since Christmas - 3 hospitalizations, having to use a nebulizer, oxygen, and having to rehome my dog because I couldn't look after him properly - I really have no choice.

Dr. Binnie said that I have a 95% chance of walking out of the hospital after the transplant. I think that was the only good statistic he gave me. There is an increased risk of cancer, 15-20% of patients are on dialysis after 5 years. He also said that the transplant is not meant to extend your life, it's meant to improve your quality of life. The surgeon decides if you have a single or double transplant, but in my case they would try for a double because I have nodules on my lungs, and they don't like to leave them behind.

I would have to move closer to Toronto, you have to be 2 hours away from the hospital. The biggest problem for me is a lack of a support system. How do you ask someone to put their life on hold for an indefinite length of time to go through this with you? My boys are in BC and my daughter is 4 hours away and has a 2 year old and a 2 month old. But I'm putting the cart in front of the horse, I have to have the assessment done first and see if I qualify, then I can worry about all this other stuff.

[John]

Muggsmom ;You do have a big journey ahead of you .My thoughts and prayers go with you & I will be lighting a candle for you at our shrine on Thursday .

[Deborah]

Muggsmom: I am sorry that you have been through so much since Christmas. It sounds like you have been thinking about all the critical factors and are ready to take things one step at a time. I will leave it to others who have been through this or who are going through something similar to offer their stories and suggestions. I just wanted to express my admiration at your courage and my hope that you will find what is best for you and your quality of life.

Hugs from the Yukon!

Deborah

[susanny]

Muggsmom, I am in the same boat as you. I go later this month to have my PFT and I'm pretty sure it's going to show I am down far enough to qualify in that respect. Then the assessment. What is your FEV1, might I ask? Mine was 29 a year ago but last Oct. I got really sick and have gone waaaaaaay downhill since then. Very little recovery. I will keep you in my prayers and hope for the best for you. I understand the scariness of the whole process and then living with the transplant afterwards. Do you go to transplant forums to see how others are doing? I've been talking with a couple of people who have had the surgery and they are doing great. That is encouraging to me and I need that.

Good luck and God bless, Sue

[aero63]

Hi Muggsmom

Let me just say that I am glad you are sharing your ride with us.

I went through the 3 day evaluation but it wasn't a hospital stay here. Although sometimes I think without travelling it would have been less stressful.

I am so glad that you stated that the lung transplants are more for quality over quantity of life. I am still learning about what you can and cannot do and eat and everything from others that have had a bilateral or single lung transplant. Certainly with the transplant our inhalers are traded out with other drugs such as the pills. The risk of the diabetes as I am sure he told you come from the daily use of prednisone, and the cancer from the anti-rejection drugs.

My biggest obstacle to being active on the waiting list was also support. I hope that is settled for you much sooner than it was for me.

Everyone here will be there 100% of the way with you.

[Blossom/Jackie W.]

Hey Muggs; Scary..... I can imagine! Just trying to get to that place in your mind and weighing things.... it's not a decision made easily even with the strongest desire to live; much has to be weighed.

We have another lady here that I believe is/has been going through the process (in Ontario)... Shelley. And; we've had a few others that have gone through it and have shared their info. And; we had a member here.... Stargazer whose hubby had to moved from Nova Scotia to Ontario for Tx...... A big adjustment in their lives. (He's been doing extremely well still from what I last heard) and back in NS and that's been a couple/few years.

I'm pretty sure that if you don't have family, or very good friends you could live/stay with, that there might be alternatives for relocated potential Tx people. Perhaps check with the hospital's patient rep dept or whatever they call it there?

You can do this dear. Set your vision on the carrot or the end of the rainbow! You've come this far.... keep going!

[valerie]

I went for the tests etc here in Madrid for a tx- but not lucky as my heart let me down. Go for it it¡s the only thing to do. Many tx patients live for many years. I met a few at the hospital in Madrid when going for the 5 days of tests- What I wanted to say is that the tx patients here and I'm sure in most hospitals in the world are helped by the voluntary services to have a room in a flat,near the hospital waiting to be called for transplants with other tx patients (lung , liver, kidney etc....) and these organisations are usually contacted through the tx hospitals patient services depts- Maybe this wouldn't necessarily need that someone is with you every waiting day.

[shelley]

Hey Muggs & others...yep, I went and go through the process at Toronto General. i believe it was over 2 years ago that I went for the full evaluation but I was already being seen there at least a year ahead of that. I did not stay downtown as I live close to Toronto. People that do come in for evaluation or to wait for transplant usually rent an apartment close to the hospital that I believe is subsidized somehow.

Okay, yep....I have always felt the whole transplant thing, the decision, etc was bigger than me. Something no one should ever have to make and it's a heck of a lot more difficult for women because we don't do as well and men post transplant. It is very true, transplant usually, for COPDers is not meant to extend life, it's to increase the quality of life. So that is the real question that I ask myself. Am I ready to put my life down on the table and frankly, the answer is "no." Not yet. Life is still too good to risk it that much. Having said that, I could get a cold tomorrow and find myself on a vent. My guy down there is now Dr. Shane Shapera and he's great. Outgoing and honest. He also feels that given my quality of life and my lungs, I'm still early. My numbers...well my FEV1 is 23% and my DCLO is 42%. However, numbers don't say it all as I've known those who have much better numbers but less quality of life. COPDers are not the same as CF or IPFers who they know transplant will extend their lives in all probability. COPDers can go on a very long time with next to nothing going on the lung side. So, we are a mystery to them and hence why they question your quality of life. By definition, I qualified after my first visit

One of the other issues that I face as do a lot of other women who have had children, my HLA count is very high. That means, if I remember correctly only % of the population in the world would be a good match. They will have to wash my blood a number of times during transplant and post transplant but still my chance of chronic rejection is high. A question for you to ask, if you haven't already. I speak to a number of transplant people and no one is ever sorry they did it but they all have complications....however, the typical answer is "but I can breathe." That gets back to the statement "if you can't breathe,nothing else matters." So it's a very individual thing and yes, many go on for a very long time. I did just lose a friend who had a single lung transplant 20 years ago. So there are no clear cut answers.

My single piece of advice...go for the full assessment. If for no other reason than it's an incredible medical check up that you will never get anywhere else. Even if you do qualify....you don't have to go on the list and even if you're on the list and you get "the call" you can say you're not ready. It is one heck of a commitment. TGH will own you pre transplat and you'll be there 3 times per week in rehap and then for approximately 1 year after that during the recuperation and getting the meds straight time. If you live in Toronto it's not as big a thing but even I've looked just at the cost of parking, which if I park inside to be comfortable is $100/week and that doesn't include everything else but...if it helps all of this is tax deductible.

It's all very scary and rightly so. You have to examine yourself and ask yourself some very hard questions about your life here and now. There is much to weigh and there is also the flip side...if you wait too long, there is a possibility of other things happening that will no longer make you a candidate for transplant. This all gets back to the way I feel about it. It's just a decision that is so much bigger than me. It would be so easy if it was a life saving scenario but essentially this is elective surgery.WOW! That really makes one think. We each make our own decisions and there are so many that have done so well after transplant, so it is not all doom and gloom....just be informed, ask questions and spend some time reflecting. I have been told that once you make the decision; it's a whole lot easier.

Want to talk, drop me PM or we can talk. Cheers!

[mary57]

Muggsmom, I read your news yesterday but ended up not quite knowing what to say. I think it is great that you have the option of transplant, but it leaves you now with doing a lot of soul searching and thinking. I pray for you to have the strength to find the answers that will work for you. I think both Shelly and Aero and others can help you as they are on a similar path. Stay positive and be well.

[muggsmom]

Thanks for your input, everyone. I apologize for not responding sooner, but I was hospitalized shortly after I posted this and haven't been out much since. You have definitely given me a lot to think about, and I was amazed at all the things that hadn't occurred to me.

I have appointments for the assessment from Sept. to 20. Apparently I will have 3 different lung scans, 2 different heart scans, and every other test known to man, at least it seems that way. I was told that when I see the social workers, psychologists, etc. I MUST have someone with me. I'm hoping my daughter will come as she seems to be having the most difficulty with this. If she can't/won't then I have a very good friend that will come with me.

The social worker I spoke with told me they will also be looking at the possibility of a LVRS instead of the transplant. That has never been mentioned before, so something else to research and think about. I'm so proud of myself, I said "think", not "worry"! I must be getting better.

I will be receiving an info package sometime this month so I'll have a better idea of what to expect. I'll let you know when I get the package and what it says. But enough of this for now, I'm starting to get myself worked up. Now would be a good time to practice the relaxation exercises we learned at rehab.

Thanks everyone.

[sandy07]

thumbsupde1Good news. Like Shelley said...it's an incredible medical assessment. Then the decisions would need to be made.
I've heard of people doing well with an LVRS and if I was to do anything that might be what I would do. But that's just me. I would still need to pass all those tests as well as another, since I believe they can only do the top part of the lungs in an LVRS. So, that has to be the worst part of your lungs or they won't do it.
I'm a little envious. Hope all the tests go well and that you qualify for EVERYTHING.

Keep in touch.

[Blossom/Jackie W.]

Ohhhh Muggs. WOW!

I can't comment from a first hand experience so in that regard I'm at a loss and can't offer an opinion as to what to suggest. Not that a person ever should becasue.... the long and the short of it is that assuming you do qualify, the decision would be yours to make.

But; if it was me.... if I could; I would.

We have a member and good friend of mine here; WendyCo who's had the LVRS and she went through the testing for all of it. (Matter of fact I think she has a thread here somewhere on it). We have another member and friend who remians active with COPDer's on line.... ColleenPA; she had a double lung Tx several years ago. We've had the spouse, a member who was a caregiver, and after several years of living/waiting in TO; he finally received his and is doing very well. We had several other members have it done but their lives are far removed now from the world we live in as COPDer's. And; frankly; it's to be expected.... these are just off the top of my head.

Boy...

Will I qualify?
Am I willing to take the risk? (A quality of life issue)
Do I want to find out if there's anything else wrong with my body (just through the extensive testing)
Am I willing to forego, stick to a regime of... etc etc etc post tx?

I CANNOT possibly imagine the impact on a person's psyche. I know that you have to have a strong support network for it. Ask Aero (Antoinette) Boy the hoops she had to dance through regardless of the physical qualifying....

At the end of the day there will be many decisions (informed) to make that only you can decide.

So; how do you eat an elephant? One bite at a time!

Care for some elephantburger? th_hamburger

You go girl!

[Deborah]

Good luck with the assessment, Muggsmom. I want to personally thank you for posting and raising the questions you have, to draw on the wisdom of the group and those who have travelled further along this path. It sure helps to learn from this. It sounds like you might have some options to consider after the assessment but like Jackie said, one step at a time.

Deborah

[jim]

Sending you bighug[1] you are in my thoughts. beating-heart

[Colleen-Pa]

Hi Muggsmom, I am Colleen Pa... as my sign in name says...I had to come in and give you my input since I've been through it all. You will have the best check up of your life and it will be worth going through it whatever you decide. I 1st went for LVRS testing and I was turned down because my emphysema was spread out through out my lungs. In order to qualify for LVRS it has to be mostly in the upper and they cut that away so your diaphragm can expand and you breath more efficiently and it also keep you from retaining all the dead air so to speak.

I then went back and did 2 more days of testing for Transplant and they found 2 nodules and I had to wait another 6 months to see if it was cancer, it was not so I chose to be listed. It was not a hard decision for me, I wanted to live and breathe so I went ahead with it. I waited 3.5 years and finally got the call. Was the best thing I could have done, its been 3 years and I feel better today than I did last year at this time. There are some side effects to the meds but nothing I can't handle and you have to be careful around large groups of people and there are certain foods you can't eat but its all worth it. Getting used to all the meds was easier than I though so no big deal there either. I just keep a positive frame of mind and keep going, its all good and I have been blessed with a 2nd chance and I am taking full advantage of it and doing my donor justice.

Its a big decision and I wish you the best but go with your gut, its usually right. I didn't over think it and it was an easy decision but my lung function also did not stop deteriorating after I quit smoking, in fact it was on a fast track down and by the time I was transplanted it was around 10% from 20% 3.5 years earlier...I think something else was going on besides emphysema. In 10 years it went from 44% to 10.....

Also, I would advise you to take your caretaker if at all possible, they need to be informed of what your going through and what is needed after transplant, in fact at my center my caretaker had to go with me at first.

Good luck and if I can be of any help, just ask~~

[aero63]

I hope that you take your caregiver with you, the one that will be caring for you after transplant. I really think they need to be seen being involved. Do not take someone that is not on board with you from the beginning (that is just my opinion). You really don't need someone that will be questioning you on this, besides how did it go and how do you feel type situations.

I am still wishing you luck.

[mary57]

I just caught up with this and I am hoping for a good outcome for you. As to any next steps, it's what you decide will be best for you.