Updates...

[aero63]

Just wanted to do some updates.

January 29th I received a call for transplant. The call came in at about 12 or 12:30 p.m. I was told there was a possible match. They called on me to be an alternate. There was also a man that was to be the primary candidate but he has several medical issues and so they wanted me to be there as an alternate in case they couldn't follow through with the transplant for him.

I called my friend who is also my support person. He had to leave the plant in his work truck and go to the office and get his truck and then drive back. Normally it would have been a half hour up and a half hour back to me. Unfortunately he hit traffic and all in all we never got to the hospital until almost 2 or three hours later. I did call my daughter who was only 15 minutes from me but she said she would call me after work so that was no help. I didn't have cash on me so a taxi was out of the question. The ambulance company would charge me to take me all the way to Philadelpha. So I just waited. It was nerve wrecking to be honest. I called the transplant nurse back and he said to get a ride from someone else. So, my only way was to just wait it out and hope that we were able to get to the hospital on time. We are always told to only ever be 2 hours away.

So, I was dropped off at the hospital and checked in and taken to the room. The took urine and blood samples. They had a hard time getting blood from me. They did 3 or 4 butterfly needles and tried to get 13 vials of blood. I think half the problem was I had not eaten and had no water...I had just finished my coffee so I was a bit dehydrated. They also did a MRSA wash on me on my chest and groin area. I was also wheeled to the x-ray room and back.

It was about 6 hrs and the cardiac doctor came to tell me that the lungs were no good. So, I was on my way home.

My arm was really messed up from where they tried to draw blood. And my skin from the stickly pads for the ekg machine was sore and itchy. I am slightly allergic to the glue on those pads, so I didn't heal totally until about a week ago. I am a bit scarred from them as well.

The trip this time was much less urgent than before. The first call they whisked me in and down to OR. This time I guess the lungs had not been procured and thoroughly checked out before I arrived. After about 3 hrs I kinda got the feeling it was not going to be a go.

I was okay with the "no go" and the most stressful part was just getting there. As always, when I was leaving, my heart went out to the family that had a loss that nite.

I also have another update. So this is the second and if it needs to be broken into two sections I will be told.

Wednesday at about 5:46 pm I received a call from the transplant nurse. He asked about my shingles and I told him that they were gone just residual pain. He said good. He said they had a perfect fit for me but that there may have been pneumonia in the lungs because there was adeclectasis (sp). He explained that it was a sort of collaspe of the the lung of the donor and they were sure what caused it at that point until they were procured. They said that if there was pneumonia in the lung they wouldn't do the transplant and if they couldn't get the lungs to inflate to where they were happy, then they wouldn't do the transplant. They wanted me there in case it was a go.

I really had reservations this time with the information I was given. I was so uncomfortable with the idea of a previous collasped lung that I turned down the donor lungs and asked them to find another candidate. The nurse said he would get the surgeon or my doctor on the line to talk to me.

When the nurse called back we had a three way conversation with the doctor. The doctor basically repeated the same as what the nurse did. Again I said that I was uncomfortable with the situation of the donor lungs and did not want to accept. The doctor then began to say that he would have to re evaluate me for being on the list and maybe I shouldn't be and on and on. The nurse finally intercepted and then the doctor hung up. The nurse I think felt bad and knew the doctor was out of line. I felt threatened and like I was being pushed into this transplant procedure.

The nurse knew that it was not the procedure, but the condition of the donor lungs.

I was told in the beginning that if I got the call, I couldn't always decline. I never thought there would be a time that I would decline, but the information that was given made me uncomfortable. Maybe if I couldn't no longer get around or bathe myself or was in an even worse position, I may have taken the risk. But I thought the risk was greater than what I currently live with day to day.

I really felt bullied and I did cry some because I was in fear of being taken off the list.

yesterday, I got a call from the head nurse in the transplant department and my nurse had apparently went to her. She wanted to call to see if I was okay and to say how sorry she was. She said not to fear that my status was not in jeopardy and she wanted me to tell her what to do about my dr. I really didn't know what to say because I dont like to rock the boat so to speak.

This weighs heavy on my mind the last few days.

So, that is my updates. Not very exciting and who knows I may not get any calls for a while now with my blood type. But, I feel I made the right decision. I have to be confident going into this transplant in order to be strong all the way through and that is my feeling about it.

[sandy07]

I would have done the same thing.

[mary57]

Aero, you followed your instincts and they were not wrong for you. Only you know what you are comfortable with and yes the Dr. was out of line. I'm so glad to hear that the nurse got back to you with an apology. Stay strong, and try not to let this weigh on you more than it already has. Keeping you in my thoughts and prayers.

[susanny]

Antoinette, there are so many emotions involved with this procedure and wait that you and only you can choose what is right for you. I think that had I been in your shoes I would have made the same decision. You are doing so well right now that I can understand not wanting lungs that bring you backwards. Shame on that dr for treating you that way! I am glad that the nurse spoke with the supervisory nurse and you received a phone call in apology. Not from the one who should have apologized though. Jerk. I just hope he is gifted in the surgical skills where you really need him to be. Heck, I really hope you get a different dr who is gifted in surgical and bedside manner, .

WAiting is so hard. You've been so patient and I am amazed at that. I am glad you have the sweetness and love of your grandson and your friend to keep you going.I wish I could do something to help, too. I will keep on thinking of you and hoping your new birthday comes soon and is totally uneventful other than by perfection.

Love, Sue

[jim]

Aero, my heart goes out to you, life has sure given you a real roller coaster ride, it makes me so sad when I know a special person is hurting. I have no magic words, just try to hang in there and take it one day at a time and make it through another night, for hopefully the sun will shine for you one day very soon.

You are in my thoughts and my heart. hug4U beating-heart

[Blossom/Jackie W.]

Just to let you know Antoinette... I've read your post. I'll comment later. Just didn't want you to think I was ignoring it.

[bobbioh]

You made the right desision I'm proud of u

[aero63]

Thank you all for the support. It still weighs on my mind and my next appointment is on the 17th. I think I need to have a good scream and a good talk with the dr., .

Sue, this dr. is not the surgeon. The surgeon, from what I hear, is very good and kind. But, as long as he is good I will settle for a good surgeon, .

[Blossom/Jackie W.]

I've read your post and I'm in total agreement with the others; especially Sue's posts.

Nothing exciting? Good Lord woman! Where's your head!

The thing is; some of these surgeons have tremendous egos (as I've personally discovered) and they like to think they're Gods and when we're vulnerable is when their words or actions can/do, the most damage to us. I've had a surgeon walk out on me in a meeting (and never did the surgery) only becasue I questioned or wanted to bounce off ideas/options.

Antoinette; for whatever it's worth.... I would have made the same decision.

And..... how about you keep $100 or so on hand as emergency money, or even a bancard availiable if your cab co's use the machines in their vehicles? One less thing to worry about.

Last but certainly not least; rest with this thought in the words that were said to you by the nurse.... "She said not to fear that my status was not in jeopardy." In your next meeting please bring your concerns, in a pleasant fasion and from your heart.... from your lips to your Dr.

I can only imagine the stress and hearbreak this has caused hon.

God love ya; we sure do!

[John]

Antoinette ; After reading your post I feel you did the right thing ! We all know there are no guaranties life ,but it is best to do these kind of "BIG DEALS" with the odds at least somewhat in our favor . Sounds to me like we need a few candles lit for you . We are not asking for anyone's early journey to heaven ,but if it did happen that the angel make the donation make it to you without any delays .Tomorrow I'm going to make a special trip to our shrine just for you my friend . th_ShowLetterpb6

[John]

I went to the shrine this morning th_icon_hug

[wendyco]

This makes me so sad for you. you did right GF....try not to let this upset you, I know as well that our mental attitude has so much to do with the success of the surgery and if you had/have any doubts, say NO....

sending you hugs and prayers

[aero63]

Thank you all so much.

Thanks for the love, hugs, prayers and candles.

I have an appt. tomorrow so I keep talking to myself about how I pose this to the dr., . Your love will get me through believe me!

[Blossom/Jackie W.]

You go girl!
Good Luck today!!!
thumbsupde1

[shelley]

Good grief! It's so easy to feel that some of these people have control over whether one lives or dies and in a way, some do. However, as hard as it is, you really must do what sits right with you alone. I believe that we all have an instinct within us that sends up huge red flags when something is really "off" and that's what happened with you. This simply was not the right time for you and you had the strength to rise above your fears and say "no." As much as I have not yet decided to be listed, I too have been told that if I wished to decline, I could. Admittedly, that statement came with the caveat that if I declined too many times that the situation would be reviewed but certainly not after once.

I have thought of many things that would make me want to decline....smoker's lungs (since they can't figure this disease out, who knows what will happen with another smoker's lungs), drug addicts lungs (hepatitis can take years to show up) and how about the "I'm just not ready to put my life down on the table?" There are so many reasons why each of us may say "no, not this time" and only you have the instincts to know what is right for you. I surely would not have agreed to lungs that were already permanently damaged.

Keep your chin up and keep fighting. It's hard. One grows weary but when push comes to shove, it's always one foot in front of the other.

[sask5]

My specialist is well known for his work in copd and has even been mentioned on this board once or twice for studies he has taken part in.

Anyways my last appointment he recommended I start process for getting on list for lung transplant. When I explained I really wasn't interested plus it wasn't really feasible it was like he could care less for doing anything for me after that.
Need less to say I left his office and have not been back. I am doing what I can to keep my health and when it requires more serious attention I will look for a new specialist.

[aero63]

So, Monday was the appt. at Penn.

Saw the nurse first. He did the usual medical questions and such. Then asked if I had questions. Nope, .

The dr. then came in after the nurse left. He seemed to rush through the medical and quite honestly he first told me no colonoscopy and now he says both colonscopy and endoscopy.. even though it was too dangerous the last time I was in the office? The he wanted to address the Call.

He went on and on about precious gifts and no perfect lungs and many many other things I had heard. Everytime I tried to talk He tried to push it off and look at the computer or interrupt me. He talked in circles and at times just stared at me like I was supposed to say yes to something? I don't know. I just let him go. Sometimes it is no use trying to talk to those that don't listen. He talked about if I turned down the lungs and then get hit by a bus and honestly that just didn't make sense. So I began to tune him out. At the end of his rant he told me that when I get the call I go and it is not up to me think about it. He said no one ever turned down lungs but two times in the history that he had been there. One died and the other eventually had the transplant. I told him that I knew that someone has declined and a week later they received a call had a successful transplant. He challenged me on it, and I told him it wasn't his patient but was at Penn. I am telling you it was so tense.

Maybe the next appt. will be better. If not, then I will ask for a new doctor. He was not into the visit and more into chastising me so to speak.

Nothing medically seemed to be accomplished and I was quite confused when I left, .

I have a walk test on April 8th and the dr again in June.

So that is it.

Sask, I am so sorry for your experience. I do hope you are seeing a dr. though.

Shelley, it was my understanding I could decline too. I never expected I would, but this proves one never knows. I just feel everything has to be in balance.

[mary57]

Oh Aero, I feel so bad for what you have had to put up with. Big Hugs and lots of prayers for strength for you.

That Dr was a PR!!! you were right to tune him out, he was NOT in a listening mode, more of a rant mode. I pray your next appointment goes much better for you and if not DO inquire about changing Doctors. This is too important for you to be uncomfortable with the doctor who is treating you medically.

Keep your head up and trust in your instincts always.

[Blossom/Jackie W.]

Ahhhhh Antoinette; My heart goes out to you.
beating-heart

I can see/visulaize the meeting in my mind's eye very well. I agree with Mary re... he was a PRIC*!

Hopfully he's gotten over his hissy fit. And yes; Dr's do have them. I've had one surgeron walk out on me in the middle of a planned meeting for potential surgery and the 2nd one, as I discovered "after the fact," was going through a dirty nasty divorce when he did my epic surgery. The fact of the matter is... they have lives, they have personalities and sometimes.... they're just not nice people in general!

At the end of the day.... it's YOUR life on the line.... not his. For him it sounds like it 's a wanna have another notch in the handle of his scalpal.

You DID do right; for YOU Antoinette and you didn't allow yourself to be bullied!

He'll get over it.

My hat is off to you hon!

This is for you.... from the orchid family.... it's a Lady Slipper. They're not endangered here yet but the are on the protected list....



And Sask..... I hope you don't totally close the door w/o checking the weather out for yourself first. As I'm sure you're aware, it's a long process (takes awhile) Heck; think of all the tests you get done that you wouldn't normally. You can always change your mind afterwards. But; at the end of your day too; it has to be a personal decision to even think of pursuing. In your case you'd probably have to relocated to Calgary I think....

[deltagirl]

I am so sorry Antoinette, that you were treated in such an unfair manner. That doctor is truly a jerk and really needs an attitude adjustment. One can only hope that his surgical talents far exceed his bedside manner as far as quality goes, and that is why he's part of the program. Nevertheless if he can't agree that you should always have the final say in a situation as monumental as the one you're in, then maybe you should see if someone else is available. To not even be willing to listen to your explanation is incredibly narrow minded and from something you said in an earlier post about the nurse wanting you to make a complaint, you are probably not the first patient to be treated in such a way.
Good luck and stay strong!

Barb

[shelley]

Unfortunately, there's going to be one in every crowd! Sorry you got stuck with him. You might want to remind him that lung transplantation is not a life saving or even extending surgery. It main raison d"etre is to enhance quality of life for a period of time but realistically you do trade one demon for another. It's always a tough call but only you should be making the call!

Sask.....Respirologists are not trained to handle the "what comes next" phase and unfortunately, Palliative Care in Canada is severely underdeveloped. Your doctor doesn't know what to do with you now because he/she can't help you anymore. You're on all the meds available and unless something new comes along, there's nothing more he/she can do. They feel impotent and it makes them angry, just as it makes us angry when we feel helpless. I think they learn to turn off because they just can't take on everyone's grief.

As it relates to transplant, I'm sort of in the same boat but I did have the work up done because I don't like shutting doors. What one feels one day, may change the next but also, you'll get the best total body checkup you could ever have and that alone can save lives. Turning to the palliative side....palliative care is not "end of life" but it is for when the other specialists have run out of tools. The palliative team is there to keep the patient comfortable and try to enhance their quality of life. Unfortunately, palliative care, as such has been really ignored here and is in it's infancy. I have a great palliative doc who likes to meet her patients at least 18 months-2 years from crisis stage. She want to learn how they react to different meds that are under her specialty and to get to know the person's spiritual leanings, values and what they enjoy in life. It's not about death...it's about living as best possible and then when crisis does happen, the plan is in place and all parties are comfortable with things.

Our hospice system is just as underdeveloped compared to other countries and it's quite sad. You can get all the help you need to be born but not when you transcend this life. But...care is out there. Ask for it. Research it. Most hospitals are still borrowing their palliative doctors from the cancer wards but we COPDers need care too. I suppose we're paving the way but ask for it. It will make things much easier and you'll feel like you're getting care.

However, do consider going for the work up just so that doors are not closed and actually, that's where I got my palliative doctor from and she specializes in lung patient care. It really is a new branch of medicine.

Sorry for the long post everyone!

[susanny]

Antoinette, what a sick dr. you have to treat you like that. You don't deserve it. They think we are so desperate as to take anything from them. Personally, I believe you did the right thing for you, and it was the right thing for me, too, btw.I'm sorry he was such a jerk and I'd ask for a new dr if he's like that the next visit, too.

I hope you are able to get some rest and relax after this. Don't let it discourage you.

Love, Sue

[aero63]

Thank you all

I do take to heart what everyone says here. It is always consoling to have my extended family in my corner.

Many here have experienced so much bad with doctors. Thank you for sharing your experiences with me.

I wanted to say also..

Jackie that is a very beautiful flower. I have never seen anything like it.