Lung Transplant

[LyndaH49]

I hope you get good news about the transplant then YOU will have a choice. 😀

I am waiting to be seen to see if I would be a canadate for a transplant. Would you mind sharing what the testing/evaluation process was like?

Thanks,

Lynda

[Hidden]

G'day Linda

Unsure to whom you are asking re transplant.?

I can give you the assessment procedure (Australia) if it helps.

Will

[LyndaH49 in reply to Hidden]

I would like to learn as much as I can about the process. I live in the USA but I fell sure a lot of it might be similar. Thank you for being willing to share this with me. Here to learn as much as I can.

Lynda

[Hidden in reply to LyndaH49]

That is okay Lynda

I am just about to have supper and I will send you the info shortly

Kind regards

Will (Australia)

[eew051992 in reply to Hidden]

I would like some information about the procedure, if you don't mind, I like to learn as much information as I can. 

Eva

[Hidden in reply to eew051992]

G'day Eva,

Unsure where you live  UK  USA  but procedures may differ.

I have already posted the assessment as conducted by the Alfred Hospital in Melbourne Australia but here it is again. 

Our Transplant Assessment.

Feb 2015.

Susan spent 3 days in the Alfred Hospital, Melbourne Australia. The Alfred is one of the best "Centre of Excellence" hospitals in the world. It is a public entity,also an old building, but has a 5% mortality rate of patients with lung disease. I do not know of any facility in the world which achieves this.

In 2015 they did 81 lung Tx's with only 1 soul not still with us today.

This year already over 25 completed. All alive!!!.

The 3 days

My involvement was to attend some of the sessions with Susan (Mandatory as the main carer),however I was with my wife for every test apart from times when I had to wait outside the theatre.

The 3 days went like this

0810 Pharmacist

0810 Admission

0915 Carotid Duplex (radiology)

1000 Dental X'ray (radiology)

1100 VQ Scan (Nuclear Medicine)

1200 Dietician

1300 HC Anaesthetics - In the Tx clinic

1500 Physiotherapist

1600 Ct Thorax (Radiology)

Spot urine test

Sputum micro culture and sensitivity,fungal culture, AFB culture

1700 Commence 24 hour urine collection for CR clearance and Tot protein

2400 Commence fast

Day 2

Blood tests

0800 U=E's,Cr,Glucose,LFT's,Mg,Ca,PO4,Cholesterol HDL + LDL,Triglycerides.VitD,TFT's Hba1c,FSH,LH,Immunoglobulin levels,protein electrophoresis,FBE,ESR,APTT,pT/INR. TMPT activity test.

Hepatitus B surface antibody,surface antigen and core antibody, Hep C HIV 1 & 2.

CMV 1gG,EBV 1gG,Herpes Zoster 1gG, Quantiferon Gold.

Arterial blood gases.

Patient has breakfast after tests completed

1100 Lung Transplant clinic Nurse.

1200 CTHR Surgeon

1330 Dental Clinic

1400 Lung Function

1530 Occupational Therapist

Day 3

Echocardiogram

1030 Social worker

1130 Transplanr Co-ordinator

Discharge 1300.

We thought we would be returning in 3 weeks to sign paperwork for the Tx, but on arrival we were informed that we had to attend the Alfred for an Angeogram.

Panic!! What had gone wrong during the assessment.

The co-ordinator explained that this was normal procedure, however they would not do it in conjunction with the assessment as the Tx team needed to meet to discuss the Patients possible invitation to go onto the list prior.

Before the Angeogram we would receive paperwork which was to be completed and returned prior to a date being given for the Procedure.

No! we could not fill the paperwork out then, hospital protocol, It must be posted

We went home stunned.. Pestered the hospital each day for 1 week and then the mail arrived.

We completed it and they would not let us drive in and deliver it, had to be posted. Sent via express mail and followed up with a phone call next day. Paperwork had arrived.

Another week's delay and then an appointment for 6 weeks time. Also a note that the procedure could be cancelled even if we were in there waiting should an emergency case come in.

Boy did I pray hard that morning.

3 weeks after the Angeogram we visited the Alfred and signed the papers.

We have been on the list for 9 months now (Average time is 6 months)

3 criteria to be meet for suitability.

Blood type

Height. Donor must be similar height

Antigens. Mainly in women.

Blood

Susan is "A" Neg so any "A" type blood will work. If a patient is in last stage they can use "O" as it is the universal,but it cannot be used for "B" neg.

Height.

Cannot use lungs from a 6' donor if the patient is 5'7" as the lungs will be too large for the cavity. Need to remember that when the lungs start to shrink the cavity also shrinks, so we need lungs from a person around 4'8" tall as Susan is 5'3".

(This is determined by the DLCO or TLCO reading shown in %, In Susan's case her DLCO is 28%, which represents a lung shrinkage of 72%) 

Antigens.

Not so much a problem for men however , for ladies who have had children, their system has antigens, derived from the fetus during pregnancy,or blood transfusions, these remain in her system for life and can cause severe rejection of donor lungs.

I believe there are drugs to alleviate this but it still remains a real problem with the matching.

I hope this information may assist you, please rest assured the hospital will not leave any stone unturned during the assessment. 

I wish you well on your journey.

Kindest Regards

Will

[Hidden]

G'day Lynda.

Our Transplant Assessment.

Feb 2015.

Susan spent 3 days in the Alfred Hospital, Melbourne Australia. The Alfred is one of the best "Centre of Excellence" hospitals in the world. It is a public entity,also an old building, but has a 5% mortality rate of patients with lung disease. I do not know of any facility in the world which achieves this.

In 2015 they did 81 lung Tx's with only 1 soul not still with us today.

This year already over 20 completed. All alive!!!.

The 3 days

My involvement was to attend some of the sessions with Susan (Mandatory as the main carer),however I was with my wife for every test apart from times when I had to wait outside the theatre.

The 3 days went like this

0810 Pharmacist

0810 Admission

0915 Carotid Duplex (radiology)

1000 Dental X'ray (radiology)

1100 VQ Scan (Nuclear Medicine)

1200 Dietician

1300 HC Anaesthetics - In the Tx clinic

1500 Physiotherapist

1600 Ct Thorax (Radiology)

Spot urine test

Sputum micro culture and sensitivity,fungal culture, AFB culture

1700 Commence 24 hour urine collection for CR clearance and Tot protein

2400 Commence fast

Day 2

Blood tests

0800 U=E's,Cr,Glucose,LFT's,Mg,Ca,PO4,Cholesterol HDL + LDL,Triglycerides.VitD,TFT's Hba1c,FSH,LH,Immunoglobulin levels,protein electrophoresis,FBE,ESR,APTT,pT/INR. TMPT activity test.

Hepatitus B surface antibody,surface antigen and core antibody, Hep C HIV 1 & 2.

CMV 1gG,EBV 1gG,Herpes Zoster 1gG, Quantiferon Gold.

Arterial blood gases.

Patient has breakfast after tests completed

1100 Lung Transplant clinic Nurse.

1200 CTHR Surgeon

1330 Dental Clinic

1400 Lung Function

1530 Occupational Therapist

Day 3

Echocardiogram

1030 Social worker

1130 Transplanr Co-ordinator

Discharge 1300.

We thought we would be returning in 3 weeks to sign paperwork for the Tx, but on arrival we were informed that we had to attend the Alfred for an Angeogram.

Panic!! What had gone wrong during the assessment.

The co-ordinator explained that this was normal procedure, however they would not do it in conjunction with the assessment as the Tx team needed to meet to discuss the Patients possible invitation to go onto the list prior.

Before the Angeogram we would receive paperwork which was to be completed and returned prior to a date being given for the Procedure.

No! we could not fill the paperwork out then, hospital protocol, It must be posted

We went home stunned.. Pestered the hospital each day for 1 week and then the mail arrived.

We completed it and they would not let us drive in and deliver it, had to be posted. Sent via express mail and followed up with a phone call next day. Paperwork had arrived.

Another week's delay and then an appointment for 6 weeks time. Also a note that the procedure could be cancelled even if we were in there waiting should an emergency case come in.

Boy did I pray hard that morning.

3 weeks after the Angeogram we visited the Alfred and signed the papers.

We have been on the list for 9 months now (Average time is 6 months)

3 criteria to be meet for suitability.

Blood type

Height. Donor must be similar height

Antigens. Mainly in women.

Blood

Susan is "A" Neg so any "A" type blood will work. If a patient is in last stage they can use "O" as it is the universal,but it cannot be used for "B" neg.

Height.

Cannot use lungs from a 6' donor if the patient is 5'7" as the lungs will be too large for the cavity. Need to remember that when the lungs start to shrink the cavity also shrinks, so we need lungs from a person around 4'8" tall as Susan is 5'3".

(This is determined by the DLCO or TLCO reading shown in %, In Susan's case her DLCO is 28%, which represents a lung shrinkage of 72%)

Antigens.

Not so much a problem for men however , for ladies who have had children, their system has antigens, derived from the fetus during pregnancy,or blood transfusions, these remain in her system for life and can cause severe rejection of donor lungs.

I believe there are drugs to alleviate this but it still remains a real problem with the matching.

Lynda

I hope that this information may assist you, please rest assured the hospital will not leave any stone unturned during the assessment.

I wish you well on your journey and would love to hear from you after the assessment.

Kindest Regards

Will

[Luppe in reply to Hidden]

Adding my prayers to yours - all the best

[LyndaH49]

This was so helpful. Thank you!

You're right they let no stone be uncovered! As they say. You sure did keep detailed notes. That's something my husband would have done. He passed away almost 5 years ago. It's so hard going through this without his support. I have 2 adult children but one is very far away, who is willing to move her entire family to stay with me, but I'm not there yet. The other offers, is an hour and a half away and offers as much support as he can and still balance his work, family and me, his mom 😊.

It's funny, you think you'll never forget certain thing and then you do. I am trying to keep a medical journal, some days are tracked better than others.

Thank you again for your support!

Lynda

[Hidden in reply to LyndaH49]

G'day Lynda

So glad the info helped, sad to hear you are on your own at this time.

Please remain focused and positive, easy for me to say, I know, but I am the one holding Susan's hand and living with this "Beast" of a disease every day.

I hope you do have support when the time for assessment happens.

If you require any further info I am only a keyboard away.

Please keep in touch You will be in my prayers.

Will (Australia)

[LyndaH49 in reply to Hidden]

Thanks again Will, I love that you're "only a keyboard away". I may "steal" that lime 😃

I'd like to follow you but I don't see a button for that.

[LyndaH49 in reply to LyndaH49]

I found your FOLLOW button!

[Hidden in reply to LyndaH49]

Thank you Lynda

You are more than welcome to use my "Phrase"

It is my signature on quite a few posts.

I also have some nifty icons but as yet I cannot use them unless I create the post.

I have your profile now and hope that things turn to the better for you.

You certainly have had more than your share of ill luck!!

Sometimes we think the world owes us something so I keep some sense of reality by having this near my pc.

"I once cried because I had no shoes

Then I met a man who had no feet"

Sobering I think!!

Oddly enough Susan screamed at me today (she never does that), I was down in the front paddock 50m from the house. One of my sheep had broken free and came into the office. Thru the glass window. What a mess, now I have the window covered until the glazier comes tomorrow to replace the glass.

Crazy animal that one, when I arrived at the front door she came out,greeted me and followed me back to where she should have been.

Lonely girl, or as I said "Crazy"!!

Stay happy Mate

Will

[Hidden in reply to LyndaH49]

G'day again Lynda

Just thought I would try out sending one of my icons.

I have just published a new post.

The LORD and the motorist.

I hope it puts a smile on your dial

Will

[clematis5932]

I did not know much about the lead up to lung transplants I sure do now. What a wonderful post so very helpful I am sure to anyone who may have the opportunity for this. Wishing you well Lynda let us know how you get on.

[Hidden in reply to clematis5932]

Thank you Clematis,

I wish someone could have given us this info prior to assessment.

It would have made life easier.

Will

[montymillie]

hi Lynda, have you got a date for an assessment for transplant? is it the assessment prosidure you interested in?  I have an assessment on the 11th april at harefield.  if you want to know any information about it, PM me after 14th april, ill be back than and i'll tell you all about it if you want. wish you all the best MM  xxx

[LyndaH49 in reply to montymillie]

 Montymillie,

Hi, No I'm still waiting for a date. I am thinking of going on OFEV in the meantime. 

I wish you all the best and I hope you pass with flying colors. Keep me posted. 

I'm not sure I know how to PM. Is this one? 

Thinking positively,

Lynda

[montymillie in reply to LyndaH49]

hi, I hope you get your date soon. to PM you click on my little round picture, and it turns into a private message, between you and me only.  this here is a post, and every one on the forum can see it.  hope that's a bit clearer.  you stay good and positive love, good vibes lead to better vibes.  take care, love martine  xxx

[Hidden]

G'day Lynda

Just thought I would drop a line to see how you are going.

Weather has turned here yesterday 29c  today 15c

Time for the winter woolies.

Remember I am only a keyboard away.

In my prayers

Will (Australia)