Lung Transplant Preparation

[Susie-54]

I am getting ready for a 5 day evaluation (testing & labs) for lung transplant in Nebraska-USA.

I’ve been reading this site for almost a year now getting lots of good tips and do the same with a FB Transplant page.

I have Idiopathic Pulmonary Fibrosis, move slowly and responded to drug therapy for 2 years but recently decided to increase scaring. So I’m sick enough to qualify but not too sick to not be considered.

Any tips from anyone?

#1 I think is listen and follow ALL directions!

Tell me the most important ones for you all!😊

[Lemon7]

I have no knowledge to pass on to you but wish to pass on good wishes and hope everything goes well for you.

[sassy59]

Wishing you all the best Susie. Xxx

[Thomac]

My husband just got a date for his assessment in Newcastle Uk so keen to see what advice you get here and on FB.

[Carnival567]

I hope all goes well for you xx

[Shazrab]

Hi I was diagnosed with pulmnory fibrosis 3 years ago to be told one year later I didn’t have it I was terrified thinking I’m going to die. Drs said I do not have it but I do have a lot of scaring on both lung and chronic bronchitis also blood clots and a lot of wear and tear . I think it’s great news that the medication helped you and I think you must be awful worried about your future. I really wish you all the best for whatever the outcome is. You’re in my prayers 🌹🌹 please keep in touch and let’s know how you get on I’ll be thinking of you susie54. This group has been such a great help to me and I’m sure everyone who can advise will help you. Take good care of yourself 👍💕

[Susie-54 in reply to Shazrab]

God has this whole journey!❤️ Praying for a good position on the list. I always knew this was going to be part of the journey. I just never thought of myself as the receiver. 5 years ago I was my sister’s stem cell donor.

[Shazrab]

Morning sisie54 I just wanted to ask does this mean you will get a lung transplant, I hope you have a good day 🙏🌹x

[Susie-54 in reply to Shazrab]

These test will determine my placement on the list. It could also determine that I will never be put on the list. It is a sick enough to qualify and not too sick to be disqualified situation. If I get a transplant I won’t need oxygen support. If I don’t get a new lung, my oxygen support will increase to the place where I will mostly be home bound.

[Peppy05]

Hi Susie-54 I'm also from usa, Louisiana I have borderline copd since 2018 I'm glad they found it early. I just want to tell you keep your head up and be strong. you have my prayers and God bless you, peppy05

[LyndaH49]

I was turned down because of my weight

[Hacienda]

Good Luck Susie, Hope all goes well for the Pre Assessment. Lets hope your not waiting too long, Then have a Great Life after Trx. Hugs xxxx

[Izb1]

Susie, I will send my wishes out into to the cosmos and pray very hard that you get the chance of this transplant and live in hope that the powers that be hear our prayers. Irene x

[Hidden]

G'day from "Down Under" (Australia) Susie,

I have kept a journal of my wife (Susan) and her battle with IPF (diagnosed in May 2014, received a bilateral lung Tx on the 15th July 2016), so I hope that I may be able to offer you a little of our journey.

This text will be long winded as I do not want to leave anything out.

Each country is different in how it goes about lung transplant but the criteria is pretty much the same.

You will visit the hospital.... (here in Aus, you must be referred by a lung doctor) and after the hospital consultation ( which it appears you have already done) you will be required to do an evaluation test. Here it is 3 days as an inpatient).

I am guessing that the team have already checked you weight and have done a LFT (Spirometry) test.

These lft's are important.

Please purchase a note book (small) and ensure you write in it, the date, the results of the LFT, in percentages i.e 79%...your pulse 81 (beats per minute) and how you are feeling that day as your results can fluctuate .

Susan, on one day had a 41% ,feeling normal (if there is such a thing with this disease) and four weeks later the reading was 28% , with the next reading back to 41%.

In her notebook was this "Felt very short of breath today and the o2 was not really helping"

I guess what I am saying is do not be alarmed if the figures drop, providing you have the cause...SOB or something else.

You need to be in a healthy weight scale for your height , if you are above the limit you will be asked after the evaluation, to go home and lose weight, prior to being accepted / considered to join the the waiting list. In our case it was 7 K's. Susan came home determined and when she returned to the hospital my wife had lost 12 K's (very determined lady).

There are three things you must start TODAY

1. Maintain a weight loss reigme (if needed)

2, Start on a healthy diet (AND STICK TO IT)

3. Exercise...not the ones you may know from earlier days but correct exercises for an IPF sufferer.

If already doing exercises, and they are ones shown to you by a qualified lung rehab physiotherapist, maintain a daily routine. If the exercises are not, please contact the hospital as they will have such a clinic there and will give you the info needed.

I am sure there are lung rehab centres near you. Join one and go regularly. (we went twice weekly)

Your body will go thru a tremendous ordeal during the Tx and if you are not fit enough the hospital will not perform the surgery. So the ball is in your court. even when you feel that you cannot do the exercises. that is when you HAVE to do them

If you do not have one please purchase a finger monitor, they are available in most pharmacies or online. They usually sell for around $20. Write down in your notebook the date, time, and the results..(Example)Heart rate 91bpm and sats 125/85 .

I suggest keeping a double page for the following

1. LFT test results and the date

2. Finger monitor, the date , time and how you were feeling.

Mark and use the back half of the book QUESTIONS

Always write down any questions When the thought is there. Never leave it to your memory. IPF can play some mean tricks with you and memory.

When you visit the hospital for your monthly (ours was 6 weekly) clinic take your note book and write down what the doctor tells you and then start with your questions. Do not leave until you get the answers.

QUESTIONS for you

Are you suffering with mucus?

Do you have a dry or wet cough?

Are you on 02 and if so how many litres?

How long since being diagnosed?

Are you seeing a lung doctor , apart from the hospital?

Is the coughing prevelant during the night, or day, or both?

From the many sufferers and transplantees I know ( we are in an online group of survivors of the Alfred rehab gym) having had heart and or lungs replaced, we all cross reference the symptoms pre and post TX.

No two people have the exact same symptoms.

I do not know how far you have come on this rocky road we call IPF but you are not alone...

Never give in to this insideous disease.

IT CAN BE BEATEN.

I am only a keyboard away, if you wish to contact me.

GOD Bless and I will keep you in my prayers

Will (Snoopy)

[Susie-54 in reply to Hidden]

Thanks for your lengthy reply. I am doing so many of these things as I have been a part of a research group since Jan 2017. Been on Oxygen 24/7 since October 2016.

I love spreadsheets so I have lots of data. I use a Fitbit and have a treadmill and weights at home.

I will for sure keep in touch and add your suggestions to my binder. What is a good source for the Pulmonary rehab exercises. Never too late to get working on those. Things have dropped off O2 wise since November. I also had bad finger circulation and can get some real wild O2 stats!😊

[Susie-54 in reply to Hidden]

Found some good stuff on the web

pulmonaryfibrosisnews.com/2...

[Hidden]

You seem to be on the right path Susie ..however you need to consult with a Pulmonary rehab Physiotherapist.

There are some exercises you must not do.

I would strongly recommend not to use weights until you have spoken to a physio. There are the barbell type...definite No No

The lungs need to be kept at optimum level and as equally important so does the heart. Weights can put undue strain on the heart.

Susan used the elastic ribbons (Theraband) (different colours for extra tension) supplied by the rehab clinic she attended. These are available on line

Also the large inflatable ball which is placed between your back and a wall and you roll up and down against the ball.

Exercise bike is good, treadmill is essential.

Outside walking not so good. At home you can stop at anytime and rest. Not so if you are a mile from home.

All these things a qualified lung physio can advise you.

You can use a chair with a back on it. Sit with your back straight.Stand up keeping your back straight. Sit down. Repeat this 10 times.

Under physio supervision Susan used 1 and 2 k weights hand weights. Here is the link.youtube.com/watch?v=lFhBNZ6...(Not working as expected?).

I forgot to ask if you have "Clubbing of the fingers and or toes"

Best wishes

[Susie-54]

Thanks for all your great advice and suggestions!❤️.

I have an exercise physiology/physical education/swim coaching background and my current home program has been approved by my doctors team. I’m not going wild and have been told the cautions. I live with my pulseox meter in my pocket. I do not have any clubbing but do have increased loss of circulation and tingling off and on. For sure wearing gloves here now as it’s very cold.

I was in a very weak place when I got my diagnosis in Nov 2016 and have worked my way back to a semi normal life just connected to a hose. I use the tank/concentrator for strength building 😆. I have figured out how to get house chores done and which ones I must defer to others.

We have all equipment you have mentioned in our exercise room... thanks to my sisters & brother in law!

We live outside a small town so having this available in the house is great. If I walk outside I make Circles around the house staying close for tank changes & restroom breaks when necessary. Thanks Again!