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T O P I C    R E V I E W
paulmjo Posted - May 27 2019 : 4:43:04 PM
I have tried Miami, closest to me to see if a transferplant was feasible. evaluating doctor said too old too high risk. Not sure why high risk, except age. Heart good, liver and kidney function good, no diabetes, colesterol 156 with meds, blood pressure 111/68 with meds. Guess just didn't get sick enough soon enoughh.
Anyone know people over 74 had a transplant?
40   L A T E S T    R E P L I E S    (Newest First)
Sokcap48 Posted - Jan 26 2020 : 8:47:11 PM
Paulóthat is very much individualized. It is no walk in the park but manageable, they basically cut you in half, your team will help you every step of the way. Listen to them and especially your physical therapist, mine was an angel not only helped me physically but also mentally. She was my cheerleader! I had NO problems with lungs or incision. My problems were all stomach, part me ( my large intestine looped over my liver and had to be put back in place) part medsóI had no appetite lost weight and thus energy. But the team got me going. I was out of Hospital in 10 days ( about average ) after about 8-9 weeks everything turned around and I was good to go. Went on my first little hike 1 1/2 miles in the foothills out of Phoenix 75 days after transplant. From then on it was great. It takes a while for your body to catch up with your lungs :-). Keep doing what you are doing the stronger you are going in the stronger you with be coming out. Keep doing those squats or sit to stands! They will help to get your self out of bed after surgery because you can NOT use your arms to push pull or lift fit a long time. Your team will show you how to hook your leg over the side of the bed a lift yourself up out of bed.
paulmjo Posted - Jan 25 2020 : 9:05:49 PM
thanks, am doing all i can, exercise almost every day, little peddle machine 30 legs, 20 or thirty arms, try to walk stairs, squats 10-15 no weights, walk around house.
.
Paul, how was recovery? trying to do all i can at 75 to make it a quick and steady one.Can ot wait to get started, get y life planned and take care of a precious gift.
Sokcap48 Posted - Jan 19 2020 : 09:55:45 AM
Hang in there Paul. It is worth the fight. Best wishes! Stay in as good f shape as you can.
paulmjo Posted - Jan 16 2020 : 7:50:46 PM
They are looking for TB, since one test showed latent TB and one did not. Meanwhile am on medication for TB for past month and say I need to take it for 9 months. I assume results soon as was cultured 11/10/2019
Dave-OH Posted - Jan 16 2020 : 12:57:38 PM
I have gotten cultures back in a few days, but sensitivities take a bit. So does mycobacteria and fungus and other stuff.

It depends on the organism that's being cultured. If it's a bacterial culture you could have the results in a week or two. If it's a fungal culture it could take as much as 8 weeks.

paulmjo Posted - Jan 15 2020 : 3:26:56 PM
Thanks for all the input, requested my third pulmonary rehab but need special exceptions from Medicare since used up my allotment trying to get healthy.
Still no word from Mass General, tough having patience when type A big time.
Been 35 days since last sputum culture, they say takes time to grow to see what it may be, even could be nothing, I just wait doing as much exercise at home as possible in this cold weather.
I start to feel like itís not going to happen, hope I am wrong.
Dave-OH Posted - Jan 10 2020 : 11:59:27 AM
Yes. it is hard enough to be healthy enough for a lung transplant while still needing one. So many factors are against a transplant. Heart disease, failure to do pulmonary rehab, certain infections, liver and kidney issues. It is a balancing act for both old, and the young CF patients who also get transplants.
paulmjo Posted - Jan 10 2020 : 09:43:26 AM
Well continued bumps in the road, I moved in with my brothers family to be near Mass General who activated me upon my arrival. That lasted one week, they say a sputum showed mycobacterium and are waiting further results as to what it is, been one month now. Other samples showed nothing. Am off Mayo since I moved here, now one female doctor said I didnít look as good as in November, funny I feel stronger, so she is hesitant to recommend surgery, but will wait. Darn frustrating.
Seems LAS score is lower than most, but as you get older and score goes up they seem to not want to do surgery, boy its a find line to be sick enough and healthy enough.
Sokcap48 Posted - Dec 01 2019 : 6:59:37 PM
Yes indeed they rip your kidneys and liver all to heck BUT. You will be alive :-). And they monitor all your stats very closely. After your 3 month stint. You will go back Monthly the first year and quarterly after that and will have labs done each time. You will do fine I am right here if you need anything from me.
paulmjo Posted - Nov 30 2019 : 11:41:32 AM
Paul, Utah. Boy they scare you with possible results, complications etc. guess they have to disclose it all, two scariest are they say meds damage kidneys and possible have to be on dialysis rest of life plus I do have some small amount of plaque in artery near heart and in Carotid arteries and they say could have a stroke. Not scaring me off, just makes me anxious.
I know if you believed all warnings on medications, you wouldnít take any.
Thanks for the support hope I get surgery soon.
paulmjo Posted - Nov 29 2019 : 8:42:56 PM
Thanks all, will leave Florida 12/12 for brothers house not too far from Mass General, hope for a call soon after, at my age the sooner the better, turning 75, 12/09
Sokcap48 Posted - Nov 29 2019 : 3:37:23 PM
Paul ó So Happy for you!! That is awesome, a life changer! Get as strong as you can, walk and exercise, and do your ďSit to StandsĒ. The better shape you are going in the better shape coming out. If I can answer any questions let me know. Once again Congrats!
Dave-OH Posted - Nov 28 2019 : 5:56:46 PM
Congrats and Happy Thanksgiving
paulmjo Posted - Nov 28 2019 : 1:34:54 PM
#128512; just got the call this week that Mass General accepted me for a double lung transplant and will put me on active status as soon as I get in the area.
Living in Florida now, but will move in with my brother and his wife until the magic time, and they and nieces will be my caregivers post surgery. Canít wait to get started as I am 75 on 12/9 and will be one of the oldest if they find a donor and I get the call.
I am sure even with lots of research I am going to be surprised at most difficulties and recovery duration. Good news, I am aggressive with recovery and follow everything thatís required. I know a bigger risk at my age, but willing if they are willing. Scared and excited and happy to be accepted.
Happy Thanksgiving to you all.
Sokcap48 Posted - Oct 17 2019 : 3:59:42 PM
Jan I TXíd at St. Joes 9-30-16. They have an awesome staff. You will need to have a caregiver and at least one backup care giver. This is totally necessary! You can not take care of yourself for a long while, physically or mentally. ( you can NOT drive for at least 6 weeks ) As Jean said they have a short turn around time. We temporarily moved from southern Utah to Phoenix. Was listed Sept. 6 got my first call on the 11th. Turned out to be a ďdry runĒ got my next call the 29th and was Txíd on the 30th.

If I can help or answer any ?ís just ask! You can also PM me.
Regards
paulmjo Posted - Sep 20 2019 : 08:16:25 AM
Oops, now they tell me not listed, but still approved for listing. Released me from Clinic, return one month for evaluation. On O2, but not 24/7 so score is low.
I have real swings in mobility, sometimes walk some distance no real problem, then canít do short walk. Saturation all over the place, walk its 93, but completely out of breath. Getting a bit despondent. I donít expect miracles just want to stay self sufficient even at low level.
andy55 Posted - Sep 18 2019 : 9:25:24 PM
quote:
Originally posted by paulmjo

I have been approved for double lung transplant at Mayo Clinic in Jacksonville.#128512; Told be listed this week. Yes!
Am trying for dual listing at Mass General since family all within an hour while on wait list and post care.#128591;



Good luck, Paul. I am expecting to be listed soon myself.
paulmjo Posted - Sep 15 2019 : 10:57:19 AM
I have been approved for double lung transplant at Mayo Clinic in Jacksonville.#128512; Told be listed this week. Yes!
Am trying for dual listing at Mass General since family all within an hour while on wait list and post care.#128591;
andy55 Posted - Sep 05 2019 : 12:09:31 AM
St. Joe's Clinic (also called Dignity Health) in Phoenix is one of the best in the country. I live 2 hours from there.
jmrommes Posted - Sep 03 2019 : 10:09:20 AM
Yes, one of the best, and one with very short wait times. I have a good friend who had his TX there. Phoenix is a good choice.
Jan-KS Posted - Sep 03 2019 : 03:29:48 AM
See - that's the problem they don't facilitate making anything happen they just expect you to navigate the scene yourself. I realize the big barrier is to live 2 hours from the transplant center then I could move wherever but I need a caregiver to go with me. Until I have surgery I could survive without any help - driving in a strange city would be a little scary but I'd do it - now after the surgery - that's when I would have to hire somebody once I was released from the hospital. I don't understand why the hospital makes life so difficult (having to have two backups - screw them - Its obvious to me they don't actually want any customers when they start making ridiculous demands.)

I live NO WHERE near a transplant place. Barnes actually kept me on their list after we had long given up - they called me and said "do you still intend to have the surgery, you look like a good candidate" and I had to have them take me off the list. The two places I know of are Barnes in St Louis (7 hours) and Oklahoma City (5 hours). The medical center for Kansas University talks about doing them but then they gave up doing heart transplants and gave the authority to another hospital. I'm in Palliative care right now and they MAKE things happen rather than put barriers in front of you - but they've never worked with a transplant - just cancer and other critical illnesses. I'm just finally to getting to the point where I can care for myself but I can't take out the trash or really cook. I have no interest or reason to live. I never see my daughter - she's too busy to call even if I call or text her. The very last think she's going to do is risk her and her husband's career - plus her husband is required to stay here until his daughter is out of school and he no longer has custody. My cousins all work full-time jobs except the one that has cancer. I do have one that cares for his father full time (who has alzheimers) because he himself is mentally disturbed - I don't think I would be completely safe around him, he has trouble with women rejecting him. I have one in Arizona recently widowed that would probably do it as long as I supported her and she'd want time off to see her children/grandchildren - so does Phoenix have a transplant center?
Dave-OH Posted - Sep 02 2019 : 8:56:16 PM
I am pre-listed at Hopkins. I was listed before and had tests both in my home hospital and a week at the center.

I am fortunate, mu son and his nurse girlfriend live 40 minutes from the center, and she is a cardiac care nurse there as my backup. That vie me 3 caregivers plus if it is 5 years off my granddaughter with be a teenager.
paulmjo Posted - Sep 02 2019 : 2:05:03 PM
Update, I canít believe the extent of testing at Mayo Clinic in Jacksonville to evaluate me, started 8/12-8/16, again 8/19-8/23, again 8/20-8/23, WOW!
Got a call 8/30 approved by team for double lung transplant. Not sure of protocol of other hospitals but must have primary caregiver during surgery and for 3 months following and stay a few minutes from hospital. You canít hire anyone as a caregiver and each caregiver must have a backup. I lost my spouse 1 1/2 years ago so this part is difficult to ask friend(s) to give up 3 plus months 300 miles from where they live. Two gal friends have offered to be primary caregivers with another as backup, but can take turns every 2 weeks, Mayo said minimum is 3 weeks each, and then I need two backups if I have two caregivers.
Hope for surgery but this part is hard to fill. Seem to have gone downhill and donít want to be removed from approval.
Any suggestions from other transplant patients?
Lora-WV Posted - Aug 30 2019 : 5:02:12 PM
I feel so blessed to have a great support system, my step daughter drove me for the transplant, my
daughter, who is an atty flew in for the transplant and for everything that she deems important, which
is quite often. My younger sister, whose granddaughters I am raising, drove all the way from Arizona
to stay with me for 6 weeks. I feel so lucky and I am so thankful that I was able to be there for my
husband.

The Hillman Cencer Center called and the tumors have not grown or moved but they are still
there so we will be starting something that is called RCHOP which I guess is a harsher chemo.
Not sure when , all I know is I will beat this. I continue to be thankful for having the transplant,
Iím still so much better off than I was. I do think my breathing is better so things are looking up!

Jan, Iím sorry that youíve been having problems, do you have any cousins or good friends?
Desperate times call for desperate measures. Hang in there and keep the faith.sometimes if we
ask for something, itíll just happen.

Andy keep up the good fight, I know I was told that one of the criteria to transplant was you had
to be on oxygen 24/7 not sure whether that has changed or not. But then by the same point my
allocation score was pretty low and I was working full time when I got the call so who knows?
Dave-OH Posted - Aug 28 2019 : 5:45:28 PM
I had to choose a transplant center. There are 4 within 2 hours and 2 more within 5. But I did
Choose one 8 hours away. I also have a small family,but the family lives in Maryland and we live in Ohio. The consideration is my wife has her son and his girlfriend is a nurse at the hospital with the transplant center. You and your family have to figure out if they can make it work. A transplant comes with it's own issues. I am again pre after a previous listing under the old system years ago.
Sokcap48 Posted - Aug 28 2019 : 3:11:44 PM
Jan-KS Sorry you are feeling dumpy. Sent you a PM . Hope it answers some of your questions. Write me with any questions and I will do my best to answer them.
Jan-KS Posted - Aug 28 2019 : 05:57:07 AM
I'm so frustrated (jealous) because I can't find any way to meet all the criteria necessary. For example, a few years ago I approved as a possible candidate at Barnes Jewish hospital in St Louis - they basically told me I had to move to St Louis (it's 7 hours away) - at the time, my husband wasn't really ready to move because of his poor health and wanted to see as much of his kids and grandkids as possible plus financially we would have lost money on the sale of our house - it would have been a financial nightmare.

Well now my husband has died, I sold the house for exactly what the bank showed I owed, so all of his reasons have no bearing on my decision but I guess I have to have a caregiver to go with me. I only have a daughter and son-in-law expecting a baby soon. They both have professional careers too. So there is no way my daughter could come with me. So just because I have a small family and I'm not rich enough to hire somebody 24/7 I don't have an option to even get a lung transplant? Have any of the options changed? I also know I could not reliably drive due to all the pain medication I'm on. I need a wheelchair to navigate a large hospital because I cannot walk far. I'm only 58 and it seems I could have a much longer life live and a better quality of life if I could get a transplant. I'm so depressed and alone and unable to do much of anything physical.

I know life isn't fair but I feel so cheated
andy55 Posted - Aug 24 2019 : 1:31:44 PM
Lora, Great to hear from you. I was worried because I knew that you were having trouble and I didn't see a post from you for awhile.
Please keep us updated.
jmrommes Posted - Aug 18 2019 : 8:51:34 PM
They're starting trials. But it is legitimate research, not the snake oil crap the Lung Institutes have been selling, literally. This is just the beginning. I think we'll see more in the next couple of years.
Jocopd Posted - Aug 18 2019 : 10:10:36 AM
quote:
Originally posted by paulmjo

Yes as Dave said, now an allocation score and feel I will not qualify as not on oxygen 24/7.
Mayo been great, this coming week will have consultation will all doctors on transplant team, if not transplant, maybe LVR, if not maybe clinical trial for stem cell that Mayo just starting. We will see.
,



Mayo is starting stem cell stuff for lungs? Wow so maybe it wasn't all snake oil after all.
paulmjo Posted - Aug 17 2019 : 4:28:38 PM
Thanks Laura, and best wishes to you. Testing a long process, never thought two weeks, had ten on Tuesday, 6 Wednesday, 4 Thursday and one Friday.
Total 30 vials of blood, two many tests to bore everyone with, but sure think they and I will know everything there is to know.
paulmjo Posted - Aug 17 2019 : 4:24:15 PM
Yes as Dave said, now an allocation score and feel I will not qualify as not on oxygen 24/7.
Mayo been great, this coming week will have consultation will all doctors on transplant team, if not transplant, maybe LVR, if not maybe clinical trial for stem cell that Mayo just starting. We will see.
,
Dave-OH Posted - Aug 09 2019 : 8:55:39 PM
Best wishes. I have done it and was listed, but then the rules changed and am not sick enough yet. In those it was time on list. Now it is lung allocation score.
Sokcap48 Posted - Aug 09 2019 : 6:48:43 PM
Best wishís on the evaluation, it can be stressful but not bad if you just let them walk you thru it.

Lora- catch us up on all your finds and how you are doing
Lora-WV Posted - Aug 09 2019 : 06:42:18 AM
Good luck Paul, please keep,us posted. Here's an update on me I have PTLD which is lymphoma related to the transplant.
They said of all the things to get this is the best as its more easily treatable. I'm starting my second infusion of the second
go round today and feel fairly good. I've been back on oxygen but still so much better since before transplant. I've been
getting some work done around the house the I've been unable to do for years, painting, cleaning etc.... So I can't
complain. Ill go to the Hillman Cancer Center in Pittsburgh the 23 to get a PET and CT scan and will know more then.
Paul sokcap48 I emailed you a few weeks ago but apparently it didn't go through.
paulmjo Posted - Aug 08 2019 : 09:35:47 AM
Not sure how will turn out, I keep trying. I am going to Mayo Clinic in Jacksonville, Fl on 8/12 for two weeks evaluation for transplant. I sure will know everything about myself at the end, quite a schedule of tests.
If nothing else, maybe have some other suggestions for me.
andy55 Posted - May 31 2019 : 4:08:24 PM
quote:
Originally posted by paulmjo

I have tried Miami, closest to me to see if a transferplant was feasible. evaluating doctor said too old too high risk. Not sure why high risk, except age. Heart good, liver and kidney function good, no diabetes, colesterol 156 with meds, blood pressure 111/68 with meds. Guess just didn't get sick enough soon enoughh.
Anyone know people over 74 had a transplant?



Paul, whrn I interviewed at St. Joe, they told me they would do TX up to the age of 75.
Lora-WV Posted - May 30 2019 : 8:08:06 PM
Having surgery tomorrow morning, they will make a few incisions and try and take some growths in my lungs to find out
whatís going on. Would appreciate your thoughts and prayers.
andy55 Posted - May 30 2019 : 7:12:16 PM
Good luck Lora. I am hoping that you will get back on track. I have been going to a TX support group lately, and they discussed rejection and how they deal with it. I assumed that the first sign of rejection meant that the show was over, but they informed me that this is not the case. It often means that adjustment to the medications is needed.
Lora-WV Posted - May 29 2019 : 5:55:03 PM
They have Family House here in Pittsburgh that has free transportation to the hospital, the charge for Family House
is $68 a night. They had cooking and laundry facilities available and itís just a nice place to stay and affordable.

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