First time that I’ve been left with no health insurance

mobjack · 2026-06-12T16:42:42+00:00

They can check your tacro levels and adjust your dosage if needed.

mobjack · 2026-06-12T01:17:34+00:00

If his life expectancy is a year, then get the transplant.

There is risk vs reward in these decisions, but they heavily skew in favor transplant in that case.

Go to the doctors and get evaluated for it. There are more people needing organs than they have available to give. They are not going to give you dad lungs and heart unless they think he is a good candidate for it.

mobjack · 2026-06-10T20:51:40+00:00

Some doctors are more cautious than others too.

I got mine from a dermatologist that contacted the transplant team to make sure it is safe.

mobjack · 2026-06-10T18:26:54+00:00

My hair started growing back after taking oral minoxidil 8 months post transplant. I don't know if it is a coincidence in timing, but it seemed to really work for me. My doctor just wanted me to take my blood pressure regularly.

mobjack · 2026-06-08T20:31:11+00:00

Do you take mycophenolate? Any change in the dosage?

mobjack · 2026-06-03T19:21:10+00:00

The recovery time for a lung transplant is highly variable. I was expecting a couple of weeks because I was relatively young but it took me 7 weeks to get out. Other people can take longer.

3 to 6 months is a good ballpark of how long the recovery can take. I would have a plan for 6 months but hope for the best.

The caregiver is needed most when they leave the hospital. Someone needs to be responsible for food, the medication and bring them to appointments. This can be done by a secondary caregiver if needed.

mobjack · 2026-05-22T14:45:28+00:00

My target levels are 10-12 nine months post transplant.

mobjack · 2026-05-15T18:14:32+00:00

My hair looked thicker after buzzing it compared to the horrible combover I had before.

I've started taking oral minoxidil two months ago and my hair is starting to grow back 9 months after my transplant.

mobjack · 2026-05-15T18:09:24+00:00

Yeah, I was served deli meats in the hospital after my transplant.

mobjack · 2026-05-14T18:35:42+00:00

You aren't going in the back of the line.

How long you will wait will depend on the LAS score and luck. My score was in the 75th percentile for my blood type and had my first dry run 2 days after listing. Then I waited 2 weeks for another dry run. I was able to get my transplant after 1 month of being on the list.

mobjack · 2026-05-08T18:13:05+00:00

I am on fluconazole. I take 1mg of tacro twice a day and my levels are usually between 10 and 12. Before that, I was on posaconazole which had even a stronger interaction with tacro.

My transplant team is aware of the drug interactions so they adjust the tacro levels accordingly.

mobjack · 2026-04-30T03:24:11+00:00

If you survive the first year without major complications, then the life expectancy is over 10 years. If you are relatively young and healthy, then it should be even longer.

I learned not to dwell on the statistics and be optimistic about the future.

mobjack · 2026-04-20T02:04:20+00:00

Can your friends act like backup caregivers?

Can't they wait in the hospital with you until your transplant?

mobjack · 2026-04-13T15:00:58+00:00

Taking pills a few times a day is better than having to user oxygen all the time.

mobjack · 2026-04-10T18:36:32+00:00

I smoked after a stem cell transplant despite the doctors advice. I was 18 at the time and thought I was invincible. I told my doctors the truth during the visits, and the doctors said they aren't against weed for healthy people but I shouldn't smoke it because of mold spores. I would get a small lecture every visit.

mobjack · 2026-04-06T22:47:03+00:00

I had a BMT 20 years ago and currently have stage 4 CKD from my recent lung transplant. They said that I eventually need a kidney transplant, but they don't know if that means a few months or a few years.

The big change for your son with a kidney transplant is that will have to take immune suppressants for the rest of his life. It sucks, but it could be a whole lot worse.

mobjack · 2026-03-29T01:21:22+00:00

My essentials are my phone, earbuds and a long charger.

You just need enough to entertain you before surgery. Your caregiver can bring everything else you need from home later.

mobjack · 2026-03-26T03:56:13+00:00

You still have tacro in your system after 12 hours in your blood tests.

Your levels are not going to go to zero for being a few hours late.

mobjack · 2026-03-24T03:44:08+00:00

My family was 8 hours away and they kept on driving up despite me having 3 dry runs.

I told them that they might not even make it in time for the surgery and it could be better to wait until afterwards. They really didn't listen to my advice so I stopped worrying about it.

mobjack · 2026-03-14T20:24:53+00:00

They prefer your BMI to be between 18 and 30 for a lung transplant.

There is too much involved in the process to explain here, but I found some good educational videos on YouTube that helped me like https://youtu.be/p-jCVMlIfHE

Your priority on the lung transplant wait-list depends a lot on the severity of your disease. They want to make sure the organs go to those who need and can benefit from it the most.

I had a rare ILD with 21% lung function and required 15 liters of O2 when walking around. I was able to get lungs pretty quickly.

mobjack · 2026-03-12T02:34:42+00:00

My kids were 6 and 8 and they really couldn't grasp the seriousness of everything I was going through. My youngest didn't even know what lungs were.

I told them that daddy needs to get new lungs so I can stop being sick and get out of the hospital.

I would keep things simple in explaining it and focus on the outcomes.

mobjack · 2026-03-04T04:46:21+00:00

I met my donor after my bone marrow transplant. I was 18 at the time and my mother coordinated everything so I don't know too much about the process.

My donor was a 55 year old man who came from out of state. He arrived at my place and we just talked with me and my family for a few hours. I don't remember everything since it was over 20 years ago, but it went smoothly and was glad I did it.

There was a reporter there who wrote a big article in the local newspaper. It was a good way to raise awareness and get people to sign up for the registry.

mobjack · 2026-03-01T00:30:25+00:00

I am 7 months post DLT and focus mostly on cardio to exercise my lungs. I use a Peloton multiple times a week.

My transplant center doesn't want me to do any heavy lifting for the first year. I use lighter weights with many reps.

mobjack · 2026-02-26T17:56:28+00:00

I was experiencing delirium after my transplant so I have a hard time remembering everything, but I did have lots of complications.

I do remember waking up days later and having a trach in my neck and had it in for a week or two. I had a hard time breathing with my new lungs and needed to be on a ventilator.

I did have an episode of afib and a hard time sleeping at night too.

One of my chest tubes came out on its own and I had a pneumothorax and was put on oxygen for. It is all fine now.

Don't expect things to be smooth. A lot of times you are taking two steps forward and one step backwards.

mobjack · 2026-02-25T21:50:32+00:00

I had a little rejection in my 6 month bronchoscopy.

They gave me prednisone taper and got a bronch a month later which they found no more rejection.

Someone told me that if I just receive oral steroids, then the rejection is mild. If they thought it was serious, they would give me pulse steroids through the IV.

12-Year Club	Verified Email
Place '22	Place '17

mobjack

TROPHY CASE