Eliminating Immunosuppressants for a Transplant Patient

[Ronald Cole]

.ark thanks for sharing.  I am in the pre transplant work up. Did you have any of the problems you mentioned pre transplant,  or did develop after?

Ron

[David Ota]

Hi Ron

I did not see this thread.  How did your work up go?  The post transplant side effects of the drugs can be numerous and serious.  Pre Transplant I had bone density issues, Post Transplant (6 years post) I still have bone density issues, but they are controlled with drugs and exercise.  The new problems are: skin cancer, high blood pressure, thinning skin, and an upset stomach.  My memory is shot, and my hands shake.  I am completely out of shape, but that may be from being a slug.

[Colin O Driscoll]

I have had similar problems to David’s with side effects from immunosuppressants since transplantation, which was around 6 months ago. Health providers try to gradually reduce the dosage of some drugs, but that has not gone very far with me yet. Any research on reducing or eliminating these drugs would be very welcome.

[Diane B]

Do most transplant patients end up with other organ failure or cancer from all of the drugs?

[Colin O Driscoll]

Cancer is quite common, due to the immunosuppressants. Fortunately, most of them can be treated if detected early enough. This is why regular follow-up is crucial, as is prevention, such as taking precautions against sunburn.

Chronic rejection is a common problem later on. There are some drugs that will slow it down

[Christie Patient]

Hi Diane,
I am not sure what the statistics are on comorbidities from transplant. I do know that skin cancers are quite common, but usually an easy fix (removal of the spot with no additional treatment necessary). Other cancers are more likely than in an immunocompetent person, but as Colin said, that is why there is so much surveillance required post transplant. Compliance is part of the deal when you get on the list, and as tedious as it can be to have multiple visits/scans every year, or six months, it’s worth it to detect and treat anything out of the ordinary.

As for organ failure, I know it’s possible, but I don’t think it’s too commmon. Kidneys and liver tend to be the most at-risk organs just due to the amount of medication that they need to process. My mom had problems with her kidneys briefly after her transplant. The issues only lasted about a month, and with adjustments and recovery, she now has no problems or lasting damage.

Rejection does not happen to everyone. There are two forms: acute, or chronic. Many people live long lives without ever experiencing either. Some people have a bout of acute rejection, but with medication adjustments or breathing treatments, recover and never have it again.

Each persons’ journey is sooo different with transplant, it’s hard to predict how anyone will fare. Just do your best to stay in shape, eat healthy, and exercise as much as you can tolerate if you are considering transplant.

[Bob Rawlins]

It was one of my major concerns before I decided to have a

double  Lung Transplant.

I concluded that it was better than the alternative. Fibrosis was not going away and it’s not fixable at this time.

There are lots of studies going on about that but it wasn’t going to happen before my chronic lung disease would take my life without a transplant. I am so glad I did. Yes, the meds are challenging but LT teams have progressed so quickly over the years with Lung transplants and being able to handle most challenges and a better quality of life. This will give me an extended life, God willing,

Everyone has to decide, but I wouldn’t hesitate if all the signs are telling you to transplant, science and medicine have come so far.

 

 

[Kris manian]

Excellent information. Thanks for sharing. I have advanced IPF and I am considering transplantation.

I am going through the qualification test phase. If some one can shed light on those tests, how to prepare and look for will be good.

Also, what blood group that each of you had and how did that impact the wait for suitable lung donors?

thanks for sharing?
God bless?

[Colin O Driscoll]

Hi Kris,

I can only tell you about the prep here in Belgium, which are similar to elsewhere in Europe. I imagine that it doesn’t differ too much from the US.

Health screening
There are a whole series of tests to ensure that you are reasonably healthy, apart from your lungs, and that you don’t have pre-existent conditions that could flare up due to immunosuppression. I had blood tests to look at liver and kidney function, prostate ultrasound, colonoscopy, gastroscopy for esophagus, stomach and small intestine, examination of the carotid arteries and the coronary arteries to look for sclerosis and of course the usual bronchoscopy exams. This was also done one test after another because my transplant was done as an emergency after an acute exacerbation.

Tissue Typing

Beyond blood tests, there was also tissue typing. I don’t know the details. The time to find a match depends on how common a blood type you have. I am O positive, which fortunately for me is quite common here.

Body weight and fitness

My BMI had to be below 30. The hospital helped with dieting. They also have a fitness program to get you as fit as possible before the operation, with follow up afterwards.

 

I hope that helps, and good luck with whatever you decide to do.

Colin

[Kris manian]

Thanks Colin, that was very helpful.