"What is the quality of your "match"?"

Posted by hello1234 @hello1234, Sep 6, 2022

Hi Everyone, 😊
My local nephrologist asked me for information on the quality of my match with my donor. He said normally this is supplied in a packet by the transplant center when they transfer the patient out of their care to the local provider. It normally includes PRA Panel Reactive Antibody information, HLA Mismatches, etc. Did you or your local specialist receive information like that about the quality of your match with your donor? Do you know the quality of your match?

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@windwalker

Estrada, how was your HLA panals? Mine are horrible. I feel like I will have constant rejection issues or death post transplant.

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Hi @windwalker 😊
Did your doctor review your HLA panel with you or did you read it on your portal?
What information did it reveal and why do you think it it "horrible"?
I haven't been able to see my information (or get a copy for my local nephrologist) but I was verbally told that I have "1 in 6 matches".
My local nephrologist told me that Mayo definitely has the information and I should continue to request it for him.

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@hello1234

Hi @windwalker 😊
Did your doctor review your HLA panel with you or did you read it on your portal?
What information did it reveal and why do you think it it "horrible"?
I haven't been able to see my information (or get a copy for my local nephrologist) but I was verbally told that I have "1 in 6 matches".
My local nephrologist told me that Mayo definitely has the information and I should continue to request it for him.

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@hello1234 I believe you and I have the same, as if I remember correctly I have a 5 out of 6 mismatch, but with no adverse reactions. (when our blood was mixed) I think the “no adverse reactions is the most important part. I haven’t had any rejection in my first two biopsies post tx, but will see what happens at my 2 year appointment the end of November. My point is, just because you don’t have a perfect match it doesn’t necessarily mean rejection.
They would not give us the tx if they anticipated rejection. Maintaining their success rate is very important to a transplant center, second only to wanting the best for their patients in my opinion. Hugs to all.

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@hello1234

Hi @estrada53 😊
Wow, I am impressed with your doctor notes! Thank you so much for sharing the level of detail provided.
My doctor notes do not include any of the crossmatch, PRA, HLA, etc. I don't know if the difference of information provided is because I am a kidney transplant and you are a heart transplant, or because it's a different Mayo location or something else.
I was told verbally that I had "one match out of six". Did your doctor mention the number of matches or the quality of match?

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Hi @hello1234
They told me (both my nurse coordinator and my surgeon) that this heart was a great match for me. I didn't ask about the # of matches.
I went through a dry run nearly a month before I received this heart. I was prepped, in the OR, sedated, intubated and woke up in the ICU with no new heart. The doctors didn't think it was the right heart for me. Even though it 'passed' all the external and internal testing, they felt it was too sluggish for me. A month later I received the amazing heart I have now. I credit my doctors for knowing me, physically and otherwise, in making that decision.
Take care, Ellen

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@estrada53

Hi @hello1234
They told me (both my nurse coordinator and my surgeon) that this heart was a great match for me. I didn't ask about the # of matches.
I went through a dry run nearly a month before I received this heart. I was prepped, in the OR, sedated, intubated and woke up in the ICU with no new heart. The doctors didn't think it was the right heart for me. Even though it 'passed' all the external and internal testing, they felt it was too sluggish for me. A month later I received the amazing heart I have now. I credit my doctors for knowing me, physically and otherwise, in making that decision.
Take care, Ellen

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Hi Estrada. Where did you have your transplant?

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@estrada53

Hello everyone, I'm not sure who will be able to see this as the thread has truncated a bit.
I'm sharing what I see on the portal (Mayo Phoenix) every time I see my TX doctor. Included in his notes is information he looks at each time and updates in order to best take care of my health. I'm able to access this whenever and share with other clinicians when needed.
These are the parameters they look at for that miracle match for each of us. My donor and I matched in nearly every category. And my heart was from a designated "increased risk donor", which could mean so many different things.
So I didn't find this under tests or any other category, but in my doctor's notes that are posted online.
You will see that my heart's EF ratio was at 50 4 months after transplant but regained 'power' by December and now is at 62.
If you have questions let me know.

Etiology of heart disease, and year: Sarcoid cardiomyopathy diagnosed in 2007.
2. Date of Transplant(s): 01/07/2017.
3. Surgical Technique: Bicaval.
4. Pre-Transplant Mechanical Circulatory Assist Device: None.
5. Donor Facts: Ischemic time 148 minutes.
6. CPRA: 0%.
7. Pre-transplant Desensitization: None.
8. Crossmatch Results: Pre: Negative. Post: Negative.
9. CMV status (D/R): Both positive.
10. EBV status (D/R): Both positive.
11. Cocci History: Donor and recipient were both negative.
12. MTB: Negative.
13. Toxo: Donor and recipient negative.
14. Induction Agent: Thymoglobulin, a total of 125 mg divided by two doses.
15. Cellular Rejection Episodes: None.
16. Antibody Rejection Episodes: None.
17. Donor Specific Antibodies with MFI above 1000: None.
18. CAV: Cardiac catheterization on December 20, 2017, demonstrated normal coronary arteries.
19. Graft Function: May 17, 2017 LV ejection fraction 50%. Normal RV function, no significant valve disease. Large pericardial effusion. Moderate circumferential pericardial effusion. EF 60% by echocardiogram December 27, 2017.
20. Opportunistic Infections: N/A.
21. Cancers: None.
22. AlloMap Surveillance Candidate: Yes, but insurance difficulties.
23. Current Immunosuppression Goals: Long-term prednisone for sarcoidosis.
24. Transplant-related Medical Co-morbidities and Complications: Hypertension.
25. Primary Care Provider: Dr. Sheini at La Paloma Northwest Physicians.
26. Primary Cardiologist: Robert L. Scott, M.D., Mayo Clinic.

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You are lucky, your donor had a zero rating on the antibodies (which tells me, I think, that donor was never pregnant which is why). Toxo negative for both recipient and donor. Those are really good things that keep you from rejection. I, too, will need (if I understand correctly) a donor that has never had a prenancy in order to not have additional antibodies.

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@jennifer0726

@hello1234 I believe you and I have the same, as if I remember correctly I have a 5 out of 6 mismatch, but with no adverse reactions. (when our blood was mixed) I think the “no adverse reactions is the most important part. I haven’t had any rejection in my first two biopsies post tx, but will see what happens at my 2 year appointment the end of November. My point is, just because you don’t have a perfect match it doesn’t necessarily mean rejection.
They would not give us the tx if they anticipated rejection. Maintaining their success rate is very important to a transplant center, second only to wanting the best for their patients in my opinion. Hugs to all.

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Hi Jennifer. Your words have given me more hope that my transplant will go alright. Everything I read in medical journals concerning my HLA is not favorable. I am Class 1 and Class 2 w/ HLA DQ. They say the number of these antibodies is low enough to keep it under control, but I dunno......I have not been able to find any articles that speak favorably to HLA DQ lung transplants.

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@hello1234

Hi @windwalker 😊
Did your doctor review your HLA panel with you or did you read it on your portal?
What information did it reveal and why do you think it it "horrible"?
I haven't been able to see my information (or get a copy for my local nephrologist) but I was verbally told that I have "1 in 6 matches".
My local nephrologist told me that Mayo definitely has the information and I should continue to request it for him.

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Hello1234, the transplant surgeon went over the HLA results with me. He did say that it would be like finding a needle in a haystack to find a crossmatch for me. I am Class 1 and Class 2 HLA DQ2. That is not a good thing, although, they tell me that the number of the bad antibodies are low enough to not be that concerned about it. But I am. To add to my worry, they had me meet twice with a Palliative Care nurse, which I do not think most transplant see before they are actually listed. If you Google that HLA info I am posting,; you will read that it can be a tricky deal.

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@windwalker

Hi Estrada. Where did you have your transplant?

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Mayo Phoenix.

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Here is what I was made aware of for a kidney transplant to be successful : apart from PRA values & overall health & Life style.

Analysis @ OPTN/UNOS registry suggests the number of HLA matches and not mismatches is a stronger independent predictor of kidney transplant survival.

Typically you cannot have a match in Class I HLA ground unless the donor is within the same family (same parents)
In my case I had 2 matches in Class II ( my wife was the donor)

So far so good completed 3 years in July,

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I had a pancreas transplant nearly 17 years ago. It was not at a Mayo transplant center. At the time, the coordinator told me there was an organ available with a 3 out of 6 match. Nothing was said about the “quality” of the match or anything as detailed as what @estrada53 provided above. There was no such thing as a portal. I asked the coordinator my all time favorite question “if it were you, would you do this?”. She responded “yes, this is a good match”.
The pre-transplant evaluation seemed great at the time. I was thrilled with the transplant itself. Post transplant I was followed with labs to watch for signs of rejection. These were decreased over time from daily to once every three months. I felt I was being followed pretty well (for about 6 months to a year). Then I realized that my coordinators had been changed with no notification. One of them wouldn’t even tell me her last name or contact info. They did not know who I was, where I was from, who my local providers were or even what kind of transplant I had had! I had 3 lab tests in a row that showed that my immune suppression was undetectable. This didn’t seem right at all and I had to contact them to ask if a dose change was in order. When my 1 year post transplant anniversary approached I figured I must be due for a follow up or check up of some sort. I had to contact the center to inquire about it. They did not know what I was asking or why. I was told they could schedule an appointment for me if I wanted. A post transplant biopsy wasn’t a thing at all. I’ve never had one!
Fast forward to more recent times. I will need dialysis &/or a kidney transplant at some point. I have switched to Mayo in Rochester. There is no comparison between the pre-transplant evaluation there and the previous transplant center (so thorough and comprehensive). I expect the transplant itself and follow up care (when the time comes) will far exceed my previous transplant experience in quality.

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