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

Posted by hello1234 @hello1234, Sep 6 12:46pm

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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Hello everyone.
@hello1234, you ask an important question because much of recovery and health is influenced by the donor/recipient match. I am a heart transplant recipient from January 2017.
I am able to see the HLA panels, how long the heart was out of the donor's body before transplant, and other interesting facts in my account on the Mayo portal. I don't remember receiving any packet, but the doctors knew I always use the portal.
Have you checked information on the portal?
Ellen

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@estrada53

Hello everyone.
@hello1234, you ask an important question because much of recovery and health is influenced by the donor/recipient match. I am a heart transplant recipient from January 2017.
I am able to see the HLA panels, how long the heart was out of the donor's body before transplant, and other interesting facts in my account on the Mayo portal. I don't remember receiving any packet, but the doctors knew I always use the portal.
Have you checked information on the portal?
Ellen

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Hi @estrada53 😊
Thank you so much for jumping in! I looked through the lab and test results on the patient portal and told my local nephrologist that I couldn't find it. Is this information located under a different category or labeled differently on the patient portal?
If you could help me with finding this information on the portal for him that would be wonderful! I have an appointment with him on Monday 😊

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Good morning @estrada53 😊
Can you please tell me how to find this information on the patient portal?
Thank you so much!

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@hello1234

Hi @estrada53 😊
Thank you so much for jumping in! I looked through the lab and test results on the patient portal and told my local nephrologist that I couldn't find it. Is this information located under a different category or labeled differently on the patient portal?
If you could help me with finding this information on the portal for him that would be wonderful! I have an appointment with him on Monday 😊

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Estrada53, you can ask your transplant team to post it in the portal for you. Sometimes, you have to hunt and peck to find test results because there are abbreviations etc for labwork and you may not recognize it for what it is. I didn't see my Labwork for HLA in my portal, but when I shared my portal with a doctor from a different institution; he was able to pull up that info. from my portal. It may be that only certain things get posted on the portal for our laymen eyes. You should ask your team member about it. It is good info to know, especially if you get offered a less than desirable organ, you can always say no to it.

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@estrada53

Hello everyone.
@hello1234, you ask an important question because much of recovery and health is influenced by the donor/recipient match. I am a heart transplant recipient from January 2017.
I am able to see the HLA panels, how long the heart was out of the donor's body before transplant, and other interesting facts in my account on the Mayo portal. I don't remember receiving any packet, but the doctors knew I always use the portal.
Have you checked information on the portal?
Ellen

Jump to this post

Did you have your transplant done at the Mayo in Rochester? I had heard that at Roch, one can also see the removed organ after you are well enough to have it explained what was very wrong with it. They do not do that at the Florida Campus. I am going to ask at some point that they do it as well. I would love to see my lungs and see WHY they gave me such a hard time all of my life. As Dezi Arnez would say "They got some 'splainin' to do."

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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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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.

REPLY
@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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So I guess I shared a lot of personal info! I thought I had deleted my information out of the document, but oh, well.
Please don't sell my profile to anyone! Haha!

REPLY
@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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Yes I have the same thing and it's also a great read to get the actual notes from the transplant itself. Fascinating read and detail of every step during thr surgery. It can take a while to go back that far so i even download some things I found interesting to save to my computer.
Mayo is so up to date on record keeping and all available thru the portal

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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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@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.

REPLY
@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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