Setbacks, frustrations, and opinions needed.

[MissFrizz]

So... I know this is a long process and setbacks are typical.  I thought we were just waiting for a surgery date, but everything went downhill today.

My Dad's cardiologist told him that he would not approve him for surgery until 1 year after the date of his heart attack, which was last June.  So... we're in a holding pattern until June.

Today, I had a scheduled phone call with the surgeon to talk about my future risk of developing diabetes.  He didn't tell me anything that I didn't already know.  I have a 40% chance of developing it and typically, of those 40% of the population, about 27% develop renal disease.  Of course, I need to consider this, but the effects of living with 1 kidney and being diabetic do not seem any more significant than having 2 kidneys.  Plus, and this might sound odd, being a donor puts you at the top of the recipiant list, so in my mind that would be better. 

So, I guess I have a decision to make, and I'm unsure about everything.

Does anyone have any links about donors developing diabetes?  Or does anyone want to share their opinion?  If you were 40% likely to develop diabetes but you currently take good care of yourself, would you still donate?

[sherri]

Miss Frizz,

As living donors we all take risks. It is up to each individual to weigh how much risk they want to take and that is the difficult part especially when donation involves a family member. We become much more vulnerable. Have you discussed this with your own personal physician or with a doctor not involved with the transplant hospital? they may be able to shed some more light on the subject. In a way having the surgery pushed off until June will give you some more time to research. Do you have young children? Is this something that would come into your decision? Transplants from parent to child seem to follow the course of nature. Adult children donating to a parent especially one who is older (and everyone's definition of older is subjective) sometimes evokes different feelings. The adult child feels pulled because they love their parent and want to honor them but will that negate their responsibilities as a parent themselves.

In terms of the diabetes you were told you have a 40% chance of developing it. Does that mean even if you watch your diet for carbs and sugar and exercise daily you still have 40% chance because of your genetics? Lifestyle changes are hard and difficult to maintain also. So you may have to think about that. In terms of having one kidney and diabetes you may need to get some more information. Our lone kidney has to work harder in order to maintain adequate kidney function for our body's. We give away 50% of our nephrons (the filtering part of the kidney which filters waste) and our remaining kidney compensates till about 70 -75% if I understand correctly. Any insult added to that already compromised kidney makes it harder for it to function. So yes, having 1 or 2 kidneys does matter if you do develop diabetes. Best to check with a nephrologist for all the information. Surgeons tend to be very good with the surgery aspect but a nephrologist may be able to shed a little more light on the subject.

In terms of going to the top of the recipient list as a donor seems to be a little misunderstood. I believe you earn 4 extra points for being a donor and that is only in your region so you still wait but maybe not as long as someone who is starting out. There is a website which gives a lot of statistics about living donation and doesn't paint as rosy of a picture as some places. It might be good to just go through it for the statistics since you asked. This is the link about living kidney donors who suffered from end stage renal disease and ended up on dialysis or transplant list.
http://www.livingdonor101.com/kidney-failure-risk.shtml . Also African American have a much higher risk of diabetes and kidney disease than whites.

As a family donor it was really hard for me to decide to do this. Obviously, I have a family history of kidney disease, high blood pressure and my brother also developed diabetes 2 years after his transplant. We have a history of cancer (my mom had uterine cancer) so I was and still am very anxious about my health. It is 4 years since the surgery and I work diligently about keeping myself healthy.It is a constant battle to watch my weight, exercise, watch my salt intake etc. I am fearful of aging and not being able to use NSAIDs for pain or having to have tests with contrast dyes. As a living kidney donor I have a slightly higher chance of my blood pressure going up. I watch for this as well.

What does your Dad think about you donating? Does he feel comfortable accepting a kidney from you and is he aware of the statistics for you to develop heart disease, diabetes, high blood pressure and kidney disease. I think both donor and recipients need to know each other's statistics to make an informed decision.

The little extra time might be helpful and also will give the time needed to make sure your Dad is healthy enough to undergo surgery especially after his heart attack.

Keep us posted,

Sherri

[Fr Pat]

Dear "Miss Frizz",
     Just to add abit to what Sherri correctly posted above. If you donate a kidney and then later need a kidney transplant you would (if you correctly register that data) get 4 extra points which would move you higher on the waiting list for a deceased-donor kidney. In some regions those 4 extra points would mean substantially shortening your waiting time, in other regions much less so, but is is a notable advantage. In the not-very-common situation where a non-directed donor offers at your hospital to donate to anyone who needs a kidney the hospital COULD make you the first choice to receive that kidney as there is at present no obligatory way of choosing the recipient for such donations. But the chance of that happening is rather small. But, as Sherri noted, you do not automatically go to the "top" of a waiting list.
      Best wishes,
         Fr. Pat

[MissFrizz]

Thank you for the quick and informative responses.  I do have 2 small children, and they are the biggest factor.  I promised myself at the beginning of this journey that if there was even a hesitation about my health following the transplant, then I could not follow through.

That 40% is in light of the fact that I had gestational diabetes with my first child.  Since I did not have it with my second child, they still consider me a viable candidate - according to THEIR nephrologist.  It is my understanding that if I continue to take good care of myself and get annual checkups to test for the onset of diabetes, that I will be fine.  But, after reading your response, Sherri, I've decided to schedule an appointment with my regular GP to ask her questions.

I'm so glad you both clarified the "points" issue as it was stated to me "top of the list."  I was viewing it as putting me in a better position overall. 

And, yes, it is more of a blessing to have the extra time to think.  I am worried that other problems may develop with my dad, though, and hoping he can stay healthy enough until then.

[sherri]

The gestational diabetes mellitis is an issue and I'm sure your OB/gyn discussed the increased risk of developing type 2 diabetes later in life due to the GDM. I just did a quick search (I have access to a university research library) and I found two interesting studies on hypertension after GDM and also developing type 2 diabetes. These may be a good starting point to discuss with your family doctor. He/she could even consult with a nephrologist or recommend one to you to speak with since you may have some underlying health issues that need further attention. Doesn't mean you can't continue in the donation process but it is so important for the donor and the recipient to understand the ramifications of an elective surgery. Here at two of the articles and the abstracts.

Good luck with the search. Keep us posted,

Sherri


Increased Risk of Hypertension After Gestational Diabetes Mellitus: Findings from a large prospective cohort study.Detail Only Available(includes abstract); Tobias DK; Hu FB; Forman JP; Chavarro J; Zhang C; Diabetes Care, 2011 Jul; 34 (7): 1582-4 (journal article - research) ISSN: 0149-5992 PMID: 21593289
Subjects: Diabetes Mellitus, Type 2; Diabetes Mellitus, Gestational; Hypertension; Adult: 19-44 years; Female

OBJECTIVE Whether a history of gestational diabetes mellitus (GDM) is associated with an increased risk of hypertension after the index pregnancy is not well established. RESEARCH DESIGN AND METHODS We investigated the association between GDM and subsequent risk of hypertension after the index pregnancy among 25,305 women who reported at least one singleton pregnancy between 1991 and 2007 in the Nurses' Health Study II. RESULTS During 16 years of follow-up, GDM developed in 1,414 women (5.6%) and hypertension developed in 3,138. A multivariable Cox proportional hazards model showed women with a history of GDM had a 26% increased risk of developing hypertension compared with those without a history of GDM (hazard ratio 1.26 [95% CI 1.11-1.43]; P = 0.0004). These results were independent of pregnancy hypertension or subsequent type 2 diabetes. CONCLUSIONS These results indicate that women with GDM are at a significant increased risk of developing hypertension after the index pregnancy.

Type 2 diabetes mellitus after gestational diabetes: a systematic review and meta-analysis.
Bellamy L - Lancet - 23-MAY-2009; 373(9677): 1773-9
MEDLINE® is the source for the citation and abstract of this record


BACKGROUND: Women with gestational diabetes are at increased risk of developing type 2 diabetes, but the risk and time of onset have not been fully quantified. We therefore did a comprehensive systematic review and meta-analysis to assess the strength of association between these conditions and the effect of factors that might modify the risk. METHODS: We identified cohort studies in which women who had developed type 2 diabetes after gestational diabetes were followed up between Jan 1, 1960, and Jan 31, 2009, from Embase and Medline. 205 relevant reports were hand searched. We selected 20 studies that included 675 455 women and 10 859 type 2 diabetic events. We calculated and pooled unadjusted relative risks (RRs) with 95% CIs for each study using a random-effects model. Subgroups analysed were the number of cases of type 2 diabetes, ethnic origin, duration of follow-up, maternal age, body-mass index, and diagnostic criteria. FINDINGS: Women with gestational diabetes had an increased risk of developing type 2 diabetes compared with those who had a normoglycaemic pregnancy (RR 7.43, 95% CI 4.79-11.51). Although the largest study (659 164 women; 9502 cases of type 2 diabetes) had the largest RR (12.6, 95% CI 12.15-13.19), RRs were generally consistent among the subgroups assessed. INTERPRETATION: Increased awareness of the magnitude and timing of the risk of type 2 diabetes after gestational diabetes among patients and clinicians could provide an opportunity to test and use dietary, lifestyle, and pharmacological interventions that might prevent or delay the onset of type 2 diabetes in affected women. FUNDING: None.

[Orchidlady]

I really can't add anymore that what information has been capably given by Sherri and Fr. Pat.

I just wanted to say that, when we are young, we can have the best of intentions to keep ourselves healthy for the rest of our life, but sometimes circumstances get in the way. I remember being that "slip of a girl" in my 20's vowing that I would never get to that round, "healthy" shape sported by my mother and grandmother. What a surprise when I realized, in my 40's, that you could put the three of us side by side and we would look exactly the same!   As well, my grandfather on my father's side died of heart failure in his early 50's. Congestive heart failure also killed my father, an uncle and an aunt. I am doing everything possible to take care of and monitor heart related issues and overall general health - but who's to say there is not some genetic switch in there that will flip on at some point no matter how healthy I believe myself to be? 

Another point on the living donors and "the list", while you may be at the top for your region, any call would also depend on how well the kidney matches. If you are a difficult match in blood type or antibodies, even as a living donor you could have to wait until a properly matched kidney comes up.

I wish you well Miss Frizz. You have certainly been dealt a difficult set of circumstances to work with on a number of different fronts.  As Sherri advised, do your research, and I sincerely hope that all works out for both you and your Dad.

[MissFrizz]

Good points, all around. So glad I have this board to come to with questions.  Thanks, all.

I have made an appointment with my GP to ask questions and have her connect me with a nephrologist she trusts.  The appointment is a few weeks away.

[BranBas]

I don't know anything about diabetes and donation. I just wanted to let you know that I will be thinking about you and your husband and I truely hope everything works out in the end.

Brandi
http://fromnonetoone.wordpress.com/

[MissFrizz]

Thank you, Brandi, that's sweet.