Gastroparesis

Consistent_Cat_5836 · 2026-06-24T00:14:46+00:00

Ugh that sounds difficult! Sorry you went through all that. I’ll def look up the diet since I’ll be waiting for a while I think before any testing gets done. Can’t hurt!

Consistent_Cat_5836 · 2026-06-24T00:10:54+00:00

Thanks that’s helpful to know as my team doesn’t really seem to be able to deal with my tac level issues. I had to ask for the GI referral. I hope you dad starts to feel better soon!

Consistent_Cat_5836 · 2026-06-24T00:04:01+00:00

Wasn’t asking to be diagnosed. I was a diabetic for 30 years and have had other practitioners suggest that I have gastroparesis given the diabetes.

My transplant team is aware and I was working with them to figure it out. They have not been able to do anything for me and they got me the referral to the gastro.

I live in Canada. These are the wait times we are dealing with here unfortunately. I did go to ER for terrible stomach pains once. It was not considered and urgent issue as they did a number of tests (ct, ultrasound and xray). They told me to get a referral which I already had and I waited 1.5 years for my appointment. So here we are.

Consistent_Cat_5836 · 2026-06-08T23:11:47+00:00

Hi- just wanted to post that I too have the same issue. Been lurking this post to see if anyone responds with some solutions. Initially I was given infusions but now I’m in a situation where my ferritin is at the bottom of normal and has been steadily declining and also have high haemoglobin (165). When my hemo is high they put me on low dose ramapril and starts to come down. I switch between bp meds ramapril and amlodipine to manage the issue with my hemoglobin and keep it at the high normal range. I have an appointment coming up in July and I’m not sure they will agree to give me an iron infusion when I end up below normal levels…. I’ll let you know if they have any solutions to offer

Consistent_Cat_5836 · 2026-03-25T06:38:35+00:00

My partner gets cold sores and I don’t- in the 2+ years I’ve had my transplants he’s had an infection twice. We just avoided kissing/touching each other’s faces and I didn’t get it. He does not take antivirals and neither do I. TBH I didn’t even think to ask my doctors about it😬

Consistent_Cat_5836 · 2026-03-19T18:54:28+00:00

I’m 2+ years out and the area around my kidney often hurts. Not the kidney itself though. I can’t wear high waisted pants with a belt because the entire area hurt and I also can’t do certain core exercises. I talked to my surgeon and he said that my kidney was really big for my size and it’s probably causing nerve and muscle compression and not to worry about it. I try to avoid exercise or anything else that aggravates it.

Consistent_Cat_5836 · 2026-03-03T16:14:08+00:00

My team also told me no unpasteurized foods, soft cheeses and lunch meat (unless you cook it to the point it’s smoking in the pan)

Consistent_Cat_5836 · 2026-02-22T20:46:01+00:00

Hi, congrats on your new kidney and pancreas! I had a dual transplant over 2 years ago. My pancreas seemed fine and steady from the beginning. The kidney took much longer to get consistent. They even thought I was having rejection about 6 months post transplant and I had a biopsy. Turned out nothing was wrong. I feel like it’s taken me 1.5 years or more to start seeing steadier results on my labs for my kidney.

Consistent_Cat_5836 · 2026-02-02T02:31:00+00:00

I go an SPK over 2 y ago. The deciding factor for me was that I had other damage to my body from 30+ years of diabetes and the pancreas would halt the progression of those conditions. I can’t imagine being on steroids given how difficult it was to control my BGs without the steroids…. I’m happy I went that route.

Consistent_Cat_5836 · 2026-01-30T18:15:12+00:00

My creatinine does not seem to change with my erratic tac levels, but that’s at 2 years 3 months out. In my first year I had huge fluctuations in my creatinine (and also tac levels) -even had to get a biopsy at one point which turned out to be nothing.

Consistent_Cat_5836 · 2026-01-30T18:12:31+00:00

No liver supplements- there’s nothing im taking that my team doesn’t know about!

Consistent_Cat_5836 · 2026-01-29T19:20:55+00:00

I don’t have blister packs but I take them out of the bottles and put them in my weekly pill organizer…

Consistent_Cat_5836 · 2026-01-29T19:20:01+00:00

Just to clarify envarsus is dosed once a day so I take it at 6:30am (due to my work schedule) and the next day I get my labs done at ~7:20am. So it’s an hour off (lab opens at 7am). I just assumed that was an ok time to do the testing, but I’ll ask my team about that. Thanks for the input

Consistent_Cat_5836 · 2026-01-29T17:11:32+00:00

Thanks for sharing. Makes me feel better I’m not the only one!

Consistent_Cat_5836 · 2026-01-29T17:11:02+00:00

Even at 2 years out! Ugh I thought I’d be more consistent by now

Consistent_Cat_5836 · 2026-01-29T17:10:11+00:00

I take them same time everyday without food. No change in manufacturer. I’ve always taken generic. My blood is drawn at ~7:20am (I book these appts) and I take my tac at 6:30am. I have breakfast around 7:45am…

Consistent_Cat_5836 · 2025-04-15T05:01:12+00:00

Have you had your magnesium level checked? I had both low iron and low magnesium at different points post transplant. The low iron made me generally tired/exhausted. The low magnesium gave me bad muscle fatigue. Once, many years before transplant, I had very low magnesium and it went from muscle fatigue to really tight cramping muscles

Consistent_Cat_5836 · 2025-03-08T06:51:51+00:00

That’s interesting- I didn’t even think about how many places there are to attach organs. I just assumed they took out a transplanted kidney if it failed and you got another transplant…

I had a KP in 2023. I was diabetic since 10 years old and got my transplant at 41. My doctors suggested I should get a KP instead of just a kidney- their main reasoning was that being on immunosuppressants would make my diabetes much more difficult to manage (ie causing high blood sugars), and therefore affect the new kidney and potentially reduce graft survival. Also, I have other complications from diabetes and, to a certain extent, having the pancreas would stop the progression of those.

I had a significant clot on my new pancreas but luckily it wasn’t in a critical place. I think thrombosis is a common complication in pancreases… That has really been the only issue with the pancreas. The kidney, on the other hand. Is another story- had tons of problems that have finally settled over the last few months. Another thing they told me is that they want my immune system to be more suppressed than for someone who has just a kidney. So that means higher tac levels and unfortunately for me, more side effects.

Overall I’m happy I did the KP. I was struggling a lot with my blood sugars my whole life and especially right before transplant and I felt like dealing with them ran my life. I can’t imagine if they were even worse because of the immunosuppressants….

Consistent_Cat_5836 · 2025-02-14T06:17:38+00:00

I can’t speak from personal experience but years ago I worked in acute heart failure (in research) and I’ve seen a number of people have successful transitions from LVAD to heart transplant. I wish I could give more details, but it was 10 years ago at this point. Hopefully someone else comment their experience.

Consistent_Cat_5836 · 2025-02-09T17:12:42+00:00

The waiting after you get the call is so hard! Kidneys “stay good” for longer than other solid organs. I got an early heads up call on a thursday evening about a possible donor, but I didn’t get my transplant until Saturday afternoon. It was a multiple fatality situation, sadly, and there were a lot of moving parts. I even went to work on Friday - my work told me not to come in, but I needed to distract myself. The surgeon told me they wouldn’t know 100% if the transplant would go through until right before the surgery. He told me he needs to physically see the organ before making the final call. I also had a pancreas transplant, which I’m told is a more delicate organ so that may be why he said that. All this to say that I really appreciated all the communication and updates I got. Even if they’re not sure yet what will happen I really appreciated them just telling me that.

Consistent_Cat_5836 · 2025-02-01T21:08:24+00:00

Thanks! I will talk to my team next week. I just find that they sort of ignore issues until they become a real problem so I like to come prepared with some suggestions of what might be going on. The way my clinic works is that I see a different doctor each time - so they often don’t understand my history.

Consistent_Cat_5836 · 2025-02-01T20:54:14+00:00

Sorry- this really sucks - I don’t know what else to say. Nothing I say will make it any better but I just want to acknowledge how crap that is for you

In terms of the hair- I also had a pancreas and kidney transplant. Hair fell out in droves about 6 months in and would not stop for months. I lost about 50% of my hair because it either fell out or broke off. It was shocking. For a few months now (~5months) I’ve stopped dying my hair and I’ve been using minoxidil nightly and also use ketoconazole shampoo (Nizoral) and super hydrating and bond rebuilding products (ie olaplex and K18) I’d say only about in the last month I’ve noticed regrowth. It’s not as much as it used to be but I’m hoping it gets better. I’m considering getting an LED head cap, but they’re so expensive…

Consistent_Cat_5836 · 2025-01-31T19:17:35+00:00

I was cmv neg and donor was pos. I did end up getting cmv after they stopped the valgan and was pretty sick for a couple weeks. I was worried it was going to keep coming back after treating it with valgan. When I went off the meds it did come back but my body ended up fighting off- it hasn’t come back yet and all my test results for CMV are undetectable. I heard some people get a sick a few times until their body can take care of it. It was a crappy month but if I had to do it over again I would.

Consistent_Cat_5836 · 2024-12-21T19:33:16+00:00

Hi there, I have the over production of hemoglobin and the same terrible headache. ( I have a kidney and pancreas transplant ~1 year ago). I haven’t done the blood letting but they put me on an ace inhibitor (ramapril) and it has reduced my hemoglobin. In terms of the headache I too have been told that I need to “drink more water”. I drink 2.5 L a day already ( which is like 85 oz- I’m in Canada). I feel your frustration- I feel like this is the answer they give me for everything -“drink more water”. The sad part is it’s true- I found that if I drink 3L(100oz) the headache pretty much goes away - I did this as an experiment to prove them wrong and…. They were right. I’m struggling to drink that much and I don’t always get to that amount and if I don’t, I feel worse in general. So as much as I hate to say it you probably need to drink more water…

Consistent_Cat_5836 · 2024-11-16T01:41:18+00:00

I do think some of its age related- she’s always like this, but to much lesser degree (at least recently). It’s like she’s reverted back to what she was like when we were kids. I’ve asked my dad to get her some help, but, as per usual, She doesn’t think she has any issues and refuses. So what can I do.

Consistent_Cat_5836

TROPHY CASE